Jay Johnson on being one of the first genetically altered human beings – Our Longevity Futures, with Chris Curwen | Ep. 3

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Over the last 150 years, our life expectancy has grown, from 40 years in 1850 to over 90 years today in some countries. This can be attributed to advances in medical science, improvements in public health, and equitable access to healthcare, especially for maternal and infant care.

What will the future hold for our world? Will we be overwhelmed by a ‘silver tsunami’ of retirees with poor health, or will we use the latest research findings to rejuvenate the elderly and extend their lifespan?

Our Longevity Futures is a show where I, Chris Curwen, speak to scientists, engineers, entrepreneurs, doctors, politicians, and community activists who are giving the world the hope that we can all live longer and better, and improve our health.

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In this episode number 3 of ‘Our Longevity Futures’ we host Jay Johnson. In 2009 Jay volunteered to become one of the world’s first edited people. He did this because he was dedicated to the cause of curing AIDS.

The CCR5 gene editing clinical trial was a collaboration of researchers from the University of Pennsylvania, the Albert Einstein College of Medicine in New York and Sangamo BioSciences, California, in an attempt to find a cure for HIV/AIDS. The researchers developed a gene therapy to inactivate the CCR5 gene, a gene that encodes for a receptor on the surface of immune cells which allow the HIV virus into the cell.

Jay works as the director of volunteers for Action Wellness, an organisation that helps people living with HIV and other chronic illnesses to get access to health care no matter what their race, gender identity, immigration status, insurance status, or financial resources. Throughout his nursing career, Jay has worked with other organisations in Philadelphia to bring social justice into the delivery of effective health care.

In this chat Jay gives his own personal HIV story, from seeing the deadly virus causing the death of his best friend, to being tested positive himself only shortly after. In a time when a lot about the disease was still very much unknown, any hint of a treatment or cure was a ray of hope.

Jay talks about his experience of the trial, giving us a unique view of gene therapy and gene editing from a patient’s point of view. He discusses what the results have been, and the overwhelmingly positive reaction to becoming the global face of this battle against HIV.

Here are some of the highlights for my conversation with Jay Johnson:

Chris: Can you tell us a bit about yourself, who is Jay Johnson?

Jay: Sure Chris, so I was born and raised in Philadelphia, I am 60 years old, I’ve lived in Philadelphia most of my life. My first career was in nursing, I worked in many different avenues of nursing for about 10 years ago. I was furloughed from my nursing position and I landed my position at Action Wellness. I was a volunteer for that agency and that’s how I got my current position today

Chris: So could you tell me a little bit about your experience as someone with HIV during a time when we knew so little about the disease, and when homosexuality was associated with such negative attitudes.

Jay: I came out at the age of 18, I lived my life as a gay man. In 1991 my best friend was diagnosed with HIV and so he got sick very quickly. His partner and I took care of him and six months from the time he got diagnosed, he passed away. At that time I decided I needed to learn about my status and that’s when I learned I was HIV positive so that’s where my journey begins, back in 1991.

Chris: What did you know about HIV then, and what was your mindset when you did get tested positive?

Jay: So back then it was a death sentence to be diagnosed with HIV, and it was definitely a career killer for anyone that was in the healthcare profession. I had to begin leading like a secret life. Other than being a gay male I was out as a gay male, but now I had to go back into a closet as far as my HIV status, and so it was it was tough. But I was determined that I was not going to let this virus kill me and so I just started by seeking out an infectious disease physician and I started the long journey of battling this virus.

Chris: Did they have the antivirals at that point?

Jay: No, they did not. The only drug that was available at that time was the AZT (azidothymidine). At that point the physician felt that my numbers were good enough not to start any treatment so we just kind of watched my numbers and see where things went. About a year after my diagnosis, that’s when my CD4 count dropped considerably and so that’s when we decided to start treatment, and I went on the AZT, which was a horrible drug, the side effects were worse than the disease itself. Fortunately, I was at the cusp of the new antiretroviral drugs, and so I would say maybe six months of being on AZT I went on my first antiretroviral drug.

Chris: The trial that Jay was a part of was using a technology called zinc-finger nucleases, some of you might have heard of CRISPR a gene editing tool, zinc-finger nucleases came just a bit before CRISPR. Essentially they were hoping to edit the CCR5 gene which is a gene which codes for a receptor on your cells which the HIV virus binds to, and that is how it finds its way inside the cell. How did you come to hear about this trial?

Jay: I learned about the trial through my infectious disease doctor, Dr. Michael Braffman, who works at the University of Pennsylvania. He thought I was a good candidate for it. He described the study to me and at that point he introduced me to Dr. Pablo Tobias and the research nurse. We went through some screenings and I got some lab work done, and after all the pros and cons, and the rest, were addressed with me I decided to enroll into the study.

Chris: This is a part of the study which is really well scrutinised, we call it informed consent. Do you think you were giving a true education on what was going to happen? I know you were a nurse already, so you were already fairly well aware of the risks. Is that something you really took a long time to learn about and sort of make sure you you knew about?

Jay: My only research was listening to my infectious disease doctor and the research team. I put my trust into them and my decision was based on everything they shared with me. They did go over with me the risks involved and I just felt that those risks were not comparable to what could lead to the results of this study. So I was open and ready to dive into it.

Chris: It’s an amazing position to take, but were there any nerves at all? Was there any point when you had to make the decision where you doubted yourself, or thought I can’t do this?

Jay: No Chris, to be honest with you everything went smoothly. All the lab tests I had to go through; I had some biopsies that I went through, I had endoscopy done, and then the apheresis all went smooth. So I had never doubted anything even right up to the time when they were going to transfuse myself back into me, I was open and willing and ready to tackle it on.

Chris: So let’s go from where the treatment started. Can you tell me a bit about the story of how the trial went?

Jay: So like I said, I had to go through a lot of lab work; I had biopsies done which of course I just put under sedation for that. I had an endoscopy done, and then as far as the apheresis, it was a long process as far as sitting still because you didn’t want to disturb the equipment because it would trigger an alarm. That was probably the worst part of the whole study, was just like sitting there for anywhere from 2-4 hours, having the transfusion go in (the apheresis is: taking the white cells out of me), but once I got through that I was fine.

Chris: After the treatment started what sort of reaction did your body have to it?

Jay: So the day that I was getting the cells transfused back into me again, I was told just arrived at the hospital at a certain time I could drive myself, that I would get the transfusion, they would observe me for about an hour and then I would just go on my way. It was very interesting, it was exciting, it was a whole team of people observing me getting the cells transfused back into me. They hooked up the IV, they hooked up the cells and and infused it into me, and everything was fine. Once the cells went in the entourage left, and it was just the research nurse and myself. Approximately 20 minutes after the cells went in, I got a little chilly and so I asked my nurse, Joe, if he could get me some warm blankets. He went out got me the warm blanket, and I was fine. And then right after I got the warm blankets, all of a sudden my body just went into multiple cramps. I mean every part of my body was cramping: my stomach, my hands, my arms, my leg and it was very painful cramps and I don’t know what happened. But next thing I know, I just saw my nurse turned completely pale, I saw him on the phone calling Dr. Tobias telling him he need to get down here now. Before I knew it the emergency team was in, they put the crash cart in, and as a nurse, it was the first time that I was on the other side of the bed and it was crazy, it was crazy.

Chris: That must have been so so strange. What was running through your head at that point?

Jay Oh my god! What do I do now? Dr. Tobias had me call my partner and told my partner to get to the hospital. I was trying to tell my partner to get to the hospital but I just couldn’t get the words out, so I just handed the phone to Dr. Tobias. I heard the staff yelling out my blood pressures, medications, and at this point yeah I was a little unnerved, and then next thing I know I woke up approximately an hour later. They had heavily sedated me, they got everything under control and they observed me for another two hours and I went home.

Chris: Do you know of what actually happened to you in that period? Was it was it a bad reaction to the treatment?

Jay: Afterwards Dr. Tobias had said that it was a typical transfusion reaction that can happen with any type of blood product that’s entering into your body and I was actually told that it was probably a good sign, because it meant that my body was taking on the new genetically altered cells. So even though it was traumatic for me, it turned out to probably be a good thing.

Chris: How did the treatment progress after that? What did the results actually show?

Jay: I became what they called a long-term follow-up, which lasted for 10 years. I mean, actually my 10-year mark was last year, September of last year, and so it just consisted of coming infor a check-in visit at first. I believe it was probably every six months for the first year/two years afterwards, and then it was yearly follow-ups. Those follower-ups consisted of me coming in having lab work done, checking my vital signs and asking me some questions about what has happened since the last time I saw them, any side effects, anything I noticed different, and that was it. In the beginning it looked like the new genetically altered cells were making new cells without the CCR5 receptor, not all of them, but there was some activity of showing that some of the cells were being reproduced without the CCR5.

Chris: What do you think could have been improved about the whole process? Is there anything that you would change from from your point of view as a patient on the trial is there something that you would have improved to improve your sort of experience?

Jay: There wasn’t much, I mean of course, I would not have liked to have that reaction I had, but I mean it really wasn’t too much improved. I guess the biggest thing was the waiting to see if the cells were reproducing, they did not always have those results at each visit so just probably a little more communication as far as how the the study was going, as far as the reproducing of the cells.

Chris: One of the things I admire most about you is the fact that you could have chosen to remain anonymous, which may have been the easier option. You could have not had to disclose your identity and being associated with things that at the time people didn’t understand. So why did you in fact decide to come out and to share openly your experiences on this trial?

Jay: Like I said I’ve always been an open book, as far as my HIV status. I’ve had family support, friends support, my colleagues, my former colleagues were always very supportive. So I wasn’t worried about that. What did kind of throw me for a loop was when I got an offer or invitation to do a interview with the associated press and it didn’t click that the associated press is worldwide. So when the news went out about the study and I was the face of that study it was like coming out of the closet for a second time, because a lot of my neighbours did not know that I was living with HIV, they knew my sexuality, but they did not know I was living with HIV. My nephew, I never had discussed it with him because he was of a young age but at an age where he knew what HIV was. So that was an eye-opening, but it was a very, very positive reaction from everyone. I got loads of support, congratulatory wishes from neighbours, colleagues, friends that did not know my status. So in the end it turned out to be a really positive experience.

Chris: That sounds incredible.I’m so glad of that reaction. My next question was going to be did you regret that openly sharing it, but it sounds like from your reaction that you didnt’, which is just brilliant.

Jay: Yeah, at first I was a little unnerved, because I didn’t realize the extent of this story was going to go, but then afterwards I was like “no” this is something that the world needs to know. If I’m the one that’s going to put this out there for the universe to see what’s going on and to give some some added support, I was very happy that I did come out of that second closet.

Chris: Now you work for Action Wellness, where you help people living with HIV and other chronic illnesses. Can you tell me a little bit about your work there and what you do in your neighbourhood?

Jay: Action Wellness is one of the first HIV organizations in Philadelphia. It was formerly known as Action Aids, and this organization was started by a group of volunteers who thought that people living with HIV and AIDS, back in the early 80s, needed extra added support, because so many people living with HIV and AIDS back then were outcasts. They lost their family support, a lot of their friends were battling the disease themselves, so they couldn’t get the support from them. So these group of volunteers came together to form a community to support people living with HIV and AIDS, and so we as an agency still support that cause, except for in 2016, we expanded our services to all chronic illnesses so that we can remain viable to support people with living with HIV and AIDS. We provide direct service case management which includes linking people living with chronic illness to housing, getting medical care, obtaining medical insurance, and providing emotional and practical support. My position here at Action Wellness is the director of volunteers and my responsibility is managing the volunteer department. We have about 400 volunteers that assist us 200 of those volunteers are part of a program called the buddy program and these volunteers are match with someone living with chronic illness and they provide unlimited personal and practical support, which basically means calling the client on the phone once or twice a week to check in with them, doing a face-to-face visit with them two to three times a month to get them out of their isolation. We’ve had a little challenge with the coronavirus pandemic, but our volunteers are dedicated and many of them have resumed visiting their clients face-to-face, of course practicing social distancing and wearing the mask, and they’re also the ears and the eyes for the case manager to help the case manager manage the clients and any affairs that affect them surviving.

Chris: It sounds like an absolutely incredible cause and I’m sure you’re making a huge impact on so many people’s lives there. So obviously you’re still working with a lot of people with HIV and is it something that do you try to keep abreast of the the research and the new technologies that are coming out around the virus?

Jay: So I tried to keep myself dabbling in some of the research, I probably could do a better job on that. I rely a lot on my medical team and so I have a really great infectious disease doctor and so anything that’s coming down the pipeline as far as research, or new medications, or new procedures, he usually keeps me abreast of it.

Chris: Do you think this sort of technology has the potential to revolutionize treatments for chronic diseases?

Jay: Absolutely yeah. It’s amazing what science can do today and I do believe studies such as the CCR5 receptor, are going to be very instrumental in helping with, not only HIV, but many other diseases. Just look at the vaccine that was developed in such a short time for the coronavirus, so yeah science is amazing!

Chris: Would you ever consider participating in another trial again?

Jay: Absolutely yeah, like I said the worst experience was getting the transfusion back in, but even that would not deter me from entering into another study if it was offered to me.

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At Gowing Life, we want to say a massive thank you to Jay. To see a gene therapy trial from the perspective of a participant is incredibly important for developing future studies, and is often an aspect which is overlooked. It was an absolute honour to be able to chat to Jay about his experiences. His final answer sums his up as a human being; despite his less than ideal experience and outcome, he still would not hesitate to sign up to participate in another trial if there was a chance it may improve the lives of others. The world would be a far better place if we had more Jay Johnsons around!

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