President Trump’s commitment to combatting HIV/AIDS — traditionally a bipartisan issue — has come into question following the resignation of six members of the President’s Advisory Council on HIV/AIDS.
In a joint letter to Newsweek published on Saturday, the members who resigned — Scott Schoettes, Lucy Bradley-Springer, Gina Brown, Ulysses Burley III, Michelle Ogle and Grissel Granados — said they no longer feel they can effectively combat the disease “within the confines of an advisory body to a president who simply does not care” and would engage in advocacy elsewhere.
Schoettes, counsel and HIV project director at Lambda Legal, cited in an interview with the Washington Blade as a major factor for his decision to resign the absence of concern for people with HIV/AIDS as seen in Trump’s efforts to repeal Obamacare.
“In a nutshell, it was because we wanted to make sure people living HIV were actually being taken into account as we engage in this debate around health care,” Schoettes said. “There doesn’t seem to be too much a debate going on as they write the law secretly in the Senate, but we wanted to do everything we could to raise the issue and make sure that the needs of this community were being considered as the heath care system in this country is being overhauled.”
Created in 1995, PACHA has provided advice starting in the Clinton administration and into the George W. Bush and Obama administrations to the secretary of health and human services on policy and research to promote effective treatment and prevention for HIV — maintaining the goal of finding a cure.
Such advice may now fall on deaf ears. Trump has yet to articulate a plan for HIV/AIDS in his administration, nor has his new administration made a concerted effort to address the epidemic.
Cited in the letter as a major reason for their decision to resign was the absence 132 days into the administration of a director for the White House Office of National AIDS Policy and the elimination of the Office of National AIDS Policy website.
Ogle, director of infectious diseases at the Warren-Vance Community Health Center in Henderson, N.C., said she was among those who resigned because of repeated snubs from the Trump administration on HIV/AIDS.
“Everything that we’re trying to do, they were undoing,” Ogle said. “When you add into that there was no consultation with us, there were no meetings with us to involve us in these decisions on cutting HIV/AIDS service programs, cutting prevention programs to the CDC, there was no consultation. So, we just felt that we needed to advocate at a different level and that maybe we would be better advocates outside of the government.”
At the start of the Trump administration, Ogle said PACHA sent a list of recommendations to Trump and Secretary of Health & Human Services Tom Price, and a subsequent letter on HIV/AIDS stigma, but said “there was no reaching out to us, there was no real engagement.”
That silence isn’t new. During the 2016 presidential election, both Hillary Clinton and Bernie Sanders met with HIV/AIDS stakeholders (although Sanders met with them after cancelling once and was criticized for backing the AIDS Healthcare Foundation’s California Drug Price Relief Act ballot proposal). As Ogle recalled, Trump “refused to meet with our stakeholders and advocates” despite their efforts.
“That was maybe an initial sign that it may be a bit more challenging to work with this administration,” Ogle said.
Trump’s approach to the disease also became apparent in cuts to HIV/AIDS programs in his proposed fiscal year 2018 budget request, which Ogle said eliminates entirely the AIDS Education Training Center as well as substance abuse and mental health services.
In addition to Medicaid rollbacks, the budget seeks to cut $150 million from the Centers for Disease Control’s HIV/AIDS prevention programs, $550 million from HIV research at the National Institutes for Health and 17 percent cuts each to the Global Fund to Fight AIDS, Tuberculosis & Malaria and the President’s Emergency Plan for AIDS Relief, which both seek to combat the epidemic globally.
“In his budget, everything that he proposed harms what it is were doing, harms people with HIV and AIDS and makes it very difficult of us to do what we do,” Ogle said.
Ogle said other members of PACHA decided to resign from the council immediately after Trump’s election out of a lack of faith in his leadership, but said nothing at the time. Ogle declined to identify them because she said they didn’t want publicity.
Under questioning from the Blade, White House Press Secretary Sean Spicer on Monday said he doesn’t know whether Trump would replace the PACHA members, but denied the president has no interest in HIV/AIDS, insisting he “cares tremendously about that and the impact it has.” (That was likely the first time a member of Trump’s team — either his administration or his campaign — publicly addressed HIV/AIDS.)
“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,” Spicer said.
A White House official said Trump administration domestic policy council staffers have met HIV/AIDS groups or their representatives several times already.
Further, the White House official noted Trump hired as lead for health policy on the council, Katy Talento, an HIV/AIDS and other infectious diseases expert whom health advocates have praised as “talented” as the Blade reported in January.
Talento, the official said, has met twice with the head of HIV/AIDS at the Centers for Disease Control Center on HIV/AIDS to get briefed on the state of the epidemic. Talento and the head of PEPFAR, the U.S. global AIDS program, are on speed dial and speak frequently, the official said.
The official said PACHA members who resigned never reached out to Talento or Domestic Policy Council Director Andrew Bremberg. As Spicer alluded to in the briefing, the Obama administration eliminated all of George W. Bush’s appointees on the commission during the former administration before making new appointments.
Schoettes rejected Spicer’s assertion Trump cares about HIV/AIDS, saying “actions speak louder than words” the president’s actions “demonstrate the exact opposite.”
“It is an administration that has not been talking about this issue, considering this issue, working with the President’s Advisory Council on HIV/AIDS to consider the policy recommendations that we have been making,” Schoettes said. “Then they went and backed a piece of legislation that will have a devastating effect on people living with HIV and our ability to slow-curb the epidemic, so anyone who does that is demonstrating that they don’t actually care about people living HIV.”
Other members of PACHA who elected to stay as members of the council, not joining the six others who resigned, said they respect the decision of their colleagues, but felt a continued presence was needed.
Adaora Adimora, a medical doctor and professor of medicine and epidemiology at the University of North Carolina, Chapel Hill, said she understands why PACHA members decided to step down, but felt for her “it would be best to try to continue to work toward having a favorable effect on policies from inside the council.”
Under the Obama administration, Adimora recalled working toward a common goal — with the updated National HIV/AIDS Strategy as a guide — to combat the disease, which she said has changed under Trump.
“However, since this administration came, I can’t say I’ve heard specific statements about HIV,” Adimora said. “Instead we’ve seen proposal of policies that oppose expansion of health care coverage and many things that are essential for public health — and especially for people with HIV. And I think that’s a very clear problem.”
Cecilia Chung, senior strategist for the San Francisco-based Transgender Law Center and the third transgender person ever appointed to PACHA, said she “struggled with whether to resign,” but decided against it to ensure trans representation.
“I have two predecessors, one was a trans woman of color living with HIV, the other was a trans man who is a researcher and an academic,” Chung said. “Being appointed to PACHA did not seem such a big deal in the beginning but I do take these opportunities to make room for other trans women and color quite seriously, and since my term is ending after September, I decided to stay and hope that I will have a chance to recommend other trans women of color to my seat.”
Bishop Oliver Clyde Allen III, founder and senior pastor of the Vision Cathedral of Atlanta, said he does “respect those that left” and that the proposed cuts to Medicare and Medicaid are different from his own perspective, but he decided to stay with PACHA nonetheless as a representative of the faith community.
“My being part of PACHA was not about any president or any political party,” Allen said. “I was not on the Presidential Advisory Council to be friends with Obama, who appointed me, or any administration. My role is to advocate for my community, and that’s what I do. I’ve stayed on as a faith leader because the other part is as a faith leader I hadn’t believed God told me to leave PACHA, so I’m staying.”
Patrick Sullivan, a professor of epidemiology at the Emory University Rollins School of Public Health, said he respects those who resigned, but elected to stay “for the same reasons that they chose to leave, which is to say that we’re all trying to put ourselves where we feel like we can have the most impact at this moment.”
“HIV is the same virus and the pressures are the same pressures regardless of what party is in office,” Sullivan said. “We have amazing scientific tools to combat the HIV epidemic in the U.S. Treatment of people with HIV, which vastly reduces the chances that someone living with HIV will pass on the virus to someone else, and now Pre-Exposure Prophylaxis, which provides additional protection to people who are HIV negative and might be at risk — these are really amazing tools, and it shouldn’t be matter of partisanship.”
A common theme among PACHA members — both those who resigned and those who elected to stay – emerged over the Trump administration seeking to repeal Obamacare and replace it with the American Health Care Act.
An estimated 40 percent of people with HIV receive health coverage under Medicaid, which was significantly expanded under the Affordable Care Act for states that wanted to participate. Under the American Health Care Act, the Congressional Budget Office has determined 23 million would lose care largely due to cuts to Medicaid.
The U.S. House approved the American Health Care Act by a narrow party-line 217-213 vote. Now the U.S. Senate under Senate Majority Leader Mitch McConnell (R-Ky.) is drafting Senate Republicans’ version of the legislation in closed-door sessions with the intention of holding a vote before Congress adjourns in a matter of weeks.
Adimora didn’t hold back in her assessment that Trump’s plan to replace Obamacare with the American Health Care Act would be anything other than “disastrous” for people with HIV.
“The American Health Care Act and the administration’s previously stated interest in decreasing Medicaid is obviously disastrous for people with HIV and for the American public in general,” Adimora said. “It’s unclear to me why that is not obvious to everyone. There’s no way that you can leave so many people with inadequate health care coverage and expect the public’s health to do anything but get worse. There’s no way.”
Ogle recalled with indignation the news conference Trump held at the White House heralding as a victory House passage of the American Health Care Act.
“I saw them celebrate this in the Rose Garden on the White House lawn, a bunch of privileged white men with insurance, well-to-do, celebrating throwing 23 million people off of health insurance,” Ogle said.
Schoettes said if the U.S. government doesn’t seek to care for people with HIV with the Affordable Care Act, the nation needs “something a lot like it.”
“We need a health care system that is actually going to meet the needs of people living with HIV — as well as those with higher risk for people with HIV — and the proposal that they currently have on the table does not do either of those things,” Schoettes said.