The Sound of Silence
HIV/AIDS advocates sound the alarm about a mute White House
by Larry Buhl
In June, six members of the Presidential Advisory Council on HIV/AIDS (PACHA) resigned en masse. In a joint article published in Newsweek, they said they could not effectively do their jobs under a president “who simply does not care.”
Those resignations spurred Reps. Barbara Lee (D-Calif.) and Ileana Ros-Lehtinen (R-Fla.), the co-chairs of the Congressional HIV/AIDS Caucus, to deliver a letter to the White House, demanding that Trump drop the proposed budget cuts to HIV/AIDS programs, restore the website it scrubbed in January, and appoint a national AIDS policy director.
PACHA was created under President Clinton in the mid-1990s and since then has had twenty-five seats, not always filled, consisting of researchers, service healthcare providers, academics, HIV advocates, people living with HIV. Its mandate is to produce recommendations for each administration on what federal government should be doing to fight the HIV/AIDS epidemic. Over time it has expanded its mission, including policy proposals on comorbidities like HIV and hepatitis, and, under Obama, created four subcommittees, each aligned with parts of the National HIVAIDS Strategy.
I spoke with Scott Schoettes, who was co-chair of PACHA’s disparities committee before resigning from PACHA with the other five. He is the HIV project director at Lambda Legal. I asked him what drove him to pull out of PACHA.
Scott Schoettes: My concerns started when [then-candidate] Trump refused to meet with HIV advocates. Something was scheduled and cancelled and the campaign did not reschedule. Hillary Clinton and Bernie Sanders’ campaigns met with those advocates.
From there, the Office of National AIDS policy website came down on Inauguration Day. At first we thought they were going to add their own imprimatur on it and put it up, but to date it hasn’t come up and it’s almost six months. And Trump hasn’t appointed anyone to be a director of that office. That person is an important conduit from the council to the White House. It has a seat on the domestic policy council. By contrast, Obama had appointed someone to this post a little over a month into his administration.
But the trigger for the resignation was the support for Trumpcare, or whatever it’s being called now. Trump-not-care, the repeal of Obamacare. When it passed in the House it became clear that Trump was not engaged on the policy side; it was all about making a deal and scoring a political win. That celebration they had after the House passed it made me wonder, what exactly are we really celebrating now?
Larry Buhl: Playing devil’s advocate, it’s not clear that Trump has understanding of policy in many areas.
I don’t think it should require him showing antipathy toward people with HIV to call him out. This is one of his responsibilities. He doesn’t care. He’s not thinking about it.
So the resignations were a protest.
We resigned to force this conversation. Nobody was going to listen to us while we were sitting there trying to get the ear of an administration that didn’t care. Now the administration has had to start paying attention a bit. The people who remain may have their recommendations considered more fully.
On National HIV Testing Day in June, there was a statement. I can guarantee there was no statement in the works before our resignations. That’s better than nothing. I hope part of this will be that they will pay more attention to the people on the council.
What’s next for HIV/AIDS advocates?
There are several strategies. There are still fifteen people left on council, all good people I respect, and they will move forward with the work.
There is an effort underway to influence the discussion on the Republican side. That is what I’ve been advocating for, some moderate Republicans to meet with us, and with other HIV advocates. If we’re not going to get our message to the administration, then we can take it to some in Congress. It’s been hard to get in the door so far.
The fight continues
One organization that still has a foot in the door is AIDS United. I spoke with Bill McColl, its director of health policy, who, since he wanted to keep that door open, was rather diplomatic when I asked him about his level of alarm at the actions (or non-actions) of the Trump administration.
He told me he was at least encouraged that there were still knowledgeable officials—not political appointees—at the highest level in the administration. But he was concerned about possible missed opportunities.
“Now that the U.S. has an opportunity to turn the corner on the HIV epidemic, with new technology to prevent infections, I’m concerned about the administration’s lack of focus [on HIV/AIDS].”
Larry Buhl writes the Hep Talk column for A&U.