Pill fatigue

Pill fatigue is real, and the reasons for it can be complex. HIV drugs are generally less toxic today than they were 35 years ago, but we’re still learning about the long-term effects of taking these medications. Any drug can be difficult to tolerate, especially when taking other medications.

In the U.S., more than half the people living with HIV are over 50 years old, their aging exacerbated by the virus and the medications to control it. Housing insecurity is a factor for people with unstable or unsafe living situations. Substance use can lead someone into believing that they’re “fine” and don’t need their HIV meds. And though there are programs to help cover the cost, the inability to afford those drugs can tip the balance.

It can be overwhelming, whether you’ve been living with HIV/AIDS for decades or are newly diagnosed.

Shekinah Rose has lived with HIV/AIDS since 1985. She’s taken many different types of antiretroviral medications over the years and has been on Cabenuva since 2022. The toxic side effects of the first drugs she was prescribed made staying adherent unsustainable, leading her in 2001 to take a “structured treatment interruption,” she said.

In the U.S., more than half the people living with HIV are over 50 years old, their aging exacerbated by the virus and the medications to control it. Housing insecurity is a factor for people with unstable or unsafe living situations. Substance use can lead someone into believing that they’re “fine” and don’t need their HIV meds. And though there are programs to help cover the cost, the inability to afford those drugs can tip the balance.

It can be overwhelming, whether you’ve been living with HIV/AIDS for decades or are newly diagnosed.

Shekinah Rose has lived with HIV/AIDS since 1985. She’s taken many different types of antiretroviral medications over the years and has been on Cabenuva since 2022. The toxic side effects of the first drugs she was prescribed made staying adherent unsustainable, leading her in 2001 to take a “structured treatment interruption,” she said.

“Risk-to-benefit ratio always comes to mind. I believed that if I was so unwell and my labs reflected that, it didn’t make sense to stay on something that could affect my well-being, so I stopped,” Rose said “Eventually I restarted, my CD4 count went up and my viral load decreased. I was living with AIDS since 2007. I lived with chronic pain from polyneuropathies bilaterally [a diffuse peripheral nerve disorder that usually occurs symmetrically, on both sides of the body] from the hips down. I had received a clinical marker from spinal tap for multiple sclerosis (MS). It matched up with all the clinical symptoms I was experiencing, so I made the decision to go into hospice, no longer able to live with my complex medical conditions of living with HIV/AIDS, plus potential MS, along with mental health challenges.”

What changed her mind was that the science had changed, showing that structured drug interruption was not helpful and potentially harmful. “So I went back on my ARVs [antiretrovirals]. I got better physically while in hospice and made a decision to restart them,” she said.

Masonia Traylor has gone off her HIV meds multiple times since being diagnosed in 2011. Why?

“Transition to a new provider during lapse in coverage, depression, fear,” she said. “The longest time period was two years. I wanted to see how my body would respond. I had no insurance. I was only prescribed meds because I was pregnant. Maybe I was a slow progressor.”

When her viral load was no longer undetectable, and her T cell count dropped to 445, the same level as when she was first diagnosed, she went back on, and her T cell counts increased to the 800s. How does she now avoid going off meds again?

“I create a routine and check in with friends living with HIV for accountability,” she said. “One friend, Lynette Trawick, has a campaign called Medication Motivation. It helps because we take our meds together. I also have others that check in periodically. I find others in the community who will share extra pills, grab samples, skipped doses to have extra just in case…

I guess I am very resourceful.”

For anyone considering going off their meds, Traylor said, “Do not play with being on and off. Choose what works best for you and talk to someone before you decide to go off.”

A 2021 report, Real-World Adherence to Antiretroviral Therapy Among HIV-1 Patients Across the United States (by lead author Grace McComsey and colleagues), surveyed 206,474 people with HIV in the U.S., averaging 47.9 years old age. Sponsored by Janssen Scientific Affairs, LLC, it found that the average adherence to antiretroviral therapy was approximately 74%. It also reported 14.8% of participants lived with depression, and another 11.3% with anxiety. A previous study, conducted 2015–2017, found an average adherence rate of 72%.

How do you strike that delicate balance between requiring adherence to a treatment regimen and respecting an individual’s right to make their own decisions? More importantly, how do we ensure that everyone with HIV has the best chance to be a long-term survivor?

The sense of community forged by necessity in the fires of the early days of HIV/AIDS is needed more than ever. The COVID pandemic shutdown made loneliness and isolation part of the national conversation for a while, but these challenges persist in the HIV/AIDS community. There’s still work to be done. And though it may seem daunting, there’s a lot one person can do. Rose has very specific suggestions.

“Spend time with that person,” she says. “Use active listening to understand what they may be experiencing. Support the person where they’re at. As a long-term survivor, I know how hard it is. I had to learn and develop new ways of thinking and to change my mindset…Allow for a person to be heard. Being and feeling heard can create the first step to changing someone’s mindset. Check in with the person to see how they’re doing. Offer suggestions. Empower others to be the drivers of their own self-care and become proactive in their health again. It’s all a process and can take time.”

Long-term survivor and New York HIV advocate Sean McKenna has a clear idea of what people living with HIV/AIDS need most:

“I’ll say it over and over again—support. Social support.”

Those suggestions sound suspiciously like “be a good friend.” That’s not surprising. What better way to combat isolation and depression than creating and maintaining strong friendships and social connections?

Reach out to those who have gone silent; reach out more than once. Meet for coffee, or just hang out together. Be someone your friend can trust when they feel emotionally and physically exhausted. Learn to recognize the signs of struggle, even in individuals who give Oscar-worthy performances every day to convince the world that they’re “fine.” These suggestions may sound trivial, or not grand enough to make a difference, but making friendship a priority in your life benefits all of us.

One friendship at a time. That’s how to create the kind of community people living with HIV/AIDS need and deserve. And in an era of treatment as prevention and “undetectable equals untransmittable” (U=U), it is a strategy that can help bring an end to HIV. 

Read the report, Real-World Adherence to Antiretroviral Therapy Among HIV-1 Patients Across the United States at bit.ly/2021-adherence-report.

VICTORIA NOE is an award-winning author, speaker and activist. Her writing career began by fulfilling a promise made to a dying friend: the Friend Grief series. In 2019, her long-time HIV/AIDS activism led her to write F*g Hags, Divas and Moms: The Legacy of Straight Women in the AIDS Community, honoring women at the height of the AIDS epidemic. Her latest book, What Our Friends Left Behind: Grief and Laughter in a Pandemic, shares challenges of people who grieved the loss of a friend during COVID. More at victorianoe.com.