AIDS Drug Assistance Program: Profiles in ADAP Leadership

The ADAP Advocacy Association hosted its 3rd Annual ADAP Leadership Awards Dinner on Monday, July 8th in Washington, DC. The event marked an opportunity for stakeholders invested in the AIDS Drug Assistance Program (ADAP) -- most notably people living with HIV-infection -- to celebrate the accomplishments achieved and leadership demonstrated by individual, community, government, media and corporate leaders who are working to improve access to care and treatment. It was headlined by the Honorable Tommy G. Thompson, former Governor of Wisconsin and former Secretary of the U.S. Department of Health & Human Services.

Thompson's keynote provided a reflective glimpse into all that the HIV/AIDS community has achieved over the last several decades, both domestically and abroad. It also showed that HIV/AIDS transcends partisan politics.

His understanding of the unique challenges facing people living with HIV-infection dated back to his tenure as Wisconsin's 42nd Governor, and it continued into his service at the federal level. While serving as the Secretary at HHS, ADAP federal appropriations increased from $571 million in 2001 to $787 million in 2005. He also oversaw the $20 million in emergency ADAP funding that was released during the first ADAP waiting list crisis nearly a decade ago. Working alongside Secretary of State Colin Powell, Thompson was instrumental in developing President George W. Bush's PEPFAR initiative and chaired the Global Fund to Fight AIDS, Tuberculosis, and Malaria, a worldwide effort that focused on the problem around the world, with annual trips to Africa.

Thompson was presented with the ADAP Advocacy Association's first-ever "ADAP Lifetime Achievement Award" as a 'thank you' for his decades of public service commitment to people living with HIV-infection.

Following the keynote, Brandon M. Macsata, CEO of the ADAP Advocacy Association, presented the ADAP Leadership Awards. The 2012-2013 award recipients included:

ADAP Champion of the Year (individual):
President Barack Obama
ADAP Emerging Leader of the Year (individual):
Julio Fonseca, HealthHIV (Wash-DC)
ADAP Corporate Partner of the Year:
HarborPath
ADAP Community Organization of the Year:
AIDS Foundation of Chicago
ADAP Lawmaker of the Year:
The Honorable Tom Coburn, M.D., U.S. Senate (OK), The Honorable Donna Christensen, M.D., M.C. (Virgin Islands)
ADAP Social Media Campaign of the Year:
My HIV Journey by Aaron Laxton
ADAP Grassroots Campaign of the Year:
Syringe Decriminalization Campaign by the North Carolina Harm Reduction Coalition
ADAP Media Story of the Year:
Why Some with HIV Still Can’t Access Treatment by Sarah Childress, PBS Frontline

Upon announcing the 2012-2013 awardees earlier this year, Macsata stated, “The ADAP Advocacy Association is pleased to present this year’s recipients of its annual leadership awards, as we recognize a truly distinguishable group of awardees who have demonstrated a keen interest in preserving access to care under the AIDS Drug Assistance Program...thousands of underserved people living with HIV/AIDS have gained access to care and treatment, thanks to this year’s awardees."

The significance of the combined commitment to excellence displayed by the 2012-2013 awardees cannot be understated. According to the National Alliance of State & Territorial AIDS Directors (NASTAD), there were 4,717 people in 12 states on ADAP waiting lists, as of January 12, 2012. As a result of FY2011 ADAP emergency funding, Alabama, Florida, Georgia, Idaho, Louisiana, Montana, North Carolina, Ohio, South Carolina, Utah, and Virginia were able to reduce the overall number of people on their waiting lists. As of April 19, 2012, that number had decreased 3,079 people on ADAP waiting lists in 10 states. By mid-year, there are 2,170 people on ADAP waiting lists in 9 states. The total number of people on waiting lists had decreased 77 percent since a high of 9,298 individuals on September 1, 2011. The most dramatic decrease occurred in the latter part of the year when NASTAD reported only 58 people on ADAP waiting lists in four (4) states, as of December 13, 2012.

The bar this year was set very high starting with President Obama's budget including additional federal appropriations for the cash-strapped ADAPs, as well as his numerous unilateral attempts to funnel more funding into the program via intra-department transfers. The latter action, first announced on Worlds AIDS Day in late 2011, led to the dramatic decrease in the number of people living with HIV-infection languishing on ADAP waiting lists.

Additionally, Julio Fonseca's efforts at HealthHIV with its Workforce Capacity Building have led to greater awareness within the medical community and elsewhere by matching physicians, nurse practitioners, and physician assistants to HIV clinical experts who provide one-on-one coaching, education, and training. Sarah Childress' reporting at PBS Frontline showed that some in the news media not only haven't turned a blind eye to HIV/AIDS in America, but truly understand the negative consequences of restricting access to care. Her story, "Why Some with HIV Still Can’t Access Treatment," represented one of the most comprehensive analysis of the problem facing thousands of people living with HIV-infection in the United States, especially those on ADAP waiting lists.

Senator Tom Coburn (R-OK) and Rep. Donna Christensen (D-Virgin Islands) reassured ADAP stakeholders that bi-partisan, bi-cameral support for Ryan White CARE Act programs still exists in the U.S. Congress. Rep. Christensen was in attendance to accept the Lawmaker of the Year Award, sharing her past experiences as a physician in the Virgin Islands trying to treat patients with virtually no medical treatment options available on the island.

The awards also reminded ADAP stakeholders that traditional grassroots advocacy is alive and well today, and so is the emerging advocacy platform of social media. The North Carolina Harm Reduction Coalition was represented by its Executive Director, Robert Childs, who accepted the Grassroots Campaign of the Year Award for their Syringe Exchange Decriminalization Campaign. Whereas Aaron Laxton could not attend the event in person, he posted a video on his YouTube page accepting the Social Media Campaign of the Year Award for his My HIV Journey vlog.

Finally, nonprofit community organizations and corporations also proved that their contributions remain invaluable. The AIDS Foundation of Chicago's efforts in Illinois prevented a potentially devastating cut to that state's ADAP, thus keeping hundreds of patients actively in care and treatment. HarborPath's new patient assistance portal links patients, who would otherwise not be receiving care and treatment, with life-saving medications donated by pharmaceutical companies. Their combined efforts earned them the Community Organization and Corporate Partner awards, respectively.

For three years running, even if just for a few hours, ADAP stakeholders came together in celebration...and appreciation. The evening ended with countless hugs, congratulatory salutes and a renewed sense of purpose. Much work remains to be done!

[Event Photos]

Brandon M. Macsata presents Tommy G. Thompson with the ADAP Lifetime Achievement Award