My name is Marc Franke. I’m 55 years old. I’m the “Düsseldorf Patient” described in the Nature Medicine March 2023 article where my case was presented 10 years after a stem cell transplant—the most-reviewed case of the handful of people who have been cured of HIV. I think that's significant. Of all the people who have been cured, I have survived the longest after stem cell transplantation. I am currently in my twelfth year.
I was diagnosed with HIV in 2008. At the time, antiretroviral treatment (ART) was not immediately started in Germany, where I live. As I was diagnosed early (not more than three months after acquiring HIV), it was two and a half years before I started treatment with ART. A few months after starting ART, I was diagnosed with pneumonia in January 2011 and then with acute myeloid leukemia (AML). Doctors suggested I immediately start chemotherapy. After seven months of treatment, I went to physical rehab. By the end of the year, I started working and everything seemed fine.
In October 2011, I had a relapse of AML. My doctors said a second round of chemo would not work, and that I needed a stem cell transplant. They searched for possible donors and found several potential matches, then asked if I would like to try the same treatment that was given to Timothy Ray Brown, the “Berlin Patient” [the first person to be cured of HIV]. I saw a documentary about Timothy and thought, If this worked before, why wouldn’t it work for me? The blood samples from possible donors had to be re-scheduled to look for the [CCR5-delta32] gene mutation, the same mutation involved in Timothy’s case. That took extra time, about four months. In five possible donors, doctors found one with the gene mutation. Knowing that the gene mutation is present in 1 percent of the Caucasian population, it was very lucky to find the match among just five donors and not among the statistical 100.
Thomas J. Villa: Marc, thank you for sharing your story as the conclusion to our year-long series, Partners in Research, presenting the personal experiences of participants in HIV cure-related clinical trials. I’m especially excited because your experience shows that steady progress is being made toward successful cure strategies. I’m awestruck by the adversity you overcame during various treatments and by your humility in speaking about it. I’d like to ask a few more questions about your journey.
How did you feel while waiting without knowing if doctors would find a donor?
Marc Franke: I had two more mild chemotherapy treatments while we waited and thought the transplant might work like the chemo. The preparation was similar. I didn't think much about it because all the chemo went well for me.
It was after the transplant that so many things went wrong. After transplant, 100% of your immune cells should be replaced by donor cells. Unfortunately, after half a year it was found that 30% of my own immune cells were detectable in my blood again. With a special treatment plus the administration of T cells from my donor, my cells were cleared. Everything was fine after that. I learned later that this approach works for few patients. I was lucky that it worked for me.
I then had problems with my liver and had to take cortisol. The cortisol gave me diabetes so I had to start injecting insulin. Six months later, I fell in the hospital, broke my hip and had to get a new hip. Prior treatment with chemotherapy and cortisone had made my bones brittle. All during this time I was taking immune suppression medications because of the transplant, so the researchers couldn’t interrupt my ART yet. After stopping the immune suppression, I immediately got graft versus host disease. I had big problems with dry eyes. About a year after the immune suppression was stopped, we interrupted ART. It was at the end of 2018.
When I see pictures of Timothy [Brown] in the documentary [The Berlin Patient] walking across the street and unpacking his suitcase at the hotel, I can imagine how he felt because I was in a wheelchair or using a walker to get around for weeks and had some bad times. I’m doing well now, but it was a rocky road.
Is there anything that you wish had been done or perhaps done differently?
I was lucky that the doctors learned from Timothy that radiation is not needed for clearing the immune system [to make room for the transplant]. I think Timothy had many problems because of the radiation. So, I was lucky.
Living with HIV was easy compared to being a transplant recipient. Someone who hasn’t gone through it can’t imagine the highs and lows of this procedure. The worst is that you can’t plan your life because with every day, anything can change. Then you go back to the hospital for another treatment. Many of the patients I was in hospital with are not living anymore. With AML, I think 50% live five years after the transplant. My oncologist told me as recently as this month [April] that my chance of surviving the transplant and any complications at the time was less than 10%.
For an HIV cure, this is not the way for everyone. Stem cell transplants should only be done for people with HIV who also have leukemia or another cancer where the procedure is needed. If ART works well for you, I think one pill a day or perhaps long-acting injectable ART plus going to the doctor every three months is easier. If only the stigma didn’t exist.
Well, thankfully things did work for you. Is there anything that would have been helpful to you during that time?
I had the biggest help you can imagine because the power of love guided me through everything. I met my husband Ingo at the end of January 2011, before my AML was diagnosed. We chatted on a gay dating app, and he visited me the next day, then every day. I wanted to get back on my feet so that we could have a normal life together. Now we are married, we built a house and we have our dog Motte, a Hungarian pointing dog [Magyar Viszla]. Everything is fine now. So, if you meet someone and he has no problem with HIV and no problem with cancer, this is your very special someone. I got through all the chemos because I knew there was someone visiting me in the evening, and I had to be prepared.
If ART works well for you, I think one pill a day or perhaps long-acting injectable ART plus going to the doctor every three months is easier. If only the stigma didn’t exist.
That's wonderful! This question is completely optional, whether or not you would like to discuss this: Is there anything that you would share with regard to how you approached sex after you stopped your HIV medication and were not yet sure whether you had been cured?
I have to protect myself because PrEP doesn’t work for me because it would make a very unlikely resurgence of infection not detectable. The CCR5-delta 32 gene mutation only protects me against the most common HIV strain. I can acquire HIV again by a different strain, so I have to protect myself.
Okay, thank you. Is there anything that you would like to have been done differently during this follow-up time that may be helpful to you or to other people going through a similar experience in the future?
I was the second person successfully transplanted with the gene mutation after Timothy. Now there are more cases to compare. After the transplant, I had to take over 40 pills a day. So the one HIV pill, I didn’t care about. I waited so long to stop ART that when my doctor, Dr. Björn-Erik Ole Jensen, told me it was time to stop, I thought he is very sure, and it wasn't a special day for me.
After stopping the pills, we started with HIV tests twice a week. I had to drive more than 100 kilometers [over 60 miles] to the university hospital twice a week. To save travel time, after a few weeks I went to my doctor here in my hometown. I started working again, and I learned to take the blood samples myself to send them to the lab in Cologne. That worked very well. Once a month, I went to the university hospital. Now we take the samples every two months. I think they are really sure that nothing will happen if they stretch the time so much.
And then 10 years after the transplant, Dr. Jensen told me that he's writing an article for Nature Medicine. That was another clue that he is very sure about my HIV cure. So, I decided to go public with my story. I feel very safe with my doctors. If HIV had been detected it would just be a matter of starting to take medication [ART] again and everything will be fine. For me, the great sword of Damocles is leukemia, not HIV. Being cured of HIV is a side effect, a great side effect, but if I hadn’t been lucky enough to be cured of leukemia, I would have gladly continued taking the HIV pills.
With the cancer, I have lost five years of my life. First, because of the chemo, I was out of the office for seven or eight months. Then with the transplant, I was ill for three and a half years. I’m lucky that I can work again, although it’s not easy because I have fatigue. My concentration is not so good. I’m working part-time now, 30 hours a week, and for my severe disability I get five extra days of leave per year.
Are you able to talk about this comfortably with people at work? Do they understand what you’re going through?
That’s the problem, because my colleagues had to work for me during the time I was in hospitals. After I came back, colleagues’ attitudes changed. I don’t think that they can imagine what I went through, the dry eyes and not seeing so well, plus the concentration problems. Other people don’t see that you have problems with your brain because of all the chemo and they think, “Well, he looks normal, so he has to work normal.” It’s hard for them to understand what you have experienced.
I hope that the scientists learn so much from the lymph nodes and tissue samples from my stomach that someday they will be able to recreate the cure without the transplant. If there is someone with HIV who gets leukemia, perhaps they will be able to offer stem cells prepared with the CRISPR Cas9 technique so that the gene mutation can be created via gene therapy.
I was lucky that they searched worldwide for the best laboratory for each different test. The doctors formed a great team over the years, and many of them became my friends. Some of the doctors look at me as their child. It was very inspiring to meet one of the doctors that only knew me as Number 19 in that database. I think it was very inspiring for the doctors to see me and think, “Well, he’s alive. And he’s a great person. And here he is.” They invited me to the labs. I will go to the Netherlands to visit the doctors and their students to inspire them for research.
Other people don’t see that you have problems with your brain because of all the chemo and they think, 'Well, he looks normal, so he has to work normal.'
So you have a global family out of this—new brothers and sisters. How wonderful. That's a really hopeful and inspiring way to look at this.
Oh, yeah, because now the number of persons cured is rising. I was very happy that “The Three Musketeers,” that’s the name of our WhatsApp group—Adam, Paul and I—were on stage together at the Hawai’i to Zero Conference in Honolulu in 2023. I don't want to make a business out of my advocacy. I want to have a little bit of my normal life. But, if someone asks me to join a conference, gala or something similar, I will be glad to be invited. I'm happy that in 2024 the IAS conference will take place in Munich, so it will be easy for me to get there. I will participate in some sessions.
Franke is thankful for his stem cell donor Anna Prause. Without her stem cells, he said, the procedure would never have been possible. In Germany, donors and recipients are allowed to get to know each other. “It was indescribable to stand face-to-face with my genetic twin! We noticed a lot of similarities,” he said.
Franke encourages people to register as stem cell donors and urges support for worldwide HIV cure research.
For more information, GO TO aidsfonds.org/hiv-cure. READ the Nature Medicine March 2023 article at bit.ly/49Pk7b2.
Thomas J. Villa is a writer and serial participant in HIV clinical research. He serves on the ACTG Partner Protections Working Group and is a community advisor to both the HOPE and RID HIV Martin Delaney Collaboratories for HIV Cure Research.
Karine Dubé, DrPH, works at the intersection of biomedical research, socio-behavioral sciences, ethics and patient/community engagement in HIV cure research in the United States and South Africa. She is passionate about centering the voices of patients/participants in HIV cure-related research across the lifespan.