Members of presidential HIV/AIDS council explain reasons for resigning, staying
The recent resignation of six members of a presidential HIV/AIDS advisory board just months after the inauguration of President Donald J. Trump reflected a distrust of the new administration’s ability to handle the epidemic and a view that it does not take the issue seriously, according to former members.
Their resignations were spurred by an email conversation among the group, according to Lucy Bradley-Springer, PhD, RN, associate professor emerita in the division of infectious diseases, University of Colorado Denver School of Medicine, and editor of the Journal of the Association of Nurses in AIDS Care.
Bradley-Springer said she resigned after seeing what she called troublesome rhetoric during the campaign yield actual policy decisions and political appointments once the new administration was in power.
“What I’d seen in Washington — not just from the administration but also Congress — was making me nervous,” Bradley-Springer told Infectious Disease News in an interview.
The six now former members of the Presidential Advisory Council on HIV/AIDS (PACHA) publicly announced their resignation in a letter penned by Scott A. Schoettes, HIV project director at Lambda Legal, who wrote that that Trump “simply does not care” about the subject of HIV/AIDS.
Schoettes said the decision that he and the others made to resign was not taken lightly, but that they could not ignore what he called “the many signs” that the administration does not take the HIV/AIDS epidemic seriously.
“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 Newsweek.
PACHA was created in 1995 to advise the HHS secretary about ways in which the United States can address the HIV/AIDS epidemic, Schoettes wrote.
According to Bradley-Springer, the initial idea to resign came after a 2-day meeting in March that was held blocks from the Capitol and was attended by members of the council and Don Wright, MD, MPH, Acting Assistant Secretary for Health at HHS.
Some time after the meeting, Bradley-Springer said Schoettes sent members of the council an email saying he could no longer stay on, apparently given what he perceived to be the administration’s lack of interest in the subject. Schoettes asked the others how they felt.
“We started a conversation with anyone on the council who wanted to chime in and several did, some of whom stayed on the council and the six of us who decided to leave,” Bradley-Springer said.
Bradley-Springer said her concerns about remaining on the council grew during the campaign, particularly because of what she perceived to be racist and sexist rhetoric coming from some in the Trump camp.
“One of the things that is pretty well-established is that the social components of the community in which you live make a big difference in how HIV is perceived, how it’s treated and whether it gets transmitted or not,” she said. “So, I was worried about the overtones that were coming from the campaign. After the election, I waited to see if that was just rhetoric — because sometimes it is just rhetoric. But it didn’t appear to be because the appointments that the president was making were among people who were also in that same kind of mindset.”
Nevertheless, Bradley-Springer, whose term was coming to an end, agreed in March to remain on the council for another 2 years. She said a friend convinced her to stay by saying she might be able to affect more change from the inside.
“I thought about what she said,” Bradley-Springer recounted, “and said, ‘Fine, I’m going to stay in,’ and I was sworn in for a second term.”
In the end, however, her decision to walk away was based on several reasons, including her distaste for the rhetoric she was hearing around the issues of health care and the appointments that Trump had made that seemed to back up what he had been planning during the campaign.
“They tended to be extremely conservative and not really willing to think about alternatives to things like women’s health care, to gay, lesbian and transgender issues, things like race, religion — very conservative attitudes toward them, and I found those to be difficult stances that our leaders were taking,” she said.
Adaora Adimora, MD, MPH, professor of medicine and epidemiology at the University of North Carolina, Chapel Hill, and past chair of the HIV Medicine Association, is one of 14 members who chose to stay on the council, although her term is over in August.
But Adimora told Infectious Disease News that her decision to stay should not be confused with supporting the Trump administration’s approach to HIV/AIDS.
“I completely understand and empathize with the people who left and very much respect their decision,” Adimora said. “My own thoughts were that it was important to me to continue to stay and speak out and make my position clear and to try in any way possible, with whatever influence I have, no matter how small it is, to favorably influence the policies that are being proposed now. I wanted to continue to see if I could make a difference from within the council.”
In the resignation letter, Schoettes accused Trump of being unaware of the realities of patients living with HIV/AIDS in the U.S. and of setting up a government that will roll back gains that have been made over the years. He said the Affordable Care Act (ACA) — currently the target of a repeal effort by both houses of Congress — has benefitted people living with HIV/AIDS by giving them better access to coverage and needs to be strengthened, not replaced. Schoettes said proposed budget cuts to Medicaid would be “extremely harmful” because more than 40% of people living with HIV receive care through the government program.
The nonpartisan Congressional Budget Office estimated that 22 million more people would be uninsured by 2026 under the proposed Senate version of the Republican-penned health care bill compared with the ACA.
HIV/AIDS advocates also have been concerned about the proposed Trump budget for fiscal year 2018. The budget, which is unlikely to be passed in its original form, requests cuts to NIH and CDC funding that would affect HIV/AIDS research and prevention efforts.
“The message we put into the [resignation] letter was very specific for people living with HIV, and a large part of that message was related to access to health care,” Bradley-Springer said. “I know that no president’s budget ever gets passed. A lot of things happen [first]. But the budget reveals what the president actually wants to happen.
“The budget that was recently sent was pretty awful. The economic policies that are starting to emerge are very much related to tax cuts, putting more money in the pockets of people who already have it, and what’s going to happen is that the poverty levels are going to affect health care,” she said. “HIV has become a disease of poverty and the people who are most at risk and the least able to get the services they need once they get infected are people who live in poverty.”
Schoettes said the role of PACHA, which now includes 14 members, is to advise and make recommendations to the HHS secretary “regarding programs, policies, and research to promote effective treatment, prevention, and an eventual cure for HIV.” But Bradley-Springer said she has doubts that HIV resonates with new HHS Secretary Tom Price, MD, who was a practicing orthopedist before winning a Congressional seat in a district outside Atlanta.
“There’s a completely different set of information that he learned [as an orthopedic surgeon] that he had to use on a day-to-day basis. It wasn’t a public health perspective,” Bradley-Springer said. “I think the administration could learn what they need to know, but they don’t seem open to taking advice or hearing what activists and people who work in the field know and what we’ve learned, sometimes the hard way.”
Bradley-Springer said she does not have confidence that the administration has what it takes to address the HIV/AIDS epidemic.
“Not any more than they know how to fight other health care problems,” she said. “I don’t think they know enough about it.”
This would seem to be in contrast to the last Republican administration that occupied the White House.
President George W. Bush has been praised for founding the United States President’s Emergency Plan for AIDS Relief (PEPFAR), an organization that has spent billions of dollars addressing the HIV/AIDS epidemic, particularly in Africa. However, after growing during President Barack Obama’s two terms, PEPFAR funding faces cuts under the current Republican administration.
There are other signs, too, that the Trump administration will not focus on the issue of HIV/AIDS. According to Schoettes’ letter, the administration took down the website of the Office of the National AIDS Policy and has not replaced it. It also has not appointed anyone to lead the White House Office of National AIDS Policy, a position Schoettes said was filled just 36 days after Obama took office.
“HIV is not a partisan issue,” Adimora said. “The big difference here is there is a concerted effort being made to undo some of the constructive policies of previous administrations that were in fact at least partially responsible for some of the progress that’s been made in recent years. There really seems to be an effort to undo all of that — undo access to care.”
Adimora said some of the ideas being proposed by the Trump administration and Republican members of Congress are problematic for people living with or at risk for HIV/AIDS.
“The GOP health care bill is an enormous problem,” she said. “The idea of cutting Medicaid and cutting subsidies — it’s clear this is going to result in dramatically limited access to health care for a lot of people. We need to continue to speak out about that.” – by Gerard Gallagher
Disclosures: Adimora and Bradley-Springer report no relevant financial disclosures.