Marc Franke, a 54-year-old from western Germany, suffered his first blow in 2008 when he learned he had HIV — a diagnosis that “ripped his world apart,” he said.
“I had always used protection, but one time I obviously didn’t and it got to me,” he told DW at his home in the German region of North Rhine-Westphalia. Fortunately, HIV is not the death sentence it used to be. After decades of medical advances, patients who receive antiretroviral therapy (ART) have the same life expectancy as those without infection.
But three years later, when Franke was only 42, he began to feel ill again. He thought he had pneumonia. But days after checking into the hospital, he suffered his second blow: a diagnosis of acute myeloid leukemia at an unusually young age — people are typically diagnosed around age 69.
His hospital stay in 2011 proved life-changing, and not just because it was then that Franke learned he had leukemia. It also marked his first meeting with his future husband, Ingo, a school teacher from Düsseldorf.
“We chatted online and he came to visit,” Franke said. “He didn’t care about HIV. He didn’t care about the problem with my blood. He didn’t care about my disease. He cared about me as a person.”
Franke said the prospect of a future relationship with Ingo — “the power of love,” as he called it — kept him going that winter, despite his dual diagnosis.
“I had to look good when Ingo came to visit,” Franke said. “The doctors said, with HIV and chemotherapy for leukemia, ‘Marc, you must be feeling terrible.’ But I wasn’t. I knew I wanted to live with him, and that’s what got me through it all. “
Relapse brings hope
After undergoing chemotherapy, Franke went into remission, but relapsed just a year later, in August 2012. The leukemia began to spread aggressively in his body, leaving him with few options for treatment. The only option left was a stem cell transplant, an invasive procedure recommended only for some patients with certain types of deadly cancers — like leukemia — that have not responded to chemotherapy.
The doctors were eager to try the treatment on Frank. They knew of other cases where transplants of this kind – using stem cell donations from people with a specific genetic mutation that means they lack what is called the “CCR5-Delta 32 receptor” – had “cured” HIV patients and wanted to see if the same could work for him.
Timothy Ray Brown, who was known as the “Berlin Patient”, was first person to be cured of HIV using this method. His cure was announced in 2008. Adam Castillejo, “The London Patient,” was the second. His cure was announced in 2019. Two others are being considered “possibly” cured of the virus.
People with the CCR5-Delta mutation are essentially immune to HIV because the virus needs to attach to the CCR5 receptor in order to live in the body. Without the receptor, the virus cannot survive.
Doctors began looking for a donor.
Fortunately, they were able to quickly locate one with the mutation – former flight attendant Anja Prause, also from the West German region of North Rhine-Westphalia. The transplant with Prause’s bone marrow took place on Valentine’s Day in February 2013, and would cure Franke of HIV. But it would be years before either of them would find out that it had worked.
Stem cell transplants are not a scalable treatment
Stem cell transplants for leukemia patients like Franke work like this: First, intensive chemotherapy essentially wipes out the patient’s old immune system.
Doctors then facilitate the stem cell transplant by inserting the donor’s cells into the patient’s bloodstream. If all goes well, these cells will find the patient’s bone marrow and begin producing new, altered blood cells.
It’s a high-risk procedure that ends in death up to 15% of the time, doctors say. Because this treatment can only be ethically offered to patients like Franke who need a stem cell transplant to survive, cancer-free HIV patients are not eligible.
“The people have a very high risk of infections, bleeding and so on and so on,” says Björn Jensen, Franke’s doctor. “And that’s why people die from this procedure, and that’s why you can’t just use it for, you know, diseases that aren’t fatal. Even if they would be willing to take that risk, it’s just unethical from a doctor’s point of view. to take a risk of killing someone with a 15% probability when you are on combination antiretroviral therapy.”
How important is a cure?
With the apparent prevalence of antiretroviral therapies in the developed world—which, if taken daily, can more or less nullify a person’s HIV—one wonders if an HIV cure is even worth it at this point.
Interviews with HIV-positive patients show that it is.
“I have been living with HIV for the past 15 years,” Patrick McGregor, an HIV patient from South Africa, told DW. “Finding a cure will be imperative for us to prevent the unnecessary death of our brothers and sisters because HIV is still killing a lot of people, especially in our country and in my province in South Africa. Many of my comrades that I know have defaulted on treatment, and then they end up dying.”
Studies show that globally 25% of people have HIV not taking ART medication because they do not have access to them. This does not include the many who simply forget to take their pills, which can cause complications.
Re-modification a possible solution
So if stem cell transplants will never offer a scalable cure, what will? Doctors are looking at other ways to cure HIV through modifying patients’ CCR5 receptors, proteins on the surface of white blood cells, through genetic modification – without wiping out their entire immune system.
Monique Nijhuis, an HIV cure researcher at the AI System headquarters in Utrecht, Netherlands, who oversees patients who have undergone procedures like Franke’s, said scientists have already successfully facilitated what it takes to “cure ” HIV in laboratory settings.
“I can very easily cure cells infected with HIV using these different techniques,” she told DW. “The thing is, we have to translate this to an individual with HIV in a way that doesn’t harm the individual with HIV.”
Although genetic modification is not as risky as stem cell transplants, to offer the therapy at a population level, researchers must ensure that the “scissors” involved in the therapy only cut out the intended receptor, CCR5, and nothing else. , Nijhuis said.
“I’m not really 100% sure that these scissors that we’ve trained so much in the lab to recognize CCR5 aren’t mistakenly recognizing something else as well,” she said. “Because it would be harmful if these scissors would go and go and react against CCR2 or any other chemokine receptor.”
More research needs to be done to ensure that the scissors cut out only the one specific reactor, CCR5, and not reactors critical to people’s health. There are research institutes that are currently doing this work, such as Tulane University in the US state of Louisiana, as well as the American company American Gene Technologies, which is about to publish phase 1 clinical trials on humans.
Franke meets his donor
Two years after Franke received the stem cell transplant, he met Prause. The contact between the two started with a letter from Prause, who had been informed by doctors that all was well with Franke.
“Hey you,” she wrote. “I guess since we’re pretty much a bullseye in genetic terms, I guess I can use the informal pronoun ‘you’ here. We’re almost family. From what I’ve heard, you’re better off. It will of course there is a long way to a full recovery. But I am overjoyed that you have successfully taken over my transplanted cells. My thoughts are with you often. I will close my eyes for a short moment and hope to hear from you soon that you are okay . With love from all my heart.”
A few years later, in 2018, Franke discontinued his use of antiretroviral treatment for HIV under medical supervision. He continued to test for the virus twice a week – he still tests now, but only once every two months.
“When people call Dr. Jensen a healer, he’s still very careful with the term ‘cure,'” Franke said. “But when he write an article in Natural medicine about how I’ve been cured of HIV, I think that’s all the proof I need.”
Edited by: Jane Paulick
This story was adapted from a DW Science Unscripted podcast published on July 13. To hear from Marc Franke and others featured in this story, click here: