In 2010, Timothy Ray Brown came forward as the "Berlin Patient" and has become an advocate for people living with HIV. He hopes to see the day when all individuals when HIV can be cured safely.
Contagion® Connect Episode 4: Timothy Ray Brown’s Advocacy for HIV Cure Research
Interview transcript (modified slightly for readability):
Welcome to Contagion® Connect. This new podcast will bring you expert perspectives on trending infectious disease topics.
In this episode, we feature a conversation with Timothy Ray Brown recorded at ANAC 2019 in Portland, Oregon. Brown became the first person to be cured of HIV after received a stem-cell transplant to treat leukemia. At first, he desired to remain anonymous and was referred to as the “Berlin Patient.” However, in 2010, Brown came forward and has become an advocate for people living with HIV. He hopes to see the day when all individuals when HIV can be cured safely.
Contagion®: Can you tell me a little bit about your decision to come forward as the “Berlin Patient” and why advocacy is so important to you?
Brown: Leading up to 2010, after my story broke in the New England Journal of Medicine, and then started becoming an important story, I decided I did not really want to be the “Berlin Patient” anymore. I wanted to have people know me by my name and so and I decided that I couldn't be the only person in the world cured of HIV. I was at that point, I didn't want that anymore. I wanted more people to be cured—I wanted everyone with HIV to be cured. And, and so in order to do that, I had to release my name and my image to the public and, and since then, I've become kind of a cheerleader for HIV cure.
Contagion®: Now can you talk to be a bit more about how nurses and providers should exhibit empathy towards their patients and why it is important for HIV care?
Brown: Nurses, doctors, and providers are very important to people living with HIV. It's very important that, that they do not show any stigma and that they are sex-positive and basically show no judgment toward the patient, no matter what.
It's also very important that they establish a very close relationship with their patients. At this point, many, many providers only schedule like 20 minutes for the patient and that's not enough, and so it's very important to extend that time. I think the reason why they do that is financial, that unless they have a certain number of patients each day, they can't really survive.
This country has a very poor medical system and it needs to change, no matter how it's done. I believe Obamacare was a very, very important step in the right direction, but I'm not sure that it's enough. In Germany, I was able to get everything for all medical care for free to my insurance, my insurance paid for my HIV drugs, my antiretrovirals, and then when I got leukemia, they paid for all my hospital care. In the United States, it would have cost hundreds of thousands of dollars, if not over a million. And as a I was working at the time—I'm not no longer working—but there's no way I could have been able to afford that at all.
Contagion®: Why is it so important to push out the message of U=U [undetectable equals untransmittable]?
Brown: U=U is important because it encourages people to take their medication so they do not infect other people. Last year at the International AIDS Conference in Amsterdam, I went to a pre-event on U=U and Tony Fauci [MD, Director of the National Institute of Allergy and Infectious Disease] spoke and he basically said, “U=U is absolutely true, as long U really is U”.
So if people really are undetectable they cannot transfer transmit HIV through sexual transmission or sexual methods. It hasn't been established for breast milk yet. like I listened to a speaker yesterday [at ANAC 2019] and he said it is 97% to 99% sure that that it cannot be transmitted through breast milk if, if the mother is undetectable. And also, this is same for intravenous drug users using dirty needles.
Contagion®: My last question is why is it so important to continue search for a cure for the masses?
Brown: It's really important that cures be found. The way I've been cured is very limited and because the patient has to have a blood disease—I had leukemia—in order to for it to be ethical to do a stem cell transplant. There needs to be other ways to cure HIV and, and there are quite a few brilliant scientists around the world are looking for ways to cure HIV through other ways.
Some of them are genetic research or gene technology. There's also kick and kill where basically they kick they give the patient's medication to kick the virus and reach out into the blood out of the reservoirs into the blood and kill it with medications already on the market. Anyway, those other methods if established or if they work or more can take more people than what I went through.
Contagion®: Is there anything else that you want to add?
Brown: My story is important only because it proves that HIV can be cured and if something has happened once in medical science, it can happen again.
Contagion®: Thanks for tuning in to this Contagion® Connect podcast. Be sure to share, like, and subscribe, and for the latest infectious diseases, be sure to check out ContagionLive.com.