Burley III, U. Addressing HIV/AIDS within a New Administration. Harvard Public Health Review. Winter 2017-2018;12. DOI:10.54111/0001/L5
Since the CDC published a report of five cases of Pneumocystis carinii pneumonia (PCP) in previously healthy men in Los Angeles in the early 80’s, the United States government has taken steps to address the greatest public health crisis of our generation – HIV/AIDS. In 1987, Ronald Reagan appointed the President’s Commission on the HIV Epidemic (1987–88) to investigate the AIDS epidemic.
A step forward.
However, at its inception the President’s Commission was mired by in-fighting over personnel and ideologies around sex and sexuality which subsequently led to resignations and inaction on the Administration’s part in implementing the recommendations of the Commission.
A step backward.
In response to the Reagan administration’s failure, Congress passed legislation that created the National Commission on AIDS (1989-1993), which specified that its members be people “especially qualified … by reason of their education, training, or experience” and the commission’s membership balanced to cover “the fields of medicine, science, law, ethics, health-care economics, and health-care and social services”. The personnel – which included Earvin ‘Magic’ Johnson – was strong, and the recommendations were sound, but again the leadership was disengaged. Frustrated by this, Magic resigned from the Commission and said to then President H. W. Bush, “No matter how good the team may be, I said it won’t win the championship without the owner fully in the game. I am disappointed that you dropped the ball, and your Administration is not doing everything that it must to fight this disease.”
More backward steps.
Finally, in 1993 President Bill Clinton established the White House Office of National AIDS Policy (ONAP) followed by the commissioning of The Presidential Advisory Council on HIV/AIDS (PACHA) in 1995. In its current iteration, PACHA provides advice, information, and recommendations to the White House and Secretary of Health and Human Services regarding programs, policies, and research to promote effective treatment, prevention and cure of HIV infection and common co-morbidities.
Since, PACHA has achieved two decades of bipartisan forward steps in the fight against HIV at the executive level with the establishment of President’s Emergency Plan for AIDS Relief (PEPFAR) by President George W. Bush, and the country’s first National HIV/AIDS Strategy (NHAS) under the Obama Administration.
In walks President Donald Trump.
On June 16th, 2017, six members of Donald Trump’s Presidential Advisory Council on HIV/AIDS published a joint resignation letter in Newsweek titled, “Trump Doesn’t Care About HIV. We’re Outta Here.” The decision by me and my colleagues to resign did not come without deep contemplation and an attempt to give President Trump a chance. However, after the passage of the American Health Care Act in the House of Representatives, it was clear that like some past administrations, the Trump administration was not interested in the advice of healthcare professionals and advocates.
When Scott Schoettes, Co-chair of the PACHA Health Disparities Subcommittee, reached out to other PACHA members and said, “I’ve had enough, who’s with me?”, of the 22 members, Lucy Bradley-Springer, Gina Brown, Michelle Ogle, Grissel Granados, and I decided to join Scott in resigning as a protest to the current administration’s anti-poor and anti-HIV policies.
The unrequited response of the Trump Administration to the recommendations of PACHA was a stark contrast from what we as Obama appointees had grown accustomed to.
As Obama appointees, his Administration provided us with the tools we needed as an Advisory Council to do our job and do it well.
The Trump Administration has since taken those tools away.
President Obama introduced the country’s first-ever National HIV/AIDS Strategy (NHAS) in 2010 and updated the strategy in 2015 through 2020 with much guidance from PACHA. The Trump White House removed that strategy from the official White House website the moment Donald Trump was sworn in and has yet to staff the Office of National AIDS Policy at the White House where the strategy’s implementation was overseen.
President Obama made healthcare available to everyone with the Affordable Care Act, including Medicaid expansion for thousands of people living with HIV who otherwise were not able to afford or qualify for care due to their health status. President Trump presented a budget with deep Medicaid cuts and celebrated the passage of the House American Health Care Act (AHCA) and subsequent attempts to repeal Obamacare that would leave more than 20 million Americans without insurance over the next 10 years.
President Obama prioritized public assistance programs for food, education, and housing for low-income families, benefiting people living with HIV. President Trump has waged a war against the poor with budget cuts to social welfare programs and a tax reform plan that puts money in the pockets of the wealthiest at the expense of programs for the everyday citizen, including people living with HIV.
Finally, the Obama Administration valued the advice of experts and staffed his administration with the best and brightest of their respective fields. The Trump Administration is a nepotistic revolving door of appointees who have publicly rejected science, bended the truth, and banned the use of words like “evidence-based”, and “science-based” by government agencies like the CDC and HHS.
And yet, we were willing to give this administration a chance, but the writing was on the wall from the onset. Less than three months after the inauguration or President Trump, PACHA members showed up to an HHS room previously used for storage, for our 61st Full Council PACHA meeting and 1st under Trump – not quite the White House hospitality we’d grown accustomed to.
Under a watchful eye of Trump representatives, we carefully crafted a letter to the President and Secretary of Health introducing PACHA and highlighting our previous accomplishments. We chose our words carefully as we posed recommendations for the Administration moving forward that included strong support for Medicaid expansion, maintenance of the ACA, continued implementation of NHAS, replenishment of Ryan White HIV/AIDS Program funds, and continued financial commitment to PEPFAR and the Global AIDS Fund to name a few. The response we received was tepid at best, courtesy of a low-level official likely checking off items on their to-do list of “busy work.”
And then there was the celebration of the passing of the House AHCA in the Rose Garden that marked the final straw.
We tried to work with the president, understanding that we did not serve him but the American people rather, but he took our tools away and we could no longer do our work effectively. Without ONAP, there is no staff to carry out the implementation of NHAS through 2020 and beyond. Without the implementation of NHAS, our efforts to reduce new HIV infections, increase access to care, reduce HIV-related disparities, and achieve a more coordinated national response are relegated to a document buried deep within government archives. And with a proposed budget and approved tax bill that cuts healthcare and HIV related social services for millions, we can’t achieve the UNAIDS goal of 90% of all PLWH knowing their HIV status, 90% of all people with diagnosed HIV infection receiving antiretroviral therapy (ART), and 90% of all people receiving ART achieving viral suppression by 2020.
A builder can show up to work everyday to do her job, but if you take her hammer away she can no longer construct with the precision and accuracy that she has been trained to build. Donald Trump took away our hammers, and he’s begun to demolish everything PACHA has worked hard to build over the last 20 years. Six of us walked away from the job because we no longer had the tools we needed to successfully build, and we were not satisfied with simply showing up.
Following the President’s controversial Charlottesville comments, at least three other members of PACHA resigned while another handful termed off, leaving the membership of the 25-member committee at 10. In September 2017 the PACHA charter was renewed by President Trump, but on December 27, 2017 he abruptly dismissed the remaining members of PACHA without warning via a FedExed form letter signaling an uncertain future for the priorities of PLWH by this Administration.
As the first of many presidential advisory appointees to resist the Trump Administration by resigning, our resignation garnered national and international attention, adding fuel to the conversation around healthcare and social services, and challenging the administration to publicly address its commitment to PLWH moving forward. For that we are grateful. Although our charge to do this important work within the U.S. government has ended, our will to achieve the goals we previously set continues. Together we remain committed to fighting HIV.
Until there is a cure.
Ulysses Burley III, MD is an appointee to the Presidential Advisory Council on HIV and AIDS (PACHA). He is the ELCA Executive Committee member to the World Council of Churches (WCC), and he serves on the WCC Gender Advisory Group and Ecumenical Advocacy Alliance’s (EAA) Access to HIV/AIDS Treatment Working Group.