Here’s why I’m afraid—for the very first time in eight years of living with HIV
For the first time in eight years of living with HIV, I’m afraid.
That fear has very little do to with my infection, precisely. The daily task of taking a pill before bed has become a mundane task I no longer think about. I’ve been undetectable for about 7 and a half of the eight years I’ve been living with HIV, and I’m healthier than ever. And in the years since I’ve been living with HIV, the normalization of PrEP and increased information about the effectiveness of treatment as prevention has led to a decrease in HIV stigma in the gay community.
My fear has more to do with the state of our country: the funding cuts that may be in store for programs like Medicaid and the Ryan White program; the threat of repealing key aspects of the Affordable Care Act for people with pre-existing conditions; and the shifting of priorities away from improving the health and wellbeing of all people in our country.
Over the years, I’ve realized how precariously my health is balanced on the access I have to affordable health care. I’ve been taking a simple 1-drug regiment to control my HIV for more than five years. It’s so easy. But I’m a freelancer, and have always struggled to afford my health insurance. On top of that, I’m a bit of a nomad—moving from city to city, which only complicates things further.
There was one time when I almost ran out of medication when I moved from the East to the West Coast. I was waiting for a new health insurance plan to begin coverage, but it wouldn’t take effect for a few months. I still had coverage on the East Coast, but had run out of refills from my physician—and couldn’t get another refill without going in for a doctor’s visit on the other side of the country.
I ended up applying for government-funded healthcare during my gap in coverage. It took so much time and effort, and came with a lot of questions and time waiting. I couldn’t believe how difficult it was to get assistance—especially since I was insured, had new coverage pending, and had been on the same daily regimen for five years!
Thankfully, I had the time and resources to ensure that I was taken care of. But it made me think—what happens to people who don’t have that luxury? Is it any wonder that so many people living with HIV in our country have dropped out of care, aren’t taking antiretrovirals, and aren’t virally suppressed?
This experience made me realize: Falling through the cracks of our broken health care system is so much easier than you can imagine.
With our current President’s plans to reduce funding for PEPFAR and other HIV/AIDS programs, I’m fearful that the system we have in place now will only get worse. He has erased HIV and AIDS as a priority for his administration. His party’s replacement plan for the Affordable Care Act, had it passed, would have caused an enormous amount of harm to many people living with HIV in this country. Although the administration is still in its infancy, those of us affected and infected with HIV should be concerned—especially those of us who don’t have access to employer-based health insurance plans.
It’s so easy for me to feel numb to what’s happening in our country right now. I at times want become a recluse and hibernate for the next four years. But now’s not the time to hide in the shadows. We’ve got to give a voice to our opposition, and encourage others to join our fight as well.
I’ll admit that since election night, I have been overly vocal on social media. At times I’ve been a bit too forceful with my language, but I blame that on my anger and outrage. I’ve since toned down my outcries in hopes that those who read them will take me more seriously, and take the time to actually read what I’m posting or linking to. I’ve reserved my angrier messages for Twitter, where our new President likes to spend a lot of his time. I direct those rants to him and the thousands of random strangers that follow me. It’s like clockwork: I wake up each morning and check to see what Trump’s tweeted and then read all the morning headlines and proceed to tweet out as much as possible.
On Facebook, where my friends and family are, I’m constantly being tagged in any posts relating to the President. Every day, one of my friends privately sends me a link to something they found, probably in hopes that I will post it and or because I’m the first person they think of when they come across something new or funny about the President.
Not a day goes by that I am not posting at least once about something we should all be informed about, and I do my best to always post about ways we can take action and make changes. And it’s not just social media. I’ve made it a habit to email my representatives each time I feel emboldened to do so. And although I don’t have too many extra funds, when I find myself feeling like I’ve exhausted all that I can personally do to fight against this administration, I open my wallet and send money to the organizations I trust in this fight.
To me, being complacent is the most offensive act taken by anyone opposed to the administration. We have to be vocal and continue to take to the streets, the Internet and to our wallets. We all have things we need to be concerned about, whether it’s the environment, national security, immigration, civil rights, or healthcare…to name a few. Those of us living with HIV might be fighting an uphill battle for the next few years, and its time to dust off the memories of past activism and prepare for what’s to come.
David is a nationally recognized HIV advocate and writer who contributes to HIV focused publications including POZ, Plus, Positively Aware and The Body. Additionally, he focuses on travel writing and spends approximately 90% of each month traveling the world on different assignments. To read more of his HIV writing, visit his online portfolio, or follow him on Twitter.
The opinions expressed in this article are those of the author alone. They do not reflect the opinions or positions of BETA or of San Francisco AIDS Foundation. BETA serves as a resource on new developments in HIV prevention and treatment, strategies for living well with HIV, and gay men’s health issues. Our goal is to inform, empower, and inspire conversation.