Interruption of a prescription refill can be a major worry for people living with HIV. POSITIVELY AWARE put the question to its social media followers:

Have you ever had difficulty getting a refill of your HIV meds? If so, what happened and how was it resolved?

Compiled by Rick Guasco

“I had this pharmacy about 10 years ago that was recommended by my HIV clinic. They only did mail order for HIV medications and were always five days late. I switched to another pharmacy in West Hollywood, which I still use today.

“My new pharmacy has been a godsend. The staff are what I like to call my Rescue Rangers. They are never late and always call before they ship anything to me. I have not had a single snafu with them in the last nine years, not a single hiccup. I’d like to give them a shout out: Community Pharmacy, in West Hollywood. They are my superheroes.

“I’m a 38-year thriver with HIV. I was diagnosed on April 18, 1986. As a 23-year-old gay boy, I was told that I had a virus that was going to kill me in six months. I had 19 T cells. Who would have believed that that young man would live to see his 62nd birthday, which is only days from now.”

—Lee Rand

“My problem is that my insurance provider, UHC/Optum, bought The Polyclinic [a physician-owned multi-specialty clinic with several locations in the Seattle area purchased by UHC in 2018] and renewal of scripts has become a nightmare: My pharmacy contacts the clinic, the clinic now routinely ignores these requests until I contact my physician’s office. Every time. This was elevated by supply chain issues. My husband recently went for over a week without his HIV meds because of the runaround at our clinic.”

—Duine Ar Bith

“I’ve not had any problems. Living in the UK, medication is picked up from a hospital pharmacy. I did receive an email regarding people not picking up their medication in good time. This costs the service [England’s national healthcare system, the National Health Service, known as the NHS] money. With a polite reminder for people to pick up their medication or inform the service if they are unable to get it when it is ready. I think they hold it for a week.”

—Mathew Long-Smith

“I had a monster of a problem this week. I was down to five Biktarvy pills. I keep a stash of 10 pills but didn’t think I would ever really need it, so I called my pharmacy and asked why they still hadn’t delivered the refill. They said it was on backorder and they didn’t expect to get any for at least a month. I was livid and asked when they were planning to tell me. I reached out on social media to my HIV community, and they offered a few suggestions. By Thursday I was able to reach my case manager, who found a nearby pharmacy that delivers. I have mobility issues and need a wheelchair to go more than 20 feet. Pharmacies that deliver are a godsend. I tell folks all the time that social media has connected us and other groups of people who would otherwise be alone and have little or no support. Thank you all for being there for me, if only to listen.”

—Rose McCloud

“I was living in a small town and no pharmacy carried Biktarvy when I was diagnosed. I had to wait about to start ARVs and my CD4 count was down to 15. It was scary.”

—Adrian Flint

“Over 10 years ago, my union’s health plan changed our prescription plan (it had always been separate from other health coverage). What they did not say was that HIV meds would now be considered ‘specialty’ and would have to be filled by their own mail-order pharmacy, meaning my local specialty pharmacy could no longer provide them. Of course, I did not find this out until I needed a refill. Fortunately, the administrator of our overall health plan was able to get an exception for me for that one drug that time, but I still needed to get all future fills changed.”

—Jeffrey Franklin Jenne