The rare story of the man who was cured of leukemia and HIV – 07/31/2023 – Health

For the German Marc Franke, 54 years old, the first blow came in 2008, when he was informed that he was seropositive for the AIDS virus – a diagnosis that “destroyed his world”.

“I always used protection, but apparently, once I didn’t use it, and it got to me,” he tells DW at his residence in the state of North Rhine-Westphalia.

Luckily, carrying the human immunodeficiency virus (HIV) is no longer the death sentence it used to be. After decades of medical progress, the life expectancy of patients receiving antiretroviral therapy (ART) is comparable to that of those who are not infected.

Three years later, however, at the age of 42, Franke began to feel ill again. He thought it was pneumonia. But after a few days in the hospital, the second blow came: he suffered from acute myeloid leukemia. And at an abnormally early age, as this form of cancer usually manifests itself, on average, around the age of 69.

“Power of Love” Amidst Bad Luck

But beyond the devastating diagnosis, this hospitalization in 2011 would change Franke’s life for another reason: there he met her current husband, Ingo, a professor from Düsseldorf.

“We chatted online and he came to visit me. He didn’t care about HIV, or my blood problem, or my illness: he cared about me as a human being.”

The prospect of a future relationship with Ingo—the “power of love,” as Franke puts it—provided her spirits throughout that winter, despite her dual diagnosis.

“I had to look good when Ingo came to see me. With HIV and chemotherapy for leukemia, the doctors kept saying, ‘Marc, you must be feeling awful.’ But I wasn’t: I knew I wanted to live with him, and that’s what got me through the whole thing.”

Franke improved after the therapy, but had a relapse in August 2012. Leukemia had begun to aggressively spread through his body, leaving only one treatment option: stem cell transplantation.

This invasive procedure is only recommended in cases of fatal cancer, from patients who do not respond to chemotherapy. Doctors were eager to try it on Franke.

They knew that in certain cases – where, due to a specific genetic mutation, bone marrow stem cell donors lack the CCR5-Delta 32 receptor – HIV-positive people had been “cured”, and they wanted to see if the same would happen. with your patient.

The “Düsseldorf patient”

Carriers of the CCR5-Delta 32 mutation are essentially immune to AIDS, since, in order to live in cells, HIV needs to couple to the receptor, which in this case is absent.

Timothy Ray Brown, known as the “Berlin patient”, was the first individual to free himself from the virus through this method, his recovery was reported in 2008. In 2019, the “London patient” Adam Castillejo became the second. Two others are considered “possibly” reinstated.

Doctors began looking for a donor who had the genetic mutation, and luckily they found one quickly: former flight attendant Anja Prause, also from North Rhine-Westphalia. The intervention took place in February 2013 and would eventually cure Franke of HIV infection. But it took years before it was confirmed that the process was successful in the “Düsseldorf patient”.

In stem cell transplants in people with leukemia, chemotherapy first essentially wipes out the old immune system. Then the stem cells are inserted into the bloodstream. If everything goes well, they reach the medulla, which starts to produce new modified leukocytes.

It is a high-risk procedure, resulting in death in 15% of cases. Therefore, it is only offered to patients who would not survive without a transplant. People with HIV who do not have cancer are not eligible.

“There is a very high risk of infections, bleeding and so on”, explains Björn Jensen, Franke’s doctor. “That’s why the death rate is so high, and you can’t use the therapy for non-lethal illnesses. Even if patients were willing to take the risk, it’s simply unethical, from a doctor’s point of view, to expose someone to 15 % probability of death, when there is combined antiretroviral therapy.”

Genetic modification, the possible alternative

With the near ubiquity in the industrialized world of ARTs which, if taken every day, can virtually neutralize HIV, one might ask whether, at this point, a cure for the virus is worthwhile. Interviews with HIV carriers indicate that yes.

“I have been living with HIV for the last 15 years,” reveals Patrick McGregor from South Africa. “Finding a cure, I think, will be imperative to avoid unnecessary deaths of our brothers and sisters. Because HIV still kills a lot of people, especially in our country and in my province. Many of my comrades stopped following the treatment, and ended up dying .”

Studies show that 25% of people with HIV worldwide do not take antiretroviral drugs due to lack of access. Others just forget to take the pills daily, which can lead to complications. So, since transplants will never be a cure on a large scale, ways to defeat HIV without neutralizing the entire immune system are being investigated. An alternative is genetic modification of CCR5 receptors.

Monique Nijhuis researches anti-HIV therapies at the University of Utrecht, Netherlands, where she supervises patients undergoing procedures such as Marc Franke’s. She claims that science already has what is needed to “cure” the human immunodeficiency virus in the laboratory.

“I can easily cure HIV-infected cells using different techniques. The fact is, we have to translate this into an HIV-positive individual so as not to harm them.”

Although genetic modification is not as risky as stem cell transplants, to be able to apply it in the population it would be necessary to ensure that the “genetic scissors” used only cut CCR5 out, and nothing else.

“I’m not really one hundred percent sure that these scissors, which we’ve trained so hard in the lab to recognize CCR5, won’t also mistakenly recognize something else, because it would be harmful if they reacted against CCR2 or any other chemokine receptor.”

At the moment, research centers such as Tulane University, in New Orleans, USA, and the company American Gene Technologies, which is about to publish phase one clinical tests on human beings, are dedicated to this search.

Franke finds her donor

Two years after receiving the transplant, Marc Franke found Anja Prause. She initiated contact by letter, having been informed by the doctors that everything went well with the procedure.

“Hi, from what I hear, you’re doing better (I guess I can use the informal pronoun here, we’re almost family). my transplanted cells. I think about you a lot. I close my eyes for a little while and hope to hear from you soon that you are OK. With love, with all my heart.”

A few years later, in 2018, Franke discontinued his antiretroviral therapy, under medical supervision. She first had to be tested for HIV twice a week, now only every two months.

“When Dr. Jensen is called a healer, he is still very wary of the term ‘cure,'” comments Franke. “But when he writes an article in Nature Medicine about how I was cured of HIV, I don’t think I need any more proof.”