The Lion of Modern-Day HIV/AIDS Advocacy

By: Jeffrey R. Lewis

HIV/AIDS advocacy has had many champions since the 1980s. Each leader made significant strides in raising awareness, tearing down stigma and building support services to combat the epidemic. Among them are Larry Kramer, Jeanne White-Ginder, Jeffrey Crowley, Mary Fisher, Debra Frazer-Howze, Elizabeth Taylor, Elton John, and Ron Woodroof to name just a few. Mild mannered and stoiac, the lion of modern-day HIV/AIDS advocacy movement is a man who is often overlooked, William “Bill” Arnold.

You won’t find Bill’s face on the cover of Time Magazine or the front page of The New York Times. Neither is he featured in HIV media publications, such as POZ Magazine or TheBody. No segment has aired on CNN’s Heroes or CBS’s 60 Minutes. Bill prefers it that way.

Yet, Bill’s contributions cannot be understated. His behind-the-scenes work changed the course of HIV/AIDS advocacy in the United States saving countless lives. Literally!

Bill with The Honorable Donna Christensen

As founder of the Community Access National Network (formerly the Ryan White CARE Act Title II Community AIDS National Network) and its groundbreaking National ADAP Working Group (“NAWG”), Bill’s efforts solidified the transformative work behind the creation of the AIDS Drug Assistance Program (“ADAP”) and its eventual federal funding. Created in the 1990s, when advocates were mistrustful of the pharmaceutical industry and critical of the government’s slow response to the epidemic. Likewise, the industry was skeptical of some of the advocacy community’s brass-knuckles tactics, however necessary they were at the time. During the mid-1990s, ADAP was receiving zero federal dollars, compared to the roughly $1.3 billion per year allocated today.

Bill Arnold made that happen by bringing three reluctant but vital partners together.

Industry brought its traditional "corporate thinking" business models to the table. Advocates brought a decade’s worth of pain (witnessing 50,000 AIDS-related deaths per year). Government agencies brought an institutional understanding of the political process and “traditional” problem based solutions. The result was one of the most effective community uprisings in our nation’s history. Bill was able to fascilitate a collaborative approach that combined stakeholders’ assets. It saved a generation!

Years later, predicting the “perfect storm” besieging ADAPs forcing thousands of people living with HIV/AIDS onto waiting lists for services. Bill founded the ADAP Advocacy Association and (modeled after NAWG’s stakeholder partnerships). Bringing a second organization into the fold!

Bill ensured that persons living with HIV/AIDS would always be at the center of the discussion. He opened the doors to a new generation of advocates empowered to find their voices in the fight against this devastating epidemic.

But that wasn’t all he did.

In 2011, Florida’s ADAP was on the verge of total collapse which would leave thousands of Floridians without life-saving medications. Unbeknownst to most people, Bill worked with the Heinz Family Philanthropies and Ken Trogdon to broker a solution averting a major public health crisis. More than 11,000 patients in eleven states got the medications they needed as a result.

Few pieces of HIV-specific legislation have passed through Congress without Bill’s fingerprints somewhere on them. It’s rare for community healthcare leaders to remain on the White House Domestic Policy Counsel’s speed dial the way Bill has.

This year, remember Bill Arnold. A healthcare hero whose determination, passion, and relentlessness saved tens of thousands of lives by simply caring.  Bill is not a collector of bones or souls, rather of hearts and minds.

Editor's Note: Jeffrey Lewis is the President of Legacy Health Endowment in Turlock, California.  The views expressed are his own.

Disclaimer: Guest blogs do not necessarily reflect the views of the ADAP Advocacy Association, but rather they provide a neutral platform whereby the author serves to promote open, honest discussion about public health-related issues and updates.