Long Term HIV/AIDS Management Success
by 26Health Staff
For those of us who have been diagnosed with HIV, there is a path forward. When HIV and AIDS came to light in the early 1980s, the virus was considered a death sentence. But significant scientific advances in AIDS management mean that a long, healthy life is possible.
We had the pleasure of interviewing a long-term survivor, who we’ll call PK. First diagnosed in 1989, he has managed the virus for over thirty years. The key takeaways from his experience? Read on.
✔ Be Willing to Adapt
A growth mindset allows us to navigate the meandering path of the virus. AIDS management can be unpredictable. For PK, an open heart and an open mind have been his guides.
✔ Invest in the Science
Continually learning and taking a deep interest in the science behind long term HIV treatment empowers us to seek out the best treatment, comply with our treatment plans, and deal with HIV from a position of truth and power.
✔ Learn to Cope with Medication Side Effects
Not everyone reacts to medication the same way. Some of us have minor side effects, others more serious. Because life-saving HIV drugs do come with side-effects, accepting and managing them is key.
✔ Embrace a Full Life
For the duration of long term HIV treatment, do we feel that we are deprived of a full life due to HIV, or are we truly living, making plans, and enjoying relationships? For PK, a full life has included establishing a robust support system and being a support to others.
The Story of Medicine is Not the Whole Story
To document PK’s AIDS management healthcare journey is to trace breakthroughs in HIV and AIDS medical treatment. PK was often an early adopter of new therapies and was frequently first in line to try the latest drugs. But just as important, he did not stop living the way he wanted to. His life has been a symphony of travel, art, music, food, and friendship.
Since his diagnosis, PK has been to fifty countries, from Guatemala to Dominica, Kazakhstan to Thailand, New Zealand to Turkey. He has painted many hundreds of paintings. He has worn the grooves of many hundreds of the vinyl albums of classical music he cherishes. His notebooks document the guests he has served and the meals he has prepared for countless dinner parties. And he has said goodbye to more loved ones than he wanted to, who were lost too soon to the virus he has survived.
PK’s HIV and AIDS Healthcare Timeline
In the late 80s, PK had pneumonia three times, and after the third time, his primary care doctor encouraged him to get tested for HIV.
“It was not Pneumocystis pneumonia, just what my doctor called garden-variety pneumonia. I did get tested and diagnosed that year, which was 1989, and looking back I believe I contracted it in 1985.”
Gay Men’s Health Crisis published a biweekly newsletter in the mid-to-late-80’s, covering every new development around HIV and AIDS, which PK read religiously. He took the newsletter with him to doctor appointments to help educate his doctor. Through the newsletter, he learned about AZT but wasn’t ready to take it. Based on what he read and observed amongst his friends, it seemed the drug was so toxic it would seriously diminish his quality of life. For four years after his diagnosis, PK did not get treatment and in 1993 his HIV became AIDS.
“The medical care wasn’t great then. I was living in New York and only two out of their eight doctors at the practice I went to would see HIV patients. Once I had AIDS, I finally went on the AZT monotherapy I had been avoiding. I waited so long because it was highly toxic and I was worried about dealing with the fatigue and diarrhea.”
A world traveler, PK went to Thailand that year with a good friend. After leaving home, he realized he had left his AZT behind.
“My friend reached out to people he knew in Thailand, and someone was able to get me an unopened bottle of AZT within a few days of arriving in Thailand. I was lucky! I’ve traveled a lot since then and I don’t make that mistake anymore.”
In 1994, PK’s doctor told him he had a maximum of 48 months to live because his t-cell count was low.
“She told me the best she knew. At the time, AIDS was a death sentence. I was looking at the end of my life and decided to make the next few years my best years. I retired early and went bi-coastal, spending six weeks at a time in San Francisco and New York, alternating between the two.
In 1995, PK stopped seeing his doctor in New York and switched to a Kaiser practice in San Francisco that worked exclusively with HIV and AIDS patients. An early adopter, PK started taking protease inhibitors.
“My cousin and two of my close friends had just died of AIDS. They didn’t live long enough to try protease inhibitors, which weren’t approved by the FDA before 1995. The side effect that plagued me the most was kidney gravel. Over the next five years, I tried three or four different protease inhibitors.”
In the late 90s, PK’s treatment changed from monotherapy to a cocktail of protease inhibitors and an antiviral called Sustiva for AIDS management.
“I took Sustiva for about two years. I’ll never forget those side effects. Sustiva crosses the blood-brain barrier so the side effects are different from other drugs. If I took it in the morning, I would walk into walls, so instead, I began taking it before bed. But then I did have very vivid dreams. Not nightmares like some people had. All black and white dreams suddenly became technicolor.”
Eventually, PK stopped taking protease inhibitors and switched to a cocktail of Ritonavir and Atripla, and later Ritonavir and Truvada.
“Even though I had to deal with fatigue and gastric distress, these drugs kept me healthy for a long time. By the mid-2000s, the virus finally learned its way around the drugs. My t-cell count was slowly going down and my viral load was going up. In 2016, I had a genotype assay to determine which of the drugs had stopped working. It was Tenofovir, one of the ingredients in Atripla and Truvada. I won’t be prescribed any medication containing Tenofovir again. It was good while it lasted!”
Starting in 2016, PK switched to four medications, including Intelence and Prezista. The side effect of fatigue and gastric distress persisted, yet the four-drug combination was effective.
Since 2019 PK has only been on two medications: Tivicay and Prezcobix. His t-cell count is now in the 900s, the highest it has been since 1991, and his viral load is zero. He is 78 years old and continues to travel, paint, and explore life. He is the sole survivor amongst his group of friends who were diagnosed with HIV in the 80s.
“I do have advice if you have been diagnosed and wish to live a long life. Commit to 100% compliance, almost never missing a dose. If you are normally 100% compliant, and then you go away for a weekend and forget your pills, that’s okay. Your healthcare provider wants you to be compliant in the 95%+ range. What you don’t want to do is take a 2-week medication holiday, as many of my friends did through the years.”
“Accommodate the side effects by being prepared. Gastric distress interrupts you from time to time, so if you are on a long trip, bring Depends. It’s better than not. In 2018 I was on a many-hours bus ride in India. We were listening for howler monkeys to indicate the presence of tigers, which is what we were there to see. I had an embarrassing accident and ended up having to throw away some soiled clothes.”
“Welcome developments in science. If you track your t-cell count and viral load closely, you’ll know when it’s time to switch to the newest medications. At some point, the medication you’ve been on for a while will become ineffective, and that will show up with plummeting t-cell counts and a climbing viral load. Act quickly to get your health in check.”