Hear from the man whose bone marrow transplant kept HIV in remission for nearly a year
Three years ago, J (name withheld), a 55-year old man living with HIV from Minnesota, received a difficult and surprising diagnosis from his doctors. They informed him he had acute lymphoblastic leukemia, a cancer that affects white blood cells, and that he would need a bone marrow transplant and chemotherapy for treatment.
After a course of chemotherapy and a stem cell bone marrow transplant from one of his brothers, J decided to participate in HIV research to test whether the transplant had any effect on his HIV. (Timothy Ray Brown, the “Berlin Patient,” was cured of HIV after a bone marrow transplant to treat leukemia.) Although J didn’t receive a bone marrow transplant from a donor with a CCR5-delta-32 mutation (which is thought to be the cause of Timothy Ray Brown’s cure), what happened to J after he stopped his HIV medications surprised his doctors and J himself.
J’s viral load stayed suppressed, for nearly 10 months, after the transplant. Doctors couldn’t find any evidence of HIV in his body. J began to think he might be cured of HIV after about six months of being off his antiretroviral therapy. J did eventually go back on HIV medications after his viral load rebounded, but researchers believe the cancer treatment reduced the size of his viral reservoir.
J’s case was presented by researchers at the most recent Conference on Retroviruses and Opportunistic Infections, and was covered by POZ and AIDSmap (Read Liz Highleyman’s coverage of the research here). Recently, he spoke with BETA about how he arrived at the decision to stop taking HIV medications after the transplant, what it was like to have his blood studied by researchers across the U.S., and how he felt when he found out he might have been cured of HIV.
Can you tell me a little bit about your background, and when you were diagnosed with HIV?
My partner at the time and I believe that we seroconverted in either 1982 or 1984. We had sex with another couple, and my partner and I got sick. We had flu-like symptoms that lasted for a really long time—maybe two or three weeks. At the time, there was nothing that could be done about it, so we chose to try to escape it. Emotionally, we escaped the disease for a while. The official diagnosis came in 1990.
I had my first viral load test in I think 1993. At the time, my viral load—and I hadn’t had any meds at all—was 400. I suspect that at that time I had been positive for close to 10 years. I remember at the time my doctor said, “I think you’re going to be one of the lucky ones. HIV probably won’t be the cause of your death.”
A few years ago you were diagnosed with cancer. Can you tell us what happened when you found out?
I got cancer about four years ago around this time. I remember being at work and not feeling well. I got up, and walked to the printer and I almost passed out. I was feeling lightheaded and dizzy for about a week or so. I thought I had a heart problem. I went to the ER, and they said your heart is fine, but we’re seeing a difference in your blood work from when you were in urgent care three weeks prior. I went into the hospital immediately. They did a bone marrow biopsy and found out that I had leukemia, and determined that it was ALL (acute lymphoblastic leukemia). The fact that I had HIV made it more difficult—my oncologist at the time wanted me to go to the University of Minnesota and they wouldn’t take me on. My doctor set me up with Mayo Clinic.
You received a bone marrow transplant to treat your cancer. Did you know at the time of the transplant that this might have an effect on your HIV?
Even before I started treatment I knew about Timothy Brown [the Berlin Patient] and I also heard about the Boston Patients. And I knew that a bone marrow transplant was how Timothy Brown was cured of HIV. So I looked for the silver lining. I talked about it with my doctors, but I was also aware that one of the reasons Timothy Brown went to Berlin was because someone who could identify a sample with a CCR5 mutation was there. I heard that he got at least three—and maybe four—transplants. In my case, the donor was a family member—my older brother who was a match.
I’m guessing you were more worried about getting cured from cancer at the time than the effect the treatment might have on your HIV. What made you decide to stop your antiretrovirals to see if your HIV might be in remission?
The leukemia I had was much more aggressive and threatening to my life [than HIV]. I felt like anything that might happen after the transplant with HIV would be a bonus.
I had one bone marrow transplant and during that time stayed on my HIV meds. Shortly before and shortly after the transplant I had a viral load of about 25. They [my doctors] presented me with the idea of stopping my HIV meds even before my stem cell transplant, but it wasn’t until about two and a half years later that I decided to stop my HIV medications. I stopped my meds on World AIDS Day, 2015.
After I went off my medications, I had my viral load tested every two weeks for the first 12 weeks.
Were you surprised that your viral load stayed undetectable even without HIV medications?
Once we reached six months of me not being on meds, without a viral load rebound, I was starting to believe I might be cured. Up until that point I didn’t think it would be possible.
They looked everywhere for places in my body where they thought the virus could be hiding. They did a colonoscopy, they took several tissue samples from deep inside my colon and intestines. They didn’t find virus there.
I had my viral load tested in September, about ten months after I went off my HIV meds, and my viral load was about 300. Hearing that felt like I had been punched in the gut. I went from feeling like nothing special was going to happen, to getting my hopes up at the six month mark, to being pretty disappointed. I had to keep telling myself over and over again, “you’re cured from leukemia.”
Your case was presented at one of the largest HIV conferences in the country this year. Did you know ahead of time that this would happen, and how did it make you feel?
I knew they were going to present my case after my viral load came back. I knew there was going to be a poster, but I didn’t know what it was going to say. I looked it up after the conference was over, and I also read the articles that were published about the research.
At one point, I felt like this research may benefit me if it led to a cure. But realistically, all it ever would be about is contributing to a cure or a treatment for other people. I know there’s been a ton of data collected from my blood and everything that may be used for quite some time. I know that I’ve made the contribution, and that’s what I’m happy about.
Are you hopeful that the research you contributed to will lead to an HIV cure? Or at least a better understanding of HIV?
I lost all of my friends in the ‘80s. I watched so many people die. I was trying to run away from HIV. I just lost so much. I have a younger partner now, and I don’t know that he fully appreciates just how devastating it was. I saw it devastate our community. It’s so different now. I remember friends who were healthy one day, and two weeks later they were sick and in the hospital and then they passed.
I’ve met so many people who are in research who are brilliant and who really do care. I am hopeful that I’ll see the day when there is a cure for HIV. It’s long overdue.