One year ago, not long after Donald J. Trump was elected U.S. president, I sat in a room with many of the HIV community's top policy leaders in Washington, D.C., discussing what our work would be over the course of the next four years. At the time, I had not yet joined TheBody.com as senior editor; I was still policy director at Treatment Action Group. One of the things that I stated to my colleagues, as we went down the list of policy priorities, federal agencies, and other such issues, was that we should think about what might become of the Presidential Advisory Council on HIV/AIDS (PACHA).
Trump talked in his campaign about "draining the swamp" in Washington. Most people took that phrase to mean corporate lobbyists -- which was certainly how he used it to appeal to his white populist base. My question to my colleagues in HIV policy was, "What if he means us?": What if he disbands PACHA and other presidential advisory groups that are the vehicle through which advocates, ordinary citizens, and field experts gain access to the White House to influence public policy?
Two days after Christmas in 2017, he did just that.
As has been widely reported, on Dec. 27, the remaining members of PACHA received letters via FedEx relieving them of their duties. Although the administration posted a notice for new nominations (dated Dec. 1 with a Jan. 2 deadline to apply), it left just days over the holidays for dismissed members to reapply for new terms).
Condemnation from HIV advocates was swift. One of the more eloquent responses was from Naina Khanna, executive director of Positive Women's Network (and former PACHA member, 2010-2014) who declared "this is war," in an opinion piece published by Huffington Post.
It makes sense that advocates would push back against such disregard for the work of PACHA -- and people living with HIV. After all, President Trump was reported to have declared that one of his reasons for aggressive deportations of immigrants was because Haitians "all have AIDS." However, in many ways, as jarring as the sudden dismissals were, they should have been expected. And, much of the media coverage of the event actually ignores the fact that, as hostile to procedure and protocol as this administration has been overall, we've seen this playbook on PACHA from past Republican administrations.
Related: Looking Back on 2017 in HIV/AIDS, and What's in Store for 2018
The Presidential Advisory Council on HIV/AIDS was established under President Bill Clinton in 1995 to provide "advice, information, and recommendations to the [Department of Health and Human Services (HHS)] Secretary regarding programs, policies, and research to promote effective treatment, prevention and cure" of HIV and AIDS.
In 2001, the Bush administration planned to disband PACHA -- but activists fought that decision, and won ... sort of. Instead of disbanding it, President Bush appointed Thomas Coburn, M.D. At the time, Coburn was a former GOP congressmember from Oklahoma (he became a senator in 2004) who battled with Clinton-era appointees, largely to block any recommendation of evidence-based comprehensive sex education (as opposed to an abstinence only or before marriage framework), or even advocacy for the use of condoms as a highly effective method of prevention. PACHA in those days was a very contested space, and some activists called for it to be disbanded during that time.
Despite the controversy over the role of PACHA during the Bush era, HIV activists continued to work where they could outside the advisory council. For example, as HIV rates in the mid-2000s were climbing in black communities, black gay men and black women advocates continued to push the Centers for Disease Control and Prevention (CDC) to scale up its testing efforts, and in 2006 they were successful in getting the CDC to recommend routine testing for all Americans, which is credited with greatly increasing the number of people who knew their status.
Advocates found other ways to advance a domestic agenda despite the social conservatism that dominated PACHA during the Bush years. When the Bush administration founded the President's Emergency Plan For AIDS Relief (PEPFAR) to provide resources to increase the number of people on antiretroviral therapy, U.S.-based activists began to rally around a national plan for the domestic HIV response -- which is something PEPFAR required of any country applying for funding. In 2007, a national campaign was in initiated by Chris Collins (who'd published a blueprint for a national HIV plan in early 2007) and by Community HIV AIDS Mobilization Project (CHAMP).
JD Davids, TheBody.com's director of strategic communications, was executive director of CHAMP at the time, and I was director of communications. We worked with other activists to push the federal government for a national HIV/AIDS strategy, and presidential candidate Barack Obama promised to deliver. That strategy was developed under Obama's first Office of National AIDS Policy (ONAP) director, Jeff Crowley, and released in 2010. And, though many in the community felt the strategy was insufficient because it had no budget or authority to direct resources, it did, however, create a framework for collaboration across federal agencies that hadn't existed prior, and it gave PACHA a real blueprint for its own mission and work.
In the years of the Obama administration, PACHA became a more congenial place to do work and debate approaches, and the anger over the abrupt firing of the remaining PACHA members is a result of it becoming a more functional body in recent years. For example, in 2015 PACHA made recommendations to HHS Secretary Burwell and President Obama to support the standardization of the HIV Care Continuum measure across all federal agencies, public/private insurance, and service providers to ensure quality standards of care were being met across the country. Also, PACHA passed a resolution on HIV criminalization to modernize existing laws and helped to create an interagency taskforce on women and girls, gender-based violence, and HIV.
PACHA's Decline in the Trump Era
Although advocates had become accustomed to a more constructive use of PACHA, the writing was on the wall that changes were afoot shortly after President Trump was elected. The new administration failed to replace the last Obama-era ONAP director, Amy Lansky, Ph.D., M.P.H. (a CDC official who stepped in as ONAP director after the departure of Douglas Brooks in 2016). Then, the administration removed LGBT- and HIV-related pages (and the portal to HIV.gov) from the White House website on the day of the inauguration. Advocates also noticed that references to the National HIV/AIDS Strategy ceased to appear in federal agency notices.
When the Trump administration initiated a policy course that adversely impacts people with HIV (e.g., the ban on immigrants from a handful of countries, appointments of Tom Price and Jeff Sessions, attempts to repeal the Affordable Care Act, and an attempted ban on transgender people serving in the military), several members of PACHA left in protest in June 2017 before their terms ended. It shouldn't have been too much of a shock that the administration then took measures to remove remaining members and start from scratch, if at all.
When I heard the news over the holidays that PACHA members had been dismissed, I wasn't surprised. White House-level advisory councils are often political and filled with the values and goals of the incumbent administration. But we still have no information about whether the administration is planning to re-staff ONAP with a director and support staff. Without an ONAP director or a National AIDS Strategy, the role of PACHA is also in question.
If Trump replaces PACHA with social conservatives who don't believe in comprehensive sex-ed, condoms or pre-exposure prophylaxis (PrEP), then advocates will likely have to return to the era of protesting PACHA recommendations and trying to do more work through federal agencies such as the CDC, National Institutes of Health, Health Resources and Services Administration, etc., to ensure as few losses in progress as possible for people living with HIV and the communities most at risk.
The political environment surrounding the dismissal of PACHA members has added to the alarm, and confusion. It is certainly understandable why activists would fight to avoid losing more ground. When PACHA members represent the real expertise of scientists, providers, advocates, and people living with HIV, PACHA can be very useful to help coordinate federal efforts and create a bridge from the White House to community leaders to create effective measures for combatting HIV.
But, for now, as frustrating as it has been for advocates that PACHA doesn't have any real power to direct resources or major policy, in this moment we should be thankful that it doesn't. The HIV community has a history of dealing with a PACHA being run by conservative ideologues. We shouldn't lose PACHA, but in a hostile political climate, the community will always find ways to work in spite of it, if need be.