World AIDS Day: Advancing hard fought gains through collective action
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When I first read the theme for this year’s World AIDS Day — Collective Action: Sustain and Accelerate HIV Progress — it seemed perfectly timed for the current state of HIV care in the U.S. Let’s start with the progress mentioned in the theme. There were 31,800 estimated new HIV infections in the U.S. in 2022, a decrease of 12% from 2018. Progress, yes, but we still have a long way to go: In line with UNAIDS goals, the Ending the HIV Epidemic initiative’s goal is to have only 9,300 new HIV infections in the U.S. by 2025 and only 3,000 by 2030.
In many respects, we have everything we need to end the HIV epidemic. We have medications that work and can get individuals with HIV to have an undetectable viral load, which means that we cannot detect the virus in their blood, and they cannot transmit to other individuals, the basis for undetectable = untransmittable.
We have national programs such as the Ryan White HIV/AIDS Program, which serves as a payor of last resort and ensures that even those who may not be able to afford HIV medications can access them. We have excellent prevention methods, including pre-exposure prophylaxis, which is up to 99% effective in preventing HIV; post-exposure prophylaxis; harm reduction; barrier methods including condoms; and increasingly available HIV testing.
So why can’t we meet our goals?
Lessons from the past
Consider the collective action and sustainability elements of this year’s theme. Look to the 1980s to see what collective action accomplished in the face of what seemed like insurmountable odds. Individuals with HIV across the world literally fought for their lives through collective action, civil disobedience, activism and advocacy to make sure that not only were people with HIV cared for but also had access to medications, forever changing the Food and Drug Administration’s approval process in epidemic times.
While these efforts were heroic, they occurred when sodomy was still criminalized in many states, when gay rights were negligible and when President Ronald Reagan refused to utter the letters HIV until 1985, four years after the first reports of HIV circulated in the medical community. Don’t forget that HIV was initially called “gay-related immunodeficiency” and “the 4H disease” for the four groups that were most affected by HIV: Haitians, homosexuals, hemophiliacs and heroin users. This made HIV the disease of the other, a disease affecting a small portion of Americans — but these labels effectively erased a whole generation of LGBTQ+ individuals, among others.
Ongoing health disparities
Today, we continue to see health disparities rise like chasms in our public health response.
Young people; gay, bisexual and other men who have sex with men; transgender individuals; Black, Indigenous and people of color are all disproportionately affected by HIV — all because of past and current neglect by our health care systems, which will only worsen if we do nothing. Only five states mandate comprehensive sex education in schools, meaning we have a whole generation that is growing up not able to make informed decisions about their sexual health or learn about HIV, sexually transmitted infections and sexual well-being.
LGBTQ+ individuals, especially transgender individuals, are actively having their access to health care threatened. Twenty-six states have banned best practice access to gender-affirming care for youth. More than 1 in 5 LGBTQ+ adults have reported postponing or avoiding medical care in the past year due to disrespect or discrimination by providers, including more than 1 in 3 transgender or nonbinary individuals.
Health care deserts persist in BIPOC communities, and intersecting syndemics of STIs, HIV and opioid use persist in these gaps in care. At the same time, STI and HIV-related federal programs have been flat funded and face drastic cuts in new budget proposals. Meanwhile, states are spending less and less on public health, with community programs often completely dependent on federal funding.
How to move forward: What you can do
Nevertheless, we need not despair! There is still much we can do. Join the IDSA and HIVMA Member Advocacy Program today to amplify our voices and urge Congress to pass funding bills for the 2025 fiscal year that are crucial for the future of HIV care. You can also urge Congress to #SaveHIVFunding by signing this petition.
We need additional federal funding to sustainably support communities in need by providing money to programs in communities that can best serve those communities. This includes increasing Ryan White Program funding by $511 million for a total of $3.082 billion, including $231 million for Part C, which supports Ryan White medical clinics nationwide.
We also need:
- $50 million in funding to implement the Bio-Preparedness Workforce Pilot Program to address workforce shortages and make sure every county in the country has an ID/HIV specialist who can care for these patients;
- $100 million to support PrEP as part of an overall increase of $175 million for the Centers for Disease Control and Prevention’s Ending the HIV Epidemic initiative.
The need for collective action
We have the tools we need to succeed, and we have made progress. What we lack is the collective action to right the wrongs of the past and present and the community action required to take care of the most vulnerable and neglected among us.
We must face the fact that our systems are broken and need fixing. The intersecting disparities of race, ethnicity, sex, gender, socioeconomic status and geography can’t be fixed by just throwing money at one problem while neglecting the rest. We need COLLECTIVE ACTION, in all its complexity, bitter truths and all, to serve those most in need and who will continue to be neglected if things don’t change. This World AIDS Day, we must take care of each other and come together as one uniting force to care for individuals with HIV so they can thrive.
Photo: As part of IDSA’s and HIVMA’s 2024 Advocacy Day, Joseph Cherabie, MD, MSc, at left, spoke with staff in congressional offices about the importance of adequately funding federal HIV programs.
