Michael Ruppal, executive director of the AIDS Institute, is being positive about President Trump’s State of the Union vow to end new cases of HIV/AIDS in the United States by 2030, but he understands that not everyone in the HIV/AIDS universe shares his attitude. “I know it’s been hard for people to separate the policy or their positions on the man that’s giving the message versus what he was saying, but we’re optimistic,” says Ruppal.
Adjusting their vision so it looks past the messenger and focuses on his message isn’t easy for HIV/AIDS advocates. In an open letter to Trump urging him to honor his State of the Union commitment, AIDS United and 21 other HIV/AIDS advocacy groups had a long list of grievances: assorted efforts to repeal the ACA; his Justice Department’s effort to remove ACA protections for preexisting conditions; cuts in Medicaid; proposed changes to Medicare drug-coverage rules; barring transgender people from serving in the military.
It’s a matter of trust, or a lack of it. “There are currently too few details available around the Trump administration’s plan to end the HIV epidemic to garner significant buy-in and trust from HIV advocates who have spent the last two years fighting against the administration’s attacks on the health care and basic human rights of people living with HIV,” AIDS United said in a blog post.
But, notably, the HIV/AIDS advocates aren’t being entirely dismissive, either. The cautious optimism stems from the particulars buried in the Plan for Action that HHS Secretary Alex Azar released the day of the delayed State of the Union. The advocates also have some faith and working relationships with the federal government health officials who will oversee implementation of Azar’s plan.
In his plan, Azar spelled out four key strategies for a boots-on-the-ground “HIV HealthForce” (a reprise of Trump’s “SpaceForce”?): develop programs to increase adherence to HIV medication; increase access to testing for HIV; provide local support to track all HIV cases to stop chains of transmission; and to expand access to pre-exposure prophylaxis (PrEP), which involves taking daily medication to prevent HIV. The plan aims to achieve this by targeting geographic hotspots of new HIV cases, using data to identify areas of rapid spread and target local interventions, and by funding the aforementioned local “HIV HealthForce”.
The targeted AIDS hotspots are 48 mostly urban counties with the highest burden of new HIV cases, plus Washington, D.C., San Juan, and seven states with high rural HIV burdens (defined as 75 or more cases with 10% or more of those diagnoses in rural areas). Interestingly, five of those targeted states—Oklahoma, Missouri, Mississippi, Alabama, and South Carolina—haven’t expanded Medicaid. The other two—Arkansas and Kentucky—have imposed work requirements in Medicaid. Kaiser Health News recently reported on the challenges of HIV outreach in rural Oklahoma, an obstacle course that includes meager access to health care and social services, lingering stigma surrounding HIV/AIDS and homosexuality, the second-highest uninsured rate in the country, and haphazard sex education programs. “HIV is thriving in the South” is the title of a New York Times commentary by Houston-based infectious disease specialist Charlene Flash, elucidating many of the same obstacles to preventive initiatives in that part of the country.
“We know it’s not him doing this,” Ruppal says of Trump and the HIV/AIDS moonshot. “It’s the people working for the government. They’re the people this organization has been in contact with, advocating with different departments over the years.”
Others with HIV/AIDS bona fides within the “deep state” that Steve Bannon loathed are CDC Director Robert Redfield, an infectious disease researcher for 30 years who’s focused on HIV; Jonathan Mermin, director of the CDC’s National Center for HIV/AIDS, Viral Hepatitis, STD and TB Prevention, who oversaw HIV prevention efforts in the first four years of the Obama administration; and Anthony Fauci, director of the National Institute of Allergy and Infectious Diseases. Fauci has advised five presidents and was one of the architects of the President’s Emergency Plan for AIDS Relief (PEPFAR), a U.S. government initiative started under President George W. Bush to address the global HIV/AIDS epidemic, primarily in Africa. Fauci was the lead author and Redfield a coauthor of an online JAMA editorial about Trump’s HIV/AIDS moonshot.
But Redfield, Fauci, and company have their work cut out for them. Here are three areas where HIV/AIDS advocacy groups hope they do some of that work:
The AIDS Institute has called on CMS to reject proposed rules that would allow prior authorization and step therapy requirements in Medicare Part D and Medicare Advantage. In a comment letter on the proposed rules, Ruppal and the institute’s deputy director, Carl E. Schmid II, asked Azar to walk back the proposal to give Part D plans greater flexibility in covering the six protected classes of drugs—among them antiretrovirals for HIV/AIDS patients. The proposed rules would let Part D sponsors implement broader use of prior authorization and step therapy—also known as “fail first”—for these drug classes and exclude a drug in one of these classes from a formulary if it’s a new formulation or subject of a price spike.
“Prior authorization for HIV medication doesn’t make sense,” Ruppal says. For these patients to maintain low viral loads, they must stay on complex treatment regimens involving multiple drugs, he says. “Anything that’s a disruption of that could lead to them not getting their medication, which could lead to drug resistance.” Ruppal himself had to figure out a change to his own regimen when his plan’s formulary changed and he had to fail on three drugs before getting back on track.
AIDS United has launched an ad campaign calling on the administration to withdraw the proposed rule. An open letter that organization spearheaded stated that the proposed changes “roll back our progress” against HIV.
Azar denied the Part D proposal would limit access to the antiretrovirals for HIV at last year’s National Ryan White Conference on HIV and Treatment. Rather, he said, the idea was to bring down the prices of those drugs and “expand patient access.”
As the advance copy of Trump’s State of the Union speech was making the rounds in Washington, the Human Rights Campaign, a civil rights organization and lobbying group for LGBTQ people, fired off a statement critical of what it pointedly called the “Trump–Pence administration.” The vice president is a social conservative who has opposed LGBTQ causes like same-sex marriage. “From undermining protections for transgender youth, to threatening to deport Dreamers, to attempting to ban transgender service members from the military, to working to eviscerate health care coverage for those most vulnerable—this is a presidency rooted in prejudice and fear,” said HRC President Chad Griffin’s statement.
Besides Trump’s move to bar transgender people from serving in the military, which the Supreme Court allowed to go into effect while an appeal is pending, HHS last year was reportedly exploring a new definition for gender under the Title IX program. The New York Times reported the proposed definition would define gender as either male or female, based on the genitals a person is born with and would be unchangeable. Genetic testing would be used to solve disputes. About 1.4 million Americans define themselves as a gender other than the one they were born with. Roger Severino, director of the office for civil rights at HHS, was director of the DeVos Center for Religion and Civil Society at the Heritage Foundation before he joined HHS. HHS declined to comment on the leak, but a spokesman says the agency hasn’t made any move to change the definition.
For the past several years, the AIDS Health Foundation has criticized the CDC for ignoring the use of condoms as a safe-sex practice. Last November, when the CDC failed to mention condoms again in its annual World AIDS Day message, AIDS Healthcare Foundation President Michael Weinstein blasted the agency. The CDC, he said, “should be ashamed of itself for failing to take the opportunity to promote safe sex and condom use,” he said, calling the CDC’s issued statement “mumbo-jumbo.”
As Politico pointed out, one of the constituencies Trump will have to appeal to is religious leadership, a group for which sex education and talk of condom use are anathema. Redfield, the CDC director, seems to be changing his mind about condoms. From 1987 to 1996, Redfield was medical adviser to the anti-gay Americans for a Sound AIDS Policy, which objected to condom use, and in 2002 led a research team in Africa by its successor organization, Children’s AIDS Fund International. But last year in an interview with the Chicago Sun-Times, Redfield said he now acknowledges that condoms and needle exchanges work to prevent STDs. “Dr. Redfield has spoken in support of the use of condoms, so we hope that will be part of the plans to stop HIV infections by 2030,” says Ged Kenslea, communications director at the AIDS Healthcare Foundation.
Here’s one subtle hint the CDC may be getting on board: Information on the CDC’s website mentions that PrEP—a daily medication regimen that is known to reduce a person’s risk of getting HIV—combined with condoms can lower a person’s risk of getting HIV via sexual transmission more than PrEP alone.
It’s just some of the work that needs to get done if Trump’s HIV/AIDS moonshot has a chance to land.