Data Collection: Facts or Follies

As of February 2nd, 2012 there were 4,575 people across twelve (12) states on AIDS Drug Assistance Programs (ADAPs) wait lists; they are waiting to receive their live-saving medication they need to remain active, healthy, and productive members of their communities. In the meantime the U.S. Department of Health and Human Services' (HHS) Health Resources & Services Administration (HRSA) will be working on a data collection process with the main goal of improving access to all 56 ADAPs.

HRSA will soon be gathering data to access the viability of the ADAPs. These programs provide assistance to help low income, uninsured and underinsured people living with HIV/AIDS (PLWHA) access to life saving medications.
The study will seek to find answers to the rising enrollment in state ADAPs and states’ ability to meet these demands for ADAP services, or rather, lack thereof. Eight respondents from eight states (TBD) will weigh in on ADAPs. The individuals to be interviewed will fall into three general categories:

• ADAP personnel (staff at local and state health departments);

• State HIV/AIDS program leads (State AIDS directors); and

• Personnel from state and local programs such as Medicaid, and pharmacy assistance programs. (staff at local and state health departments)

It will take HRSA an estimated two-and-a-half months to complete their information gathering. They will be assessing factors that are contributing to the rise in ADAP services, i.e. earlier use of Anti Retro Viral Therapies (ARVs), lower attrition of existing clients, unemployment and loss of insurance, and increases in drug costs.

The study will also aim to examine factors that may decrease ADAP costs, such as health care reform, and other cost containment strategies. Study findings will be used to develop policy and recommend enhanced practices for managing state ADAPs.

HRSA is accepting public comments on their data collection process described above and these comments can be emailed to paperwork@hrsa.gov.

What is disturbing here is that no specific time, or focus appears to be devoted speaking with HIV-positive individuals who are or are not ADAP clients, advocates working at the local, state and federal level, nor any health care providers. To get the optimum picture of ADAP’s efficacy and ways to improve it, wouldn’t these stakeholders’ opinions be valuable? Shouldn't patient input be a focal point of the data collection?

This is of particular concern given recent reports only about fifty percent (50%) of the U.S. HIV-positive population appears to be in care and treatment. Given the newest data indicating that being on ARV treatment appears to be the single most effective method of preventing HIV infection, some assessment with this focus appears to be a top priority.

Also, which eight states are going to be chosen, and which people from these eight states will be interviewed? As is known each state ADAP is not the same, so a good sampling of states with various ADAP models must be represented in the data collection process.

Which criteria will be evaluated? Decreased funding in the areas of prevention, needle exchange programs, and case management should be top priority when accessing the increased usage of ADAP. As well, the economic downturn should be taken into consideration, loss of employment, and insurance of people living with HIV/AIDS (PLWHA).

Those working in HIV/AIDS at local, state, and federal levels know the reasons behind the problems that many state ADAP programs are having; they have the best ideas on how to fix the issues, and how to unify state ADAPs to make them more user friendly, and cost effective. Over many months now, even years, these issues, and ideas have been documented in letters and reports that have been sent to HRSA to best address these issues. Apparently, these reports have fallen on deaf ears.

The resources and time HRSA will spend conducting this research will be administratively costly, and may produce a very narrow approach to a program that needs to be looked at from a much broader prospective. Is this data collection process necessary? It will likely reveal what community, state, federal, and other industry leaders already know. It will be process that will take a better part of a year to implement, conduct, and report on.

Time is of the essence with 4, 575 people across 12 states on an ADAP waitlists, hoping to receive the medication they need to remain alive, healthy, and productive. This number is on the uptick and will continue to rise as cash strapped states are implementing their own broad state level cost containment strategies, while at the same time patient assistance and co-pay assistance programs are becoming overwhelmed. States cannot afford to wait and hope that health care reform will relieve these immediate problems.

HIV/AIDS stakeholders should demand that this data collection process helps to ensure that everyone living with HIV/AIDS has unfettered access to the care, treatment and resources so desperately needed.

The ADAP re-certification process; the frustration mounts!

The U.S. Department of Health & Human Services' Health Resources & Services Administration (HRSA) - which oversees HIV/AIDS supports and services in the United States - nearly a year ago put into place a rule that all 56 AIDS Drug Assistance Programs (ADAPs) must re-certify its clients every six months. While very few states have complied from the beginning, it’s not until most recently that letters have begun going out like rapid fire to ADAP enrollees in MANY states.

Horror stories are popping up all over as people living with HIV/AIDS (PLWHAs) are finding out the process to recertify is time consuming, frustrating, and not very ‘user friendly’. Individuals have talked about it taking hours at a time to complete the process. For those who fail to re-certify on-time they are being dropped from the program. This re-certification process is causing yet another barrier to access to care that should be a seamless process for PLWHA.

There is NO uniformity across ADAPs to this process. Individuals have been required to gather financial and health information, be denied for other programs first (Medicare/Medicaid) and provide the denial letters. Also no time frame exists as to when one must recertify. Is it 10 days, a month, or 6 weeks? Some states are sending out first notices, will there be a second and third notice? Will there be a follow up phone call too? What if recertification notices arrive while a patient is in the hospital for a lengthy stay? What if someone hasn’t updated their address and/or phone number in a long time and is incommunicado?

The frustration level over this process is really beginning to mount and will only become more frustrating to advocates, health professionals, case managers, and more importantly PLWHA as more re-certification notices start going out.

Yes, ultimately the responsibility lies on the client to remember their re-certification date, update their address, take time out of their busy schedules, gather documents, and be sure to cross the T’s and dot the I’s! Oh, and guess what? It’s time to recertify again!

As mentioned above, if patients fail to re-certify, then they will be dropped, which may mean now going onto a waitlist, and/or having a lapse in coverage with no access to medication. Those receiving ADAP should be sure that their contact information is up-to-date with their respective state health department, local health department and case managers.

Wouldn’t it be better if this process occurred every one or two years instead? Had uniformity, and was more user-friendly? Weigh in below on what is happening with regard to re-certification in your state, and with any comments or thoughts on this issue.

What would Anderson Cooper say about the promised ADAP funding?

“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

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

***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)



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

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

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!