Should I stay or should I go?
That’s the question that many members of the Presidential Advisory Council on HIV/AIDS have been asking themselves during the first 150 days of the Trump presidency. And last week, two PACHA members from the same Alabama-based organization—Southern AIDS Coalition executive director Nicholas Carlisle and SAC community organizer Gina Brown—found themselves on opposite sides of it.
Last Friday, roughly a quarter of the council, Brown included, announced their resignation in a letter published on Newsweek, writing that President Trump “simply does not care” about people living with HIV, that his administration “has no strategy” in place for the HIV epidemic, and that the president “seeks zero input” from HIV policy experts. The six resigning advisors also expressed concern about the “devastating” impact that the American Health Care Act would have on people who have HIV.
But Carlisle, and at least a dozen other members of PACHA chose to stay. They will continue to meet quarterly and draft new recommendations for the Department of Health and Human Services—even if those recommendations lead nowhere.
“I was aware that people were considering resignation, did some deep soul searching, and made a conscious decision to stay,” Carlisle told The Daily Beast. “It was not easy. It was certainly not an easy decision.”
PACHA was formed in 1995 under the Clinton administration and continued its work through the presidency of George W. Bush. PACHA’s quarterly meetings only last two days but the bulk of their work is accomplished by internal working groups and committees, which provide counsel and expertise to the White House and HHS.
Carlisle, a new member of PACHA who has only attended one quarterly meeting so far, made it clear that he has a “tremendous amount of respect for the six individuals who resigned”—and that he and Brown “had lots of conversations” as colleagues about their differing approaches—but he wants to keep making recommendations, whether they get “heard or not.” Although the complaints listed in the Newsweek letter are “shared frustrations,” Carlisle says it would be “slightly premature” for him to leave now.
“I’m a Southerner,” he told The Daily Beast. “I’ve always done my work in the South and, for the most part, we’ve dealt with very challenging political environments. That’s what I’m used to, that’s what I’m familiar with.”
And, if worse comes to worse, he’d rather be kicked out the door than walk out of it.
“Let ’em fire me,” he said. “Let ’em disband us. Because they don’t like what we say but let’s at least say it.”
For Carlisle’s colleague Brown, who was in her second four-year term on PACHA, the decision to resign was informed by her own experience with HIV.
“As someone who’s been living with HIV for 23 years myself—and knowing what my insurance was before [the Affordable Care Act]—I know that the people I care about cannot afford to not have the coverage they have right now,” she told The Daily Beast.
While Brown was weighing out her future as a member of PACHA, she was troubled by HIV/AIDS funding cuts in Trump’s proposed budget. But she was anguished by the celebratory Rose Garden press conference that President Trump held after the House passed their own version of the American Health Care Act last month.The Congressional Budget Office later estimated that the bill would cause 23 million people to lose their coverage in the next decade.
“[The press conference] was really painful to watch because they’re celebrating taking insurance away from people who rely on it to stay alive,” recalled Brown.
Policy experts, as Reuters reported, had warned that stripping away health care coverage and making cuts to Medicaid would especially damage people living with HIV, 24 percent of whom had no insurance prior to Barack Obama’s Affordable Care Act. Brown understands that many of her colleagues want to stay and see if they can work with the Trump administration, despite its stance on the AHCA—but she just couldn’t do it any longer.
“I respect their decision and I understand that some people are really, really good with an inside game and some are good with an outside game,” she told The Daily Beast. “And I’m one of those outside game players.”
The White House has disputed the notion that President Trump does not care about people living with HIV. At Monday’s off-camera press briefing, Sean Spicer said that “the President cares tremendously about that and the impact it has.” Spicer was asked twice to share Trump’s HIV/AIDS strategy, ultimately responding that “they are working from the White House standpoint, from a policy standpoint, hand-in-glove with the commission and other members throughout the government to continue to develop a strategy.”
“I think it’s a holistic approach,” said Spicer. “Both in this country and helping people abroad where that’s a big issue.”
Asked for further clarification by The Daily Beast on Tuesday, the White House cited the hiring of former Whitman-Walker Clinic associate director Katy Talento as proof that the Trump administration is working on HIV/AIDS.
Despite her experience at an HIV/AIDS community health center like Whitman-Walker, Talento has been criticized for unsubstantiated comments about the effects of contraception—and called out by the LGBT media advocacy group GLAAD for writing an anti-transgender op-ed for LifeSiteNews in 2015. (According to the CDC, the percentage of transgender people who were diagnosed with HIV in 2013 was “more than 3 times the national average.”)
Spicer did not make it clear at the press briefing whether or not the six members of PACHA who resigned will be replaced, only telling reporters, “I’ll try to get you something on that.”
But PACHA is going to move forward as best it can in their absence. As of Monday, the council had not had a chance to meet and formally discuss the resignations. Carlisle told The Daily Beast with a rueful laugh that their “email correspondence has been quiet.”
But remaining members like Vignetta Charles, the CEO of the health equity nonprofit ETR, don’t want to abandon PACHA just yet, as challenging as its work has become. Charles told The Daily Beast that she wanted to stay on PACHA in order to “ensure that the advising to the administration and HHS moving forward had the science base and the epidemiology at its core.”
“I’m hoping that the voices of the advisers can be heard,” she added. “I think that there are lots of ways for your voice to be heard, and the resignation by the six PACHA members is also one way for their voice to be heard so I certainly appreciate and respect that. Change happens in lots of ways.”