HIV Cure Research Day with Paul Edmonds, City of Hope Patient
Dr. Allison Mathews, CEO of Community Expert Solutions, speaks with Paul Edmonds, the City of Hope Patient, who is the 5th person cured of HIV about his experience
Dr. Allison Mathews, CEO of Community Expert Solutions, speaks with Paul Edmonds, the City of Hope Patient, who is the 5th person cured of HIV about his experience.
Here is a transcript of the interview:
Allison Mathews: All right. Hello everyone. I am Dr. Allison Mathews, founder of HIV cure research day, and I'm here with Paul Edmonds, who is officially the fifth person to be cured of HIV in the world and we are honored to be here today with him. Paul, how are you doing?
Paul Edmonds: I'm doing well. Thank you, Allison, for having me.
Allison Mathews: Yeah, absolutely. So I wanted to, I guess, start by asking some of the questions that I think most people would want to know. How were you cured of HIV? What was that process like?
Paul Edmonds: Just to give you a little brief history: In 1988, I tested positive for HIV and also got an AIDS diagnosis because of my low T cell count.So then 30 years went by and in 2018, I had acute myeloid leukemia and I needed a bone marrow transplant. So they looked for a donor who has a specific mutation, the CCR5 Delta 32. That prevents HIV from attaching to your cells. So my donor had that mutation and so when I got his bone marrow, I no longer have HIV. So it's pretty cool after 30 years.
Allison Mathews: Yeah, I mean that is amazing!
Paul Edmonds: The goal was of course to get the leukemia in remission because that would kill me, with it taking that long, and there was a side effect– the HIV part. A really good side effect.
Allison Mathews: I know! Were you participating in a clinical trial or is this something that came about because doctors knew about it?
Paul Edmonds: No the doctors knew about this because of Timothy Ray Brown, who was the first person [cured of HIV.] They looked for a donor with that mutation, which is not necessarily easy to find because, I think, it's one percent of people in the world [who] have it. So they actually found two donors. It took three months to get my leukemia in remission. At the end of the three months when it was in remission, the first donor was no longer available and they had a second donor, which amazed me. I didn't know this until long afterwards. And so then in February 2019, I got the bone marrow transplant and March 2021, I stopped my HIV meds. I've been off them ever since and they can find no HIV anywhere my body.
Allison Mathews: What was that experience with stopping the HIV meds?
Paul Edmonds: Yeah, it was a little scary. I've been taking them for so long, but I was ready. We would have done it earlier, but the pandemic hit. So I waited an extra year to stop because I wanted to get a COVID vaccine before I stopped anything. That's why we waited. Otherwise, it would have been in 2020 that we stopped.
Allison Mathews: I get a lot of questions about “If Timothy Ray Brown and others have been able to be cured, why aren't we doing that for everyone?”
Paul Edmonds: It's very expensive for one thing. It's also extremely risky. The people who get a bone marrow transplant are people [where] that's about their only option to survive the cancer. So anything can go wrong with a bone marrow transplant. I mean I apparently had a very good match because I have not had a lot of problems, but Timothy Ray Brown did in the beginning and the others before me also had a lot of issues that I haven't had.So, it's getting better, I think, but I said, it's very, very risky. Hopefully it's something they're working on to try and duplicate a way to do it without all that risk. I think they're going to get there at some point.
Allison Mathews: I've seen some people have now been cured with the bone marrow transplant but without the CCR5 mutation.
Paul Edmonds: The Geneva Patient, the last person. They got a bone marrow transplant and the donor did not have that mutation. What's different about the Geneva Patient, that I can tell, is they were on some medication to prevent the graft versus host disease, which is what it's called when a little bit of your original immune system is left in you and it fights the new donor system that's coming in. It's called graft versus host disease. But the Geneva Patient is the only one I'm aware of that [where] they can't find HIV and he hasn't had a bone marrow transplant with that mutation. There are other people I think they're calling “functionally cured.” Yeah, I'm learning as I go.
Allison Mathews: How do you feel about the word cured versus remission?
Paul Edmonds: I’m fine with remission. I'm ready to use the cure word but I think they're waiting for five years to go by before I think they will say cured like they do Timothy Ray Brown. They decided five years is a good marker by which the bone marrow transplant will be five years, this February. It'll be two more years off of meds before having five years.
Allison Mathews: What is your “new” birthday?
Paul Edmonds: February 6th
Allison Mathews: So one day away from Timothy Ray Brown's birthday! His was February 7th!
Paul Edmonds: Really? All right. I didn't know that. Yeah, we were just in Palm Springs area and we have a Walk of Fame like Hollywood does with stars on the sidewalk, and we just dedicated one to Timothy Ray Brown on World AIDS Day, and I spoke at that ceremony. That was really cool.
Allison Mathews: Right and did you know him?
Paul Edmonds: I wanted to meet him but then the pandemic hit. Otherwise, I would have met him. He got sick during the pandemic. I wasn't ready to go to him before I knew [if I was cured] because I didn't want to jinx things and I just didn't know if things had worked or not.
Allison Mathews: So, I think one of the amazing things that I've now encountered in my personal life is that my mom actually just had a stem cell transplant on December 7th. So that's her “new” birthday and I try to communicate to people that finding a cure for HIV …a lot of people think that HIV is not relevant to them, but I think my mom and other people who have experienced stem cell transplants are perfect examples of how we are all connected. If something is impacting one group of people, that it's also impacting another and it could also benefit another group.
Paul Edmonds: Yes.
Allison Mathews: So, just trying to make that connection for people that it's really important for us to care about and be involved in HIV cure research and to learn more about it because it also has implications for all of us.
Paul Edmonds: Yeah. Yeah, I think it was work on HIV that led to a fast vaccination for COVID I think.
Allison Mathews: Yes, absolutely.
Paul Edmonds: Quite a role in that. Yeah.
Allison Mathews: A lot of people don't even realize that most of the COVID vaccine researchers were HIV researchers. So, I kind of just stepped right in and I'm social science, but [it’s] the same skill set to be able to communicate to the community and reach out and engage and educate,
Paul Edmonds: Yeah. Here your job is just as important as theirs because you have to communicate with the community or none of it is going to work. They're not going to have people to [participate in] the studies. Anyways, yeah, it is really important.
Allison Mathews: Yes, absolutely.
Paul Edmonds: I'm really impressed with the Martin Delaney Collaboratories. I didn't know about them.
Allison Mathews: That's the goal is to help raise awareness about the Martin Delaney Collaboratory. So for people who don't know, the Martin Delaney Collaboratory is a group of study sites across the country and also across the world. They are working on different strategies to cure HIV. Some include stem cell transplants, some include gene editing, and then others include trying to eradicate the virus from the body through certain medications that they're also borrowing from cancer research and vice versa.
Paul Edmonds: Yeah, very very impressive. I'm just so certain they're gonna get there.
Allison Mathews: Yeah, absolutely. Is there anything that you would like to say to people in the community and also just people living with HIV in particular that would motivate them?
Paul Edmonds: Right. HIV doesn't have to define who you are. You are your own person. You've got your life and HIV may be part of it. I represent a hope for people. That's what my goal is–to inspire the people living with HIV to inspire the researchers and the community that there's hope and that we're going to find a cure.
Allison Mathews: And how apropos that you are the City of Hope patient!
Paul Edmonds: I know it's such a wonderful place. I can't say enough good things about City of Hope.