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Emergency ADAP Summit Attendees Send Letter to President Obama

January/February 2011

In an e-mail update sent on February 4, the ADAP Advocacy Association, (aaa+), reported that a letter has been sent to President Barack Obama and his Office of National AIDS Policy director, Jeff Crowley, "seeking an immediate fix to the ongoing crisis facing the cash-strapped AIDS Drug Assistance Programs (ADAPs). The letter, which was drafted and circulated for signatures during the 2011 Emergency ADAP Summit in Fort Lauderdale, Florida the last weekend in January, demonstrates that ADAP stakeholders nationwide remain optimistic that their advocacy efforts will not be in vain.

"After an extremely successful summit -- in which we proved our community can disagree, but still unite behind a common purpose -- activists from across the nation re-committed themselves to fighting for the 5,779 [at the time of this letter] people living with HIV/AIDS on ADAP waiting lists," said Brandon M. Macsata, CEO of the ADAP Advocacy Association. "We've heard the rhetoric, now we want results."

As of January 27, just prior to the summit convening, ADAP waiting lists ballooned to 5,779 in ten states. As this update goes out, the numbers are even worse -- 6,001 people  in Arkansas (27), Florida (3,085), Georgia (920), Louisiana (645), Montana (19), North Carolina (114), Ohio (390), South Carolina (386), Virginia (412), and Wyoming with 3 individuals.

Below is the letter in its entirety:

Dear President Obama and Mr. Crowley:

We the undersigned have been together all this weekend, January 29-30, in response to the AIDS Drug Assistance Program (ADAP) emergency in Florida, and the ADAP crisis nationwide.

As we write, there is still uncertainty about whether 10,000 Floridians with HIV and AIDS whose lifeline is ADAP, will shortly be cut off from their medication.

What is certain is that unless an agreement can be reached for a proposed once-only rescue by the pharmaceutical industry, Florida's ADAP funding will run out in less than two weeks, i.e. by February 10th. And even if there is temporary resolution, without adequate new funding there will be recurring shortfalls.

What is also certain is that;

  • As of last Friday, in ten states nationwide, 5,779 qualified HIV/AIDS patients in need are on waiting lists for access to ADAP medications.
  • Nineteen states and territories have severely tightened enrollment criteria and reduced drug formularies.
  • Between 2009 and 2010, monthly users of ADAPs rose an unprecedented 80%, and continue to rise due in large measure to the "perfect storm" of the downward spiraling economy with loss of jobs and health insurance, plus rising drug prices.
  • State budget deficits preclude addressing the accelerating need, while the federal Ryan White ADAP contribution has shrunk from approximately 70 percent to 50 percent of the overall national ADAP budget in recent years.
  • Research has shown that earlier treatment prolongs life, preserves productive individual health, and protects public health through lower viral counts and reduced disease transmission.
  • Pharmaceutical industry price accommodations and a $25 million HHS ADAP supplement in 2010, though deeply appreciated, as well as failed House and Senate legislative efforts, have left a current and ever-increasing shortfall of close to $100 million.

The President's National HIV/AIDS Strategy, published July 13, 2010, calls for;

  1. reducing the number of people who become infected with HIV;
  2. increasing access to care and optimizing health outcomes for people living with HIV; and
  3. reducing HIV-related health disparities.

None of these overarching goals can be approached while failure looms over the national Ryan White ADAP Program, especially between now and 2014 when Health Care Reform is more fully implemented.

It is no exaggeration to say that Persons Living With, and Affected By HIV and AIDS are fearful and desperate in the face of government gridlock that has thwarted every constructive solution to the ADAP crisis.

We implore you to take the lead and not to rest, until there is secure and sufficient funding -- immediate and ongoing -- to avert a Florida ADAP meltdown and national ADAP insolvency, to achieve the goals of the National AIDS Strategy, and most importantly, to prevent needless suffering and death of Persons Living With HIV and AIDS in the United States.

There were 57 signatures to the letter from those who attended the summit.

To learn more about the ADAP waiting lists or the ADAP Advocacy Association, please contact Brandon M. Macsata by phone at (305) 519-4256 or email at

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This article was provided by Positively Aware. It is a part of the publication Positively Aware. Visit Positively Aware's website to find out more about the publication.
See Also
2014 National ADAP Monitoring Project Annual Report (PDF)
ADAP Waiting List Update: 35 People in 1 State as of July 23
More News on ADAP Funding and Activism


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