Advocates Navigate Tricky Political Terrain for Federal HIV Funding to End the U.S. Epidemic

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Last week, Congress moved one step closer to allocating funding for the programs that will constitute the "Ending the HIV Epidemic" by 2030 strategy first announced by President Trump at the 2019 State of the Union address. The House Appropriations subcommittee that covers health released its budget markup, which is expected to be reviewed by the House Appropriations Committee on May 8. While Trump's budget request for funds for the "Ending the HIV Epidemic" programs asked for $291 million, Congress may increase federal spending on domestic HIV programs if the Senate agrees with the House budget and the result is signed by President Trump. This process should conclude October 1, when the 2020 budget year begins, but we've not had budget negotiations end on time in 20 years.

And whatever happens with this funding, one thing is clear: Many longtime Washington, D.C. advocates have an uneasy feeling about how to be supportive of the resources that may come from this initiative, while dealing with an administration that daily likes to abuse many of the communities that are most impacted by HIV -- and also dealing with inadequate resources to tackle the problem comprehensively.

On May 1, The Partnership hosted a reporter's roundtable on these complex challenges. The Partnership is a coalition consisting of AIDS United, NASTAD, the National Coalition of STD Directors, NMAC, and The AIDS Institute, which jointly advocate for federal spending and beneficial policy on HIV, sexually transmitted disease, and hepatitis C programs.

"The irony of us having to end the epidemic during this administration is not lost on me," said Paul Kawata, executive director of NMAC, at the roundtable.

Where Will the Plan's Funding Go?

As of now, the "Ending the Epidemic" plan really exists to help increase people's knowledge of their HIV status and to get more people with HIV into care and virally suppressed. For those who are HIV negative but may be at higher risk for acquiring HIV, the plan calls for an increase in the number of people on pre-exposure prophylaxis (PrEP) from currently 250,000 to over 1 million. To do this, the president's initial budget requested a $291 million increase for fiscal year 2020 in spending for domestic HIV programs at the Centers for Disease Control and Prevention (CDC), Ryan White CARE programs, the Indian Health Service, and community health centers -- many of which are in communities where a disproportionate number of people may be living with HIV. But these health centers have not had strong HIV testing, treatment, or PrEP or post-exposure prophylaxis (PEP) access programs in place. That funding will directly go to the 48 counties and five states that account for more than half of annual HIV diagnoses.

Some resources will also be going to the National Institutes of Health (NIH) for implementation science projects, whichstudy integration of evidence-based practices, interventions, and policies into health care and public health programs. The NIH's Centers for AIDS Research (CFAR) program provides administrative and shared research support to AIDS research projects. Currently, many of the CFARs, often connected to large university research institutions, may be conducting a range of domestic and international research projects, but there is no mandate that they carve out any research projects to address HIV epidemics in the communities where they're located, although some do. The final budget numbers haven't been reported yet, but advocates claim that altogether, the domestic HIV budget requests may total $462 million for next year. Funding had been relatively flat for many years prior to this plan.

"We're very much focused on how our concerns and our issues around appropriations, access to care, etc., can align with that plan," said Carl Schmid, deputy executive director with The AIDS Institute. "We know there's a lot of barriers, but we're pleased with where it's starting."

Trump Administration Claims to Be Ending HIV While Strangling ACA

To understand how confusing and contradictory the administration's policies can be, consider this timeline of events. On April 30, the House Appropriations Labor, Health and Human Services, Education and Related Agencies Subcommittee released its budget markup, granting the increase to domestic HIV spending requested by the president. One day later on May 1, the Trump administration filed a motion in federal court to strike down entire Affordable Care Act, which would kill funding for Medicaid expansion, end coverage for people with pre-existing conditions (including HIV), and could send some state AIDS Drug Assistance Programs back to the days of waiting lists for people to get help paying for lifesaving medications -- when it is now widely accepted that people who start treatment sooner fare better in terms of their health over the long haul.

On May 2, the Trump administration also announced its final "conscience rule" to allow health providers to decline to provide care for people based on their religious beliefs, which can impact a range of people, including LGBT people and women seeking reproductive care and abortion services. Some advocates have struggled with these policy contradictions from the administration on a national level -- and also for themselves as a community.

"Particularly, if we look at who gets HIV in America right now, it's about gay men, particularly gay men of color, [including] black gay men," said Kawata. "It's about the transgender community, particularly trans women of color. It's about black and Latina women. It's about drug users. And to say that those communities have a challenging relationship with the administration would be an understatement."

Progress Has Been Made Under Republican Administrations Before

This isn't the first time advocates have had some success in advancing funding for portions of an HIV policy and for vital programs during administrations that proved hostile to many of the communities that are most impacted. The Ryan White CARE Act was passed and signed into law by President George H.W. Bush in 1990. George W. Bush, while relatively out to lunch on domestic HIV issues, did in fact launch the PEPFAR program in 2003, which has helped boost treatment access for people with HIV outside of the United States. Trump's proposed budget seeks to cut PEPFAR funding -- and U.S. contributions to bilateral global health programs as well.

Advocates are hoping, like in previous Republican administrations, that they will be able to work with Congress to get some things done to advance HIV prevention, treatment, and care programs, while having to battle lawmakers on others.

"The Partnership has been on record for being against other policies that are antecedent to the intent of this initiative," said Terrance Moore, acting executive director of NASTAD. "In order to address HIV, you have to address all the social and structural barriers and access issues that are occurring around the country. We want to leverage this opportunity to continue to accelerate this work."

"If we wait and do nothing, that means 40,000 cases every year," added Kawata. "And the majority of those cases are going to happen within those communities [adversely targeted by the administration's other policies]. It's not an easy tightrope to walk, and we will make some mistakes. At the end of the day, we had to go on the side of trying to end the epidemic."