June 3, 2010

June 3, 2010
ADAP Crisis Continues

Welcome to another day in my life. Today is Thursday and I hope you are having a safe and great week so far.

My daily life is continuing pretty much as normal with spending time with my dogs, working out, personal appearances, speaking engagements and my activism. The combination keeps me very busy. So I will not bore you with the details.

What I would like to speak about today is the latest on the ADAP crisis in our country.

As many of you know, the entire "buzz" inside the Beltway and across the nation among HIV/AIDS advocates is about whether President Barack Obama and Congress will find an additional $126 million to help to alleviate the ongoing ADAP crisis. And it is important to note that the crisis is much more than waiting lists, but the increasing number of other cost containment measures ultimately restricting access to care for people living with HIV/AIDS among them, restricted eligibility, reduced drug formularies and numerous programmatic caps. As of May 20st, it is being reported by the National Alliance of State & Territorial AIDS Directors (NASTAD) that there are 1,143 people living with HIV/AIDS (PLWHAs) on ADAP waiting lists in ten states but Florida just started a waiting list and Illinois is also expected to start a wait list in the very near future.

Regrettably, partisan gridlock appears to have laid claim to yet another victim leading up to the Memorial Day recess: ADAP funding that will save lives. Both political parties have recognized that the crisis exists and that PLWHAs need immediate assistance but the leaders of both political parties also appear married to their respective solutions to the problem. On the one hand, House Democrats behind the leadership of Speaker Nancy Pelosi (D-CA) are pushing for a fiscal year 2010 (FY10) ADAP Emergency Supplemental in the amount of $126 million to the states; in fact, on May 19th, 79 House Democrats sent the President a letter urging him to do just that. Their letter reads, in part:

"we implore you to move immediately for an emergency funding stream for the AIDS Drug Assistance Program of $126 million for use in FY10. Since FY2010 ADAP funds must last until 1 April 2010 it is abundantly clear that without emergency action the ability for ADAP programs to provide a safety net for low income and underinsured Americans with HIV/AIDS will be seriously damaged. These funds will allow the system to close most of the gaps in the states that currently have wait lists and prevent the states which will need to implement these lists from doing so in the coming months. While we expect implemented health reform to provide significant relief to ADAP we must do everything we can to keep the 1 - 2 million HIV positive Americans alive, working, and well until health reforms are in place in the coming years."

Unfortunately, no House Republicans endorsed this letter because they demanded that the House adhere to its "PAYGO" system, which was reestablished as a standing rule of the House of Representatives (Clause 10 of Rule XXI) on January 4, 2007 by the 110th Congress. PAYGO is the practice of financing expenditures with funds that are currently available rather than borrowed. The rule reads:

"It shall not be in order to consider any bill, joint resolution, amendment, or conference report if the provisions of such measure affecting direct spending and revenues have the net effect of increasing the deficit or reducing the surplus for either the period comprising the current fiscal year and the five fiscal years beginning with the fiscal year that ends in the following calendar year or the period comprising the current fiscal year and the ten fiscal years beginning with the fiscal year that ends in the following calendar year."

Ironically, PAYGO was abandoned during passage of the Stimulus legislation in early 2009 under Democrat control, as well as the "Food, Conservation, and Energy Act of 2008" (Pub.L. 110-234) under Republican control; most recently at the beginning of the 111th Congress, the Rule was modified by including an emergency exemption. Despite that exemption, House GOP members have been steadfast in their opposition to appropriating emergency funding even for ADAPs unless it is paid for by cuts elsewhere.

On May 24th, Sen. Richard Burr (R-NC) and Sen. Tom Coburn (R-OK) introduced an alternative solution which entails using unobligated Stimulus dollars to address ADAP waiting lists and other cost containment measures. The Addressing Cost Containment Measures to Ensure the Sustainability and Success of the ADAP Act (S.3401), also known as the ACCESS ADAP Act, would transfer $126 million from discretionary amounts appropriated under the Stimulus Act (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.

Sen. Burr made the following statement about his legislation:

"More than 600 North Carolinians living with HIV/AIDS have been waiting to access their needed prescription drugs through ADAP. Patients waiting to enroll in ADAP in North Carolina and around our nation are in need of our leadership here in Washington. This bill will ensure that Congress keeps its promise to these patients in need."

Ready for this one, folks? Democrats are so far opposed to the Burr-Coburn legislation. So, where does that leave the 1,143 PLWHAs currently on ADAP wait lists? You guessed it: STILL WAITING!

However, ADAP stakeholders are not sitting idle while the politicians in Washington posture for the upper hand. On May 26th, the ADAP Coalition spearheaded a "National Call In Day to Save ADAP" - an effort supported by aaa+. Meanwhile, warmer weather isn't the only thing getting hot in our nation's capital because nonprofit advocacy organizations at the national, state and local level have all been turning up the heat! Press releases were issued promptly by aaa+ and the Community Access National Network (CANN) in support of S.3401 and the AIDS Healthcare Foundation sent a letter to President Obama to the same effect.

Two weeks earlier, James Sykes, Director of Global Programs, Policy and Advocacy for The AIDS Institute, testified before the U.S. House of Representatives Labor, HHS, and Education Appropriations Subcommittee in support of increased funding for domestic HIV/AIDS and Hepatitis programs. Sykes written testimony read, in part:

"Currently, ADAPs are experiencing unprecedented growth. The monthly growth of 1,271 clients is an increase of 80 percent from FY2008 when ADAPs experienced an average monthly growth of 706 clients. State contributions to the program have dropped from $329 to $214 million in just one year. Meanwhile, the federal share of the ADAP program has dropped to only 49 percent, compared to 69 percent in 2000. Due to a lack of funding, states have instituted waiting lists and have reduced the number of drugs on their formularies, reduced eligibility and capped enrollment. There are currently 1,001 people in 11 states on ADAP waiting lists. In order to address the ADAP funding crisis, which will grow even worse in FY11, we are requesting an increase of $370.1 million for a total of $1,205.1 million. To address the immediate situation, The AIDS Institute requests $126 million of those funds in FY10 as part of an Emergency Supplemental."

All ADAP stakeholders are encouraged to continue their diligent efforts when Members of Congress return home for the Memorial Day recess. After all, we have been here before.

ADAP grew quickly in its first few years due to an expansion of new drugs and robust funding from Congress and President Bill Clinton. In 2004, budget cuts and inadequate funding led to significant cost containment measures as well as patients being taken off their medications and placed on a waiting list until more funding could be secured. President George W. Bush created "The Presidential AIDS Initiative" with $20 million in funding to help alleviate the problem. The following year, the pharmaceutical companies which develop and manufacture these drugs instituted a rebate program to states when purchasing drugs through ADAP which also mitigated a catastrophic collapse of ADAP. In 2006, Medicare Part D began coverage for some beneficiaries who had been receiving their regimen through ADAP, further sustaining the program despite the waiting lists. It was not until 2007 that the aggregate effects of these funding bumps completely cleared all patients of the waiting list.

But as we all know too well, it did not take long for the ADAP waiting lists to return.

Since the ongoing crisis facing ADAPs nationwide is ever changing and impacting so many states, we have determined that our virtual training (ADAP VIRTUAL TRAINING APPLICATION: Linking AIDS Drug Assistance Programs to Pharmaceutical Prescription & Co-Payment Assistance Programs) should be made available to all interested parties, regardless of whether the state has a waiting list. The remaining two virtual training applications will take place on Tuesday, June 1st, and Wednesday, June 9th. Interested parties can choose either one, and REGISTRATION IS FREE!

For more information about the ADAP VIRTUAL TRAINING APPLICATION, please contact Brandon Macsata at info@adapadvocacyassociation.org

Until we meet again; here's wishing you health, hope, happiness and just enough.

big bear hug,

Daddy Dab