You're not going to die.
The good news is you're not going to die.
Many years ago, those were the opening two sentences of my first public blog about living with HIV. I talked about the intersections of being HIV positive, a nurse and navigating a new life process. In it I asked a very poignant question I had asked myself several times: Who the hell lives a fulfilling life worrying about not dying?
I'm still in nursing. I'm still caring for others, but there is more of an advocacy focus these days. I lean into building bridges and fostering understanding about what HIV is and isn't. My intersections have branched into other aspects: womanhood, my Blackness, aging, menopause and HIV, research and what a cure could look like or might be. I made a deliberate point as a nurse and advocate not to tell people they weren't going to die, but instead to remind them to live. To live life despite HIV. I've learned to thrive with and because of my diagnosis. Yet, I find myself back full circle. Worrying about dying and HIV. Or rather, once again worrying about how not to die while navigating life with HIV. Unlike all those years ago, my questions aren't about naming my condition or trying to be so busy I don't have time to worry about the act of not dying.
These days I worry about medication access in both abstract and tangible ways for myself and those I care for. Policy changes, loss of funding, loss of research, and at its base, the loss of compassion from people with decision-making power mean the next six, nine, or twelve months could mean we lose access to medications we know keep us alive and healthy. I know this projection is a very U.S.-centric view given we are already seeing this on a global scale. We are already seeing the loss of tools and access for the prevention of HIV which means numbers will be on the rise, even as the data and those numbers are hidden from the public through erased and manipulated website purges.
My insurance, and that of millions of other Americans is purchased through the Affordable Care Act (the Marketplace or Obamacare as its also known) and changes to that mean we will be paying more next year and the years to come.
I received the enrollment paperwork today for my insurance for 2026. Without the tax credits that are set to expire in December, my insurance per month will rise by close to $4,000 a year. Add vision and dental, and it goes up over that mark. That's a black and white number crunch, and examples like mine, or with greater increases can be seen all over the internet. That doesn't include office visits, tests, co-pays and medications. The cost of living is also climbing up. Groceries, household goods, utilities and transportation costs are steadily rising. Together, these circumstances create an unsustainable financial crunch for people, especially the most vulnerable among us. As a woman who has been living well with HIV for many years, healthy and undetectable, I try not think of myself as vulnerable. I do not associate with victimhood. Yet, in these moments, the victimization of a careless Congress and presidential administration may leave me vulnerable with an inability to pay for medical care and manage my disease. At that start of the epidemic, AIDS was a terrifying diagnosis underscored by the reality of death. Medication advancements have made HIV a manageable and preventable chronic illness. People can live full life spans, often with better health outcomes than in previous years. Except that is now under threat.
I'm fully forearmed, forewarned and educated on the "what if's" and "what could happen" because we have clear history and lessons to look upon. Opportunistic infections, the rise of stigma and fear and shame may become commonplace again. An increase in AIDS diagnoses and, ultimately, a return to unnecessary deaths. This may sound dramatic or over the top. Even to me it feels a bit like a boy crying wolf with all the medications and knowledge at our fingertips. Federal programs and medication assistance programs exist—but for how much longer? And what about people whose income means they make (just barely) too much to qualify for federal assistance, but not enough for private insurance? Will we see a return to denials for pre-existing conditions? Just 10 short months ago, no one would have thought a bill would be passed to gut medical coverage for millions of Americans. I can't help but wonder if in the blink of another 10 months "you're not going to die" is still going to be the outlook we give the newly diagnosed.
This blog was originally posted on Positively Aware
