The views and opinions expressed in this piece are the author’s and do not necessarily represent the position of Positive Women’s Network – USA.

My pill box sits empty on my shiny kitchen counter. It’s not the first time in my HIV positive life I’ve imagined or actually gone without one or more of my medications. I was on three HIV meds daily back then, they were $25 a bottle for refills which were unaffordable depending on when they needed to be refilled vs when payday was. Back in Seattle when I was newly diagnosed, my friend Sean and I often shared Truvada and Zofran. But today, years later I’m more worried about cardiology medications I’ve been on since my heart attack in 2017.

Only weeks after my new position at the Health Department began, I missed my new hire medical insurance enrollment sign up deadline. Congratulations, my new job came with more income, so now my paychecks are more than my rent, woo-hoo. My new position as an HIV Program Support Specialist began around the same time that my HIV Policy Fellowship with Positive Women’s Network started. Unfortunately, soon after I got a message

from my Ryan White Case Manager that he had to break up with me because the Fellowship was a paid position, it made me over income. I then began searching through Obama Care Plans, or the Affordable Care Act plan prices proved affordable, so far.

“Have you thought about stepping away from the Policy Fellowship so you could still qualify for Ryan White?” A new co-worker asked me. No, I have not. I need the additional income to afford to live. America is not price-friendly for people who live on their own. It’s emotionally hazardous and anxiety spirals into disassociation, detachment and denial.

In the silence of being a FaceTime mom and no longer a care-giver at home, I filled the quiet space with HIV Zoom communities. Almost every night another vibe, yet the same internal bond leads different faces to unimaginable places together as the sun goes down. The more I know, the more I know… Everyday people like us are having their meds taken away. Across the country clinics are already closing, in some areas already, case workers are being let go. 

Dovato, Metoprolol, Atorvastatin, Lisinopril, Baby aspirin, Vitamin D.

Tom, Butch and Harry are the names on the bottles of extra or old un-needed meds from their medicine cabinets. I met two of them in real life last year at the 26th Annual Positive Living Conference hosted by OASIS Florida and held at the Island Resort at Ft. Walton Beach, Florida, where I was welcomed to their dinner table in a sea of mostly strangers’ faces at my first experience at an HIV Conference. 

Positive Women’s Network sent me to Positive Living as well as the other State Leads from last year’s cohort as part of our graduation. Other than a handful of women among a crowd of 500 at this conference, the men from our Thursday night writing Zoom group quickly took me in, saving me seats at crowded meals, or inside conference rooms before presentations began, and offering pointers. Mike Helman, in a fatherly way, insisted on driving me back to the airport on Sunday, and not letting me Uber there after learning my previous ride to the hotel was $65. My only natural thought was Mamma Mia. I’ve been a theatre girl since middle school, and now to be on a breathtaking beach, surrounded by beautiful, gay, positive men. Obviously I was in my own Mamma Mia movie! My dad died the year I was diagnosed, so it seemed comically only natural to be sharing cardiology medications with some of my Mamma Mia Dads who are in their 70’s and 80’s.

The Thursday nights I have free are often spent in Zooms with my friends from Honoring our Experience; they are often my favorite night of the week. We connect emotionally, creatively, poetically, and politically. They are spiritually enhancing, as creative writing is therapeutically, soulfully beneficial– almost more than the pharmaceutical reason most of us are connected.  This group has come with the perks of building relationships strong enough for people across the country to go into their medicine cabinets and mail me bottles of prescriptions they no longer need after their reaction and shock to me suggesting a medical holiday due to being temporarily priced out of Ryan White and not-yet on my Obama Care plan. Ending the HIV Epidemic or EHE funds will currently help cover HIV medication co-pays, ID doctor co-pays and for HIV blood labs. None of that includes mine or anyone else’s cardiology medications. 

With a stress-induced heart attack in my recent medical history, perhaps when the current administration is ramping up my internal stress, maybe a medical holiday is not beneficial no matter how financially helpful skipping a few months of medications might have been. I’m thankful for this group beyond the ones whose names are on these excess pill bottles lining my med cabinet shelves, knowing that one day I might need them when these ACA premiums go up.

My Mamma Mia dads help patch pieces of my heart up with words on poetry night. HIV positive poetry, vulnerability hippies from the 60’s inspire me, transform, collaborate and creatively transition. Reminding me of my 12th grade poetry class, but all wanting to be in the room. Patchworks of people and positive groups, their importance now more vital than ever. Emotionally, these men and a handful of women have been so impactful, amazing, awe-inspiring. Most Thursdays they are my sanity after HIV Caucus’ and Policy Zooms so deep and politically heavy. In this Zoom circle full of poetry and pills, I find my real life prescription.