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The U.S. People Living with HIV Caucus (HIV Caucus) and its member networks, all led by and for people living with HIV, celebrate the inclusion of a multi-dimensional quality of life indicator that includes social determinants of health in the recently released 2022-2025 National HIV/AIDS Strategy (NHAS) Federal Implementation Plan.
People living with HIV must never be reduced to simply our viral loads. By crafting a complex quality of life indicator that incorporates self-reported health, unmet need for mental health services, unemployment, food insecurity, and housing instability, the White House Office of National AIDS Policy (ONAP) has demonstrated its commitment to a well-rounded quality of life for people living with HIV.
Input from the HIV Caucus was critical in winning a quality of life indicator that goes beyond the biomedical to reflect a holistic approach to measuring and striving for wellness for people living with HIV.
“This is a tremendous step forward. In previous iterations of the National HIV/AIDS Strategy, progress for those of us living with HIV has been measured solely by our viral loads, medical visits, and CD4 counts. But we know that you can be virally suppressed and still isolated, depressed, hungry, unhoused, and unable to afford basic survival needs. Biomedical markers don’t show how we are actually doing. This new quality of life indicator, on the other hand, gets us much closer,”
said Ronald Johnson, Chair of the HIV Caucus.
“We are grateful for ONAP Director Harold Phillips, under whose leadership the NHAS federal implementation plan makes monumental progress towards addressing priorities of the networks of people living with HIV,” said PWN’s co-executive director, Naina Khanna. “And, there remains much work to be done to craft a federal response that fully upholds the health, rights and dignity of the estimated 1.2 million people living with HIV in the U.S. who will still be here long after the HIV epidemic has ‘ended’, especially in ending harmful HIV surveillance practices and addressing the needs of people living with HIV who are aging. We look forward to working with ONAP and federal agencies as the implementation plan is strengthened and iterated over the next three years.”
Measuring quality of life is not the same thing as improving quality of life.
We want to see an implementation plan that goes further than identifying opportunities over the next three years; people living with HIV need concrete actions backed by significant investments in funding that further the HIV Caucus’ recommendations in Demanding Better: An HIV Federal Agenda by People Living with HIV. This includes, and is not limited to, ensuring meaningful ongoing partnership with PLHIV networks, furthering the sexual and reproductive health and rights of people living with HIV, supporting the health, safety and dignity of LGBTQIA+ communities, ending the criminalization of HIV, sex work, and substance use as well as nonconsensual and dangerous surveillance practices like molecular HIV surveillance, and ensuring that we attend specifically to the quality of life needs of people living with HIV who are aging.
We commend the tremendous work of the Quality of Life federal working group and the White House Office of National AIDS Policy and look forward to a robust partnership focused on substantive and sustained improvement in the material conditions faced by Black, Indigenous, and People of Color, especially queer and trans people, living with HIV in the United States.
