“If you missed this year’s AIDSWatch then you’ve missed them all,” said AIDS United CEO Jesse Milan Jr., as he strode out of the Hart Senate Building heading for lunch before his next meeting on Capitol Hill. AIDSWatch is the nation’s largest annual constituent-based HIV/AIDS advocacy event committed to ending the epidemic.
Like the famous cherry blossoms in full bloom, AIDSWatch has become a rite of spring in Washington, D.C. Now in its 26th year, AIDSWatch brought advocates together from 40 states as well as the District of Columbia and Puerto Rico, to lobby Congress on issues impacting the rights of the HIV/AIDS community and our ability to access quality and affordable healthcare. Many attendees this year strongly warned that some of the Trump administration’s policies undermine progress, such as proposed changes to Medicare Part D.
Milan had just concluded a meeting with Senator John Boozman of Arkansas, a Republican and longstanding member of the HIV Caucus. Milan was joined by colleague Carl Baloney and three of Elizabeth Taylor’s grandchildren—Quinn Tivey, Laela Wilding, and Naomi DeLuce Wilding—representatives of The Elizabeth Taylor AIDS Foundation (ETAF). Also present for the first meeting of the day with the Senator was ETAF ambassador Deandre Moore from Texas and foundation staff member Zakkariah Marquez, a native Californian. ETAF ambassadors Kelly Gluckman, Daniel Franzese, and Brian Sims were joined by ETAF staff member John Scott, and attended separate meetings with other lawmakers and their staff.
In the meeting with Milan were Latunja Stockwell and Ashley Young, both HIV advocates and constituents from Boozman’s home state, where rates of teen pregnancy and HIV are still among the highest in the country.
Latunja, who works in higher education, shared a deeply personal story of how late into her second trimester she had to hitchhike after her car had broken down in order to get to her scheduled specialist OB-GYN’s appointment. Her humbling and eloquent story quieted the room, which was followed by data-driven and researched rebuttals voicing concerns raised by the conservative senator.
The following day’s plenary session focused on updates and training. Several arguments erupted during the discussion when Dr. Robert Redfield, director of the Centers for Disease Control and Prevention (CDC) presented. Dr. Redfield attended at the request of Milan to respond to President Trump’s pledge during his State of the Union address to end the AIDS epidemic by 2030. The first outburst came over Dr. Redfield’s repeated use of the word “infected” in describing people living with HIV, and the second (and more sustainable argument in my opinion, as Redfield has been a clinician for many years) was the issue of patents and profits on Gilead’s Truvada, which many in the community argue obstructs widespread access to the drug known as PrEP.
According to a recent article in the New York Daily News, Milan asked Redfield, “Will the CDC request a review of the CDC’s patents and Gilead’s production of Truvada as PrEP in order to obtain possible royalties from Gilead as resources to fund the HIV preventive portfolio and PrEP access?”
“Well, I know you are not going to like my answer,’” Redfield responded, sparking further unrest. “I can’t comment on any possible negotiations going on with any entity.”
An undisclosed source pointed out, in Dr. Redfield’s defense, that the issue surrounding patents and royalties would most likely need to be escalated to the U.S. Department of Health and Human Services (HHS), the federal agency that oversees the CDC.
“If anything, the session [with Dr. Robert Redfield] on ending the epidemic demonstrated not only his bravery, but also highlighted how much the government can learn from us and how much it needs to include us,” said Aryah Lester, deputy director of the Transgender Strategy Center, who moderated the panel discussion. “From vocabulary to effectively addressing core community issues, the session was, in my opinion, the start of quite a different dialogue than we have had since the beginning of this administration. Community input by those living with HIV is imperative to ending the epidemic and the catalyst to allowing the administration to be educated by those most affected.”
I agree with many colleagues that although uncomfortable and heated at times, the discussion never got out of control. Reactions I heard following the session ranged from “disrespectful to the esteemed doctor” to satisfaction over “heckling him off the stage,” which I would argue never actually happened. I admire the doctor for allowing the strong criticism and reminding us of his own family experiences connecting him personally with concerns about and commitment to our cause. Dr. Michael Gottlieb, ETAF advisory board member and the doctor who first identified AIDS as a new disease in 1981, spoke in favor of the CDC director: “Bob is a personal friend and a friend to the cause. I don’t think we need to beat up our friends.”
To help further balance this critical debate, in his press statement following the President’s remarks, Jeremiah Johnson of Treatment Action Group highlighted contradictions that greatly alarm the activist community and need to be addressed immediately. “As part of his State of the Union address, President Trump announced a ten-year plan to end HIV as an epidemic in the U.S. by 2030. The Act Now: End AIDS Coalition agrees with the President that we now have the tools to end the U.S. epidemic, even short of a cure or a vaccine, and that this will require prioritizing people and communities who are most affected by HIV infection and who experience poorer HIV-related health outcomes. But to date this administration has targeted these same communities in ways that worsen the U.S. epidemic by proposing drastic budget cuts to HIV research, prevention, and treatment programs domestically and globally; undermining healthcare access through the Affordable Care Act; and attacking sexual and reproductive rights and the human rights, safety, and health of transgender people, communities of color, undocumented immigrants, and other communities disproportionately impacted by HIV.”
AIDSWatch, in my opinion, is hands-down the most empowering event an HIV/AIDS advocate could involve themselves in. The power of solidarity for people living with HIV/AIDS is palpable when we come together to hear one another, to debate and constructively challenge one another, and most importantly to resolve differences and leave united in our shared humanity. Dr. Redfield in his leadership position represents the powerful voice we need at this critical time. He must understand our frustrations. Contrary to some accounts of the event, I found his staying on stage demonstration of his resolve to negotiate and fight on our behalf.
“AIDSWatch is our moment to seize this historic opportunity to end this epidemic,” said Milan. “We made our voices heard in Congress so that every person has access to the prevention, treatment, and care they need and deserve, so that we finally end new HIV transmissions, while securing the health of those living with HIV.”
AIDSWatch is organized by AIDS United, along with the Treatment Access Expansion Project (TAEP) and the United States People Living with HIV Caucus (HIV Caucus). The Elizabeth Taylor AIDS Foundation is presenting sponsor and AIDSWatch is made possible by not only ETAF, but other generous sponsors as well.
Get involved with AIDSWatch 2020; go to aidsunited.org or etaf.org.
Sean Black is a visual artist, college educator, and journalist living with AIDS. Follow him on Twitter: @seanblackphoto.