The first hints of an uncertain future for the Presidential Advisory Council on HIV/AIDS came last year, when Donald Trump's presidential campaign refused to meet with advocates for people living with HIV, said Scott Schoettes, a member of the council since 2014.
That unease was magnified on Inauguration Day in January, when an official White House website for the Office of National AIDS Policy vanished, Schoettes said.
“I started to think, was it going to be useful or wise or would it be possible to work with this administration?” Schoettes told The Washington Post. “Still, I made a decision to stick it out and see what we could do.”
Less than six months later, Schoettes said those initial reservations had given way to full-blown frustration over a lack of dialogue with or caring from Trump administration officials about issues relating to HIV or AIDS.
Last week, he and five others announced they were quitting the Presidential Advisory Council on HIV/AIDS, also known as PACHA. According to Schoettes, the last straw — or “more like a two-by-four than a straw” — had come in May, after the Republican-dominated House passed the American Health Care Act, which he said would have “devastating” effects on those living with HIV.
“The Trump Administration has no strategy to address the on-going HIV/AIDS epidemic, seeks zero input from experts to formulate HIV policy, and — most concerning — pushes legislation that will harm people living with HIV and halt or reverse important gains made in the fight against this disease,” Schoettes wrote in a blistering guest column for Newsweek announcing the resignations.
The column also pointed out that Trump has still not appointed anyone to head the White House Office of National AIDS Policy, something President Barack Obama had done 36 days after his inauguration.
“Within 18 months, that new director and his staff crafted the first comprehensive U.S. HIV/AIDS strategy. By contrast, President Trump appears to have no plan at all,” Schoettes wrote. “Public health is not a partisan issue. . . . If the President is not going to engage on the subject of HIV/AIDS, he should at least continue policies that support people living with and at higher risk for HIV and have begun to curtail the epidemic.”
The column was co-signed by the five other members of the council who had resigned, including Lucy Bradley-Springer, Gina Brown, Ulysses W. Burley III, Grissel Granados and Michelle Ogle. As of Monday morning, some of their bios remained on PACHA's government website.
At Monday's White House press briefing, press secretary Sean Spicer said he did not know if the council members who had resigned would be replaced but defended Trump against accusations that he didn't care about HIV or AIDS.
"Well, I mean, respectfully, the president cares tremendously about that and the impact it has," Spicer told reporters at the briefing. "Obviously, the individuals that he’s appointed here in the White House have been in communication with various stakeholders in that community to help develop policies and formulas going forward, but we’re going to continue to do what we can from a government standpoint."
A representative for the Department of Health and Human Services deferred to the White House for comment Monday. A White House representative told The Post in an email that staff members from the president's Domestic Policy Council had met with HIV/AIDS representatives several times already.
The White House representative also pointed out that Trump had hired Katy Talento, an HIV/AIDS and infectious disease expert, to be his health policy adviser on the Domestic Policy Council, and said Talento is in frequent contact with the head of PEPFAR, the U.S. global AIDS program.
“I challenge them to identify those times and the people that they met with those times, because I'm unaware of those meetings, certainly at a high level," Schoettes told The Post. He also criticized Talento for making inaccurate claims about birth control in the past. "This administration has shown themselves to be anti-science in multiple areas. I don't know how we can argue policy positions if they don't use facts.”
PACHA was founded in 1995 under the HHS to advise the White House on policy matters concerning the HIV/AIDS epidemic. Members are appointed by the secretary of health and human services for four-year terms; they are not paid and are based throughout the country. Over the past two decades, its members have included physicians, public-health specialists, lawyers, health-care executives and community organizers.
Though there can be up to 25 members on the council, a handful of vacancies meant there were only 21 on the board before the new resignations. Now only 15 remain.
Schoettes said that council's last in-person meeting was in March. It continued drafting policy recommendations, knowing that a repeal of Obamacare was among Trump's top priorities.
“We knew that health-care reform was pending or was likely, and we wanted to make sure that our voices and the voices of people with HIV were heard,” he said.
Shortly after that meeting, the council sent a letter to Tom Price, the Trump-appointed secretary of health and human services, and received what Schoettes described as a “perfunctory” response.
The House's passage of the American Health Care Act in May, despite its pleas and research, was what finally made Schoettes realize the council could be rendered inconsequential under Trump. He explained in his resignation column in Newsweek the consequences that a repeal of the Affordable Care Act could have for people living with HIV:
People living with HIV know how broken the pre-ACA system was. Those without employer-based insurance were priced out of the market because of pre-existing condition exclusions. And “high risk pools” simply segregated people living with HIV and other health conditions into expensive plans with inferior coverage and underfunded subsidies — subsidies advocates had to fight for tooth-and-nail in every budgetary session.
Because more than 40 percent of people with HIV receive care through Medicaid, proposed cuts to that program would be extremely harmful. Before Medicaid expansion under ACA, a person had to be both very low income and disabled to be eligible for Medicaid.
For people living with HIV, that usually meant an AIDS diagnosis — making the disease more difficult and expensive to bring under control — before becoming eligible.
Shortly after the bill's passage in the House, Schoettes sent an email to several of his council colleagues. He planned to resign, he announced, because the council was “not going to be able to be effective anymore.” Five of his colleagues agreed.
“As advocates for people living with HIV, we have dedicated our lives to combating this disease and no longer feel we can do so effectively within the confines of an advisory body to a president who simply does not care,” Schoettes wrote. “. . . We hope the members of Congress who have the power to affect healthcare reform will engage with us and other advocates in a way that the Trump Administration apparently will not.”
Karen DeYoung contributed to this report. This post has been updated.