Exclusive interview with Discovery’s First in Human sickle cell miracle worker, Dr. John Tisdale

Dr. John Tisdale
NIH research Dr. John Tisdale has effectively created a cure for sickle cell disease

When people fall ill, sometimes there is no hope. In some cases, there is an avenue of last chance to explore, this is the world of First In Human on Discovery.

Narrated by Jim Parsons, this groundbreaking three part event unfolds at the famous National Institutes of Health Building 10.

Building 10 is the largest research hospital in the country where select patients – often deemed incurable and near death, with no alternatives – go to be “first” in clinical trials for cutting edge therapies and medicines.

This is the hardest thing to do in medical research, as some treatments may wind up killing the patient.

Discovery’s cameras were given unprecedented access for the first time inside this institution.

These true and gripping accounts of medical miracles are told incrementally in the three episodes. The NIH took the risk with Discovery to let them film stories and meet the doctors who have changed lives.

Their decision was based on the exemplary work of John Hoffman, the Director and EVP of Documentaries and Specials at Discovery.

Hoffman was given access worked with NIH doctors Dr. John Tisdale and Dr. Terry Fry and their respective patients, Deidra Williams and Carla and Robert Cooper among others.

This televised event takes viewers inside the crucial beginning phase of scientific research following four patients as they participate in first in human trials, the initial time a new therapy is tested in humans, revealing the character and inner strength of both the doctors and their hopeful patients.

At the recent television critics’ association summer press tour, we spoke with all of them about their monumental achievements and setbacks as well.

Our exclusive interview below is with Dr. John Tisdale, whose revolutionary work to cure sickle cell disease is nothing short of astounding in results.

He was accompanied by his patient, Deidra Williams, who suffered her entire life and was resigned to an early death (the average life span is 42 years). Dr. Tisdale’s bone marrow treatment saved her life.

Deidra recounts the pain of living with sickle cell disease

We interviewed Dr. Tisdale and Deidra together:

Monsters and Critics: How did you find Dr. Tisdale to help you, Deidra?

Deidra: I applied for the clinical trial at the NIH, and when I was accepted in that’s when I met Dr. Tisdale.

M&C: How many cases do you review, Dr. Tisdale, that you see these applications? And how do you pick the people that you want to work with?

Dr. John Tisdale: We have two or three new patients that come to our clinic with sickle cell disease a week. Some of them are just interested in finding out more about their disease and may be contributing research samples for studies that we do in the lab. And some are interested in getting treatment recommendations, the one drug that we have, Hydroxyurea. And some are interested in pursuing curative therapies and are coming to see if they’re eligible for one of the clinical trials that we have open.

The way the process works is that if it’s the latter, we start off by determining whether it’s an option for them, whether their disease is severe enough. Almost every adult, it is, unfortunately. The next step is what type of curative transplant might they be eligible for.

The kind that she got was from her sister. And so, the first screen is, do you have a brother or sister that’s a match that doesn’t have sickle cell disease? If that’s the case, then they can go into this protocol. If they don’t, then we have two other experimental transplant protocols, where we’re testing either a half match, which almost everyone has. A parent or a child is a half match.

Or what’s called Gene Therapy, where instead we take the patient’s own bone marrow, try to correct it, and give it back. And so, each of those protocols have a little bit different eligibility criteria that relate to what’s being done to get them ready.

In her [Deidra] case, it’s a pretty benign prep to get the transplant. So virtually anyone with sickle cell disease would be eligible to have it done.

The other two are a little more involved, so not everyone is eligible because they have to have good kidney function, good lung function, and that sort of thing. So that’s sort of how the process works.

Dr. Tisdale’s therapy was so successful it is being rolled out to other hospitals

M&C: Deidra, how did you feel when you got accepted into this program to be helped?

Deidra: I was excited. I was scared. And I was just doing my best not to get my hopes up high because I was living with a disease at that time that there was no cure. Sickle cell was not curable, so for me to be taking this step I had to kind of hold it in. Because you just don’t want to be disappointed. But I knew that it was … I just felt pulled to do it.

M&C: For people who don’t know, what’s living with sickle cell like?

Deidra: It is very painful. All over your body. For me, it was all over. Mainly in my joints and it’s just very exhausting mentally because you are always in pain. And it’s hard. You feel like you’re trapped in your body, because what your mind says you can do and your body says and does something totally different.

It’s just a very debilitating disease, and a misunderstood disease, with a lot of different misconceptions. Usually, people with sickle cell disease are very strong people. And you have to be to deal with that kind of pain from birth.

M&C: Wow. How do you feel now?

Deidra: I feel good.

M&C: When did you feel a change when you started this therapy? When did you feel a change in your overall?

Deidra: It was not like a flick of a light switch. This was an ongoing, as each day progressed, you’ll feel a little better and a little better and a little better. I am a little under two years … And I am still starting to still feel a little bit more … I don’t know to say normal, but you find it’s a progression, the things you couldn’t do, you can now do again. Maybe it’s walking around the block that used to trigger a crisis. You’re waiting on something to happen but it doesn’t happen. Or being outside and it gets really cold, and again, you’re waiting on that pain to be triggered to happen, and it doesn’t happen. And you’re like, “Oh yeah, I’m okay.”

It’s been a progression of clarity. And what I mean by mental clarity, because people with sickle cell, more than likely, they’re dealing with a lot of narcotics to control the pain. Once that was taken care of … When you’re able to lift that, just little by little. It all starts-

Dr. John Tisdale: Making more clear what it’s really like because you say you’re in pain, you have chronic pain, lots of people have chronic pain. What happens is, the red cells that normally squeeze through the circulation, in sickle cell disease, once they let go of oxygen, the hemoglobin inside gets hard and rigid, and the red cell then becomes very rigid and can’t pass through the circulation. Everything clogs up. And if it happens here, there’s no blood supply to your leg.

Or if it happens in the bone, there’s no blood supply to your bone, for a long time. And that damages organs. If it happens in the brain, you have a stroke. And kids with sickle cell disease have strokes and bone damage

M&C: Is it like a necropsy?

Dr. John Tisdale: Yes, necrosis. It’s an intense pain.

Deidra: Yes it is.

Dr. John Tisdale: That no one else can even imagine. And it requires high doses of narcotics, in the hospital sometimes for days, sometimes for weeks. It appears out of the blue. You’re going along with life, and then the next thing you’re in the hospital for two weeks on heavy doses of narcotics. And this happens over and over and over. So you can’t plan life, you can’t plan family things, you can’t study, you can’t finish school, you’re in pain all the time.

You wind up on narcotics at really high doses that control the pain, but most of the time not adequately. What we’ve noticed actually, is it takes some time after being on pain medications for the pain wires to kind of reset in the brain.

Part of the reason why it takes some time for you to feel completely better. Even when the sickle cell is completely gone.

Deidra: That’s so right. And everything that he’s saying, it’s just so accurate. It would get in the way of everything. The countless times where I was in school and you know, pneumonia, something happens, something just takes you out. And it got to a point to where you don’t know what crisis going to be that crisis. And it just takes you out. Is it going to be my heart? Is it going to be a stroke? What is it? You pray when you go into the ER that you’re going to come back out. And I did that, I had small children, and every day that was a fear. That was a fear. And now, again, just being able to think clearly, being able to think clearly and to move and not having the fear that it’s … Oh, am I getting sick? It’s just so much.

M&C: When you found out that they were doing a television show, and that you were going to be part of it, how did that process unfold to you? You’re doing your job as a doctor and you’re a researcher and you’re helping people with this particular blood disease, and then all of a sudden cameras are in your orbit. Tell me about that.

Dr. John Tisdale: I have to say, at first I was a little reluctant. I’m sort of camera shy and don’t like to be the center of attention, and certainly didn’t want a bunch of film crew following me around every day. So, there was that. But we met with the people from the Discovery Channel and I was really impressed that they were in this for the right reasons, and they were really wanting to promote the kind of work that we do. I felt like I had to do it because people just don’t know about sickle cell disease.

It’s actually the first disease that we discovered the molecular defect, we scientists…And despite that, we really have nothing. And there’s very little awareness of the disease. Patients with the disease are often mistreated because the one thing that we can do for them is give them narcotics. So, you show up in the emergency room and you want narcotics.

People are like, “They’re drug seeking.” It’s a disease that’s underappreciated, misunderstood, and I felt like I had to do it.

M&C: How many years have you been researching this disease?

Dr. John Tisdale: More than 20 years… at the National Institute of Health in Bethesda, Maryland – the Intramural Clinical Research Program.

M&C: Deidra, talk about the frustrating thing about sickle cell, you don’t look like there’s anything wrong, and yet there’s so much going on…

Deidra: A lot of people say that [about looking good]. And that’s another misconception.

Dr. John Tisdale: You look great and you’re so sick.

Deidra: It’s on the inside. It’s not something that you can physically see.

M&C: Anyone else in your family with it?

Deidra: Yeah, I do. I have an uncle with sickle cell disease.

M&C: So he understood your suffering?

Deidra: He understood completely.

M&C: Did you have any pushback from your family that maybe thought you were putting it on, or playing up your pain?

Deidra: You have some members of the family like that. Like they think you can fix it by drinking water. Not my mother. My mother’s a nurse for over 30 years. She definitely knew.

Deidra the moment she learned she was free of the disease

M&C: I’m glad you’re well.

Deidra: Thank you.

First in Human: The Trials of Building 10 airs Thursdays at 9/8c on Discovery.

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