Advocacy groups for people with HIV are calling for federal investment in affordable housing, food security, and other social programs as part of the U.S.'s broader fight against the epidemic.
The policy push by the U.S. People Living with HIV Caucus highlights how the government should look beyond medication to address disparities, reduce stigma, and ensure better quality of life for those living with HIV.
“When we think about responding to HIV, we almost always think in terms of health care but it should be about investing in a broader network of social services,” Jeffrey Crowley, program director of the National HIV/AIDS Initiative at Georgetown University Law Center and former director of the Office of National AIDS Policy under President Barack Obama, said in an interview.
“It’s thinking more about safe and affordable housing, enabling people to work, or helping people on disability return to the workforce,” he said.
The caucus released an agenda aimed at countering HIV strategies that only include a biomedical response. Its recommendations also include elevating the involvement of people with HIV in the federal strategy, promoting efforts to remove punitive laws that place a stigma on the disease, and attending to racial and gender disparities by ensuring resources are targeted to people of color, LGBT people, sex workers, and immigrants.
The document is intended to be a road map for lawmakers and other stakeholders to address the HIV epidemic at the federal level that puts quality of life first, the caucus said at a briefing on Wednesday.
The discussion comes as the Biden administration works to create a new national HIV response plan by Dec. 1, Harold J. Phillips, director of the White House Office of National AIDS Policy, said at the briefing.
“The Biden administration wants us to be bold and to both accelerate our efforts to end the HIV epidemic and implement plans that would require a whole government approach from other departments and programs that would help improve the quality of life for people living with HIV,” Phillips said.
Bringing more people living with HIV into care should be a top priority of the Biden administration, Carl Schmid, executive director of the HIV + Hepatitis Policy Institute, said in an interview.
There are half a million people in the U.S. who have HIV but aren’t getting adequate care even if they’re eligible for it, he said. “Just talking about HIV is really important because of all the stigma attached to it.”
Many within the HIV community feel that they don’t receive much attention from the federal government, according to Schmid. Investing more money in support groups and health and substance use services in addition to other social services is one way to address the issue, he said.
It starts with listening to people living with HIV and asking them what they need, Crowley said. “We need to start coming up with good metrics and measuring quality of life. We need to ask people, ‘Do you feel supported?’ and about their experience with stigma and discrimination,” he said.
Federal programs for people living with HIV need to show their commitment to addressing stigma and discrimination, Mark Misrok, executive director of the National Working Positive Coalition, said at the briefing. He also called for ending the practice of molecular HIV surveillance, in which public health officials identify rapidly growing pods of HIV transmission and track people with the disease.
“We know what we need. We need to be heard,” he said.
A fiscal 2022 spending plan approved by the House Appropriations Subcommittee on Labor, Health and Human Services, Education, and Related Agencies would include $2.7 billion, an increase of $231 million above the fiscal 2021 enacted level, for the Ryan White HIV/AIDS program and $190 million, an increase of $85 million, for that program’s Ending the HIV Epidemic initiative.
“This will continue the momentum already created and make further progress in ending HIV in the U.S.,” Schmid said. “Efforts to end HIV will help eradicate an infectious disease that we have been battling for the last 40 years and help correct racial and health inequities in our nation.”