AIDS Drug Assistance Programs

What would Anderson Cooper say about the promised ADAP funding?

2012-01-27T05:03:00.000-08:00

“Keeping them honest” – where is the money?

The ongoing saga over the number of Americans living with HIV/AIDS being denied access to care under the AIDS Drug Assistance Program (ADAP) belongs on CNN's Anderson Cooper 360. The crisis has been escalating for over two years, full of its share of empty promises, demands for fact-checking, and people -- especially patients -- wondering what to believe. "Keeping them honest" couldn't sum it up any better.

Almost two months ago on World AIDS Day, December 1st 2011, President Obama thankfully promised an additional $35 million dollars that would go to state ADAPs. This money should have already been rolled out. However no state has yet to see any of these additional funds, and the frustration level in the HIV/AIDS community is building.

Also building are the ADAP waitlists in America; which on January 19th, 2012 totaled 4,611 individuals across 12 states waiting to receive the anti-retroviral medication they need to stay alive, remain healthy, and productive. While this number is down from a high of nearly 10,000 last year, once again, the number has steadily been on the uptick.

So what is the hold up? Where is this money? Where is it coming from, and when will it be allocated to the states?

The $35 million dollars is reallocated HHS (Health and Human Services) funds, but before the funds can be reallocated the OMB (Office of Management and Budget) needs to approve. Apparently, saving lives is not at the top of the OMB list. As PLWHA continue to wait for these funds more people will become infected, more people will be put onto wait-lists, states will try to change criteria making it difficult for people to get medicine, and sadly people will likely die.

Once approved by the OMB then states will begin the competitive process of requesting this additional money. The most competitiveness will be among states with waiting list and already implemented cost containment measures. This all takes time. A current guestimate on when this money may start to roll out is not until July 2012!! That would be 7 months from the date of the announcement made on December 1st, 2012!

Did you know on the first day of American intervention in Lybia it cost US tax payers $100 million dollars, and over the three month period from April – July a total of nearly $1 billion was spent on the war with Lybia? Why will it take 7 months to distribute $35 million in reallocated HHS funds to states with people who continue to wait for the medicine they need?

Since Obama took office a robust national dialogue on HIV/AIDS has taken place, the National HIV/AIDS strategy was developed, his administration has increased overall funding to record levels, he re-authorized the Ryan White care act, and eliminated the travel ban on HIV positive individuals entering the United States. He has done a lot of good when it comes to HIV/AIDS, but more must be done here at home. With the 2012 International AIDS Conference coming to Washington, DC, isn't it embarrassing for the United States of America to deny access to care to thousands of patients who desperately need it?

“We are at the beginning of the end of this epidemic” the President said on World AIDS Day 2011, and said on this day that his vision was that “…..every American can get access to life extending care” but that vision, neither is hope in insight for the thousands of Americans that continue to be on ADAP wait-lists.

Ohio ADAP Crisis Shapes Up as Firewall for ADAP Stakeholders Nationwide

2012-01-20T13:27:00.000-08:00

As goes Ohio, so could the Nation. The Ohio Health Department is putting up a strong fight to lower the federal poverty limit from its height of 500% in July 2010, lowered to 300% at that time, to now have the ability to implement a potential income eligibility change to as low as 100 % FPL at any time with no notice to anyone with a stroke of pen. If that rule had gone into effect, it would mean in order to qualify for the AIDS Drug Assistance Program a single individual cannot make more than $10,890 a year in order to be eligible. Further, ODH could implement medical criteria one must also meet. Those given the highest priority will be PLWHA who’s CD4 counts are lower than 201. The medical criterion makes no mention of an important aspect of HIV care which is the Viral Load.

Back on December 14th, three Ohio HIV-Positive advocates with the assistance of The AIDS HealthCare Foundation won an injunction to these proposed rule changes in the Franklin County, Ohio Court of Common Pleas, resetting the FPL to 300%. ODH had proposed one set of rules, had a hearing, and then changed the rules to the above without telling anyone. The judge had ordered ODH to go back to the drawing board…and they did. The end result is the terrible rules listed above.

If the Ohio Health Department lowers the income limit to 100% FPL, nearly 2,600 of Ohio’s PLWHA will be forced off of ADAP (half of the program) , and countless others who will become newly infected will have no access to the medicine they need to remain healthy and alive.

Ohio is trying to implement these rules on the backs of the poor and vulnerable, especially those living with a potentially life threatening disease such as HIV/AIDS.

With today’s medicine PLWHA can lead long productive lives; they are at less risk of developing an opportunistic Infection, and in 2011 a ground breaking study stated those on Anti-Retro viral Therapy (ARV) are 96 percent less likely to pass the virus to their partner.

The Ohio Department of Health is soliciting comments from the public:

The Public notice process is as follows:

1) Public Comment Period- Once the rules have been reintroduced, the Department will solicit public written comments regarding the new proposed rules. This period runs until January 23, 2012

2) ODH Public Hearing- Once the Public Comment period has been completed, there will be a public hearing held in which all interested parties will be able to submit written or provide in-person testimony in support or in opposition of the new proposed rules. This hearing is mandated by the legislature to be within 31-45 days after a rule change is proposed.

3) JCARR hearing- Once an agency has completed the public comment period and has held the public hearing; the rules then go to a legislative committee to ensure that the agency has complied with the law in proposing the new rules. After this hearing, the agency final files to enact the new rules to bring them into effect.

How can ADAP stakeholders help:

Anyone from the United States can send an e mail to HCS@odh.ohio.gov emphasizing concerns over these proposed changes. In the subject line use: Rule 3701-44-03

Click to see ODH proposed Medical Rule Criteria proposed

Click to see ODH proposed changes to financial eligibility

Hershey hate; demand the Hershey's Company intervene to reverse decision on HIV+ student and dismiss school officials

2011-12-09T11:34:00.000-08:00

***Reprinted with permission from RiseUpToHIV***

How sad that this story continues and the school has not reversed course. Each night for the past three nights CNN’s Anderson Cooper AC360 news show has made this a top story and has been giving it a lot of attention. Thank you Anderson. To view a clip of the story that appeared on AC360, click here.

However, this story has fallen out of news media and the public spotlight, we need to press on with story. We must not allow this school and the Hershey's Company to remain silent on this issue. We deserve a dignified and actionable response. Below is my take on this incident and the various information that has been in the news.

The communications director of the school has made numerous on air appearances continuing to support statements coming from the school. Does Connie McNamara, Vice President of Communications at Milton Hershey School really stand behind these statements each night, does she really believe in the words in these statements, and is she THAT uneducated about HIV/AIDS?!? Or, is she trying to keep a job? If I were her I would do the right thing and resign my position immediately. I feel this fear goes deeper into the administration at Milton Hershey and those NOT in support of this decision have a moral duty to walk away, bring down the veil and reveal who the real fear mongers are at this school. It is time for Milton Hershey Trust Company to intervene in this matter!

I cannot believe the ignorance surrounding this story, and why the parents of these children of the school are not in support of this boy?!? Have we really fallen back 20 + years on AIDS education and awareness? I am mad and saddened. If I had the organizing power I would organize busloads of protestors to descend on the school and we would hold out for days, or weeks. If not to force the school to accept this student, but to stand in solidarity with this student as reminder that HIV/AIDS is still around 30 years later, and that this kind of discrimination today, especially in America cannot be tolerated.

I am further outraged that a school founded by the Hershey Co. in 1909 and financed by the Milton Hershey School Trust, which also holds the controlling interest in The Hershey Co. has yet to issue a statement or intervene in this matter. Below is part of the mission statement for the Hershey Co…..

"At The Hershey Company, we make the chocolate brands that people love. Hershey’s Mission Statement, Bringing sweet moments of Hershey happiness to the world every day, summarizes our company, our people, our past and our future. Our history of producing the world’s best treats goes back more than 100 years. We take great pride in our brands and in the fun and enjoyment our products add to the lives of our consumers.

Hershey has a distinguished record of supporting the well-being of children through our relationship with Milton Hershey School. The School was established by the company’s founder in 1909 and provides a nurturing environment, quality education, housing, and medical care at no cost to children in social and financial need. The School is administered by the Hershey Trust Company, Hershey’s largest shareholder, making the students of Milton Hershey School direct beneficiaries of Hershey’s success."

By denying access to this child to the Milton Hershey School, Hershey Co. has gone a 100 year back on its strong values, and distinguished record of supporting the well-being of children. Milton Hershey School and Hershey Co. have put the well-being of this child at risk, and the school and Hershey Co. should be held liable to the highest extent of the law. No longer will I think of Hershey as bringing sweet moments and happiness to the world every day. When I see a Hershey product it will bring me disgust and sadness. I will forever connect the Hershey Co Brand with this horrific display of ignorance.

I have started a petition on change.org asking people to sign and leave a comment, regarding boycotting the Hershey brand and supporting a statement directly from the Hershey Trust Company. Again, if I had the organizing power I would position protestors outside grocery stores throughout the country, asking shoppers to boycott Hershey products; especially during this holiday season.

I can only hope the community of Hershey, PA, surrounding communities, the students and the parents of the school take a stand, by rising up to HIV, dismantle the ignorance that lies deep within this schools administration. As a PLWH and in solidarity with those around the World; we must and will continue to educate the public on the very minimal risks of contracting HIV/AIDS. I would immediately call on and ask the Hershey Trust Company to intervene and issue a statement on this matter.

In the interim I have compiled a list below of all Hershey products you may consider boycotting, and remember to sign the petition!

With sadness in my heart and with hope for a positive outcome,

Kevin Maloney
Founder: Rise Up To HIV
“Voices in Unity Strengthening Community”
Twitter: http://www.twitter.com/riseuptohiv

SIGN THE PETITION

If you would like to write a letter, send an e mail, and/or call the school and the Hershey Company a list of contact information is below:

Milton Hershey School
PH: (717) 520-2000
E-mail: mhs-communications@mhs-pa.org
Admissions 1-800-322-3248
Fax: (717) 520-2117
E-mail: mhs-admissions@mhs-pa.org
Hershey Company
http://sites.hersheys.com/contactus/canada/
(A phone number is listed, and you can fill out an online form choosing which state in the US or where in Canada you are located)

Dagoba
5TH AVENUE
Almond Joy Bars
Breathsavers Pucks
Breathsavers Rolls
BUBBLE YUM
CADBURY
GOOD & PLENTY
Hershey's Chocolate for Baking Bars
Hershey's Cocoa
Sweet & Salty granola bars
HEATH
Hershey's Bars
Hershey's BLISS
Hershey's EXTRA DARK
Hershey's Jar Toppings
Hershey's KISSES
Hershey's Milk & Milkshakes
Hershey's MINIATURES
Hershey's Nuggets
Hershey's POT OF GOLD
Hershey's SPECIAL DARK
Hershey's Sundae Syrup
Ice Breakers FROST
Ice Breakers ICE CUBES Gum
Ice Breakers Mints
Ice Breakers Sours
Ice Breakers Stick Gum
JOLLY RANCHER
Kit Kat Wafer Bars
Mauna Loa Boxed Chocolates
Mauna Loa Mix
Mauna Loa Chocolate Covered Macadamia Nuts
Mauna Loa Cookies
Mauna Loa Macadamia Nuts
MILK DUDS
Mounds Bars
Mounds Sweetened Coconut Flakes
MR. GOODBAR
Shell Toppings
Scharffen Berger
SNACKSTERS
SNACK BARZ
Sprinkles
SUGAR FREE
Syrup
PIECES
Hershey's SYMPHONY
PAYDAY
Reese's Crispy Crunchy
Reese's FAST BREAK
Reese's NUTRAGEOUS
Reese's Peanut Butter
Reese's Peanut Butter Toppings
Reese's Select
Reese's WHIPPS
Reese's Peanut Butter Cups
REESESTICKS
ROLO
SKOR
TAKE 5
Twizzlers Bites
Twizzlers NIBS
Twizzlers PULL N PEEL Candy
Twizzlers Twists
WHATCHAMACALLIT
WHOPPERS
YORK
YOUNG & SMYLIE
ZAGNUT
ZERO

Solutions, not Proclamations, are needed to ‘End The Wait’

2011-12-01T07:16:00.000-08:00

Since 1987, December 1st has been dedicated to raising awareness about HIV/AIDS with World AIDS Day. In 2011, people living with HIV/AIDS in the United States have much be thankful about with respect to the progress achieved over the years. HIV/AIDS is no longer a death sentence with the advent of highly active anti-retroviral therapy (HAART); HIV/AIDS is protected under the Americans with Disabilities Act (ADA); and President Barack Obama was the first president to unveil a National AIDS Strategy to combat HIV/AIDS in America. But not all the news is promising, and there remains much work to be done. Reflecting upon the millions of lives lost in the struggle against HIV/AIDS, it is important to remember that there remains negative stigma associated with the disease; thirty-six states have HIV criminalization laws on the books; and in the wealthiest nation there are 6,595 people living with HIV/AIDS in twelve states on waiting lists under the AIDS Drug Assistance Programs (ADAPs).

People living with HIV/AIDS have come to expect proclamations on World AIDS Day from the President, Congress, Governors, State Legislators, Mayors, City Councils, AIDS Service Organizations, State Health Departments, and so on. Whereas proclamations make us all feel good, they do little to solve the ongoing ADAP crisis that has allowed thousands of people living with HIV/AIDS to fall through the cracks of our public health system. So, it begs the question: What do these proclamations do to help the 75 people in Alabama, 3,213 people in Florida, 1,525 people in Georgia, 5 people in Idaho, 475 people in Louisiana, 9 people in Montana, 9 people in Nebraska, 95 people in North Carolina, 0 people in Ohio, 65 people in South Carolina, 13 people in Utah, and 1,111 people in Virginia presently being denied access to appropriate, timely care and treatment?

While there remain a few ideological "Talibangelicals" who view HIV/AIDS as God's "punishment" for behavior or lifestyle, Americans have mostly opened their hearts and their minds to accepting and helping people living with the disease. By in large, politicians of both political parties have recognized the importance of stable, robust HIV/AIDS programs - including ADAPs. That is why what marks the 24th celebration of World AIDS Day, how can thousands of people living with a potentially life-threatening disease be asked to WAIT for their life-saving medications?

Read related CNN Story, "The long wait"

Yesterday, Senators Richard Burr (R-NC), Tom Coburn (R-OK), Michael Enzi (R-WY) and Johnny Isakson (R-GA) sent a letter to State Department Secretary Hillary Rodham Clinton and Health & Human Services Secretary Kathleen Sebelius seeking to find a solution to the lingering ADAP crisis facing thousands of people living with HIV/AIDS languishing on waiting lists. Their letter comes on the heels of similar requests made by Senator Marco Rubio (R-FL), as well as Representatives Alcee Hastings (D-FL-23), Debbie Wasserman Schultz (D-FL-20), Ted Deutch (D-FL-19), and Frederica Wilson (D-FL-17) to HHS. Each of these lawmakers have been fighting to secure additional federal funding since the crisis started over two years ago.

[Photo: Burr-Coburn-Enzi-Isakson ADAP Letter]

And today, President Obama announced he has directed HHS to increase funding for domestic HIV/AIDS treatment by $50 million, including $35 million to ADAPs. This represents the second time in as many years whereby the President has reprogrammed funding to the cash-strapped program. While the additional funding is welcomed news, it remains short of the level necessary to eliminate the ADAP waiting lists entirely.

World AIDS Day is important because it highlights a disease that continues to impact millions of people in this country, and abroad. The proclamations are important because they symbol the national commitment to eradicate the disease. But more important are the solutions designed to help people (and help people help themselves) RIGHT NOW! After all, it are those solutions that are a true testament to nation's commitment to fight HIV/AIDS!

Deficits vs. Austerity: Where do either leave ADAPs

2011-11-10T05:15:00.000-08:00

Once again, Congress demonstrated that its effectiveness as a governing institution is in serious peril. Congress was unable to complete its Constitutional and Statutory duty to approve a federal budget and send it to the President for his signature. Annually, thirteen appropriation bills must be passed by Congress prior to the end of the fiscal year, which ends on September 30th. They fund those programs, projects and activities that operate within the discretionary sector of the Federal budget - including the AIDS Drug Assistance Programs (ADAPs) under the Ryan White Program. The federal government is now operating under a short-term spending authorization - otherwise known as Continuing Resolution - but it certainly leaves the fate of funding for the cash-strapped ADAPs up in the air.

Article I, Section 9, Clause 7 of the Constitution provides that "no money shall be drawn from the Treasury but in Consequence of Appropriations[.]" More accurately however, it can be characterized like making sausage.

In recent history, Congress has been forced to lump a litany of federal programs together during a messy, non-transparent legislative process...ending with an "Omnibus" spending package. Omnibus spending bills provide both opportunities and challenges for important federally-funded programs. But in the current fiscal environment, many HIV/AIDS advocates are concerned that needed funding increases will fall by the wayside.

In fact, there is already some indication that programs like ADAP could be facing even harder times. The House Appropriations Committee earlier this year released its draft fiscal year 2012 Labor, Health and Human Services (LHHS) Appropriations. The spending bill includes federal funding for programs within the Departments of Labor, Health and Human Services, Education, and other related agencies.

Upon releasing its LHHS spending bill, House Appropriations Chairman Hal Rogers said, “Many of the programs and services funded in this bill protect the health and safety of the American people and provide assistance to the most vulnerable among us. However, excessive and wasteful spending over the years has put many of the programs and agencies funded in this bill on an irresponsible and unsustainable fiscal path. To protect critical programs and services that many Americans rely on – especially in this time of fiscal crisis – the bill takes decisive action to cut duplicative, inefficient, and wasteful spending to help get these agency budgets onto sustainable financial footing.”

While most observers agree that something needs to be done about the ballooning federal deficit, it begs the question whether deficit spending or austerity measures are more harmful to the public safety net. Are the current 6,489 people living with HIV/AIDS being denied access to appropriate, timely care and treatment "duplicative" as described by Rep. Rogers since the Committee proposed no new ADAP funding?

With respect to Ryan White the draft appropriations bill reads:

"For carrying out title XXVI of the PHS Act with respect to the Ryan White HIV/AIDS program, $2,311,665,000, of which $1,980,670,000 shall remain available to the Secretary of Health and Human Services through September 30, 2014, for parts A and B of title XXVI of the PHS Act, of which not less than 25 $885,000,000 shall be for State AIDS Drug Assistance Programs under the authority of section 2616 or 311(c) of such Act: Provided, That in addition to amounts provided herein, $25,000,000 shall be available from amounts available under section 241 of the PHS Act to carry out parts A, B, C, and D of title XXVI of the PHS Act to fund Special Projects of National Significance under section 2691."

ADAPs under this scenario would be flat-funded, despite thousands of people living with HIV/AIDS languishing on waiting lists in twelve states. Carl Schmid, Deputy Executive Director of The AIDS Institute, summarized this Republican-backed approach accurately when he said, "If ever passed, this spending bill would set back the progress we are making in preventing HIV and providing basic care and treatment for those who have HIV/AIDS in our country."

According to the National Alliance of State & Territorial AIDS Directors (NASTAD) there were 6,489 individuals in 12 states on ADAP waiting lists, as of October 27, 2011 - including 44 individuals in Alabama, 3,260 individuals in Florida, 1,415 individuals in Georgia, 2 individuals in Idaho, 489 individuals in Louisiana, 11 individuals in Montana, 8 individuals in Nebraska, 78 individuals in North Carolina, 0 individuals in Ohio, 60 individuals in South Carolina, 31 individuals in Utah and 1,091 individuals in Virginia.

The House legislation would not only flat-fund ADAPs, but also cut certain prevention programs and ban federal funding of syringe exchange programs. Unfortunately, things don't look much better on the Senate side either. When the Senate Appropriations Committee passed its FY12 Labor, Health and Human Services, Education and Related Agencies Appropriations bill, it proposed only a $15 million increase for ADAPs despite the waiting list crisis. Fortunately, other HIV/AIDS-related programs were not cut in the Senate's pending version.

In the final analysis, thousands of people living with HIV/AIDS on ADAP waiting lists will be looking to the Congress...and President Obama...to address this ongoing crisis by making sound decisions on fiscal policy and public health, which aren't mutually exclusive. Whether it's deficit spending, or austerity measures steps need to be taken by the leaders in Washington, DC to enhance the AIDS Drug Assistance Programs. Period!

Patient Assistance Programs: What Patients Need to Know

2011-10-21T11:38:00.000-07:00

The AIDS Drug Assistance Programs (ADAPs) are in a state of emergency. According to the National Alliance for State and Territorial AIDS Directors (NASTAD), wait lists have tripled by state and increased by over 1,000% by count since the beginning of 2009. Furthermore, state budget cuts in AIDS programs to the tune of $167 million has truly shaken ADAPs nationwide – but especially in the ten (10) states that were forced to institute waiting lists. In 2000, Congress appropriated seventy-two percent (72%) of the federal ADAP earmark; a number which fell to fifty-four percent (54%) in 2009, and below fifty (50%) percent in 2010. This severe drop in the federal commitment to ADAP – in addition to state budget crises – has largely been the catalyst for the spike in HIV patients placed on wait lists since the start of the crisis. It is anticipated that additional states will have to implement some form of cost containment measure in the upcoming months, including wait lists. In light of the present predicament, educational programs designed to link stakeholders to available resources – including prescription assistance programs and co-payment assistance programs – are urgently needed. Only through a coordinated effort of public-private resources can the wait list crisis be averted.

The problem of growing ADAP waiting lists is exacerbated because the United States is facing an HIV/AIDS epidemic of devastating proportion. According to some estimates, the number of people living with HIV/AIDS in the United States exceeded two million people by of last year. These numbers are not due to decrease in the near future. In 2006 alone, the Centers for Disease Control & Prevention (CDC) estimated that there have been more than 56,000 new HIV infections per year for the last decade. If this was not severe enough, the disease is far from color blind. Currently, the incidence rate of new HIV infection among African American men and women is seven times that of the Caucasian population. Furthermore, racial disparities are echoed regionally as the epidemic has seen its most recent unfettered growth in Southern states, which often times have smaller state budgets and fewer access points to comprehensive care.

The good news is that with the advent of new medicines, people living with HIV/AIDS are able to live full and productive lives. The bad news is that it is increasingly difficult for people living with HIV/AIDS to afford their medications. Life saving medications can cost a single patient up to $20,000 per year. This is compounded by the fact that nearly three quarters of all people with HIV/AIDS are either uninsured or dependent on public insurance. This makes strengthening the public HIV/AIDS healthcare system of critical importance – but in the meantime efforts should concentrate on eliminating the wait lists.

With ADAP budgets stretched to the limit, other resources are needed to help plug the gap. Enter prescription assistance programs (PAPs) and co-payment assistance programs. Pharmaceutical company PAPs make available free or low-cost medications to eligible patients, while co-pay programs provide financial assistance for certain health care costs to patients who qualify financially and medically.

PAPs are designed to support low income U.S. residents with free or low cost prescriptions. The programs usually cover brand name drugs only and are administered individually by the pharmaceutical companies that manufacture the drugs. PAP programs are administered differently by manufacturer and sometimes by drugs within the same manufacturer. In most cases the programs are designed around income guidelines. Most often income has to be below or just above the poverty guideline set by the federal government. There are some companies that go as high as 2-3 times the poverty guidelines. The majority of the programs require the patients to be U.S. residents, be uninsured, and meet the income requirements. Income verification in the form of W-2, 1099, pay stub, etc. must be provided, as well as any benefit statement received. There are exceptions to these requirements. Some programs, for example, allow insurance but no drug coverage, Medicare D recipients are eligible in some cases. Each program has specific eligibility requirements with some are more stringent than others.

There exists an immediate need in ten states - plus numerous others - to link stakeholders with these two important resources. NASTAD is now reporting 7,299 individuals are currently on ADAP waiting lists, as of October 13, 2011 – including 3,389 people in Florida, 1,763 people in Georgia, 5 people in Idaho, 790 people in Louisiana, 11 people in Montana, 58 people in North Carolina, 0 people in Ohio, 18 people in South Carolina, 51 people in Utah and 1,044 people in Virginia.

In response to this growing crisis, please participate in a training on the state of the epidemic and what can be done to help. The ADAP Advocacy Association (aaa+), in coordination with the Community Access National Network (CANN), HealthHIV, AIDS Alabama, Broward House and the Great Lakes ADA Center – which all work to ensure access to care and treatment for every person with HIV in need – is extending this invitation to all ADAP Stakeholders nationwide to gain a fuller perspective from the pharmaceutical companies about how their prescription assistance and co-payment assistance programs can address the many issues confronting people living with HIV disease on wait lists.

The “Accessing & Understanding HIV/AIDS Patient Assistance Programs” virtual trainings are being held to raise awareness about pharmaceutical patient assistance programs (PAPs), in an effort to alleviate the ongoing ADAP crisis. There will be an introductory training for ADAP stakeholders who have little or no knowledge about PAPs, and an advanced training for ADAP stakeholders who are well versed with PAPs, but seek additional information.

Registration is free!

To learn more, or register, please visit http://www.adapadvocacyassociation.org/events.html.

International AIDS funding vs. Domestic AIDS funding; POTUS must act NOW!

2011-09-29T07:32:00.000-07:00

When the President's Emergency Plan for AIDS Relief, or PEPFAR, was enacted in 2003 under President George W. Bush, there was an international AIDS crisis facing the world. However, people living with HIV/AIDS (PLWHAs) in the United States were not immune from it because they were facing potential funding cuts to HIV/AIDS programs, as well as growing waiting lists under the AIDS Drug Assistance Program (ADAP). Today the story is unchanged; in fact, the AIDS crisis in America hasn’t been as dire since the epidemic began 30 years ago. How is it that America can spend BILLIONS in U.S. taxpayer dollars on overseas initiatives under PEPFAR, but cannot find approximately $100 million to alleviate the current ADAP crisis in the United States? Have American PLWHAs have fallen by the wayside under the Obama Administration’s handling of our domestic AIDS crisis, most notably with ADAP waiting lists reaching record high levels?

The outcries from numerous organizations, PLWHAs, their friends, family and loved ones have grown into one voice...one movement...with one goal. Their purpose is to bring awareness to the AIDS crisis in America with the achievable goal of ENDING the ADAP crisis now! When will POTUS and other leaders in Washington recognize the problem and finally ACT on it in a substantial and meaningful way?!? The crisis is not going away, and neither are HIV/AIDS advocates!

So, what is PEPFAR?

Launched in 2003 by President George W. Bush with strong bipartisan support, PEPFAR is America’s commitment to fighting the global HIV/AIDS pandemic. Through shared responsibility and smart investments, PEPFAR is saving lives, building more secure families and helping to stabilize fragile nations.

No one is questioning the need for PEPFAR!

How is PEPFAR funded?

With the generous support of the American people (through taxpayer dollars), the U.S. Government has committed nearly $46 billion to bilateral HIV/AIDS programs, the Global Fund to Fight HIV/AIDS, Tuberculosis and Malaria, and bilateral TB programs through fiscal year (FY) 2012.

PEPFAR’s success is measured in lives improved and saved.

➢ In fiscal year 2010, PEPFAR directly supported life-saving antiretroviral treatment for more than 3.2 million men, women and children worldwide, up from less than 2.5 million in 2009.
➢ PEPFAR directly supported antiretroviral prophylaxis to prevent mother-to-child HIV transmission for more than 600,000 HIV-positive pregnant women in fiscal year 2010, allowing more than 114,000 infants to be born HIV-free.
➢ Through its partnerships with more than 30 countries, PEPFAR directly supported 11 million people with care and support, including nearly 3.8 million orphans and vulnerable children, in fiscal year 2010 alone.

PEPFAR is making smart investments to improve lives, build more secure families and help stabilize fragile nations. With continued support from the U.S. Congress, PEPFAR will be able continuing working towards the goals of treating more than 4 million people, preventing more than 12 million new HIV infections, and caring for more than 12 million people, including 5 million orphans and vulnerable children.

➢ For FY 2011, President Obama has requested nearly $7.0 billion, including nearly $5.74 billion for bilateral HIV/AIDS programs, $1 billion for the Global Fund, and $251 million for bilateral TB programs.
➢ For FY 2012, the President is requesting nearly $7.2 billion, including nearly $5.6 billion for bilateral HIV/AIDS programs, $1.3 billion for the Global Fund, and $254 million for bilateral TB programs.

While international efforts are laudable, and the ROI is huge, domestic funding for HIV/AIDS services and supports are severely underfunded. If POTUS does not act, then many PLWHAs fear a flashback to the 80’s...people dying. This time not because there are no medicines to treat the disease, but because we have insufficient funding to put these medicines in the hands of the people who need them. This is unconscionable, and begs the question...is this American?

And no one is questioning the need for America to fund PEPFAR!

CLICK HERE to read "THE INTERNATIONAL vs. NATIONAL DEBATE: Is the President’s Emergency Plan for AIDS Relief (PEPFAR) international commitment to combating HIV/AIDS succeeding at the expense of those people living with the disease in the United States?"

Is PEPFAR is an unfit parent who feeds her neighbors as her own family goes hungry?

Through FY2012 under PEPFAR, U.S. taxpayers will have spent 46 billion to support this initiative. Is it wrong to think that the U.S. could have funneled some of that money over the past 9 years into domestic HIV/AIDS initiatives, such as treatment, prevention, research, and other services for PLWHA under the Ryan White Program? Increasingly, many PLWHAs are asking this very question!

Federal appropriations for the Ryan White Program FY2012 equate to $1.3 billion, and AIDS advocates are asking for an increase of $106 million just to maintain ADAP; though this would not be enough to end the ADAP wait-lists. An increase of $360 million is needed to maintain ADAP programs and fill the structural deficits that have built up over the last several years. Is 7.2 billion in taxpayer money appropriated under PEPFAR and $1.3 billion under the Ryan White program fair? Why would U.S. taxpayers, and especially American PLWHA not be outraged?

Further egregious, last week in an effort led by New York's junior Senator Kirsten Gillibrand, 18 U.S. Senators sought to immunize the Global AIDS funding from cuts threatened by the impending showdown over the national budget and deficit committee. The letter is signed by Kirsten Gillibrand, Richard Durbin (D-NY), Barbara Milkulski (D-MD), Daniel Akaka (D-HI), Dianne Feinstein (D-CA), Barbara Boxer (D-CA), Ron Wyden D-OR), Mary Landrieu (D-LA), Charles Schumer (D-NY), Frank Lautenberg (D-NJ), Bernard Sanders (I-VT), Sheldon Whitehouse (D-RI), Tom Udall (D-NM), Ben Cardin (D-MD), Jeff Bingaman (D-NM) and Christopher Coons (D-DE).

Do they know that this is the 30th year of the AIDS epidemic in America? Are they aware of the domestic AIDS crisis? Are they aware that the impending funding cuts could put the lives of PLWHAs in America at risk? Are they aware of the rich history of AIDS in America and the advocates who marched...who protested...who fought for future generations; all the while watching dozens upon dozens of friends die, and they themselves on the brink of death?

So again, is it wrong for Americans living with HIV/AIDS to look in their own ‘backyards’ before looking overseas?

Inaction and silence WILL = death of countless PLWHA in America. Mr. President, 1.2 million Americans living with HIV/AIDS, their friends, family, and countless advocates; with one resounding voice they ask you to intervene in this crisis, the time to ACT is NOW!

Please sign the petition on change.org requesting that the POTUS and Congress work together to divert 15-20 percent of PEPFAR funds to domestic HIV/AIDS programs: http://www.change.org/petitions/divert-15-of-international-aids-relief-money-to-help-american-plwha.

Blog by Kevin Maloney, ADAP Advocacy Association member from Clifton Park, NY

________

Sources:

http://www.pepfar.gov/documents/organization/80161.pdf
http://www.adapadvocacyassociation.org/pdf/2009_Domestic_AIDS__04.06.pdf
http://www.nastad.org/Docs/100316_FY2012%20Ryan%20White%20Funding%20Needs%20B.pdf
http://www.dailykos.com/story/2011/09/22/1018932/-Senator-Gillibrand-Leads-18-Senators-To-Protect-Global-AIDS-Funding

As goes ADAP, so goes Ryan White programs

2011-09-24T05:50:00.000-07:00

In politics there is a saying, "As goes Maine, so goes the Nation" that dates back to 1888, stemming from an age-old saying used to describe the state's reputation as a bellwether state in presidential politics. That year, Maine voted for the Republican nominee Benjamin Harrison who won the presidency despite losing the popular vote. In more recent years, Maine's political status has changed, giving way to Missouri and Ohio. Using that analogy as a backdrop, witnessing the AIDS Drug Assistance Program (ADAP) crumble as 8,785 people living with HIV/AIDS are denied access to their life-saving medications should cause alarm to anyone advocating for Ryan White programs.

Why?

During the 1990s when the Ryan White Comprehensive AIDS Resources Emergency (CARE) Act was passed, it was done so with strong bipartisan support. In fact, the late Sen. Edward Kennedy - the liberal lion of the Senate - was joined by one of the most conservative Republicans to introduce the legislation, Sen. Orrin Hatch. Every reauthorization since has also enjoyed the same level of bipartisanship. But while certain aspects of the Ryan White law have struggled to garner consensus, often falling victim to the ideological divide, ADAP and its funding always served as the model of how the two political parties could work together. In many respects, ADAP served as the bellwether program of the Ryan White law.

President Bill Clinton worked with House Speaker Newt Gingrich to ensure ADAPs were adequately funded because both leaders understood the Return on Investment (ROI) from a public health perspective. From 1995 to 1999, federal funding for ADAPs fared relatively well, as ADAP funding increased from $51.9 million to $460.6 million. But the last major influx of funds occurred in 2003, when Congress approved an increase of nearly $100 million. Since then, however, ADAPs have been perpetually underfunded at the federal level.

In August 2003, ADAPs were facing a similar funding crisis, albeit not equal to the scale faced today. The ADAP Working Group published its White Paper, "The History and Status of the ADAP Funding Crisis; The Current ADAP Crisis status as of Month #5 of the FY ’03 Funded Program Year," in response to the crisis at the time when there were 509 people living with HIV/AIDS on ADAP waiting lists in 10 states. (1) It summarized ADAP's bellwether status very accurately:

"ADAP was generally well funded from FY ’96 through FY ’00 with active and open bi-partisan Congressional support. ADAP related crises did occur but tended to be a function of new programs, rapid scale up, State level resource needs, or local health care delivery issues. Underfunding on a serious nationwide federal level started in FY ’01 and continues." (2)

Fast forward to 2011, when ADAP waiting lists and other cost containment strategies are at record high levels. In fact, historically nothing compares to the crisis facing the nearly 10,000 people living with HIV/AIDS being adversely impacted by the ongoing ADAP crisis. During the last "major" ADAP crisis, ADAP waiting lists only pushed the upward levels of 1,400+ on waiting lists. Now, there are just shy of 9,000 on waiting lists, approximately another 1,000 kicked off the program (via eligibility changes) and states like Ohio are toying with medical criteria, which was once taboo.

ADAP wasn't immune from internal bickering over how to solve the crisis, as some national HIV/AIDS organizations were hesitant to publicly challenge longtime leaders, despite their failure to solve the problem. "The Politics of ADAPs" (3) provides an excellent historical analysis on why the current ADAP crisis should cause alarm for HIV/AIDS advocates fighting for other important programs, such as prevention.

Think back to the struggles...and failures...over needle exchange programs, or abstinence only sex education. When HIV/AIDS advocates were desperately trying to fend off attacks on proven prevention strategies from the religious right, ADAP was receiving millions of dollars in new federal funding. So, ADAP's ongoing fight to secure as little as $101 million dollars despite the overwhelming evidence and history of bipartisan support is troublesome because if a "popular" HIV/AIDS program like ADAP is facing increasingly tough times, how can other "less popular" programs expect to make needed gains?

The ongoing debate over federal appropriations is evidence enough. For Fiscal Year 2012, ADAP funding increases could be as little as $15 million despite the escalating crisis. Meanwhile, most other HIV/AIDS programs could look at level funding, or even damaging spending cuts. (4)

Carl Schmid, Deputy Executive Director of The AIDS Institute, best summarized the ongoing plight facing domestic HIV/AIDS programs:

"While we appreciate Subcommittee Chair Tom Harkin's effort to preserve existing programs, our Nation is not going to reduce new HIV infections or provide adequate care and treatment to low-income people living with HIV/AIDS without new resources. This is extremely disappointing since we have the drugs to keep people alive, the knowledge that treatment is prevention, along with a number of other tools that help prevent HIV, and the leadership by the Obama Administration as detailed in the National HIV/AIDS Strategy. Without the necessary resources, the goals of the Strategy will not be achieved, and thousands of more people in the United States will needlessly become infected with HIV." (5)

Until the HIV/AIDS community can find consensus on how to solve the ADAP crisis, it is hard to imagine how other important programs can receive the resources that they desperately need, too. As goes ADAP, so goes Ryan White programs.

----

(1) The ADAP Working Group, "The History and Status of the ADAP Funding Crisis; The Current ADAP Crisis status as of Month #5 of the FY ’03 Funded Program Year," August 2003, p. 1.
(2) The ADAP Working Group, "The History and Status of the ADAP Funding Crisis; The Current ADAP Crisis status as of Month #5 of the FY ’03 Funded Program Year," August 2003, p. 3.
(3) ACHIEVE, "The Politics of ADAP," Fall 2008, p. 11.
(4) U.S. Senate Committee on Appropriations, "Summary: FY12 Labor, HHS, and Education Appropriations Bill," September 21, 2011.
(5) The AIDS Institute, "Senate Flat Funds Most Domestic HIV/AIDS Programs," September 22, 2011.

A Day With HIV In America

2011-09-16T07:19:00.000-07:00

POSITIVELY AWARE is once again spearheading its snapshot of HIV/AIDS called "A Day With HIV In America." Whether you’re negative or positive, live with HIV or live for someone with HIV, POSITIVELY AWARE's campaign is through the lens of a camera. It is the 2nd annual event, so get ready to show your smile!

On September 21st, grab your digital camera or smartphone and take a snapshot. Capture a moment of your everyday life. Each photo tells a story. Get in the picture, and tell your story.

The ADAP Advocacy Association (aaa+) encourages people living with HIV/AIDS currently receiving their life-saving medications under the AIDS Drug Assistance Program (ADAP) to submit photos. Let's put a face on the ADAP program, especially since as of September 8th there were 9,066 people living with HIV/AIDS on ADAP waiting lists in 11 states.

Photo submissions will be posted on their site. Select pictures will be published in the November-December issue of POSITIVELY AWARE. Send your photo by September 26th to artdirector@tpan.com.

To learn more, go to http://www.adaywithhivinamerica.com/.

It's Time We Tweeted to President Obama

2011-09-09T10:35:00.001-07:00

On Thursday, September 15th starting at 7:00am, President Obama will be put on notice that the ongoing crisis facing the AIDS Drug Assistance Programs (ADAPs) is totally unacceptable. But this notice won't be sent via email, fax, snail mail or demonstration in front of the White House. So how will this message be sent, you ask?

The ADAP Advocacy Association (aaa+) is taking a page out of the playbook from the "Arab Spring" protesters in order to launch its "ADAP Fall" social media campaign starting with a “Obama-ADAP Twitter Day.” The purpose of the campaign is to raise awareness about the growing ADAP waiting lists by leveraging one of the leading social media outlets. Twitter users are asked to direct their hashtag #ObamaADAP Tweets at President Obama using handle @whitehouse.

Ultimately, aaa+ and many other national, state and local HIV/AIDS organizations want the Obama Administration to reprogram funding from the U.S. Department of Health & Human Services toward the Ryan White CARE Act and ADAP, specifically. President Obama did something similar last year, but the $25 million transfer wasn't nearly enough funding to make a noticeable dent in the escalating ADAP waiting lists.

Twitter users are asked to do the following on Thursday, September 15th starting anytime after 7:00am:

Send Tweets hourly;

Use Twitter hashtag #ObamaADAP in the same Tweet;

Direct Tweets at President Obama with handle @whitehouse; and

Encourage friends and colleagues to Tweet, too!

To view the aaa+ profile on Twitter, go to https://twitter.com/#!/adapadvocacy.

The goal on September 15th is to make hashtag #ObamaADAP trending on Twitter with ADAP-related tweets directed at President Obama by using handle @whitehouse. Some example tweets might include:

@whitehouse ADAP waiting lists continue to grow! We need your leadership President Obama to end #ObamaADAP crisis!

President Obama, please end the ADAP waiting lists! @whitehouse How long will you let this #ObamaADAP crisis last in the United States?

@whitehouse End ADAP Waiting Lists Now #ObamaADAP

As of September 1st, there were 9,298 individuals in 11 states on ADAP waiting lists, including Alabama with 211 individuals; Florida with 4,022 individuals; Georgia with 1,715 individuals; Idaho with 31 individuals; Louisiana with 1,056 individuals; Montana with 28 individuals; North Carolina with 340 individuals; Ohio with 59 individuals; South Carolina with 836 individuals; Utah with 50 individuals; and Virginia with 950 individuals.

“Out to Lunch – Be Back When Funding’s Gone!”

2011-09-01T13:06:00.000-07:00

“OUR FUNDING IS GETTING CUT!!! THE SKY IS FALLING!!!”

For those of us living in the HIV/AIDS community, this is the annual refrain we’ve heard since the Ryan White Care Act was first authorized in 1990, and it is a refrain which we will likely continue to hear ad nauseum until most of us are long-since dead of old age. What is wonderful about the Ryan White Care Act is that it enabled an entire generation of first-round AIDS survivors access to treatments, medications, and medical services that were, up to that point, a high-priced pipe dream that led to a pine box surrounded by the tens of our friends who were left to arrange the funeral.

I know that introduction sounds considerably morose – one might suggest that it is cynical; however, it is the constant repetition of the Funding Refrain that has lulled many of our national HIV/AIDS lobbying organizations into a persistent vegetative state. Pursuing additional funding on the national level (as opposed to the international level) has become a process of celebrating minor victories and scrambling to scoop up whatever scraps are thrown our way – and yet, despite these considerably minor victories in increased funding, still our local-level clinics, providers, and non-profits struggle to provide the services for which the national organizations claim they’re fighting.

Enough.

For twenty-one years we have watched these organizations squander our limited resources in exchange for highly paid executives, increasingly limited access to people who can actually help our cause, and depressingly minor victories. These groups have siphoned the money from our pockets for over two decades, always claiming that they are in dire straits, all the while playing the roll of Showershot Socialites, throwing lavish parties, a seemingly endless number of self-congratulatory awards ceremonies, and falling all over themselves to let us know that our dollars are going to good use; that we’re getting “unprecedented” access to officials sympathetic to our cause.

To quote David Sedaris, “If you’re looking for sympathy, you can find it between “shit” and “syphilis” in the dictionary.

It is time to face a stark reality – the funds are, indeed, drying up. More accurately, the funding was increased after remaining stagnant for nearly a decade, but that increase was transparently insufficient to keep up with a growing epidemic of new infections, longer life spans due to better treatments, and the inconvenient blessing that HIV/AIDS is no longer a death sentence. This time, however, we are faced with a legislature who insists that whatever funds are added must be offset by cuts elsewhere, meaning that someone’s pet project is going to get its funding cut, and someone, somewhere is going to throw a hissy fit over the proposal.

Unfortunately, the people throwing the hissy fit are those in the HIV/AIDS establishment. Despite the mounting evidence that the accepted and traditional methods of HIV lobbying are failing to net the results needed to sustain vital programs like Ryan White, ADAP, and HOPWA, these organizations continue to rely upon the brand names they acquired twenty and thirty years ago when they actually exhibited effective leadership and lobbying skills.

What is more unfortunate is that the results of a decade of basically fruitless lobbying efforts (i.e. – inadequate funding) fall upon the local organizations struggling just to keep their doors open during a recession unlikely to end anytime soon for those making fewer than six figures. In Long Beach, CA, preliminary numbers for incoming donations to help provide vital services for clients have shown nearly a 50% drop over the past two years. The HOPWA program in Los Angeles County, designed to provide living assistance for those on a fixed income living with AIDS, has all but ground to a halt because Section 8 housing has not opened up for new applications in over two years. Rural clinics across the country are seeing their funding slashed as the limited resources are redirected to more densely populated (and often more ethnically diverse) areas of the state, leaving those with the least access to competent and quality health services with nowhere to turn.

We live in unprecedented times…and that requires unprecedented measures. The time has come to reevaluate our collective approach to lobbying for our cause, and to recognize that we cannot rely on our traditional allies to help us if they are unwilling or unable to do so. It is time to come up with a new strategy, and to do so, we must face the new realities of 21st Century HIV/AIDS Funding:

1.) The gay and minority communities are tapped out.

There is only so much money we can continue to expect from a small percentage of affected communities, and their coffers are running on fumes. We need to branch out to incorporate others into our fight; we need to model ourselves off of the Breast Cancer campaign. They managed to take a silent killer that no one spoke about for most of the 20th century and turn it into the most profitable, best-funded example of great marketing, organization, and leadership in the healthcare community. Would Breast Cancer lay back and watch its funding get slashed? I think not.

Breast Cancer has massive corporate sponsors like Major League Baseball – an entirely male organization that sports several prominent members who are survivors of Prostate Cancer (which saw nearly 10,000 more new cases in 2010 with a higher male mortality rate). Yet, still – Breast Cancer wins the day while Prostate Cancer stays in the shadows.

Where are OUR corporate sponsors? For the most part, we have relied upon the pharmaceutical companies to provide us the sponsorship and ad space we need to get our messages out. That has to end.

2.) We can no longer rely on the Democratic Party to be our staunch allies.

Regardless of how many promises they make, initiatives they support, or awards we throw at them, the Democratic Party can no longer be counted upon to help us accomplish the goals necessary to maintain viable programs for low-income individuals over the long run. The 90s are over, and it’s high time that we stop pretending that they’re going to return.

[Photo: AIDS Healthcare Foundation protesting then-House Speaker Nancy Pelosi as ADAP waiting lists exploded from 99 people living with HIV/AIDS to several thousand]

Time and again, we’ve been duped into believing that the Democrats were going to fight in our name and help to better our circumstances, and due to either a lack of spines or the new political realities of the 21st Century, they lack both the will and the ability to get the job done. This means we must turn to other resources, and those cannot be obtained at an all-Dem fundraiser, cocktail party, or awards ceremony. They must be brought over to our side by showing them the realities of HIV/AIDS funding in their own districts; in their own hometowns.

Republicans are responsible for the largest increase in U.S. international aid in the last thirty years. By comparison, the increase on the national level brought to us by the majority Democratic legislature paled so much that I am forced to admit (much to my chagrin) that the GOP has done better for HIV/AIDS in the last decade.

3.) We need to create new allies out of old enemies.

While the 80s and 90s engrained in our community the belief that the Democratic party would forever be our allies, there was and equal and opposite reaction for the Republican party. It is impossible for many of us to forget when many prominent GOP legislators stood before the houses of Congress to suggest that we be rounded up, sent to an island, and exterminated; that we be visibly tattooed to display to others that we had AIDS. The specter of shared history in Germany during World War II seemed to be coming back to haunt us.

[Photo: Former California Republican Congressman Bob Dornan symbolized the anti-AIDS rhetoric coming from many within the Republican ranks during the 1980s and 1990s]

Unfortunately, the GOP has for nearly forty years been held hostage by the Religious Reich – the Talibangelicals who refered to us as Sodomites, insisted that allowing us to live will exact God’s revenge on the world through AIDS, and stated that our disease is God’s punishment for our war against nature. It is disheartening that this movement still holds such a stranglehold over the most extreme elements of the GOP that even the most moderate candidate must skew his views drastically to the right simply to get nominated and elected.

There is light at the end of that tunnel, however – an increasing number of studies and polls have shown that grip to be weakening, particularly with people under the age of 45. The younger generation of GOP activists, though we may not agree with their approach to fiscal governance, are more than understanding of our plight, and can become if not powerful, then at least new allies in our fight to maintain relevance.

It is incumbent upon our community to welcome these new comrades into our fold – we must set aside our feuds and grudges, and stop holding the young responsible for the faults of the old. We must ensure that we make solid allies of them while we wait for their gerontocracy to die and for their influence to die with them.

4.) Our message no longer resonates with the general public.

Once again, the Breast Cancer lobby is a great example of how to make a disease that saw new cases in only .08% of the U.S. population in 2010 the largest money making health lobby in the world. They bring the message home to the American public by de-stigmatizing the disease and making it accessible. They’ve made it the “sexy cancer,” to use the words of a colleague of mine.

We have done something similar. We’ve taken a chronic illness that once meant certain death and turned it into a manageable disease represented by muscular, beautiful models whose struggles with HIV led them down the path to Gold’s Gym. Gone are the wasted, lesion-ridden faces of the 80s and 90s; gone are the people who are less successful at fighting their disease, or whose strains are multi-drug resistant.

We need a new marketing strategy – one that doesn’t hide the reality of the disease. The current strategy, while successful at making HIV acceptable, has lowered the national belief that funding for research, treatment, and social services is an imperative. Success stories work well when you’re trying to get people to get tested; tragedy brings in the dollars and cents.

Ultimately, the choices are never going to be easy. How can we, the HIV/AIDS community, say to those running the national agenda that their service has been appreciated, but we’re just not that into them? There will be those who will be disenfranchised, and feelings will be hurt, but we cannot forget our core purpose: providing adequate, competent, and consistent care for those who are most in need.

Blog by Marcus J. Hopkins, ADAP Advocacy Association member from Los Angeles, CA

ADAP Waiting Lists, Public Opinion Perspectives & Competing Ribbons

2011-08-26T06:11:00.000-07:00

In 1996, HIV/AIDS was ranked by the American people as the number one public health concern facing the nation. While anti-retroviral treatments were entering the world stage with a bang at the time, it was hard to overcome more than a decade characterized by AIDS ignorance, stigma and fear. Fast forward to 2010, Americans ranked Swine Flu as the most important public health concern...yet not a single person died of the illness last year in the United States. Despite thousands of AIDS-related deaths in 2010, HIV/AIDS ranked in the mid-20s among the public health concerns of the American people.

Could the changing attitudes help explain why as of August 18th (2011), there were 9,201 people living with HIV/AIDS on waiting lists under the AIDS Drug Assistance Programs (ADAPs) in twelve states? Could the lack of public concern be fueling insufficient federal funding, statewide cost containment strategies or rising drug prices and even the historic number of people being denied access to care and treatment?

The Kaiser Family Foundation (KFF) just might have the answer!

In June 2011, KFF released its "HIV/AIDS At 30: A Public Opinion Perspective" summarizing its eighth large-scale national survey of Americans on HIV/AIDS. The results should not come as any surprise.

Key findings include:1

Black Americans, and particularly young blacks, express much higher levels of concern about HIV infection than whites.
Reported HIV testing rates are flat since 1997, including among some key groups at higher risk.
Thirty years into the epidemic, there is a declining sense of national urgency and visibility of HIV/AIDS.
At the same time, after nearly a decade of decline, the share of Americans who say they are personally "very concerned" about becoming infected ticked up for the first time in this year's survey.
Many Americans still hold attitudes that may stigmatize people with HIV/AIDS, but such reported attitudes have declined in recent years.
Despite continuing economic problems, more than half of Americans support increased funding for HIV/AIDS, and fewer than one in ten say the federal government spends too much in this area.
Media, which includes radio, television, newspapers and online sources, is the top information source on HIV across racial/ethnic groups and for younger and older adults alike.
Three-quarters of Americans could not name an individual who stands out as a national leader in the fight against HIV/AIDS, and no person who was mentioned makes it into double digits.

For additional information about the excellent resources being made available by KFF, please visit their website: http://www.kff.org/kaiserpolls/8186.cfm.

Obviously, Americans no longer view HIV/AIDS as a priority in the United States. Is there any other reason to explain why the number of people living with HIV/AIDS on ADAP waiting lists in this country has exploded from 99 in May 2009 to 9,201 to August 2011? That's a 9,193% increase!!!

Since the late 1990s, HIV/AIDS funding has been hit with a double-whammy...

The federal commitment to domestic HIV/AIDS funding for Ryan White programs, including ADAP, has struggled to keep pace with demand and the proven science and cost-effectiveness of prevention, care and treatment over the past decade. Yet, since 2003 domestic HIV/AIDS programs have taken a back seat to the President's Emergency Plan for AIDS Relief (PEPFAR), a five-year $15 billion plan to fund AIDS care and prevention in the developing world. According to the Center for Global Development, the United States has disbursed $18.8 billion via PEPFAR since its inception,2 and an additional $5.5 billion is appropriated for FY2009, representing 1/6 of the total State and Foreign operations appropriations.3 In comparison, Ryan White funding (including ADAPs) was appropriated at $2.02 billion in FY2004, $2.04 billion in FY2005, $2.04 billion in FY2006, $2.11 billion in 2007, and $2.14 billion in FY2008.4 The most recent Omnibus spending package approved by Congress included $2.24 billion for FY2009, which means that the United States has spent one-third (1/3) less on services and supports funded under Ryan White than was sent to combat AIDS abroad! Unfortunately, funding in FY2010 continued that trend. That's whammy #1!

The Red Ribbon was once a widely-recognized symbol of awareness and hope for people effected, and affected by HIV/AIDS. Wearing the Red Ribbon was likened to a first place ribbon in the fight against the disease...but now, that ribbon has fallen behind to competing colors. Whether it is the Pink Ribbon for breast cancer, Blue Ribbon for prostate cancer or the Jigsaw Ribbon for autism, numerous other colors have relegated the AIDS Ribbon to the back of the pack. For example, cancer research received $1.3 billion in American Recovery and Reinvestment Act funds for spending by the National Cancer Institute in FY 2009 and FY 2010.5 Ironically, despite repeated pleas by some Members of Congress and the broader HIV/AIDS community, no such stimulus funding was devoted to alleviate the ongoing ADAP crisis. That's whammy #2!

The paradigm that led to this one-two punch needs to change. Otherwise, ADAP waiting lists will continue to grow...leaving a growing number of people living with HIV/AIDS in the United States without the timely and appropriate access to care and treatment. It starts with public perception...

1st Place

2nd Place

3rd Place

Last Place

Isn't it time for HIV/AIDS to compete again?

________

1 Kaiser Family Foundation, "HIV/AIDS At 30: A Public Opinion Perspective," June 2011.

2 http://www.cgdev.org/section/initiatives/_active/hivmonitor/pepfardata
3 http://appropriations.house.gov/pdf/SFOFY0902-23-09.pdf
4 National Association of State & Territorial AIDS Directors, “FY2004 – FY2008 Appropriations for the Ryan White Program”, February 2008
5 National Cancer Institute, "Cancer Research Funding - Key Points," June 2011

Why the Congressional HIV/AIDS Caucus Needs to Rise Above Partisanship

2011-08-19T07:08:00.000-07:00

The U.S. House of Representatives recently filed paperwork to form the bipartisan Congressional HIV/AIDS Caucus ((formerly the Congressional Task Force on International HIV/AIDS) ). The Caucus is being spearheaded by Rep. Barbara Lee (D-CA), Rep. Jim McDermott (D-WA) and Rep. Trent Franks (R-AZ) "to examine methods by which the United States can maintain global leadership in the response to the epidemic." During the August recess, Members of Congress need to hear from their constituents (YOU) about why it is important that they join the Caucus...especially Republican lawmakers.

Not simply because the Republicans control the majority in the U.S. House of Representatives, but more importantly because HIV/AIDS is NOT a partisan issue. Since the Human Immunodeficiency Virus (HIV) doesn't ask people it is about to infect about their political party affiliation, it is incumbent upon our elected officials to combat HIV using the very same standard. Partisanship needs to be left out of the equation altogether.

At this very moment, Representatives Lee, McDermott and Franks are soliciting their House colleagues to join the Caucus, but they need to hear from people living with HIV/AIDS! Without a strong and consistent outcry from the community, many lawmakers might be left with the false impression that HIV/AIDS isn't a priority for the 112th Congress. Unfortunately, thus far only Democrats have joined the Caucus (although numerous GOP offices have been targeted and most likely will be joining).

Unless more House Republicans join the Caucus and together with their Democratic colleagues identify and support viable solutions, it [the Caucus] will be doomed to failure. It is especially critical that long-time GOP lawmakers with established records on HIV/AIDS join the Caucus. They include, just to name a few, Rep. Ileana Ros-Lehtinen (FL), Rep. Mary Bono Mack (CA), Rep. Frank Wolf (VA) or Rep. Kay Granger (TX).

With so many issues facing the country, unfortunately HIV/AIDS has been relegated to the back burner in many respects. The Caucus represents an excellent opportunity to change this paradigm. In the 112th Congress, the Congressional HIV/AIDS Caucus will explore five thematic areas:

• Implementation of the US National HIV/AIDS Strategy;

• Financing for Bilateral and Multilateral HIV/AIDS programs;

• The state of HIV/AIDS research;

• The role of Faith-Based Organizations; and

• The 2012 International AIDS Conference to be held in Washington, D.C.

While efforts to initiate the bipartisan Congressional HIV/AIDS Caucus should undoubtably be commended, it shouldn't be overlooked that this is being done at the very same time a record number of people living with HIV/AIDS are languishing on waiting lists under the AIDS Drug Assistance Programs (ADAPs). So...any Congressional effort to address HIV/AIDS-related issues should first focus on the domestic crisis facing 9,217 ADAP-eligible patients who are being forced to go without their life-saving medications, as well as the hundreds more who have been kicked off their State's ADAP by eligibility restrictions.

Is it rational to discuss research when thousands of people living with HIV/AIDS are being denied access to care and treatment? Does it make any sense for lawmakers elected to the U.S. House of Representatives by people living in the United States to address issues with an international focus without first taking immediate steps to alleviate the ongoing ADAP crisis? Doing so would only lessen credibility surrounding the Caucus' activities. There are people right here, right now who desperately need their elected officials to provide leadership, regardless of political party.

That is why the bipartisan Congressional HIV/AIDS Caucus needs to be just that...bipartisan!

Editor's Note: When contacting your Member of Congress about the bipartisan Congressional HIV/AIDS Caucus, tell them that to join the Caucus or for more information, please contact Jirair Ratevosian (Lee), Andrew Adair (McDermott) or Stephanie Hammond (Franks).

Housing Works: Super Committee Republicans Could Jeopardize AIDS Programs

2011-08-12T08:34:00.000-07:00

The following blog is being shared compliments of Housing Works. CLICK HERE to view the original post.

From top left: Republicans Kyl, Portman, Toomey, Upton, Hensarling and Camp

Congress has just finalized the roster for the super committee—the group of lawmakers charged with charting much of the country’s fiscal future—meaning it’s time to examine how the committee’s decisions could shape AIDS programs in the U.S.

So far, we know this: The committee includes two of the most fiscally conservative Republicans in Congress, Sen. Pat Toomey and Rep. Jeb Hensarling. It also includes Sen. Jon Kyl, one of just three senators to vote against the Ryan White CAREReauthorization Act in 1995, legislation that extended funds for people with HIV/AIDS and their families.

“[The committee’s] decisions could have a profound impact on our programming for years to come,” said Ronald Johnson, vice president for policy and advocacy at AIDS United. “If deficit reduction is completely made up of spending cuts, that increases the possibility that there will be less money available for HIV-related programs, health care, and the safety net as a whole.”

The 12-person committee is charged with trimming the country’s deficit by $1.5 million during the next decade. The group will have few limits as to what it can do to reduce the deficit, meaning changes and cuts to programs critical to people living with HIV/AIDS will be on the table.

It’s unlikely that the committee will demand a reduction to a specific program like the AIDS Drug Assistance Program. Instead, larger decisions—like a cap on non-discretionary funding—would shrink the pool of money available to all programs, including money for ADAP, the Housing Opportunities for Persons with AIDS program, and the Ryan White program.

The committee can also make alterations to structure and funding for Medicaid and Medicare, and any changes will affect the growing number of people living with HIV/AIDS who depend them.

“The Democrats that have been named are defenders of our programs,” said Carl Schmid, deputy executive director at theAIDS Institute in Washington, D.C. “[Sen. Max] Baucus, [Sen. John] Kerry, and [Sen. Patty] Murray have all stood up for low-income people. But the Republicans that have been selected are all fiscal conservatives.”

Several Republican committee members, including Toomey and Henserlang, have already said they will focus on reducing the deficit by making deep cuts—instead of exploring new revenue options.

“I want to see people who are going to defend the safety net, who realize that balancing the budget on the backs of poor people is not going to be a successful strategy,” said Christine Campbell, Housing Works’ vice president of national advocacy and organizing. “And when these 12 look at Medicaid and Medicare, it’s got to be from the perspective of reform and not just cuts.”

The super committee:

Republicans
Rep. Dave Camp of Michigan
Rep. Fred Upton of Michigan
Rep. Jeb Hensarling of Texas
Sen. Jon Kyl of Arizona
Sen. Pat Toomey of Pennsylvania
Sen. Rob Portman of Ohio

Democrats
Rep. Chris Van Hollen of Maryland
Rep. Xavier Becerra of California
Rep. James Clyburn of South Carolina
Sen. Patty Murray of Washington
Sen. Max Baucus of Montana
Sen. John Kerry of Massachusetts
Follow the Update blog on Twitter @housingworks.
Posted by Julie Turkewitz , August 11, 2011 at 12:20pm

Is Hepatitis C treatment covered by your states ADAP program; and some facts on Acute Hep C

2011-07-29T15:52:00.001-07:00

The AIDS Drug Assistance Program (ADAP) provides HIV/AIDS related prescription drugs to uninsured and underinsured individuals living with HIV/AIDS and in a handful of states provides Hepatitis C treatment which consists of interferon-based treatment and Ribavirin.

ADAP funds are used to provide medications to treat HIV disease, or to prevent the serious deterioration of health, including measures for the prevention and treatment of opportunistic infections. As a payer of last resort, ADAP only serves individuals who have neither public nor private insurance or cannot get all of their medication needs met through their insurance payer. In order to qualify you must prove an HIV/AIDS diagnosis and be below your states income cap to receive this insurance.

AIDS Drug Assistance Programs (ADAPs) are authorized under Title II of the Ryan White Comprehensive AIDS Resources Emergency (CARE) Act of 1990 (reauthorized in 2009). ADAPs are not entitlement programs but are dependent on federal and state discretionary funding, which determines how many clients ADAPs can serve and what levels of service states can provide.

When learning of my co-infection of HIV/HCV I did a lot of research online. How was I going to pay for this treatment, and if I could not afford the medicine, how was I going to get the medicine I needed to stay alive and to stave off a chronic Hepatitis C infection.

During my Hepatitis C treatment I was fortunate to have private insurance which paid for my treatment, but what if I did not have private insurance, or private insurance that did not cover Hepatitis C treatment. Hepatitis C is emerging as a pandemic in cities across the country for those infected with HIV/AIDS, and though most commonly found in people who share needles.. An estimated one-third of people with HIV are also infected with hepatitis C virus (HCV), which is now regarded as a sexually transmitted infection among HIV positive gay and bisexual men. (CROI 2011)

Coinfected individuals tend to experience more rapid liver disease progression than those with HCV alone, and they do not respond as well to interferon-based treatment for chronic hepatitis C. But starting hepatitis C therapy early, during acute infection, can lead to better outcomes. Acute HCV infection is often asymptomatic, but HIV positive men have a better chance of detecting HCV early because they undergo regular liver function monitoring that can reveal HCV-related abnormalities.

These liver function tests can be shown on your lab work as AST and ALT. A spike in these numbers, or an abnormal reading should prompt your doctor to look into a possible Hepatitis C diagnosis.

About 65% of confected patients with HCV genotypes 1 or 4, and 81% with genotypes 2 or 3, achieved sustained response to interferon-based therapy started during acute infection, researchers reported at CROI 2011.

If you have HIV AND Hepatitis C and wondering if your states ADAP covers Hep C treatment I have done the research for you.

Below you will find a list of states that do and do not provide Hepatitis C treatment.

All states ADAP funding including the US Virgin Islands and Puerto Rico cover HIV medications. ****

The follow states do cover Hepatitis C treatment

Alabama

Alaska

Arizona

California

Connecticut

Delaware

District of Columbia

Hawaii

Iowa

Maryland

Michigan

Mississippi

New Jersey

New York

Oregon

Pennsylvania

Puerto Rico

Utah

Virginia

Washington

The following states do not cover Hepatitis C medication

Arkansas

Colorado

Florida

Georgia

Idaho

Indiana

Kansas

Kentucky

Louisiana

Minnesota

Missouri

Montana

Nebraska

Nevada

New Hampshire

New Mexico

North Carolina

North Dakota

Oklahoma

Ohio

South Carolina

South Dakota

Tennessee

Texas

Vermont

Virgin Islands (US)

West Virginia

The following states cover only interferon but not Ribavirin

Illinois

Maine

The following states cover Ribavirin and NOT interferon

Rhode Island

****disclaimer**** (updated as of 7/27)

With the current crisis in funding of ADAP programs Nationally; I would advise that you google your states ADAP program and contact information for that program. States are placing people on waitlists to obtain these medications, and are also reducing formularies.

MyGov365...Self-Advocacy in Motion!

2011-07-22T09:40:00.000-07:00

Earlier this month a groundbreaking partnership was forged between the ADAP Advocacy Association (aaa+) and MyGov365 designed to better engage people living with HIV/AIDS in the legislative process at the federal, state and local levels. Constituents (a.k.a., voters) often make things happen because lawmakers benefit from their support; so imagine what constituents can do if they were better informed about legislation, as well as connected to their peers who share likeminded goals...in this case, securing appropriate and timing access to care and treatment for people living with HIV/AIDS. MyGov365 provides the necessary tools to make it happen!

aaa+ is the first national HIV/AIDS organization to harness the networking and educational power of the MyGov365 platform. The nonpartisan platform empowers people living with HIV/AIDS with a free suite of tools to enhance communication and collaboration with the general public, peers and elected officials.

MyGov365 is comprised of a diverse mix of everyday citizens with one common passion: to use innovative technology to bridge the communications gaps between citizens, government, organizations and political professionals. MyGov365’s platform intelligently matches users to their districts and elected officials, making it extremely easy for officials to share information and gather feedback. As updates occur such as introduced legislation, bill summaries, or discussions, constituents receive notifications about activity in their district and/or by their specific elected officials. This increases awareness and engagement, and can help lay the groundwork to build community support for various issues, which in turn makes it easier to get legislation considered. Individuals can create their own profile for free at http://www.mygov365.com!

MyGov365’s platform is currently comprised (and growing) of legislation from the United States Congress, District of Columbia (DC) and 32 states – Alaska, Arizona, Arkansas, California, Connecticut, Florida, Hawaii, Indiana, Kentucky, Louisiana, Maine, Maryland, Massachusetts, Michigan, Minnesota, Mississippi, Nevada, New Hampshire, New Jersey, New York, North Carolina, Ohio, Oklahoma, Oregon, Pennsylvania, South Dakota, Texas, Utah, Vermont, Virginia, Washington and Wisconsin.

In the Spring 2011, Americans witnessed the "Arab Spring" sweep across the Middle East, ushering in a new era of democracy and freedom for millions of people. Their success was fueled by years of discontent, coupled with a newfound ability to communicate, organize and protest called social media. Never before had people been armed with the tools to instantly communicate with each other on such a large scale to influence political change.

In the United States that same model needs to be employed by HIV/AIDS activists -- and in no other case is the need more pressing than by ADAP constituencies and stakeholders. Weekly, we witness approximately 200 of our fellow HIVers get relegated to a demeaning, stressful and unhealthy place called an ADAP waiting list. In fact, as of July 14th, there were 8,689 individuals in 13 states on ADAP waiting lists, including Alabama with 88 individuals; Arkansas with 37 individuals; Florida with 3,558 individuals; Georgia with 1,669 individuals; Idaho with 23 individuals; Louisiana with 886 individuals; Montana with 29 individuals; North Carolina with 302 individuals; Ohio with 373 individuals; South Carolina with 858 individuals; Utah with 29 individuals; Virginia with 837 individuals; and Wyoming with 0 individuals.

The aaa+/MyGov365 partnership has the ability to re-engage longtime leaders, while also attracting fresh new voices to this fight. What better way to teach the next generation of HIV/AIDS activists than by political networking the very same way social networking is done on Facebook, or professional networking is done on LinkedIn? Often times, too, some constituents complain that understanding the political and legislative process is difficult because the process isn't spelled out in layman's terms, or the information isn't easily and readily accessible. MyGov365 changes that paradigm.

According to Jay Resio, President of MyGov365, using the civic engagement platform, aaa+ will empower its new and existing members to stay informed and engaged about important issues, legislation and civic activities related to the organization's mission. Members can track legislation and receive updates, cast votes on legislative initiatives, collaborate in the ADAP Advocacy Association’s network, and more. ADAP constituencies and stakeholders will benefit from MyGov365's ability to provide member feedback and insight to elected officials, civic leaders and other organizations to help expedite the legislative and civic decision-making process.

Sign up today at www.mygov365.com. It's free and easy to use!

Where you at ? - The ADAP Crisis in America

2011-07-14T10:07:00.000-07:00

Some of you may be familiar with and may of read my previous posts -here- here and here about the ever growing AIDS Drug Assistance Program (ADAP) waiting list in the United States. Well it is that time of year again when the ADAP Advocacy Association ( aaa+) holds it annual ADAP Conference. aaa+ strives to promote and enhance the AIDS Drug Assistance Programs (ADAPs) and improve access to care for persons living with HIV/AIDS. aaa+ works with advocates, community, health care, government, patients, pharmaceutical companies and other stakeholders to assure that access to services recognize and afford persons living with HIV/AIDS to enjoy a healthy life. As always I have to applaud and say THANK YOU to Brandon Macsata for organizing this whole thing and Amanda,Christopher,Joey and Regine and all the volunteers for making the conference a success.

Currently there are 8,615 Americans (as of 6/30/11) who are not getting their life saving medication. They are just simply sitting on a waiting list. Since 6/29/10 over 6,000 Americans have been added to the ADAP waiting list. That is in just one year. This is what made this year's conference extremely important. Can you imagine finding out you are HIV+ today and not being able to get medications because you can't afford them. AIDS medications can cost $1200 a month or more. Would you take the time to apply for ADAP if it meant you were going on a waiting list ? For many Americans this is a reality. So on top of the 8,615 currently on the list can you imagine the hundreds or thousands of people living with HIV/AIDS who don't apply since they can't get care and treatment they need.

It is very frustrating to me. I feel that every human being should be given the treatment they need to live a happy life, regardless of what disease they have or how big their bank accounts are. How can someone not be able to look inside themselves and find the compassion to want to help another human being. It leaves me dumbfounded. We can sit here and point fingers but as a nation we need to stand up to all responsible and create a movement.We literally need to take the streets and fight for our lives.

Lets get back to the conference. The conference opened up with guest speaker Bishop Joyce Turner Keller. The Bishop has lofted the term “southern hospitality” to an entirely new level. She is not only the founder and CEO of Aspirations, a non-profit faith-based community service organization, but someone who is living with HIV/AIDS herself, and has dedicated herself to educating, supporting and inspiring others living with HIV/AIDS throughout the nation.

She was AMAZING. She not only walked in like a rock star with bright red hair, she brought the house down with her opening speech. We all felt her passion and it re-energized the passion inside all of us. She kept asking us one question thought out her speech. "Where you at ?" It clicked in so many ways. At one point during here speech she was calling out names of states. "Florida..Where you at ? Georgia..Where you at ?" Then attendees from each state would make noise and raise their hands. It was very empowering. By the end of the conference she had us all screaming "Where you at ?" It made it me realize how important it is for us living with HIV/AIDS to STAND UP and get our family and friends involved. I hope to have her come on POZIAM Radio sometime soon.

POZIAMers Meet
Tuesday evening I had an awesome experience. I have always wanted to get a group of POZIAMers together for a dinner or event. FYI - POZIAMers are members of my social network. I knew a bunch of them would be in DC for the conference and I would be meeting them for the first time. So I organized a dinner at Level One and about 20 people responded yes. Most of all met out front of the Westin Hotel.

With the help of our tour guide Christopher Myron, our clan arrived at Level One in one piece. There we met up with other POZIAMers who lived in DC but were not attending the ADAP Conference. It was such an amazing feeling to meet the people you see online in person. People who you talk to everyday or read their blogs. We had a great time and obviously took plenty of pictures. I can't wait for the next POZIAMers dinner. Some of us were outside the hotel sharing stories until 3am. We didn't care what time it was. These little conversations with fellow advocates can be life changing. Having Dab Garner as my roommate was one of the other highlights of my trip. Spending time and having conversations with a man you who has been fighting this for over 30 years was priceless. I admire and respect his wisdom and strength. This was the icing on the cake for me.

1st Annual ADAP Leadership Awards Dinner
Wednesday evening we all attended the 2011 Annual ADAP Leadership Award Dinner. As a Board member of aaa+ I have to say we recognized an amazing slate of leaders, who for the last year have taken it upon themselves to raise awareness about the AIDS Drug Assistance Programs. All doing their part in the fight in their own way. It was an honor to be among them all. Over all the conference was a great experience and brought people from across the United States together to discuss a every important issue.

The 2010-2011 award recipients include:

ADAP Champion of the Year:

Dab Garner of Dab the AIDS Bear Project

ADAP Emerging Leader of the Year:

Jason King of AIDS Healthcare Foundation

ADAP Corporate Partner of the Year:

The Honorable Neil Romano of The Romano Group, LLC

ADAP Community Organization of the Year:

Stephen Gunsallus of Counseling Ministries.Org

ADAP Lawmaker of the Year:

The Honorable Alcee Hastings, M.C. (FL-23)

ADAP Social Media Campaign of the Year:

AIDS Activism 101 by Mark King of MyFabulousDisease

ADAP Grassroots Campaign of the Year:

Butch McKay of Positive Living Conference / ActivateU

• ADAP Media Story of the Year:

HIV S.O.S. by Charles Blow of the New York Times

Congratulations to all the recipients and Thank you for the hard work you do and awareness you have continue to bring to the ADAP Crisis in America.

Current ADAP numbers

8,615 individuals in 13 states, as of June 30, 2011

Alabama: 73 people

Arkansas: 40 people

Florida: 3,562 people

Georgia: 1,630 people

Idaho: 20 people

Louisiana: 824 people

Montana: 29 people

North Carolina: 292 people

Ohio: 485 people

South Carolina: 810 people

Utah: 25 people

Virginia: 817 people

Wyoming: 8 people

For more information on ADAP waiting lists.
Please visit www.adapadvocacyassociation.org/

The ADAP Crisis, and the Proverbial Water-Well

2011-06-23T11:19:00.000-07:00

This morning I watched as six of 12 defenseless ducklings fell into a well, as the mother duck stood her ground and protected the other chicks from making the same mistake. The mother duck's quack became increasingly louder until residents of the apartment complex figured out what had happened, and rescued the baby chicks.

Had the mother's quack not been so loud, and had others who could come to the rescue not been around; she would have lost six of her offspring. The chicks' quacks were faint being about five feet underground, and would have eventually been silenced by their eventual death, without anyone ever knowing. That mother duck knew that inaction AND silence could equal death.

That mother duck and her chicks and the people who came to the rescue are an epitome of the ever-growing ADAP crisis occurring in our country right now. 8,310 humans are defenseless as they go untreated for their HIV/AIDS infection; defenseless because our government is not coming to the rescue to provide lifesaving medications.

Later in the day I saw the same man who came to the rescue pour green slimy water down that drain. This would have surely killed the ducklings. It's kind of representative of what states are doing to its people, by lowering the FPL, and changing other eligibility criteria; overall making it harder for people to obtain medicine and other necessary resources for survival. As we are being told in numerous state and nationally sponsored campaigns; get tested, know your status; we are also being told (if testing positive) that we cannot help you. This ADAP crisis sends the opposite message; a message of hopelessness; why get tested if I can't be treated?

Recent Research indicates that those on ARV (antiretroviral medication) are 96 percent less likely to pass the virus onto their partner). Research also indicates that starting ARV earlier in the progression of the disease helps prevent the virus from replicating to a point that significantly destroys the immune system. History tells us what untreated HIV infections can lead to; opportunistic infections, other illnesses, and DEATH. History has shown that silence = death. History has also shown that the power of voice, of action, of compassion, understanding, and care are the cornerstones of human existence.

With regard to the ADAP: voices are being displayed in public forums, through online initiatives, through teleconferences, through letter writing, and signing of petitions. Within the HIV/AIDS community we are showing compassion, care, and understanding to our friends living with HIV/AIDS. However, the "everyday" American has not caught on to the ADAP crisis, and most politicians and legislators are ill-informed, uneducated, and simply have become complacent to this issue.

What will it take? 8,000 people dying before this crisis makes the front page of The New York Times, The Washington Post, The LA Times, the San Francisco Chronicle, The Chicago Tribune, the Sun-Sentinel and other newspapers from across the country. When will it hit the national news such as CNN, MSNBC, FOX and other local news channels? When will our government step in to fix the problem? Before it's too late?

Just as the quack of the duck became increasingly louder to save her baby chicks, OUR voices must be heard and cannot be silenced; as we have seen with regard to the Arab spring; great things can be accomplished when people band together to create desired change.

We have the medicine, we have the research to show us it works, and we have the history as a reminder to all of us what can happen when this disease is silenced. History also show's us the great accomplishments that have been made by our voices, AND our actions.

We can take this moment and seize it by rising up, standing out, and speaking up about HIV/AIDS and this ADAP crisis or we can take this moment; place it in the proverbial water well; only for our actions and words to be silenced. The latter CANNOT be an option.

Until there is a cure our government MUST not re-main complacent and must make sure that EVERY American living with HIV/AIDS has access to lifesaving and life sustaining medication which keep people alive and healthy.

Will you please sign this petition and leave a comment to tell Washington and States to STOP cuts to ADAP and other HIV/AIDS services; and to instead FULLY fund these programs!

Blog by Kevin Maloney, ADAP Advocacy Association member from Clifton Park, NY

Sir Elton John gives Florida Governor Rick Scott the "Crocodile Rock"

2011-06-17T03:51:00.000-07:00

"Well Crocodile Rocking is something shocking when your feet just can't keep still I never knew me a better time and I guess I never will...Oh Lawdy mama those Friday nights when Suzie wore her dresses tight and the Crocodile Rocking was out of sight"

-- Sir Elton John

Embattled Florida Governor Rick Scott (R) was put on noticed by Sir Elton John that his State's proposed eligibility changes to the AIDS Drug Assistance Program ("ADAP") - which would essentially kick up to 1,800-plus Floridians living with HIV/AIDS off the program and leave them with few treatment options - was unacceptable. John, who is the Founder of the Elton John AIDS Foundation - wrote to the governor earlier this month, pleading with him to protect the program's integrity by preserving existing eligibility guidelines.

"Given that life-saving HIV/AIDS medications can cost between $10,000 and $30,000 per year, this proposal would put these low-income individuals with HIV/AIDS in the untenable position of being completely unable to afford treatment for an incurable, communicable disease," read, in part, John's letter.

As of June 10th, there were 8,230 people living with HIV/AIDS on ADAP waiting lists in 13 states. Florida has the largest ADAP waiting list, with 3,529 Floridians living with HIV/AIDS being denied care. Health care rationing is not only fiscally short-sighted, especially with a disease such as HIV/AIDS, but it also goes against the very fabric of the American experience. Yet, it happens all too often and something needs to change!

The letter represents the first high-profile gesture of support for the cash-strapped ADAPs...something that many within the HIV/AIDS community will propel the issue to higher level of media and public scrutiny. Long ago were the days when the disease garnered national attention in the morning newspapers and evening television news broadcast. Despite a few national news stories sprinkled here and there, including a recent Op-Ed by Charles Blow in the New York Times, most of the media attention has been focused at the local level.

Now, John has taken his case directly to the public by starting an online petition, which he hopes to send to Gov. Scott. The Florida Independent first reported that the online petition was started because the governor still had not responded to his June 1st appeal.

Some might say that Sir Elton John decided to give Gov. Scott the "Crocodile Rock." As of today (June 17th), there were already 1,053 signatures on the online petition (including this author)!

The petition reads, in part:

"Dear Governor Scott:

We, the undersigned, co-sign and endorse the attached letter from Sir Elton John and David Furnish calling on you to not cut vital HIV medication access to Floridians in need."

The full text of the letter can be found here: http://goo.gl/30MXO

CLICK HERE to sign the online petition today!

Dear God, How’ve you been?

2011-06-10T11:45:00.000-07:00

****Reprinted with permission from Christopher Myron****
The following blog is also available online at Christopher vs. HIV

Dear God,
How’ve you been? I must iterate my apologies for not writing to you sooner. However, due to the constant upheavals in my life (of which I hold you largely responsible) you must understand my reasons for not getting back to you sooner. But, don’t worry, all is forgiven, darling. It would be in terrible Christian manners for me not to forgive, don’t you agree?

Well, I’m sure you’ve been keeping up with everything that’s been happening from my end. I must say it wouldn’t have killed you to check in with me from time to time. As the universe creator and the all knowing ambassador of life, your advice on matters that sought a second look would’ve been encouraged. For instance, where were you when I was eight years old and my grandmother passed away? While you were transitioning her into new accommodations (which by the way better be first class considering she deserves it) my entire family tree fell apart. In the while, the adults of the world thought it was okay to pick on me, the quiet kid, by saying how bad I was at everything. Perhaps it was the quiet side of me that made me inept to sports and scholastics, allotting my free time to do, ya know, nothing. It’s not like I asked for anything, yet I was still labeled a spoiled brat. Is it because the one thing I ever asked for was a swing and never got it? Should I have made a fuss do you think? I must say your absence taught me to live alone in a bubble from an early age. I was comforted by shutting everyone out and changing my excessive smiles to pursed lips. Can you believe that is still the same attitude I have with most people these days? That point made me chuckle for a moment and I almost spilled my Perfect Manhattan that I’m drinking as I write this. But, like I said, all is forgiven.

Anyways, where was I? Oh yes, your abandonment. Sorry to sound like your mother, I’m sure. I thought my childhood and adolescent years would be the worst of it all. Well, was I wrong! Maybe I’ll let you be the judge.

Darling, did you hear I became a homosexual? Or, as the less educated population calls it, “a faggot?” Boy, what an experience it’s been! Thank goodness you approve and love homosexuals because people here sure don’t, especially the people who think they know how to interpret the Bible. Can you believe they won’t let us marry? What terrible manners. I bet you didn’t see that coming when you created HIV. Did you think when the first reported cases that were directed towards gay men that the world as we know it would sympathize? Which reminds me, give my best to the millions of men and women who are no longer here because of HIV, including my Uncle George.

I shouldn’t be so dramatic about everything because I did let HIV in my bubble. No doubt you heard that we’re involved? I bet you heard the news through the grapevine that I’m with HIV? Don’t worry; nothing to get bent out of shape over. HIV and I grew a lasting relationship over the past year and a half: I know where to find him if I need him and he leaves me alone, for now. We check in with each other about every three or so months, which is more than I can say of you, but I digress. Meanwhile, most of the homosexual community won’t talk to me because I’m with HIV. Whodathunkit?

Thank goodness you couldn’t be here in the days I hated being gay in a world that hates me for being gay. I had a fabulous time with the gentleman (which one it was strikes my memory at the moment) that inserted his tainted sperm in me. If not for him I would have never met HIV. It’s dashing, really. He opened up my circle of friends. In fact, I see my best friends, Atripla and Isentress at least twice a day, now. They have quite expensive tastes and eat me out of house and home, but I don't have the heart to say no to them. They send their love and gratitude for introducing us.

Sometimes I wonder if you hate me, but I’m just talking crazy. Right? I’d say “LOL” to you, but it would appear you’ve been missing from the world for so long that you’d have no idea what that means? Oh, you old fogy! Or should I assume that you possibly have kept up with the times after all and just abandoned me?

But, let me be serious for a moment and confess something to you, darling. I do have regrets and abandonment issues of my own. Since I’ve met HIV I’ve recently abandoned all the selfless men and women fighting to stop the spread of HIV. Yes, HIV is cheating on me with millions of people out there, but I let it happen. I, too, have been so focused on me that I forgot how important each and every one of them is to me. I just hope they know. Any advice for me considering you’re well versed in abandoning those in need?

Well I should wrap this rampant letter up, darling. I could only imagine all the other depressed and lonely people you need to attend to (or ignore) these days. I’d end with saying, “looking forward to your reply letter,” but I know how terribly busy you are being God and all. So until next time we coerce I’ll be holding down the fort on this cruel and unforgiving world you tossed me on.

Hugs and kisses,

Christopher

Only Self-Advocates Can End the ADAP Waiting List Crisis

2011-06-03T12:36:00.000-07:00

Ask anyone who currently works or who has worked on Capitol Hill and their answer will be the same. Constituents matter! In the 1978 groundbreaking analysis, Home Style: House Members in their Districts, political scientist Richard Fenno demonstrated the importance of various constituencies within a congressional district and how they impact Members of Congress. That is where former Speaker of the U.S. House of Representatives, Tip O'Neil got it right: All politics is local.

High-powered lobbyists are important. Clearly, advocates representing national organizations are important. But no single group is more important than the constituents residing in a Member of Congress' district, or state. In 2006, 2008 and 2010, there were three consecutive "change" elections, and many political pundits are predicting that 2012 just might be another. And that's why people effected by and affected by HIV/AIDS need to reserve their respective seats at the table. It’s about building relationships, solidifying constituencies, and influencing key decision-makers in Washington, D.C.

The ADAP Advocacy Association's 4th Annual Conference - being held in Washington, DC on July 5-7th - represents one, among many, opportunities for people living with HIV/AIDS to become more involved in the process. Members of Congress and their professional staffs would much rather speak directly to their constituents than "playing nice" with DC-based professionals. The conference theme, When will Washington come to the rescue?, was intentionally named as such because it highlights one of the biggest drivers behind the ongoing crisis facing the AIDS Drug Assistance Programs: lack of federal funding. Keep in mind, federal funding as a percentage for ADAP decreased from 72% in 2005 to 49% in 2010.

In essence, aaa+ understands that the ADAP crisis isn't about politicians, or pharmaceutical companies, or community AIDS Service Organizations - in fact, it isn't even about the funding itself. Rather, it is about the very people living with HIV/AIDS living in the United States who rely on the program to remain healthy, productive residents in their communities back home. What aaa+ hopes to accomplish with its 4th Annual Conference - and other programs - is to create an army of self-advocates who can end the ADAP waiting lists. After all, it is back home where they can most influence the decisions that adversely impact their daily lives.

Used in this context, self advocates can be defined as people living with HIV/AIDS, acting or speaking on issues that affect them or other people living with HIV/AIDS. Said another way, self advocates are people that communicate on behalf of themselves and others like themselves. Self advocacy has four integrated parts:

Strong self advocates are speaking up and speaking out

Community integration by participating in the community

Being part of a group to find support

Everyday opportunities and the expectation to be self advocates

In preparation for conference, all ADAP stakeholders - but especially people living with HIV/AIDS - are invited to learn more and hopefully participate. The agenda is available online, as well as the registration form (if you're a pharmaceutical company representative, click here). For those ADAP stakeholders seeking a detail explanation of why the conference is focused on the federal appropriations, please review the conference summary.

AIDS Drugs Take Backseat to Shrimp & Jell-O

2011-05-26T12:03:00.000-07:00

As of today, there were 8,310 people living with HIV/AIDS in the United States on waiting list under the AIDS Drug Assistance Program, according to the National Alliance of State & Territorial AIDS Directors. Additionally, there are thousands more who have been adversely impacted by other "cost containment" measures at the state level restricting eligibility (aka, kicked off ADAP). One of the biggest reasons why the ADAP crisis has unfolded over the last two years has been insufficient federal funding, whereby the federal commitment has dropped from 74% of programmatic expenditures in 2005 to 49% in 2010. Sadly, as the lives of thousands of people living with HIV/AIDS hang in the balance, our federal government has funded numerous "pet projects" - including "such programs as Jell-O wrestling at the South Pole, testing shrimp’s exercise ability on a treadmill and a laundry-folding robot, all funded by the National Science Foundation" (Washington Times, 05/26/11).

According to a new Senate report requested by Sen. Tom Coburn (R-OK), over $3 billion was mismanaged by the NSF. That's billion with a "B". Meanwhile, HIV/AIDS advocates were requesting a paltry $126 million from the federal government last year to help alleviate the growing ADAP waiting lists. While Sen. Coburn has not always earned favor from the HIV/AIDS community, there have been other times when, as one of the Senate's only two licensed medical physicians, he has provided unquestionable leadership (including being an original co-sponsor of S.3401, which would have used unobligated stimulus funding to eliminate the ADAP waiting lists).

It has already been documented how the President's stimulus law funded countless of non-essential programs (Read: Mr. President, please “stimulate” the AIDS Drug Assistance Programs), yet the administration opposed using those same dollars to help the ADAP crisis. The Democratic-controlled Congress did little to nothing from 2009-2010 to help ADAP waiting list patients. And now, despite a small increase for ADAPs in the Fiscal Year 2010 federal appropriations law, Republicans in the House of Representatives are proposing to dismantle many of the safety-net programs designed to help people living with HIV/AIDS.

It begs the question, where is the leadership?

It is absurd to think that in the wealthiest nation on Earth, people living with HIV/AIDS are being forced to go without their life-saving medications, but $3 billion can be wasted on shrimp exercising and Jell-O wrestling, among other things. Make no mistake about it, BOTH political parties are to blame for funding these projects. Until the HIV/AIDS community in general, and specifically ADAP stakeholders rise up and demand accountability and funding for proven programs such as ADAP, we will continue to see more and more people living with HIV/AIDS pushed aside onto waiting lists.

2011 Annual ADAP Leadership Awards

2011-05-13T11:45:00.000-07:00

There comes a time when reflection is necessary, especially during the most challenging times. To characterize the last two years as "challenging" for people living with HIV/AIDS - including those patients who rely on accessing treatment under the AIDS Drug Assistance Programs ("ADAPs") - would be an understatement, to say the least. Funding cuts...waiting lists...eligibility changes...and even death have reminded the HIV/AIDS community of the serious challenges they faced during the 1980s and early 1990s. Yet, they persevere and continue to fight and "act up" to protect their lives.

The ADAP Advocacy Association (aaa+) contends that ADAP has long embodied what successful HIV/AIDS programs should look like, not only because ADAP keeps people living with HIV/AIDS healthy, productive members of their communities, but also because ADAP represents a strong public health 'Return on Investment' to the taxpayers.” In light of the escalating ADAP crisis, aaa+ feels that it is important to step back and reflect on the good work being done on ADAP by so many leaders - especially since during times like these it is often easy to focus on the crisis itself.

With that in mind, on May 11th a call for nominations was issued for the aaa+ 2011 Annual ADAP Leadership Awards, which will recognize individual, community, government and corporate leaders who are working to improve access to care and treatment under the AIDS Drug Assistance Programs.

A Call for Nominations has been issued for the following awards:

• ADAP Champion of the Year (individual)

• ADAP Emerging Leader of the Year (individual)

• ADAP Corporate Partner of the Year

• ADAP Community Organization of the Year

• ADAP Lawmaker of the Year

• ADAP Social Media Campaign of the Year

• ADAP Grassroots Campaign of the Year

• ADAP Media Story of the Year

The awards will be presented during the 1st Annual ADAP Leadership Awards Dinner, being hosted by aaa+ on Wednesday, July 6th at 7:00 pm in Washington, DC. The dinner will be held in conjunction with its 4th Annual Conference, being held at the Westin Washington DC City Center on July 5-7th. Jeffrey Lewis, President & CEO of the Heinz Family Philanthropies will be the keynote speaker.

Clearly these awards won't eliminate the ADAP waiting lists, or restore much-needed fundings. But, what they will demonstrate is that the advocacy and activism does make a meaningful difference in the lives of people living with HIV/AIDS, further reminding all of us why we're in this fight TOGETHER!

Losing Access to ADAP: What It Means to be HIV-Positive

2011-05-06T10:19:00.001-07:00

Checklists. Every individual and organization has one in some sort of fashion, including the U.S. government. Whether they are logged into memory or jotted on paper it lists tasks to be completed usually in a specific priority. At some point or another everyone has endured that feeling of accomplishment when one of these “To Do’s” has been fulfilled and crossed off the list. This week in America the government proved to its people that they could cross off a task in their own agenda by killing Osama bin Laden. The next task that the government should surge their efforts towards in the interest of its citizens here at home: addressing the ongoing AIDS Drug Assistance Program (“ADAP”) crisis and how the number of patients losing access to this much needed program is not only rising, but getting fiscally worse. It must be illustrated to those [with the power to solve this problem] on what it means to be HIV positive today and the consequences of ignoring this issue will result in a financial burden on all Americans.

Doctors, therapists and social workers endlessly explain to the HIV patient that exercise, a well-balanced diet, and a stress-free environment are not only beneficial, but also vital for keeping the virus from developing internally and taking over. Of course, none of these variables are possible unless the patient adheres to the life-saving medications that allow them to be productive in their lives and keeps them from a hospital bed. And up until the recent years even with new infections the fatality rate from AIDS-related complications has significantly decreased. Applause for this breakthrough goes not only towards the medications that have been discovered to keep HIV-positive individuals healthy, but most importantly to the Federal and State government-funded program, ADAP through Part B of the Ryan White Care Act. Without this program, some speculate that HIV/AIDS would triumph as the leading cause of death in the country. For thousands upon thousands of HIV-positive individuals nationwide this “payer of last resort” is the only access they have to receiving the medications and medical care needed for ongoing sustainment as well as preventing the spread of the virus to non-infected people.

With that said, there is a shared anxiety in the HIV/AIDS community at the fact that this program is in jeopardy beyond extreme measures. Although the community is grateful that the President has ordered an additional emergency $25M in funds to Ryan White in FY2010 and its been further ordered for the continuation of some funds in the FY2011 budget (when so many programs have been cut in other committees) it must be pleaded that it isn’t enough to keep ADAPs afloat for another year. The continuation of insufficient funding for this program will not only definitively throw more HIV-positive individuals on waiting lists in the most obvious manner (7,674 in 11 states as of 4/22/11) but more individuals will be rejected altogether. Sadly, it doesn’t stop there: Eleven states with waiting lists will soon turn to 20, or 30, and soon all states and U.S. Territories will fall into this trap. Will this problem be addressed then?

With an unstable economy still at large many Americans, especially HIV-positive individuals, find themselves working two jobs in an attempt to pay the bills and get ahead. One job has no insurance and the other job has an insurance plan that doesn’t cover the HIV medical necessities. An individual that fits this example will most likely not qualify for ADAP even if they make only $500 over the eligibility limits in their state. Consequently, two-thirds of their salaries go towards monthly prescriptions and medical costs. The remaining few extra dollars at the end of the week doesn’t always cover the rent, food and bills. Sooner or later a definite choice will have to be made as to what’s more of a priority to pay for- the roof over their head or for groceries or for another month’s supply of medications and overdue blood work. In other words, ending up on the streets, starving or allowing the virus to strengthen, spread within and onto others and ultimately take over both physically and financially for all? Let’s not forget the rising stress levels from working two jobs under the influence of a compromised immune system. In this lose-lose scenario the individual’s health deteriorates because of no exercise, poor diet and high stress. The only hope for this individual is to be accepted to the ADAP program - with a price to pay by giving up one job and slashing their income by more than half. At least in this case this person’s HIV medicine, blood work, and doctor visits (all covered by Ryan White programs) will be covered. But, what happens when they are thrown off the program because the State had run out of funds? Out comes the virus from its hideout ready to take on more victims and dollars from the taxpayers.

Finally, if all the recent talk about lowering the Federal Poverty Level (“FPL”) for the ADAP program in some states gets approved then the result sets HIV-positive individuals in danger of still making too much money- even on one salary. There is no question these people, who so desperately need the help, will get kicked off the ADAP program for sure. To utter it once more- poor diet, lack of exercise, increase in stress level, and hardly clinging on to what pills are left in the pill box- will the virus take over? The answer is YES, without question or argument. Thousands of Americans are victims to this and thousands more are already in danger of falling into this category under the same foreshadowing issue. Scarily, these “thousands” will turn to millions in the coming years if this topic is not addressed. Is that what it will take for the government to understand that HIV/ AIDS and the ADAP Program under Ryan White are once again situations that cannot continue to be overlooked?

This is a true story of what it’s like to be HIV-positive in this day in age. One can only pray that all the wonderful testimonies about how healthy individuals have become thanks to the progress in medications and treatment will not become a story of the past. When diagnosed with HIV its assured by so many that a full life expectancy is imminent. That may no longer be the case.

Access to ADAP is the treatment livelihood for countless Americans living with HIV/AIDS, and it needs to be a top public health priority in the government. “Fighting to survive” should never be on any HIV-positive person’s checklist in this day in age.

Blog by Christopher Myron, ADAP Advocacy Association member from New York City

To be 'eligible' or not to be 'eligible' - that is the question!

2011-04-29T07:34:00.000-07:00

Webster’s New World College Dictionary defines the word eligible, eli·gible (el′i jə bəl), as an adjective to be 1) fit to be chosen; legally or morally qualified, 2) suitable or desirable, esp. for marriage or 3) Football allowed by the rules to catch a forward pass. The latter reference using a sports analogy is interesting, because imagine playing a game of football where half-way through the game the referees change the rules on you, making it harder for you and your team to win!

Now, consider these numbers: 99, 257, 89, 207.

Unfortunately, those are NOT just numbers - but rather they represent real people. They represent the numbers of people living with HIV/AIDS who one day were 'eligible' to receive services under the State's AIDS Drug Assistance Program ("ADAP"), then the next day were no longer eligible in Arkansas, Ohio, Utah and Virginia, respectively. Last time I checked, HIV-infection is a chronic disease if properly treated and AIDS is a life-threatening illness if not properly treated by anti-retroviral medications. By Arkansas, Ohio, Utah and Virginia changing their ADAP eligibility rules, did they send a message to these 652 people living with HIV/AIDS that their lives were no longer worth saving? Or maybe the States' actions were a way of saying to these people, "You are no longer suitable, or desirable."

These four states represented only the beginning of this emerging public health crisis, as other states are poised to follow their lead. A dangerous precedent has been set, and now numerous states are sliding down a very, very, very slippery slope.

Late last year, a warning was issued by the ADAP Advocacy Association (aaa+) that the ADAP waiting lists were only the “Tip-of-the- Iceberg” as an increasing number of HIV/AIDS patients were being kicked-off programs as states were changing their eligibility criteria.

The "invisible" ADAP waiting lists had yet to truly emerge. It begs the question, how many people heeded that warning?

At that time, several states had changed their program eligibility, thereby making clients who would have otherwise been eligible to receive services no longer eligible for ADAP. Arkansas reduced its financial eligibility to 200% Federal Poverty Level ("FPL"), North Dakota reduced its financial eligibility to 300% FPL, Ohio reduced its financial eligibility to 300% FPL, South Carolina lowered its financial eligibility to 300% FPL and Utah reduced its financial eligibility to 250% FPL. With these changes, many people living with HIV/AIDS could be forced to choose between basic necessities and their anti-retroviral medications.

The Ohio Department of Health issued a Notice of Public Hearing in accordance with Chapter 119 of the Revised Code (R.C.) and by authority of R.C. 3701.241, the Director of the Ohio Department of Health (ODH), or his designee, will conduct a public hearing at the time and place listed above, to consider the proposal to rescind current O.A.C. rules 3701-44-01 to 3701-44-08; and to file new rules 3701-44-01 to 3701-44-04. These rules pertain to the Ryan White Part B program administered by ODH.

To read the entire public notice, visit http://www.registerofohio.state.oh.us/pdfs/phn/3701_NO_136139_20110420_1518.pdf.

Now, Florida's ADAP - which is in complete disarray and shambles from gross mismanagement - is attempting to restrict their program eligibility from 400% FPL to 200% FPL. If approved, then thousands of Floridians living with HIV/AIDS would be put at risk.

Changing the eligibility requirements is "penny wise, pound foolish" because any small savings achieved in the near term is eliminated by the long-term costs assumed over time.

“If you cut the eligibility from [the current] 400 percent of the federal poverty level to 200 percent of the federal poverty level, that takes out a large income range where people can work and advance in their careers, accept promotions and eventually leave the ADAP system,” Jesse Fry told the Florida Department of Health at a recent public hearing in Tallahassee, Florida (The Florida Independent, 04/27/11).

As if the growing ADAP waiting lists weren't bad enough, now the "tip-of-the-iceberg" is rearing its ugly head with vengeance. Hopefully people living with HIV/AIDS will be given rules for the game by the state, and the state will honor its commitment and stick to them! After all, living with HIV/AIDS is no game!

When will Washington come to the Rescue?

2011-04-22T12:01:00.000-07:00

When President Barack Obama signed into law the Fiscal-Year 2011 appropriations law (H.R.1473), many programs didn't share the modest success achieved with the small funding increase for the AIDS Drug Assistance Programs ("ADAPs"). The law provides $885 million for ADAP. This is $25 million more than was obligated in FY10, after a $25 million transfer added supplemental funds to address waiting lists. The bill provides $8 million more than H.R.1 - which was the House-passed version. Whereas the ADAP Advocacy Association (aaa+) applauded the President and Congress for the small increase - especially since many other safety-net programs were cut or level-funded - it begs the question: How satisfied should ADAP stakeholders be with the result?

Yes, clearly we're grateful for the additional $48 million because it will alleviate the ongoing ADAP crisis, albeit temporarily. It was a grassroots victory more than a demonstration of leadership by the national HIV/AIDS organizations (including this one). But more needs to be done! More voices need to be heard! More people living with HIV/AIDS - especially those patients being directly impacted by the ADAP waiting lists - need to get involved!

At the time this blog is published, there are 7,885 people living with HIV/AIDS on ADAP waiting lists in 11 states. Among them, Arkansas with 56 people; Florida with 3,807 people; Georgia with 1,343 people; Idaho with 10 people; Louisiana with 894 people; Montana with 24 people; North Carolina with 178 people; Ohio with 341 people; South Carolina with 612 people; Virginia with 616 people; and Wyoming with 4 people. And that doesn't even include the "invisible waiting lists that stretch into the thousands of patients adversely impacted by other cost containment strategies.

Failure is NOT an option because lives hang in the balance.

In response, aaa+ – together with its Lead Sponsor AIDS Healthcare Foundation (“AHF”) and in coordination with the Community Access National Network (CANN) and Housing Works – is hosting its 2011 Annual Conference as an AIDS Drug Assistance Program Summit. This year’s conference theme is “ADAPs in Crisis: When will Washington come to the rescue,” which aims to assemble ADAP stakeholders from all of the various constituency groups – including patients, advocates, service providers, health care providers, pharmaceutical companies, allied health professionals, specialty pharmacies and others.

ADAPs are in crisis. The purpose is to identify key action steps to secure additional federal appropriations, programmatic reforms, and available public and private resources to alleviate the ongoing cost-containment strategies that are putting thousands of people living with HIV/AIDS on ADAP wait lists or program disenrollment.

Faced with the “Perfect Storm” that is being fueled by high unemployment, record number of uninsured, state budgetary cutbacks, high cost of medications and inadequate federal funding, there are a historic number of people being denied access to treatment. Without intervention from either the executive or legislative branch, several thousand people living with HIV/AIDS will be at risk of developing Opportunistic Infections (“OIs”), and thousands of others who are HIV-negative will be at greater risk of contracting the virus because their HIV-positive counterparts are more infectious when not taking Highly Active Anti-Retroviral Therapy (“HAART”). The conference provides an excellent opportunity to demonstrate the proven Return on Investment (“ROI”) of ADAPs.

To learn more, please visit http://www.adapadvocacyassociation.org/events.html.

Has Darkness Fallen on the Sunshine State?

2011-04-14T15:16:00.001-07:00

What was once revered by many in the HIV/AIDS community as a model state for the AIDS Drug Assistance Program (“ADAP”) – even to the point where many people living with HIV/AIDS fled their home state and moved to Florida where access to care and treatment was all but assured – has turned into a nightmare. High unemployment and inadequate federal/state funding, coupled with poor budgeting by the State Department of Health ("DOH") has led 3,967 Floridians living with HIV/AIDS to be placed on ADAP waiting lists, and that doesn’t even take into account the 6,500+ patients who were saved by a last-minute deal inked at the 11th hour with Welvista Pharmacy. And now, darkness seems to have befallen the Sunshine State as the state seeks to change its ADAP eligibility from 400% of the Federal Poverty Level (“FPL”) down to 200% FPL under the state's proposed Rule 64D-4.

What does that mean?

It means hundreds - if not thousands - of Floridians living with HIV/AIDS will be deemed ineligible for access to their live-saving medications under Part B of the Ryan White CARE Act. What the Florida Department of Health's Bureau of HIV/AIDS has proposed would be equivalent to playing in a basketball game, only to have the referee change the rules mid-way through the game in a manner that almost assure your team’s defeat. Except, what is happening in Florida is more than a game…it is a matter of life and death!

According to the AIDS Healthcare Foundation ("AHF"), Florida's Legislature is compelling DOH to hold workshops on Rule 64D-4. This rule concerns HIV/AIDS patient care services eligibility criteria, among which the income requirement is included - reducing the FPL income requirement from 400% FPL to 200% FPL. There is no alternative for these patients other than pharmaceutical Patient Assistance Programs ("PAPs"), which are not sustainable substitutes. The Legislature is trying to make a political statement that the ADAP waiting list can be effectively eliminated by lowering FPL eligibility. The change will not only throw off a massive amount of current ADAP clients, but also significantly reduce the wait list number. Florida would then no longer have the greatest wait list in the country and this action would set a precedent for other states to enact the same measure.

Making "cents" out of the mess

The math is simple. The Florida Legislature is trying to close the state's ADAP funding gap by balancing the budget on the backs of the very people the program is designed to help. With the high cost of the anti-HIV medications, access to care and treatment would be outside the reach for most of the Floridians living with HIV on currently on the state's ADAP waiting list.

"If you make $30,000 a year, you wouldn't qualify to ADAP," Carl Schmid of The AIDS Institute told the Florida Independent. "The drugs cost between $10,000 and $20,000 a year. You'd spend half your income on drugs" (04/11).

With the economic downturn, more Floridians are turning to ADAP for their anti-retroviral medications.

According to the National Alliance of State & Territorial AIDS Directors ("NASTAD"), in June 2009 there were 13,258 clients served on Florida’s ADAP. The Florida ADAP budget in fiscal year 2009 was $93,404,741 – of which $8,000,000 was the state contribution, or 9% of the total budget. In June 2009, drug expenditures totaled $5,747,226 with 27,992 prescriptions filled in Florida.1

In comparison to the previous year, there were 10,738 clients served by Florida’s ADAP in June 2008 – which represented a 23% increase. That same month, drug expenditures were $3,868,505 for 17,792 prescriptions filled, or increase of 49% and 57%, respectively.2

Considering that Florida only contributes about 9% toward its State ADAP (all other funding comes from the federal earmark and pharmaceutical company rebates), it is hard to imagine the Florida Legislature implementing more cost containment strategies. Then again, they did cut $2 million from the program two years ago - which many HIV/AIDS advocates contend helped to fuel the ongoing crisis in the Sunshine State.

So much for a safety net in Florida. But the Fat Lady isn't singing just yet...

The impending firestorm...

The proposed eligibility change has the state’s HIV/AIDS community up in arms. Don’t expect them to sit around quietly, either. The Department of Health has scheduled three public meetings in Tallahassee, Tampa and Miami, each of which will include a discussion of the proposed "changes to the Federal Poverty Level" as well as other issues about Drug Assistance Program eligibility. Expect nothing less than a firestorm in these three cities over the coming weeks. A massive mobilization effort is underway. Let's just hope that Florida's Legislature - as well as their newly-elected Governor - is listening.

Late last year, Florida had initiated the process of lowering its ADAP eligibility to 300% FPL (Rule Amendment No: 64D-4.002, F.A.C.), but it was halted when the Governor Rick Scott was sworn into office. His very first order of business as the state's new chief executive was to halt all pending regulatory actions, including the proposed rule impacting ADAP.

[Photo: Florida Governor Rick Scott]

Some HIV/AIDS advocates were totally blindsided when the new rule was proposed that called for even steeper eligibility restrictions. Yet others have been bracing for the worst. Florida, like many other states, finds itself in the midst of a fiscal mess; but rather than adopting policies based on what is often termed "shared sacrifice," Floridians living with HIV/AIDS appear to be the ones sacrificed under the proposed changes.

"And unfortunately, it may be for all Ryan White B funded programs....this really shouldn't be a surprise to anyone, as it was being proposed to lower it it to 300% of FPL before Governor Scott suspended rule making in the State," summarized David Brakebill, aaa+ member from Key West.

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1 National Alliance of State & Territorial AIDS Directors, “National ADAP Monitoring Project Annual Report,” Summary Table I, p. 13, May 2010.

2 National Alliance of State & Territorial AIDS Directors, “National ADAP Monitoring Project Annual Report,” Summary Table II - Total Clients Enrolled/Served, Drug Expenditures, and Prescriptions Filled, June 2008 and June 2009, p. 14, May 2010.

HIV Employment Roundtable

2011-04-08T17:10:00.000-07:00

On Friday, April 8th, U.S. Department of Labor Secretary Hilda Solis and DOL's Office of Disability Employment Policy ("ODEP") Assistant Secretary Kathy Martinez hosted an HIV Employment Roundtable. This Roundtable brought together a cross-section of government agency representatives, HIV/AIDS service providers, employers, researchers, advocates, and members of the HIV/AIDS community to discuss improving employment for people living with HIV/AIDS. Among the invitees were the ADAP Advocacy Association's CEO Brandon M. Macsata, as well as Board Members Anthony Jackson, community member, and Crosby Cromwell, Senior Manager - Constituent Relations for Walmart.

Among the invitees asked to share their personal stories was Mark Fischer of Washington, DC. Below is Mark's moving testimony:

Comments of Mark S. Fischer
U. S. DEPARTMENT OF LABOR – HIV/AIDS EMPLOYMENT ROUNDTABLE
Convened by Secretary Hilda Solis – April 8, 2011

I appreciate the invitation to speak to today and thank Secretary Solis and her staff for initiating this valuable HIV/AIDS Employment Roundtable that advances a much needed national dialog.

While my remarks today draw on my personal experience, I hope they will reveal a much larger, often unseen, picture and lead to action that meets crucial needs of those who cannot advocate for themselves.

Preparing these remarks has forced me to take a journey of recollection and reflection that has proven both painful and revealing for me.

Ten years ago last month, at the age of 51, I was forced out of a career position that represented the achievements of a lifetime of effort. While I have acquired a necessary sense of acceptance and done my best to move on, not a day goes by that I do not wish I could regain what was taken from me on that day . . . the financial independence, the sense of purpose, and the feeling of accomplishment that my job once gave me.

To put my loss in perspective, allow me to share a little about where I came from and how much I had managed to accomplish prior to losing my job.

I am a child of the great American immigrant experience whose ancestors arrived in the United States is a little over a century ago.

The first generation, my grandparents, were minimally educated. They supported themselves and their children through manual labor and the trades.

The second generation, my parents, both graduated high school. My mother also graduated from business college. My father worked in construction and my mother in business both before my I was born and after both my sister and I began attending school.

In the third generation, I was the first born on both sides of the family. Based on income, my family would be called low-income, working-class. What we lacked financially was more than made up by very devoted parents and high standards. We never wanted for food, clothing or shelter but luxury and waste were not possible. I began mowing lawns to earn spending money at age 12. I always had summer jobs and worked part time throughout college.

Education was stressed as the key to a better future. I attended high quality public schools in a working class neighborhood. Academically, I ranked in the top ten of a class of nearly 600, and achieved success as class president, newspaper editor, and the like. I earned early acceptance and need-based financial aid at Duke University where I received my Bachelor’s and Master’s degrees. To pay for graduate school, I taught school full time while attending classes at night and during the summer.

Over the next 30 years in the workforce, I worked whatever hours were needed to get the job done, showed initiative, took personal responsibility and, in return, regularly received praise, raises and promotions. My job and doing it well were a key part of who I was and how I saw myself. They gave me reason to envision a good future.

In 1998, I accepted a new position with the convention, meeting and special events firm where for ten years I had been a key player in creating major growth that transformed the company from a local small business to an enterprise with national operations serving top-rung clients from across the nation and around the world. As Director of Creative Services, I became the “hub” for company success, efficiency and profitability. I created program concept, designed proposal formats, developed specific components, selected suppliers, negotiated costs, established operating logistics, set selling prices and managed profitability. I felt that I finally had “the perfect job” based upon my interests, skills and experience. For the first year, I got glowing reviews and praise for my efforts. I was often required to work late to meet deadlines agreed to by others without my prior consent but I loved the work and I loved the success.

In 1999, the company President supported by the company owner began to make an issue of the fact that I was not at work promptly at 9:00 AM every day. The late hours I was forced to keep behalf of the company, my health needs and the side effects of my HIV meds, all known to them, did not seem to matter.

Near the end of 1999, I was unable to make an early morning departure to be a part of an out-of-town client presentation that was rescheduled at the last minute. Reaction was extremely negative and totally lacked any understanding of my health constraints. From there, my relationship with my two superiors deteriorated. The staff seemed to adopt a negative view of me that I believe was fed by my superiors. My work quality did not decline but the nitpicking and misrepresentation of facts grew. The strain on me was persistent and draining.

In early 2000, I missed four solid weeks of work as a result of physical and mental exhaustion caused by over a year of fighting to stay employed so I could meet my financial obligations and support my disabled partner.

Upon my return to work, despite the fact that I was 15 pounds lighter and noticeably pale, I was handed a 30-day to-do-list that was humanly impossible to fulfill. I was subjected to the supervision of a new part-time HR specialist who supervised nobody else, was re-evaluated using false information, and was called into an adversarial meeting with the company attorney, the owner, president and HR specialist without any prior notice.

Exactly 30 days after my return, shortly after the close of business, I was asked to meet with the owner and the attorney, again without prior notice. When I said that was not possible, they came into my office, verbally notified me of my termination, and told me to vacate my office immediately. They wanted me to leave without any of my belonging but I insisted on taking them with me. They had hired a security guard to escort me out. So, in about one hour, I packed up and left. By the time I got home, my voicemail message had been changed, my email account had been deleted and I no longer existed at that company.

I was offered the opportunity to receive three month’s severance pay and health insurance but only if I would sign a severance agreement that totally absolved the company and all staff any wrongdoing and relinquished all my rights to any legal recourse.

While the “official” reason for my termination was “reorganization”, plenty of undocumentable evidence pointed to the real reason . . . my health. I had been told that the premiums for my health coverage were extremely high, that younger people could be hired for less money, and more. It had been made clear that the realities of living with HIV were totally unrecognized or unimportant known to my superiors.

I eventually signed the separation agreement because I was exhausted and was advised by numerous credible sources that chances of successful recourse through EEOC or the courts were practically non-existent and would prove emotionally and financially devastating.

In a sad post script, the company that I helped to build and to triple its multi-million dollar revenues over a 12-year period failed and closed its doors within two years of my departure. While that reinforces my sense of self-worth, it does absolutely nothing to fill the void left by the loss of my career.

Then, and even sometimes now, that termination feels as if a major limb, perhaps two, was amputated from my body.

On the night I was terminated, my initial reasoned reaction to the loss of my job was that I would simply get another job.

However, by the next morning, exhaustion and anxiety set in. Soon, the massive challenge of mere financial survival pushed the job search out of the picture on a day-to-day basis.

Unbeknownst to me, between November 2000 and March 2001, my t-cell count had dropped from the high 300’s to 75.

I steadfastly resisted the idea that I should file for disability retirement but eventually was persuaded to do so only to be denied by Social Security.

I used up my 401K and profit sharing to pay bills.

In the end, I was forced to sell my house to avoid foreclosure and loss of my equity.

Just days after moving out of the house, I was diagnosed and hospitalized with pneumocystis carnii pneumonia . . . which was a blessing in disguise because it qualified me for SSDI.

However, while waiting for SSDI benefits to begin and even longer for Medicare eligibility, I consumed the profit from the sale of the house.

The total period required to secure disability income and establish full financial security took nearly five years. That included qualifying, being approved for, satisfying the waiting period, clearing the waiting list, or whatever else may be required for SSDI, Medicare, ADAP, TBRA (rent subsidy). Securing those essential support services is a massively time consuming endeavor that leaves time for little else.

Along the way, I made frustrating and futile attempts to use a vocational rehab system that is ill suited to the needs of a skilled experienced professional attempting to make an emotionally challenging career change.

I am now financially stable but that stability is totally dependent on external sources. My independent resources were totally depleted trying to survive the unjust separation from my job and its considerable aftermath.

I am a part of the first generation of HIV-infected people. I have no way of knowing what lies ahead. I am caught between my dreams and aspirations on one hand and a potentially grim and challenging future on the other. I want a job and all that comes with it. However, to maintain my health, I need certainty and stability more. Many people are shocked that I survived the challenges of the last ten years. I doubt that I could survive if I went back to work, relinquished my safety net of services, and then had a health crisis that forced me to run that grueling five-year gauntlet again.

For now, I have chosen to devote my considerable experience, ability, compassion, time and energy to helping those less blessed than I. My struggle made me realize that if a person with my education, sense of empowerment and experience often wanted to just give up, those less blessed must be suffering more and getting far less of what they need to survive. That is why I serve as Committee Chair and Executive Committee member of the Ryan White Planning Council for the Metropolitan Washington, DC EMA, have helped form and serve as the Vice President of Back to the Basics Please, a 501 c 3 devoted to connecting people to a full range of care that includes HIV, substance abuse and mental health regardless of where they live in the US, and support a wide variety of other community outreach programs.

There are no easy answers to my situation and certainly no one-size-fits-all solutions for all people living with HIV.

However, from my personal experience and my work with other People Living With HIV, I offer the following suggestions that I believe would improve the ability of HIV-positive people to retain or regain employment.

For those who are employed but dealing with side effects of HIV infection or HIV medications, the following support for their employment rights and assistance to employers are crucial.
1. EEOC defense of employment rights under ADA including highly publicized resources for assistance with grievances is essential. I applaud the EEOC for its recent commitment to doing so.

2. Availability of resources for employers that include training programs, “best practices” guidelines and accommodation prototypes or examples that will make compliance easier and more common.

3. Access to timely and effective mediation as an alternative to the time-consuming, cost-prohibitive option of taking formal legal action to resolve disputes in the courts will increase continued employment and keep highly competent, productive individuals in the workforce.

For those who have lost employment as a result of HIV-related illness or side effects of HIV medications and seek re-entry into the workforce, the following effective and appropriate resources are essential.

1. Mental health and employment counseling to address any damage that may have resulted from the previous loss of employment, to deal with any negative self-image issues related to being HIV-positive and to promote acceptance of any reduced work ability or career expectations that may exist. This support is crucial to job search and performance success.

2. Vocational rehabilitation counseling and assistance that are appropriate and targeted to the needs the specific HIV-positive person whose dreams and careers have been forcibly re-routed by a disease they never envisioned must be provided to give the individual the plan and the tools with which to move ahead. (My frustrations in this realm are a story that I haven’t the time to tell here.)

3. Employer education and assistance programs that “sell” the merits of hiring experienced competent people living with HIV, the effective ways of accommodating their needs, and allay unjustified employer fears are required to create an accepting environment in which an HIV-positive person can sell his or her attributes instead of having to defend his or her disease.

4. Employment resources for job seekers that include HIV-supportive companies are crucial to guide job seekers toward options that will be informed, respectful and supportive of their needs. While such a resource may not be adequate to meet the employment needs of all HIV-positive people, they will assist many, create success stories and demonstrate that hiring HIV-positive people is good for people, good for business and good for the bottom line.

5. Requalification for essential social services and the support “safety net” needs to be simplified and guaranteed for those who return to work, relinquish benefits and then face a health crisis that makes them unable to work. HIV/AIDS, while increasingly treatable still creates a uncertain and unpredictable path for those living with the disease. Each individual reacts differently to the infection and to treatment. As a result, the support service system needs to adapt to changing realities and in a timely and effective manner.

Those who were summarily separated from the source of their livelihood because their disease was inconvenient to their employer are understandably skeptical about trading financial stability for employment that can be terminated at will thereby repeating the nightmare from the past.

Those who lived in uncertainty and often desperation while they awaited access to essential life supporting services are justifiably anxious about risking access to their hard earned safety net if they return to work, relinquish services and then need them again.

Again, this is a complicated challenge with no easy solutions. I hope my comments will be of use as we seek to move forward. Thank you.

ADAP CRISIS & LAWMAKERS: Stop Bickering, Start Saving

2011-03-29T10:53:00.000-07:00

In a nation victimized by economic turmoil, stagnant unemployment rates, union disputes and soaring gas prices with no end in sight makes it easy to understand the anger and frustration behind Americans of all backgrounds. The stronger, louder individuals will rally and protest in effigy. The silent write letters to elected officials expressing their concerns. Both may benefit in their own right. But, how does one comfort an American that is not only angry and frustrated, but scared as well? Scared that their life will be cut short thanks to a crisis that is disturbingly growing stronger…yet, could have been avoided and can be resolved instantly?

How did this all start? Indulge me to perform a brief history lesson. ADAP (AIDS Drug Assistance Program) are a set of programs under the Ryan White CARE Act (enacted in August, 1990.) The program requirements stand independently and are outlined in all 50 states, including D.C. and U.S. Territories. It provides appropriate medical care, medicine and HIV/ AIDS medications, to uninsured and underinsured HIV positive individuals who require assistance to pay for their treatments. The RW CARE Act is funded on the State and Federal level and rebates from participating pharmaceutical companies with an incentive Return on Investment (ROI.) A final note to make here is the two dubious political allies, Ted Kennedy (D-Massachusetts) and Orrin Hatch (R-Utah), came together and authored the RW CARE ACT. Since its endorsement over two decades ago, it prolonged the lives of millions living with the virus and the bill has been reauthorized four times, most recently by President Barack Obama in October, 2009, extending the program for four more years.

In addition to numerously obvious reasons, it’s imperative to understand why ADAP, the “payer of last resort,” is so vital in a society filled to the brim with unemployed workers. Let’s assume for a moment that the majority of the members of our executive and legislative branches of government, by no fault of their own, haven’t a clear understanding of what it takes to treat HIV positive individuals. To give a lemans term evaluation let’s use children in a scenario (we were all one once.) Picture a child playing in his/her backyard on a hot summer day. The child falls to the ground and their arm begins to bleed. The mother witnesses this and comes to the rescue by cleaning the wound with disinfectant and finishing with a Band-Aid over the wound. The mother’s actions significantly decreased the possibility of an infection promoting a fully healed arm. By comparison, a healthy HIV positive person is laid off from work and loses their insurance. A fully funded ADAP program in their respective state will come to the rescue and grant the patient access to the daily medications they need to stay healthy, lead a normal, productive life and hopefully get back into the workforce. Because of the state and federal government’s recognition and granting of increasingly needed funds favored the provision of ADAP services for this person, thus significantly decreasing the probability of becoming an AIDS patient or infecting others with the virus.

Now let’s take the same scenario and alter the situation a bit. The child falls to the ground and their arm begins to bleed. The child is afraid to tell their mother because they know that she will put painful disinfectant on the wound. In an effort to avoid the sting the child sneaks into the bathroom and places a Band-Aid over the wound. Several days later, the wound spreads up his/her arm and gets infected to the point that hospitalization is required. By comparison, a healthy HIV positive person is laid off from work and loses their insurance. The ADAP program in their state is drastically underfunded due to budget cuts from state and federal legislators and unable to keep up with demand. The person is put on a “waiting list.” What the government is unaware of is the HIV positive person had only one day worth of pills left. Weeks of pleading and appeal to be accepted into the program had gone by. All the while the lack of medication needed to sustain the virus in the patient’s body allowed replication of the HIV cells in large quantities. The now very ill, unemployed man is rushed to the hospital to be treated as patient with AIDS-related complications.

The ADAP Crisis. It is a crisis quite familiar and reprehensible to those most affected. Where do we place blame? Who cares? There’s no time to debate when people’s lives are at stake. I call on the GOP-controlled House of Representatives as well as the Democratic Executive branch (most notably President Obama, himself) to set aside the partisan bickering and solve this crisis…yesterday!

Let’s take a look at some facts that helps illustrate the direct result of partisan bickering leading to a crisis far deadlier than it should ever have been permitted; and if they don’t act now it’s confidently expected to worsen with each passing day. Taken from the White House website, in 2009 when the President signed for the extension of the RW CARE Act he quoted the following about the war on AIDS.

“This is a battle that’s far from over, and it’s a battle that all of us need to do our part to join…So tackling this epidemic will take far more aggressive approaches than we’ve seen in the past—not only from our federal government, but also state and local governments… If we want to be the global leader in combating HIV/AIDS, we need to act like it…What we can do is to take more action and educate more people. What we can do is keep fighting each and every day until we eliminate this disease from the face of the Earth.”

Where do I begin with this? If this message falls onto the President’s desk in the oval office I hope to offer him a bit of education on the subject. Yes, we agree this battle is far from over, but why hasn’t he done his part as the leader of the free world? Perhaps in his mind and in an effort to decrease the national deficit aggressive approaches means his five-year freeze order on discretionary spending programs, which thankfully didn’t include RW. If this were the reality show, “Survivor,” I’d say our community dodged a bullet and were safe from elimination for another week. But, for how long? As said, the country needs to start acting like the global leader in this fight. Recently the President responded to the crisis by appropriating a few million dollars in emergency funds to the program. That is an example of a Band-Aid without disinfectant, prolonging the inevitable spread of the once isolated boo-boo on a child’s arm. It’s been brought to the President’s attention at nauseating: Take action, get the remaining $126 million needed (and I’m sure that is a conservative figure) for the program just to keep it solvent for another fiscal year. It’s a chance for him to show leadership, that our government cares about its constituents. I ask our Democratic President, who tells us to keep fighting each and every day did he mean HIV and AIDS patients must fight the fight on our own to stay alive each and every day?

[Photo: Vice-President Biden (l) next to Speaker Boehner, shaking President Obama's hand in U.S. House of Representatives during 2011 State of the Union address]

The Republicans are not exactly stepping up to the plate, either. They, too, have a chance to shine; in particular the House Speaker, Senator John Boehner. In an effort to reject the President’s health care reform bill the House slashed funds from preventative, health and social services. Thankfully, for the second time, our community was safe from elimination. Does this make us finalists on Survivor? But, for how long? Abstaining from detail about the negatives of said cuts (as that is an issue for another day) I want the House to understand why it is important that they not only refrain from cutting into RW next, but the consequences of doing so:

HIV is an extremely intelligent virus. It waits for the human body to do something fatal such as turning our backs and forgetting to take the pills-even for a day. When that happens the virus is free to replicate within the human, obstacle free. And if and when the day comes that the government finally grants the necessary funds for ADAP the damage may have already been done; during the period when the patient was on a waiting list the HIV virus grew a resistance to the medication. In other words, the HIV virus is even smarter than before and harder to treat! That is exactly what Congress and the President is doing so long as they fail to react to this crisis. As we speak the once healthy 7,553 Americans that have been cut off of their life-saving medications and placed on waiting lists are growing resistances. Because the Democrats and Republicans have failed to work together to take action these immune-compromised people have no way to halt the spread of the virus within themselves and to others and risk infecting thousands of HIV negative individuals. Unfortunately, the scary truth doesn’t end there.

In 2005, the Federal government covered 72% of the programs’ cost. As time progressed and even though demand increased the Feds decreased their contribution as low as 49%. State contributions couldn’t keep up and the certain waiting lists were born. Less than a year ago, in July 2010, there was 2,359 Americans on a waiting list. December 2010, they had grown to 4,543. By February of this year, there were over 6,000. With the 7,553 latest figures already mentioned one can deduce the terrifying direction our country is heading at an overwhelmingly increasing rate. And these numbers don’t include the “invisible waiting lists,” consisting of people who don’t bother applying for ADAP assistance due to their state’s current waiting lists. There are accounts of patients cutting their pills in half just to spare a few more days. Regrettably, the lighter dosage proves too weak for fighting and the virus will continue to enhance.

We can all agree that no one should rely solely on the government to help. However, in an era of a recession sometimes it’s the only option. The government needs to realize when an individual is HIV positive it is inevitable that medication and treatment is in their not so distant future. The demand will continue to increase unless the government plays their role to stop the spread of the disease: that role is to fund the ADAP program, get the individuals already infected the medical care they require. That will decrease the risk of new infections. If the government fails to apply, the financial burden placed on America in the foreseeable future will result in figures I dare not imagine.

I don’t care who does it, Democrats or Republicans, but someone has to end this crisis now! In 1990, a miracle happened when a Democrat and a Republican nourished a bill that prolonged the lives of millions. It happened before and I hope it happens again. Don’t allow useless bickering get in the way of pride when precious minutes are going to waste. Please, save my life and the much-needed ADAP program.

Blog by Christopher Myron, ADAP Advocacy Association member from New York City

Mr. President, please “stimulate” the AIDS Drug Assistance Programs

2011-03-23T09:42:00.000-07:00

Today, there are 7,372 people living with HIV/AIDS (“PLWHAs”) in the United States being denied access to life-saving medications under the AIDS Drug Assistance Program (“ADAP”). ADAP – which is a federal-state, payer-of-last-resort program – is authorized under the Ryan White Comprehensive AIDS Resources Emergency (“CARE”) act. The law in general has enjoyed strong bipartisan support since it was first passed in the 1990s, and ADAPs specifically have been a Return on Investment (“ROI”) model since the federal government began pumping money into them when President Clinton and Speaker Gingrich were in office.

It is hard to imagine that in the most powerful, richest nation in the world there are people on ADAP waiting lists. But it gets worse!

There are thousands more PLWHAs being denied care because States are enacting “cost containment” strategies – including changing eligibility requirements. In other words, one day PLWHAs are eligible to receive assistance, then the next day they aren’t eligible. These are known as the “invisible” ADAP waiting lists. This has already played out in Arkansas, Florida, Ohio, Utah, and Virginia.

How is that for fair? How is that for protecting the safety net? How is that American?

Maybe fighting HIV/AIDS is no longer “sexy” here stateside. It sells well in the media to fight cancer, obesity or Autism because HIV/AIDS is a problem “somewhere” overseas, right? Unfortunately, facts tell a different story because HIV infection rates are climbing rapidly – and not just in the gay community. They are increasing in rural communities, as well as certain metropolitan areas (e.g., DC has HIV-infection rates equivalent to Third World countries); it is a problem disproportionately impacting women, and racial and ethnic minorities; and it is showing alarming signs of exploding in younger generations of Americans.

That aside, ADAP waiting lists are putting thousands of lives at risk because they deny access to care and treatment (thus making PLWHAs more prone to opportunistic infections). Furthermore, ADAP waiting lists are potentially putting even more people at risk for getting infected with HIV, because PLWHAs not receiving anti-retroviral therapy are more infectious.

How is that fair? How is that for protecting public health? How is that American?

The ongoing ADAP crisis is being fueled, by in large, because federal spending has been inadequate – despite small budget increases under both President Bush and President Obama since 2005. The federal share of ADAP spending decreased in FY2009 to 45% from 49% 2005, while state share increased from 14% to 19%. Insufficient federal funding is evidenced by only 3% increase over previous fiscal year, compared to 61% increase in state level funding.

Here is the real “kicker,” too. The ongoing ADAP crisis could be solved with as little as $126 million for the current fiscal year. That’s “M” as in “million” and not “B” as in “billion.” That’s about as much as the U.S. Department of Defense spends on paperclips in a month.

But recognizing the fiscal climate in Washington, DC and the need to address the federal government’s addiction to spending money it doesn’t have – as well as the necessity to address this nation’s ballooning federal debt – it makes sense to be cautious about spending more money. That said, ADAPs have routinely proven their cost-effectiveness and demonstrated excellent ROI – especially for a public health program. But that’s another conversation.

However, there is an immediate short-term solution that warrants consideration!

[Photo: Sen. Richard Burr (left), Sen. Tom Coburn (center) and Sen. Jon Cornyn (right)]

For the better part of one year, many in the HIV/AIDS community have supported legislation introduced by Sen. Richard Burr (R-NC) that would use unobligated stimulus funding. The "Addressing Cost Containment Measures to Ensure the Sustainability and Success of the ADAP Act" (S.3401) – or ACCESS ADAP Act – would transfer $126 million from discretionary amounts appropriated under the American Recovery and Reinvestment Act (“ARRA”), Public Law 111-5, that remain unobligated, to be used by the Secretary of Health & Human Services in fiscal year 2010 to provide assistance in reducing waiting lists under the AIDS Drug Assistance Programs.

Unfortunately, President Obama and many in Congress have been shy toward S.3401. Opponents to the legislation claimed that the stimulus money isn’t supposed to be spent in such a manner – despite the law’s unambiguous language to the contrary. The law includes language citing a public health emergency as an example of when unobligated funds should be sent to the States.

Yet, stimulus money has been spent funding anti-obesity television campaigns to the tune of $650 million. The Department of Health & Human Services (“HHS”) has used the money to fund its Communities Putting Prevention to Work (“CPPW”), including grants to 31 states and the District of Columbia. New York City received $31.1 million, with $15.5 million directed toward anti-obesity efforts and another $15.6 million for anti-smoking campaigns. HHS referred to these as “interventions.”

What about the money spent to beautify the District of Columbia? That’s right! The District is proudly displaying signs touting stimulus money being used to pay for mulch in and around the District of Columbia, as seen in this recent photo. “This green project is funded by U.S. EPA,” reads the sign.

Sure it makes the District of Columbia look great, and is probably helping to pay for some public employee’s paycheck – but it begs the question about priorities?

To make matters worse, yesterday during a House Energy & Commerce Committee’ Oversight and Investigations Subcommittee hearing, lawmakers examined stimulus spending by the Department of Energy. Only $12.4 billion out of $35 billion appropriated has been spent thus far. Sure it was a partisan hearing, but aren’t they all in today’s political climate.

This isn’t a matter of partisan politics – especially considering the partisan debate surrounding President Obama’s stimulus package – but rather a matter of life and death. If the stimulus is good enough to pay for anti-obesity and anti-smoking ads, or landscaping projects, then surely the lives of people living with HIV/AIDS deserve the same level of commitment.

A hypothetical example yields a compelling argument that President Obama and Congress should consider:

Charlie is a 29-year old black single father living in Gadsden County Florida. He and his wife found out they were infected with HIV when she died from complications of AIDS-related pneumonia the previous year. Charlie is on a waiting list to receive AIDS drugs but between his depression and efforts to care for his children he is unable to access the help he needs to navigate the Pharmaceutical Patient Assistance Programs. He himself gets sick. He enters an emergency room in Tallahassee, FL and is subsequently admitted for a five-day stay.

His emergency room visit is near the average for this hospital at $2,783 (source Florida Heath Finder.org.) The hospital stay is near the national average of $24,000. He receives additional bills from doctors, radiologists and therapists for $750. You can compare this total to the cost of the AIDS drug he would need for an entire year. Charlie is what is known as therapy naive so the most inexpensive combination therapy drugs would be effective in reducing the virus to undetectable levels. The annual drug cost would be around $15,000 per year. Compare that to $33,830 in 6 days for hospitalization.

A penny wise, pound-foolish?

ADAPs need to be “stimulated” now with stimulus money, but more importantly, PLWHAs need Presidential leadership now. They’re losing hope!

Brandon M. Macsata, CEO
ADAP Advocacy Association (aaa+)

You Win Some; You Lose Some!

2011-03-02T12:28:00.000-08:00

There has been no shortage of ADAP-related news and developments over the last month - some good; some bad!

While the crisis is national in scope, Florida's crisis is so severe that it continues to garner much of the national spotlight - even as a catastrophe was averted earlier this month (see related Fair Pricing Coalition press release below). The Los Angeles Times over the weekend ran an excellent news story, entitled "Other routes to HIV drug assistance: There are options beyond sitting on a state program's waiting list," which also included important information about where to look for help. The article can be viewed online. Earlier this month, PBS ran an online story, "Funding Shortage Threatens AIDS Drug Programs." The PBS story highlighted many of the challenges being faced in Florida. The article can be viewed online.

aaa+ released two long-awaited Public Service Announcements (PSAs) about the AIDS Drug Assistance Programs. The PSAs included a 60-second video for television, as well as a 5-minute video for the Internet. The former began airing on nearly 300 media outlets nationwide, so hopefully it will raise some much-needed awareness about ADAPs and the important role in plays in the lives of so many people living with HIV/AIDS. They can be viewed online. The PSAs, as well as the recently-convened 2011 ADAP Emergency Summit, continued to receive excellent news coverage.

There was also some much-needed good news out of Washington, DC. While the U.S. House of Representatives was debating the federal government's budget for the current fiscal year, Florida Democrat Rep. Alcee Hastings introduced an amendment to provide an additional $42 million to the cash-strapped program (Note: October 1st represents the start of the federal government's new fiscal year, but because the Congress failed to pass a budget prior to September 30th the federal government has been operating under a series of 'Continuing Resolutions' - or short-term funding mechanisms). The amendment - which is largely due to the efforts of the AIDS Healthcare Foundation - passed unanimously by voice vote. It reads as follows:

The amounts otherwise provided by this Act are revised by reducing the amount made available for "Department of Health and Human Services, Health Resources and Services Administration, Health Resources and Services'', by reducing the amount made available for "Department of Health and Human Services, Centers for Disease Control and Prevention, Disease Control, Research, and Training'', by reducing the amount made available for "Department of Health and Human Services, National Institutes of Health'', and by increasing the amount made available for "Department of Health and Human Services, Health Resources and Services Administration, Health Resources and Services'', by $14,000,000, by $14,000,000, by an additional $14,000,000, and by $42,000,000, respectively.

aaa+ was among the first organizations to applaud Rep. Hastings for his leadership on the ADAP crisis with his amendment.

The 'Hastings Amendment' - as it is known - came on the heels of aaa+ issuing its 2010 ADAP Congressional Scorecard, in which EVERY Member of Congress was given a failing grade. Clearly Hastings' amendment was a bright spot during a very dark "perfect storm" ravaging the nation's ADAPs. The rational behind the decision to fail the entire U.S Congress is actually very simple, although the decision wasn't taken lightly. Despite ADAPs enjoying strong bipartisan and bicameral support in the Congress, lawmakers failed to do anything while ADAP waiting lists exploded and thousands of people living with HIV/AIDS languished waiting for their life-saving medications. It is important to mention that some lawmakers in the U.S House of Representatives and U.S. Senate received an "Honorable Mention" for their work on ADAP last year. The 2010 ADAP Congressional Scorecard can be viewed online.

But not all the ADAP-related news has been so welcomed...

In an effort to address the rising federal budget deficit, House Republicans have embarked on a campaign to slash spending. Their first target is the current fiscal year's spending bill (same bill that the Hastings' amendment was incorporated into). Unfortunately, some of the targeted discretionary spending cuts include important 'safety net' programs, including WIC - $758M, Food & Drug Administration (FDA) - $220M, Community Health Centers - $1.3B, Family Planning - $327M, Centers for Disease Control & Prevention (CDC) - $755M, National Institutes of Health (NIH) - $1B, Substance Abuse and Mental Health Services - $96M, LIHEAP ("Low Income Heating & Energy Assistance Program") Contingency fund - $400M, and Community Services Block Grant - $405M, just to name a few. Ryan White and other HIV/AIDS-related programs have been sparred, thus far.

Meanwhile, President Obama introduced his Fiscal Year 2001 ("FY11") budget. In an effort to out maneuver the House GOP on spending cuts, his FY11 budget includes a five-year freeze on most discretionary spending programs - which didn't include Ryan White programs. While the President did propose some modest spending increases, many in the HIV/AIDS community felt that the President failed to fund these programs adequately.

The ADAP Advocacy Association will continue to monitor the ongoing ADAP crisis. Thanks for your ongoing interest and support!

Brandon M. Macsata, CEO
ADAP Advocacy Association (aaa+)

WHY ADAP ADVOCACY MATTERS: 2011 Emergency ADAP Summit Recap

2011-02-02T07:04:00.000-08:00

The ADAP Advocacy Association (aaa+) this past weekend (Jan. 29-30th) successfully convened the year's first national gathering of ADAP stakeholders in Fort Lauderdale, Florida for its 2011 Emergency ADAP Summit. The two-day event focused on the continuing crisis facing the cash-strapped AIDS Drug Assistance Programs, filled with important updates, lively discussions and timely grassroots advocacy trainings. Held in the epicenter of the ongoing crisis - Broward County, Florida - ADAP stakeholders received the most up-to-date analysis from Murray Penner of the National Alliance of State & Territorial AIDS Directors, or NASTAD (Murray also represented the Fair Pricing Coalition), Tom Liberti of the Florida Department of Health and various pharmaceutical company representatives talking about their respective patient assistance programs. But probably one of the most constructive sessions involved a grassroots advocacy training led by Christine Campbell and Larry Bryant of Housing Works, Joey Wynn of Broward House and Joseph Terrill of AIDS Healthcare Foundation. The session demonstrated that while many HIV/AIDS activists don't necessarily agree with one another on priorities or strategies, we can nonetheless engage in constructive dialogue.

Some of the Summit presentations are available online. Ironically, leading up to the Summit I was asked some of the following questions, "Why are you partnering with AIDS Healthcare Foundation?" "Why are you allowing the pharmaceutical companies to participate?" "Why is NASTAD being asked to present at a patient advocacy conference?"

I addressed these questions - and others - during the summit with the following very simple response: "The ongoing ADAP crisis facing people living with HIV/AIDS is a war, and why in the world would we go into battle leaving half of our army behind at the base?"

Additionally, I addressed the 800 pound gorilla in the room, which was why some organizations - such as NASTAD, NAPWA, NMAC, The AIDS Institute - were more tepid in their advocacy last year compared to other groups, such as AIDS Healthcare Foundation, Housing Works, ACT UP, C2EA, CANN and aaa+? My response might have surprised some of the attendees, but it came from the heart. I summarized that neither "side" was right or wrong, because both were fighting for the very same thing: access to care and treatment for people living with HIV/AIDS. It boiled down to simply a different approach to dealing with the crisis. But it was important to note that both "sides" spent too much time fighting one another, leveling charges and counter-charges and diluting its advocacy with conflicting messages.

Ironically, Hill staffers complained about the very same thing regardless of their political party.

Hopefully in 2011, we have collectively learned from our mistakes from last year and will strive to work more closely together to ensure that the 5,779 people living with HIV/AIDS on waiting lists are guaranteed the access to care and treatment they deserve and need. That was one of the main tenants behind convening the 2011 Emergency ADAP Summit in the first place.

Local blogger, Mark S. King, captured the Summit's energy and succcess with his video blog, "My Fabulous Disease." Mark's blog takes you behind-the-scenes at the summit, where you can see what makes our leading advocates tick, including their candid frustrations and some very moving displays of dedication and fatigue from years of struggle. Best of all, get simple instructions on how you can make a difference as an advocate for this issue!

AIDS Activism 101: Steps to end the ADAP crisis.

The ADAP Advocacy Association will continue to monitor the ongoing ADAP crisis. Thanks for your ongoing interest and support!

Brandon M. Macsata, CEO
ADAP Advocacy Association (aaa+)

ADAP Tid-Bits...

2010-11-30T16:32:00.000-08:00

The following are ADAP tid-bits of interest...

Post Election analysis

The 2010 midterm elections, characterized by most respected political pundits as a GOP tidal wave, swept into power a record number 63 Republicans to the House of Representatives and bringing their total to 242 seats - which is the most the GOP has held in more than 60 years. The Republican Party also gained a respectable 6 seats in the Senate, despite losing some marquee races headlined by Tea Party candidates where GOP-gains seemed eminent - including Colorado, Delaware and Nevada. The shift in power provides HIV/AIDS activists with some new opportunities, as well as some serious challenges. Among the emerging opportunities is the GOP's top two House leaders hailing from Ohio (Rep. John Boehner as Speaker) and Virginia (Rep. Eric Cantor as Majority Leader) where the political embarrassment of current ADAP waiting lists could force both lawmakers to seek additional funding, as well as the historical perspective that some of the largest ADAP funding increases occurred after the GOP was swept into power after the 1994 midterm congressional elections. But there remain significant challenges, such as Republican rhetoric to scale back recent health care reform legislation, and efforts by budget deficit hawks to scale back federal discretionary appropriations to 2008 levels.

The mere fact that the Democratic controlled-Congress did little to address the ongoing ADAP crisis, despite super majorities in both chambers of Congress coupled with a Democrat in the White House, has left the HIV/AIDS advocacy community splintered and divided. While in some instances congressional Republicans failure to support emergency supplemental funding, their minority status in both the House and Senate shouldn't have been a deterrent to Democrats seeking and approving a legislative remedy to the crisis. The lack of uniformity in the community's message has the potential to make successful advocacy efforts moving forward even more problematic. This is most clearly evidenced by certain groups and advocates putting their personal partisan preferences ahead of the lives of people living with HIV/AIDS more challenging to say the least.

Thus the success of HIV/AIDS advocacy during the 112th Congress will be left more so in the hands of local grassroots efforts, where most real change occurs. The next Congress is scheduled to meet in from January 3, 2011 to January 3, 2013.

World AIDS Day marred by record ADAP waiting lists

On what would typically be hailed as an opportunity to raise awareness about HIV/AIDS and celebrate progress achieved in fighting the disease, will ultimately be marred by the reality that more than 4,000 people living with HIV/AIDS in the United States have either been placed on waiting lists or denied treatment under the AIDS Drug Assistance Programs. Current ADAP waiting lists are nearly four-times higher than the levels reached during the previous crisis in 2004-05, under President George W. Bush. While President Barack Obama deserves credit for developing the nation's first-ever National AIDS Strategy, ending the HIV travel ban and supporting needle exchange programs, his record on ADAP is no better than his predecessor in the Oval Office.

The news just keeps getting worse, too! In Louisiana, beginning on December 1st, all persons receiving their medicines through Medicare/Medicaid will be allowed four prescriptions only. All other must have prior written authorization from a doctor, stating prescriptions are medically necessary. In Ohio, proposed changes include the removal of all local consortia activities (removal of client voices at the local level), and the institution of medical criteria (last proposed was to cut anyone that had never had their CD4 count drop below 200 during the course of their entire illness). In addition, ALL of activities funded by the PART B program could be subject to waiting lists as written, which could include areas of Medical Case Management, Prescription Drugs, Health Insurance, Emergency, Dental and Mental Health. Then there is Florida, where 350 ADAP clients will be disenrolled from the program early next year.

Lame Duck Session shaping-up to be...well, pretty lame!

With the Lame Duck Session of the 2nd Session of the 111th Congress already well-underway, many HIV/AIDS advocates are increasingly skeptical that a bipartisan agreement will be reached on the ADAP crisis. Despite behind-the-scenes dialogue between Democrats and Republicans, and House and Senate lawmakers, time is slipping away as more contentious political battles are being waged debating repealing "Don't Ask, Don't Tell" (DADT), extending the Bush-era tax cuts and ratifying the latest START Treaty with Russia.

Leading up to the Lame Duck, nearly 100 HIV/AIDS organizations sent a sign-on letter to President Obama and Members of Congress seeking the much-needed additional ADAP funding. The letter reads, in part: "We write to urge you to address the immediate crisis in the AIDS Drug Assistance Program (ADAP) funding as well as ensuring ADAP is fully funded for Fiscal Year (FY) 2011. Across the nation, individuals, families and states are in economic crisis; lost jobs have led to even more restricted access to health insurance. Individuals living with HIV/AIDS also carry a unique burden as they seek viable treatment options during this severe economic downturn. Not surprisingly, the burden on ADAP, which provide medications to underinsured and uninsured Americans, has also significantly increased and federal funding has not kept pace." READ LETTER HERE

Certain Members of Congress have used the Lame Duck to call attention to HIV/AIDS, especially as it relates to funding for the next federal fiscal year.

On November 12th, 14 House Democrats penned a letter to House Appropriations Committee Chair David R. Obey and Ranking Member Jerry Lewis seeking additional HIV/AIDS funding for Fiscal Year 2011 during the Lame Duck Session. The letter was endorsed by Barbara Lee (CA-9), Jose E. Serrano (NY-16), Lucille Roybal-Allard (CA-34), Sam Farr (CA-17), Michael M. Honda (CA-15), Tim Ryan (OH-17), Debbie Wasserman Schultz (FL-20), Maxine Waters (CA-35), Henry A. Waxman (CA-30), Tammy Baldwin (WI-2), Donna M Christensen (USVI), Jerrold Nadler (NY-8), Mike Quigley (IL-5) and Jesse L. Jackson, Jr. (IL-2). As part of the letter, they requested an additional $50 million in ADAP funding.

On November 23rd, Rep. Lee (who is widely-recognized as a champion of HIV/AIDS-related issues) followed with another statement, which read, in part: "As we recognize World AIDS Day on December 1st and consider the significance of these new developments, we must be mindful that how we respond to this news today will define the course of the global pandemic for years to come. The release of the first ever National AIDS Strategy by President Obama earlier this year, combined with the return of the International AIDS Conference to the United States in 2012, after a 21 year boycott, will shine an international spotlight on our country's global response to this disease over the next two years. With over 4,157 people across nine states currently on waiting lists for lifesaving AIDS treatment in the United States and nearly 10 million HIV positive people around the world still in need of treatment - we must not let our commitment to fighting this pandemic falter or our resolve fail."

It remains to be seen whether what, if anything, will be accomplished on ADAP for the current federal fiscal year, or the next one.

Heinz-Welvista solution

aaa+ is pleased to announce that it is partnering with the Community Access National Network and ADA National Network to host an educational virtual training conference on the Heinz-Welvista Solution to the ongoing ADAP crisis. The online training, which will be held on Monday, December 6th from 2:00 - 3:30 pm (EST) is free to all interested parties who want to gain a fuller perspective from the Heinz Family Philanthropies and Welvista Pharmacy about how their solution can address the many issues confronting people living with HIV disease on wait lists. LEARN MORE...

Passing of our friend, colleague and hero...Randy Allgaier

The ADAP Advocacy Association celebrates the life of longtime HIV/AIDS advocate, Randy Allgaier, who passed away over the weekend! Randy was an inspiration to everyone who knew him, and a mentor to many of us within the HIV/AIDS community. Randy will be missed, but never will we forget him! For anyone who knew Randy Allgaier either personally or professionally, they would undoubtedly agree that he was a one-in-a-million. As devoted husband to Lee Hawn, an avid policy wonk on public health for and employment of people living with HIV/AIDS and devoted champion of LGBTQI-equality, Randy touched the lives of countless people, no matter what he was doing. Despite adversity, including living with HIV/AIDS, Hepatitis C and Anal Cancer, Randy never let the world around him pause about his ongoing commitment to make the world a better place.
Earlier this year, Randy was a keynote speaker during the aaa+ Annual ADAP Summit. He discussed the good, bad and ugly surrounding the new health care reform law, especially as it relates to people living with HIV/AIDS. Not surprisingly, according to feedback that we received during the Summit, attendees found Randy's presentation and remarks extremely helpful.

[Photo from left to right: Amanda Kornegay, Brandon Macsata, Joey Wynn and Randy Allgaier]

Words cannot describe the loss that so many people are feeling, yet coupled with a true sense of celebration knowing that Randy touched us all. Per Randy's husband Lee, Randy's body will be cremated and his ashes scattered as per his wishes. There will be a gathering of friends and family at a later date still to be decided.

Randy - You will be missed!

Finding Solutions to the ADAP Crisis Should Unite Us, Not Divide Us

2010-10-27T12:20:00.000-07:00

The ADAP Advocacy Association believes that the ADAP Crisis should be uniting the HIV/AIDS community, and not dividing it. As more and more people linger on ADAP waiting lists, it seems that differences over "tactics" has garnered more attention than what is trying to be achieved...ending the wait and saving lives!

On September 4th, aaa+ took its efforts to promote the AIDS Drug Assistance Program and raise awareness about the vitally important role ADAP plays in the lives of people living with HIV/AIDS to a new level when it filmed the first-ever public service announcement (PSA) about ADAPs. Armed with Emmy-Award winning producer, Neil Romano of The Romano Group (who was involved in the production of the very first HIV/AIDS-related PSA back in the 1980s, as well as the successful 'Just Say No' anti-drug campaign), filming included Bill Arnold of the Community Access National Network, Ann Lefert of the National Alliance of State & Territorial AIDS Directors, Christine Campbell of Housing Works, as well as three PLWHAs with personal experience on ADAP - including Michelle Anderson of C2EA Dallas (who is on the Texas ADAP), Robert Breining of POZIAM.com (who is on the Pennsylvania ADAP), and Nick Rhoades of the Community HIV/Hepatitis Advocates of Iowa Network (who is on the Iowa ADAP). Romano has agreed to produce two separate videos, with the first being a 5-7 minute video clip designed for the Internet to be spread virally via the World Wide Web, while the second will be a traditional 30-60 second spot for television, in which he has agreed to help us secure earned media for its placement in select markets! This approach to raising awareness about the ADAP crisis is far different than what other national groups are doing here in Washington.

aaa+ is pleased to announce that it is partnering with the Community Access National Network and ADA National Network to host an educational virtual training conference on the Heinz-Welvista Solution to the ongoing ADAP crisis. The online training, which will be held on Monday, December 6th from 2:00 - 3:30 pm (EST) is free to all interested parties who want to gain a fuller perspective from the Heinz Family Philanthropies and Welvista Pharmacy about how their solution can address the many issues confronting people living with HIV disease on wait lists. LEARN MORE...

On December 2nd, aaa+ will team-up with CANN to host yet another Congressional Briefing on the ADAP crisis. The briefing will be held in the Cannon House Office Building, with additional details to follow in the coming weeks. But efforts are underway to strike a bipartisan, bicameral deal to secure the additional $101 million to alleviate the exploding ADAP waiting lists!

While most of the news during this year-long struggle to combat the ADAP crisis hasn't been so great, it is nice from time-to-time to recognize the good news. Today, the Southern AIDS Coalition issued a press release praising the advocacy efforts in Kentucky toward eliminating that state's ADAP waiting list. aaa+ would like to echo SAC?s praise! The press release read, in part: "The targeted plan to eliminate their ADAP waiting list linked a number of components that included leveraging pharmaceutical rebate dollars negotiated by NASTAD's ADAP Crisis Task Force, support of 1.7 million from President Obama's emergency funding, ADAP supplemental funds, redirecting of monies from the Part B Base funds and a variety of innovative cost saving strategies. Officials were also very resourceful in identifying and seeking alternate 'out-of-the-box' payer sources for eligible clients."

Thank you Kentucky for providing an excellent example of effective, nonpartisan, multi-level leadership!

While Ryan White - especially Part B, or formerly Title II - has long enjoyed bipartisan (or as some would argue, nonpartisan) support, somehow that reality has eluded the crisis facing the cash-strapped ADAPs. With the waiting lists exploding to record levels as World AIDS Day draws closer, how embarrassing would it be for the United States to have 5,000 ADAP patients waiting to access the very life-saving medications that we know keep them healthy, productive members of their communities? Both political parties, both the executive and legislative branches of government and both chamber of the U.S. Congress shoulder the blame! HIV/AIDS does NOT question its next possible infected individuals about their party affiliation, so the response to the ADAP crisis - or any HIV/AIDS-related issue for that matter - should not be hampered by partisan bickering, or maneuvering.

If the Democrats prefer using supplemental funding to solve the crisis, then they should be willing to compromise! Likewise, if the GOP wants to tap into unspent stimulus funding dollars to solve the crisis, then they should be willing to strike a deal! What about splitting the difference using $50.5 million in supplemental funding and $50.5 million in stimulus funding, and that way both political parties can claim victory. But since the people living with HIV/AIDS on the ADAP waiting lists care little about who gets the "credit" for solving the problem, they would simply be happy knowing that all of the treatment options are available to them once again! Novel concept?

The ADAP Advocacy Association will continue to monitor the crisis. Thanks for your ongoing interest and support!

AIDS Activists Protest Stalled Leadership on ADAP Crisis

2010-10-21T09:24:00.000-07:00

AIDS Activists Protest Stalled Leadership on ADAP Crisis

This week, HIV/AIDS advocates from across the country ascended on Washington, DC to express their dissatisfaction with President Obama, Senate Majority Leader Reid and House Speaker Pelosi and their failure to solve the crisis facing the AIDS Drug Assistance Programs in nine states. With ADAP waiting lists exploding to nearly 3,500 people living with HIV/AIDS as the backdrop, events included a press conference at the National Press Club, and demonstrations in front of the White House and a Victory Fund event honoring Pelosi. The AIDS Healthcare Foundation ("AHF"), Community Access National Network ("CANN"), Campaign to End AIDS ("C2EA"), Housing Works and aaa+ organized the events. But the real heroes of the week were Jeffrey Voyles, Steven Aubrey Dimmick, Ricky Lanza and Larry Cook, who each shared their personal experience at the community level and how it is impacting their lives.

Leading up to the events this week, however, President Obama was dogged by protestors in Philadelphia and New York City while campaigning for embattled Democrats. ACT UP led the protest in Philadelphia, calling attention to the 138 people on wait lists for housing in Philadelphia, as well as the 3,441 people on wait lists for medicine across the United States. In NYC, activists yelled slogans and held signs aloft reading "Obama broken promises KILL." At both events, President Obama almost seemed annoyed that the demonstrations were happening, repeatedly saying that funding for AIDS programs had gone up under his leadership.

"As a person with AIDS, I'm always waiting for the other shoe to drop," said ACT UP member Duane Kaufman. "If activists hadn't fought so we could have medicine, I wouldn't be alive today. And if I didn't have housing, I wouldn't be able to take my medicine every day. I'm afraid of losing my housing and losing access to medicine if politicians don't keep their promises" (ACT UP Philadelphia press release, 09/20).

Not even HHS Secretary Kathleen Sebelius was sparred during her speech at the US Conference on AIDS. Chants of "don't let us down, don't let us die", echoed through the lunch plenary as activists and people living with HIV from Florida, Georgia, North and South Carolina, and other Southern states, including members and staff from AIDS Action in Mississippi, the Campaign To End AIDS, Housing Works, AIDS Healthcare Foundation, N.E.E.D. Inc., and others joined in. CLICK HERE to watch the video.

On September 23rd, CANN and aaa+ were joined by the Congressional Black Caucus Health Braintrust to host yet another congressional briefing on the ADAP crisis. Speakers included Sen. Richard Burr (R-N.C.), Representative Donna Christensen (D-V.I.), Doctor Todd Wills, who is an Associate Professor of Internal Medicine, Division of Infectious Disease and International Medicine at the University Of South Florida College Of Medicine, Ann Lefert from the National Alliance of State & Territorial AIDS Directors ("NASTAD"), Arch Bishop Joyce Turner Keller from Aspirations in Baton Rouge, Louisiana, and Amy Bell May, who was on South Carolina's ADAP waiting list up until recently. The congressional briefing received excellent press in stories by CQ HEALTHBEAT NEWS and Political Brief.

Earlier that week, ADAP was also front and center during the Congressional Black Caucus Foundation's annual conference in Washington, DC. Writing for the DC Examiner, Candace Y.A. Montague's "AIDS strategy answers few questions at Congressional Black Caucus" discussed some of the anger behind the crisis.

Efforts remain underway to persuade Congress to find the necessary funding to eliminate the ADAP waiting lists, especially since the $25 million reallocated by the Obama Administration proved to be insufficient. In the U.S. House of Representatives, Congressman Alcee Hastings (D-Fla.) took to the House floor to express his support for the AIDS Drug Assistance Program, and followed with a letter urging Democratic Leadership to address the ADAP funding crisis. Unfortunately, Hastings only requested $25 million in emergency supplemental funding - an amount far short of the missing $101 million necessary.

In the meantime in the U.S. Senate, Senator Chuck Grassley (R-Iowa) endorsed S.3401, "The ACCESS ADAP Act," as a cosponsor. Sen. Grassley sent a "Dear Colleague" letter with Senators Tom Coburn (R-Okla.), Richard Burr (R-N.C.), Mike Enzi (R-Wyo.) and George LeMieux (R-Fla.) which read, in part, "While the Administration recently provided $25 million to address this growing problem, we remain concerned that this amount will not adequately cover all of the cost of providing treatment to the growing list of individuals and fully address ADAP needs through the end of Fiscal Year 2010. The ACCESS ADAP Act transfers $126 million of unobligated discretionary stimulus dollars to the Secretary of Health and Human Services to reduce the ADAP waiting lists and address the other cost-containment measures State ADAPs have taken."

Unfortunately, partisanship outflanked policy as Congress adjourned before doing anything about the ADAP crisis. It seems that Members of Congress are more concerned with saving their own jobs rather than finding the missing $101 million that would end the wait and provide life-saving medications to the nearly 3,500 people living with HIV/AIDS in nine states.

The ADAP Advocacy Association will continue to monitor the crisis. Thanks for your ongoing interest and support!

Where is the Federal Commitment to ADAPs?

2008-03-12T17:06:00.000-07:00

The AIDS Drug Assistance Programs (ADAPs) are authorized under Title II of the Ryan White Comprehensive AIDS Resources Emergency (CARE) Act. Ryan White provides medical care assistance to those with low-incomes and little or no insurance. Approximately $1 billion dollars annually goes toward comprehensive care programs, which include health care, support services and drug assistance programs. Most of the funding is made available for ADAPs to provide anti-retroviral therapy, as well as to purchase health insurance for eligible clients.

For the last several years, ADAPs increasingly faced funding shortfalls that have placed more and more HIVers on waiting lists. As of last year, waiting lists routinely jeopardized the health, well-being and lives of hundreds of Americans living with HIV/AIDS. In fact, clients even died in South Carolina, West Virginia and elsewhere.

President Bush and Congress have attempted to address the problem with small increases, including a $38 million increase in 2005, $35 million in 2006, and $10 million in 2007. In addition, in June 2004 the President also released an emergency $20 million dollars to help provide services to those on the waiting lists. But never have these increases kept pace with the actual need.

There is also a financial rational for fully funding ADAPs. In advocating for additional funding, supporters of ADAPs point to the cost-effective nature of the program. The annual per-patient cost under ADAP last year was only $12,500, as compared to over $40,000 for treating a person with AIDS by Medicaid.

The likelihood of the cash-strapped ADAPs receiving additional federal funding is questionable with Congress embroiled in partisan differences over next year’s budget priorities. At present, proposed increases for the program are relatively small and far from the $135+ million needed to adequately address the waiting lists.

This raises the question about the federal commitment to fully funding ADAPs? What should AIDS advocates do about this problem?