NBC News reported this week that President Donald Trump’s administration is thinking about getting rid of the Center for Disease Control and Prevention’s division that focuses on HIV prevention and giving those responsibilities to the Department of Health and Human Services. There’s apparently another potential plan, a source told NBC News, that would cut up to $700 million from the CDC’s HIV division.
As a person who was diagnosed with HIV and AIDS in 2006, I’m dreading what comes next.
As a person who was diagnosed with HIV and AIDS in 2006, I’m dreading what comes next. Just how far will any of this go or end? When I was diagnosed, I was prescribed antiretrovirals, and, within months, my viral load dropped to undetectable levels. The virus has remained undetectable since then, and I am now healthy and thriving. I’ve come a long way from the opportunistic infections I was constantly dealing with at the time of my diagnosis.
Then, I was barely insured and terrified that I might never recover. Within months, my insurer rescinded my health insurance policy. How was I going to pay out of pocket for the costly medications I needed to keep me alive?
I soon learned about the Ryan White Comprehensive AIDS Resources Emergency (CARE) Act. It provides HIV primary care, treatment and supportive services for low-income people living with HIV. The law provides a safety net that covers the copays for my HIV prescription, which would otherwise cost about $4,000 a month. This is stabilizing for my physical and mental health.
People living with HIV work very hard to suppress the virus so that it cannot be detected in our blood because if the virus is undetectable, then it is “untransmittable.” That is, it cannot be passed on to others through sex. In short, treatment is everything, and treatment is prevention.
Knowing we cannot expose our partners to HIV and pose no threat to others is affirming and liberating. It allows us to safely have pleasurable relationships with others and make babies.
The Trump administration has already worked to eliminate USAID and hamper PEPFAR (President Emergency Plan for AIDS Relief), which is credited with saving more than 26 million lives in 55 countries since its creation in 2003. Now, the CDC may be eliminating funding for HIV prevention or incorporating it into HHS’s Ryan White program. I and others in my community are nervous for the future of HIV treatment and the future of HIV prevention.
Treatment is everything, and treatment is prevention.
State and local health departments and community-based nonprofits depend on the CDC’s HIV division for HIV testing, HIV education, funding for the pre-exposure prophylaxis, or PrEP, funding and technical support in public health efforts. Removing funding for this could potentially fuel new cases. PrEP, when used correctly, can stop someone from acquiring HIV during intimate encounters.
Shoehorning HIV prevention services into the Ryan White HIV/AIDS program, which provides HIV care, could overburden the program. Resources to serve the 1.2 million people living with HIV in the U.S. are already stretched thin. Resources can be even scarcer in the Deep South, especially in its rural and urban areas.
At the same time, House Republicans seem bent on slashing Medicaid.
Many low-income or disabled people living with HIV depend on Medicaid for health care.
I am more concerned than ever about the unraveling of safety nets that wrap around not only people living with HIV but anyone with a chronic health condition. Some days, everything seems under threat.
Trump’s flurry of executive orders against DEI pose a particular danger to people like me, a Black person and member of the LGBTQ community. Many HIV prevention and treatment programs focus on LGBTQ people (sometimes trans people in particular), Black people and women. These programs for treatment and prevention may not be in alignment with Trump’s anti-DEI agenda.
Until this week, there was not a lot of talk from leaders in the HIV-positive community about preparing people living with HIV for potential service interruptions. In their defense, they didn’t have a crystal ball to predict this, and they have received no guidance from federal funding agencies. Nevertheless, that failure to plan or consider contingencies does not help clients or patients sleep better at night.
We can see from PEPFAR the consequences of reduced services or zero funding. Millions of lives are affected and rationing of medication and care has started in Africa.
When might we need to start to rationing medication or care in the U.S.? I could probably last a couple of months but what then? Being undetectable and healthy is great. We’re living long lives now and getting old.
Too many have fought hard to get the science where it is and to get the funding where it is.
Even though I am trying to remain hopeful that any reshuffling of the CDC or Ryan White will be minimal, I realize hope is not a strategy. Too many have fought hard to get the science where it is and to get the funding where it is.
Last year, I traveled to the southwest corner of France and noticed that many of the road signs were turned upside down. I was told farmers did that to protest government policies they opposed.
It seems to me that now’s the time to turn some things upside down in this country and fight back. We cannot let Trump make HIV a fatal disease again.