Front Burner - A conversation with the 'Berlin patient,' the first person cured of HIV

Episode Date: September 5, 2019

In 2007, a man known as the "Berlin patient" was cured of HIV through a stem cell transplant. It was an incredible accomplishment that researchers all over the world scrutinized for years to come. He was the first and only documented case of a person who has been cured of HIV until March of this year, when a second patient was declared HIV-free from a similar treatment. Today on Front Burner, a conversation with Timothy Ray Brown, the "Berlin patient."

In the Dragon's Den, a simple pitch can lead to a life-changing connection. Watch new episodes of Dragon's Den free on CBC Gem. Brought to you in part by National Angel Capital Organization, empowering Canada's entrepreneurs through angel investment and industry connections. This is a CBC Podcast. Hello, I'm Jamie Poisson. In 2007, this incredible thing happened. A man known only as the Berlin patient was cured of HIV through a stem cell transplant. I am cured of the AIDS virus. Thank you.

Just a decade earlier, this was completely unthinkable. There was an enormous stigma around HIV and AIDS, and a cure was still a complicated scientific puzzle. Timothy Ray Brown is the Berlin patient. He's my guest today. This is FrontBurner. Timothy, thank you so much for making the time to talk with me today. Thank you so much for having me. To start today, when did you first find out about your HIV diagnosis? I found out in 1995. I was attending school in Berlin, Germany. A friend of mine who had just tested positive told me I should go get tested. And so I did. And unfortunately, the test came back positive. And that was a time when there was only AZT as a possible treatment. And I didn't want to take that because there was so much negative publicity around that because people were actually dying

from taking the medication. AZT is known to cause severe side effects. It can destroy bone marrow that produces blood cells, making some patients dependent on blood transfusions. To take AZT means for people to take two pills every four hours for the rest of their lives, to have blood tests every two weeks or every month for the rest of their lives. And so blood tests every two weeks or every month for the rest of their lives. And so I said, I don't want to take it, but I did start out with a small dose of it. And luckily, the next year, 1996, there was new medication available. And did you take that medication? And I took that medication. And I basically kind of, except for going to the doctor once a quarter or maybe once a month, I can't remember, I basically forgot that I was HIV positive. I was just careful about not having sex with people if they weren't positive.

Can I ask you this? We're talking about the mid-90s here. Yes. What was the public perception of HIV at that time? here. Yes. What was the public perception of HIV at that time? At that point, people were very scared. They thought they could get HIV from like eating food that was prepared by a chef who was HIV positive. My name has been published in the paper as an AIDS victim. My child, when he was 11 years of age, he wanted to change his name because of the stigma attached to AIDS. People with HIV have not entered some alien state of being. They are human. They don't

benefit from being isolated or treated as outcasts. And understandably, people were very afraid of the disease. They didn't want to get it. And only you can stop it. Only you have the power to prevent it from happening to you. It is not possible to know if people are HIV positive or not by how they look. Those who are infected with the virus often look healthy, feel well, and are physically fit. Did you talk about your diagnosis with other people at the time? I was living in Berlin, and Berlin is a very open city. And I was working at a cafe, and I told all of my colleagues that I had been diagnosed as HIV positive.

And I also told my bosses. They were very, very accepting. I felt like I was embraced by my colleagues. And of course, I didn't walk around the restaurant telling customers, hey, I'm HIV positive, have a coffee. But I felt very accepted. Okay. You mentioned at the time you were living with HIV, you were taking these drugs and doing quite well, relatively speaking. Yes. And then I understand you were diagnosed with leukemia. How long after your HIV diagnosis did you find that out? In 2006, I was sent to an oncologist because I was having, I was rejecting my red blood cells. And so I had the oncologist check for leukemia or lymphoma.

And he told me one day that he had bad news for me and that I had leukemia. And what was it like for you to hear that news on top of your HIV diagnosis? It was my second death sentence. Finding out that I had HIV was a death sentence because at that point people were dying from having HIV and there was no possible treatment. Well, no good treatment. And then finding out it had the leukemia was horrible news because I knew that if I didn't get treated for it, I could die quickly.

It was a very potent form of leukemia. And what kind of treatment did you receive for it? At first, I started out with chemotherapy. And then I was supposed to get four rounds of chemotherapy. And unfortunately, during the third round of chemo, I became very sick, very low blood pressure, and could barely breathe. And I ended up being put into an induced coma. But then my leukemia was in remission. So I thought, okay, that's good, it's in remission.

I won't have to do any further treatment. Right. I'm so sorry to hear that you went through all of that. Yeah, it was pretty, pretty nasty. But, um, but, you know, in comparison to other people who deal with health problems, um, I at least came out of mine. So for that, I'm very grateful. I understand at this time there was an option for you to get a stem cell transplant, but you didn't get it. I didn't get it because I talked to friends and I took a train down to Dresden and talked to a professor there, a transplant professor. And I told him that I didn't want to get the stem cell transplant unless the leukemia came out of remission. And yeah, so for that reason, I went back to Berlin and told the doctors there that I wasn't going to get it unless the leukemia came back. Was there a sense at that time that the stem cell transplant could help you in your fight against HIV?

Yes. The main doctor, a doctor named Dr. Gerhard Hutter, told me that they were going to look for a donor who was immune to HIV. One percent of northern Europeans are immune to HIV, naturally. So they were going to look for a donor who had the mutation, the genetic mutation, which would make them immune to HIV. I read an article 10 years ago when I was a medical student. to HIV. I read an article 10 years ago when I was a medical student. It was so impressive for me as a student that there's a natural resistance against HIV that I kept this information for 10 years in my mind. And his idea was that they would kill off my own immune system with chemotherapy and radiation therapy and replace it with the new immune system from therapy and replaced it with the new immune system from a donor who was immune to HIV. And then the stem cells from the donor were re-infused like a blood transfusion.

And two weeks after this, the immune system was completely exchanged. The idea here being that this new immune system would then eliminate HIV from your body? Yes, that was what was hoped. And that's actually what happened. In February of 2007, this is several months after the diagnosis with leukemia, I got a stem cell treatment from a donor who was immune to HEV and it actually worked. And, um, oh, and I quit taking my HEV meds on the day of my transplant. Okay. And why did you do that? My, my partner at the time, who was a massage therapist, thought he knew better than the doctors. Um, and he thought that the medication would affect the reproduction of the new stem cells in my body.

When you finally decided to get the stem cell transplant, it's because your leukemia came back, and is the idea here that it was too risky for you the first time, but the second time it was necessary? Yes, Yeah. Is there a moment where you realize that you are no longer HIV positive? With HIV, I had something called the wasting syndrome, and I wasn't able to gain muscle weight. And I realized that working out, I was actually gaining muscles on my body. And so I thought, okay, maybe it's working. And then clinically, because I wasn't on the HIV medication, my viral load shot way up and then slowly dropped down. So I got the transplant in February. By May, I think mid-May, I didn't have any viral load in my blood. Wow, it's astounding

to think that this happened to you. What does it feel like at the time? Oh, at the time, I felt very ecstatic and happy. I was very happy not to have to take HIV medication every day. Which is also, you know, I know we mentioned before that you were living relatively well, but these medications were also very hard on your body, too. He is the only person ever to be cured of HIV and AIDS. At the World AIDS Conference, he's introduced as a miracle. My case, my history is proof and concept that HIV can be cured. Free on CBC Gem. Brought to you in part by National Angel Capital Organization. Empowering Canada's entrepreneurs through angel investment and industry connections.

People often refer to you as the first person who has ever been cured of AIDS. And the word cure is also controversial. So this treatment was successful for you. But as you mentioned, only 1% of people are like essentially immune to HIV. This is a very small number. And I understand many patients don't have these matches. And can you expand on that for me? It is 1% of Northern Europeans. So that is a very small group of people. Right. So not even people. You're right. Yeah. And unfortunately, that particular mutation leaves out a great non-white part of the world. And so that is very difficult to find the donors who have the mutation.

First of all, it's very difficult to find a match to get a stem cell transplant. I had a very high number of matches. And for that reason, they looked for a donor who had the mutation. You already had a pool of options. They looked at this pool of options, and then they chose the donor that had this mutation, which essentially made them immune to HIV. But a lot of people don't even have a pool of options, period, right? Right, exactly, exactly. And for that reason, this is not the cure for HIV. But scientists are, a lot of brilliant scientists are looking for different ways to cure HIV that don't involve a person having to have a blood cancer in order to get this.

Can you tell me a little bit more about what these scientists are doing? They are looking at different pathways. One is called kick and kill, where they use medication, sometimes cancer medication, to kick the virus out into the blood so it can be killed by the existing medication for HIV. That is not terribly successful at this point. Another method is to ensure that people are immune to HIV when they're born. Right. And they're doing this sort of genetic modification. A Chinese researcher is claiming to have created the world's first genetically edited human babies. According to the scientists, the genes of two twin girls have been modified to resist HIV infection. Even advocates of editing human DNA like this are saying, look, this is just way too premature, and a lot more research is needed to make sure it is safe and it really works. Also, speaking of the method that essentially cured you of HIV,

a second patient was declared HIV free. And the stem cell transplant that you had also effectively cured him. We now know it wasn't a fluke. It's happened again. And one of the researchers involved in this medical second says he's over the moon. The treatment has been discontinued now for around for 18 months and there's still no virus in his body. This is 10 years after what happened to you and what was it like for you to hear that news?'m not the only person cured of HIV, and I want there to be many more. And I don't really care what the method is that cures these people.

The second patient was cured basically the same way I was, with a little different regimen in order to do that. It wasn't as difficult as my case. But it must have been incredible to hear that as well. Yes, exactly. I know that for a couple of years, you were known only as a Berlin patient. Right. And you could have chosen to stay out of the limelight, to stay anonymous. And so why was it important for you to come forward? I know you did this in 2010, and be in the public eye and tell your story. Yes, I basically decided I couldn't stay in the closet. And I wanted there to be many more. And for that reason, I knew that in order to

advocate for that, I needed to come out, show my face and reveal my name. I didn't really want to always be known as the Berlin patient. I'm not German and I was just living there. Right. You're from Seattle. You mentioned to me. Exactly. Yeah. I mean, I still use the moniker, the Berlin patient occasionally. In fact, on my Facebook page, I'm Timothy Ray Brown. And then in parentheses, Berlin patient. patient. So I still use that, but what I wanted to do was basically advocate for, be a face to advocate for HIV cure. I applaud those of you in the medical field for your dedication and hard work. I encourage you to continue to think outside the box. Remember that a former infectious disease patient is speaking to you today because

an oncologist had an idea about treating HIV. Do you think that you will see a widespread cure in your lifetime? Yes, I do. I'm most positive it's going to happen relatively soon. I hope that the advances would come faster than they have, but scientists are working toward it. Well, I hope that when that happens, you and I can chat again. Timothy Ray Brown, thank you so much for being here. Thank you so much. Just one more thing before we go today. Last month, Canadian AIDS researchers launched a program that makes HIV self-testing kits available at sexual health clinics across the country, starting in Toronto. The kits are really simple. All they require is a one-minute finger prick blood test. Researchers are hoping to get federal approval of

these devices so they can get wider distribution and help Canadians who don't know their diagnosis get the treatment that they need. That's all for today. I'm Jamie Poisson. Thanks so much for listening to FrontBurner and see you tomorrow. For more CBC Podcasts, go to cbc.ca slash podcasts.