PACHA Firings & the Future of AIDS Advocacy

Leadership Matters
PACHA firings show challenges of HIV/AIDS advocacy under Trump
by Larry Buhl

Two days after Christmas, President Trump fired the remaining sixteen members of the Presidential Advisory Council on HIV/AIDS (PACHA) via a letter delivered by FedEx. The fact that Trump had signed an executive order renewing PACHA for an additional year in September, and that some council members’ terms had not expired—plus the administration’s previous actions, and inactions, on HIV/AIDS—led some to speculate that Trump was turning his back on HIV/AIDS advocacy.

Miguel Gomez, a spokesperson for HHS, dismissed concerns about the firings, saying in an email, “Changing the makeup of federal advisory committee members is a common occurrence during Administration changes. The Obama Administration also dismissed the George W. Bush Administration appointees to PACHA in order to bring in new voices.”
Gabriel Maldonado, CEO of Truevolution, an HIV/AIDS advocacy organization based in Riverside, California, who was a remaining member of PACHA, told A&U that the he wasn’t buying the administration’s explanation.

“Why would you re-swear in people if you’re going to fire them in a few months?” Maldonado said. “Why didn’t they allow the people who were terming out to term out and then put in their own people? And if Trump wanted to appoint his own people, why wait a year to do it?”

PACHA was created during the Clinton administration and for twenty-two years has provided three administrations with policy advice for promoting more effective treatment and prevention for HIV. The council is twenty-five unpaid advisory positions, not always filled, consisting of researchers, service health care providers, academics, HIV advocates, and people living with HIV. Over time it has expanded its mission, including policy proposals on co-morbidities like HIV and hepatitis, and, under Obama, it added four subcommittees, each aligned with parts of the National HIV/AIDS Strategy.

Gomez said that outgoing PACHA members were invited to reapply and that as of late January, HHS was in the process of reviewing submissions.

Maldonado, a black and Latino man living with HIV, who was also the youngest member of PACHA, said he worries that the firings will create a “vacuum” in real-world HIV/AIDS experience.

“HIV/AIDS policy requires a community-level understanding of the needs and disparity of everyday people who are disproportionately affected. It is about understanding the nuances of what it means to be a black gay man in America and what contributes to black men having the largest health disparities, all the way to the intersecting violence and social inequities of those experienced in the transgender communities.

“I am not just speaking as a service provider or epidemiologist but I can speak from my experiences of being a black Latino gay man with HIV and can bring a comprehensive understanding. Why was I the only member under thirty at the table? That already speaks to a gap in the leadership. So dismissing the entire council abdicates the already institutional and community based knowledge that you had in the council, and I think that is a disservice.”

HIV/AIDS leadership under Trump
The PACHA firings came a half year after six members resigned in frustration over what they claimed was Trump’s indifference about HIV/AIDS. Scott Schoettes, senior attorney for Lambda Legal and former co-chair of PACHA’s disparities committee, was one of the six who resigned in June. Recently he expressed pessimism that the Trump administration would appoint PACHA members with qualified people from their communities that the administration will listen to.

“At this point it doesn’t matter what the administration will do regarding the council now,” Schoettes said.

“The administration has made it clear that they don’t want to hear anything about diversity, transgender [issues] or anything evidence-based,” Schoettes added, citing three of the seven terms that the Trump administration recently forbade the CDC from using. Other verboten terms included fetus, science-based, vulnerable, and entitlement.

Schoettes added that the administration’s approach to HIV/AIDS is consistent with its approach to science, LGBT issues, and healthcare; that is, indifferent at best.

“Under Obama, I felt like we were listened to. The National AIDS Policy director sought our input, and went to [PACHA] meetings. Under Trump there was a complete reversal. There are still great people at HHS, career people who understand [the HIV/AIDS crisis]. But the political appointees worry me, and I have a very negative perspective on what the White House will do.”

In January, Politico reported that the administration was planning new protections for health workers who don’t want to treat transgender patients based on their gender identity “or provide other services for which they have moral objections,” adding to the mounting evidence, advocates say, that the Trump administration is hostile to LGBTs.

Also in January, the White House issued new guidance on Medicaid work requirements, which could open the door for states to impose employment as a condition of Medicaid eligibility. The HIV Medicine Association responded to this with an open letter saying it was “deeply concerned that imposition of work requirements threatens the health of millions of Americans who count on the program, including more than 40 percent of patients with HIV.”

And, one year into Trump administration, the Office of National AIDS Policy remains without a director (or a web page). But the biggest point of contention between PACHA members and the administration was Republicans’ insistence on repealing the Affordable Care Act (ACA), or Obamacare, and replacing it with Trumpcare. Several on the committee were authors of the National HIV/AIDS Strategy, which recognized the contributions of the ACA.

Both Maldonado and Schoettes said the new administration’s major legislative push, repeal and replace, unnerved them because so much of their strategy was built around the acknowledgement that the ACA was in place and helping those with HIV/AIDS.

Maldonado said that PACHA members were able to voice their discontent, but he added that their policy considerations collided with conservative politics and the fervor for ending Obamacare. “When the platform of the entire Republican administration is to repeal the ACA there is very little political power that you have as a collective body to advocate on a chronic health issue to sway the policy of an entire administration and political party. You only can do so much on the council.”

There are signs that all is not lost for HIV/AIDS policy, even under the Trump administration. Late last year the State Department reaffirmed the nation’s commitment to foreign aid for HIV/AIDS, saying, “for the first time the end of the epidemic as a public health threat is in sight.” The Surgeon General supports syringe services, and syringe services are still in the federal budget, despite being illegal. And while a White House budget proposal last year would have slashed nearly $1 billion from HIV-related programs, Congress rejected most of those cuts.

Those actions, plus pushback from Congress encourage Carl Schmid, Deputy Director of the AIDS Institute. While Schmid expressed concern over the missing central AIDS office at the White House and the administration’s constant undermining of the ACA, as well as the so-called “seven dirty phrases” issued by the CDC, he says the tools for handling HIV/AIDS still exist at federal level.

“There are some positives, still,” Schmid said. “Ryan White continues, and we met with the head of HERSA who said they remain committed to helping Americans access [HIV/AIDS] care. And, after the community asked Trump to come out with a statement of commitment to HIV/AIDS on World AIDS Day, he did that. And Trump did renew the PACHA charter in September, which was one of our asks.”

Schmid added that the AIDS Institute and others would continue to ensure that cuts don’t find their way into the 2019 budget. But he said that the administration’s continual undermining of Obamacare and rejection of evidence-based science are more ominous than the PACHA firings.

“How can you end AIDS if people don’t have coverage? We want the opposite of politically-based health care and HIV/AIDS policies.”

Trump puts greater burden on states
Critics of the Trump administration’s approach to HIV/AIDS say that, despite much of the funding still being in place at the federal level, the general lack of direction puts a greater onus on states and local service organizations.

“When Trump was elected, a large number of friends were booking flights to D.C., I was booking a trip to Sacramento,” Maldonado said. “As a California resident I knew that there would be a greater call for our state officials to invest more in HIV/AIDS services. What if block grant Medicaid went into effect? What would the impact to state based grants, to the Medical system?”

During his tenure, California Governor Arnold Schwarzenegger made significant cuts to HIV prevention funding. But Maldonado says that with Obama in office there were “innovative and supplemental funding mechanisms that could let us piecemeal some of those gaps.”

Maldonado added that the challenges of a Trump administration are a call for advocates to hold elected officials and public leaders accountable at every level. “It is up to us to mobilize and strategize around filling the gaps in advocacy. Once we write specific methods about how to address HIV/AIDS and put it in the hands of public officials, that is when we hold them accountable.”

Larry Buhl is a multimedia journalist, screenwriter, and novelist living in Los Angeles. Follow him on Twitter @LarryBuhl.