ADAP CRISIS & LAWMAKERS: Stop Bickering, Start Saving

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

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!

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

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...

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

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

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!