First In Human on Discovery
“The NIH is the largest funder of medical research in the world. So I think this is just a remarkable use of our tax dollars to have created an institution like this.” John Hoffman
By Valerie Milano
Beverly Hills, CA (The Hollywood Times) 8/11/17 – Discovery Channel premiered its new three part documentary series First In Human on Thursday night. Your narrator is nerd extraordinaire Jim Parsons (better known as Sheldon on The Big Bang Theory). However, the real star of the show is government funded National Institute of Health (NIH) Building 10. Building 10 is where tomorrow’s life-saving treatments are tested and tried. This documentary tribute to publicly funded health care research comes hot on the heels of our nation’s near death experience with the attempted repeal of Obamacare, and underscores what brilliant, dedicated men and women of science can do absent privatization. The Discovery Network makes some news as the first media outlet allowed to bring in cameras to observe and report what goes on inside of Building 10.
The term “First In Human” refers to the trial of new treatments on patients that have exhausted more conventional therapies and are at the end of life. They are the first humans to try these new medicines and therapies and the results are not guaranteed; which makes First In Human not only a show about cutting edge research, but the courage of the patients as well.
Discovery puts a human face on First In Human by following the cases of four real life patients who have ended up at the NIH because all else has failed. People like Bo Cooper a 26 year old firefighter and martial artist who is wasting away after his third recurrence of Leukemia.
First In Human also makes discreet social commentary on the disparity of treatment and research between universal afflictions like Cancer and Aids and more obscure diseases like Sickle Cell Anemia which targets humans of African descent. Specifically, Discovery profiles the case of Deidre Williams who came to the NIH with pain and no hope, and left cured. Her story was possible only with the advances in stem cell research; a research that has been a subject of hot debate and hysteria in some circles.
This is ‘substance over style’ documentary film making with no bells or whistles produced and directed by John Hoffman.
First In Human tells sad stories laced with hope. It’s essential viewing for all; but, especially for the science denier community who think any government dollar spent on science is a dollar wasted. Science is your mom’s hip replacement, or the stent in your heart that allows you to lead a normal life.
Long live the NIH and long live tax payer funded health research. Nice job Discovery.
THT and other reporters had the opportunity to speak with John Hoffman, the Director and EVP of Documentaries and Specials at Discovery; Deidra Williams, Dr. John Tisdale; Dr. Terry Fry; Carla and Robert Cooper.
QUESTION: Deidra, I think that was you in the clip saying, “Look at this. This is life.” Was that you?
DEIDRA WILLIAMS: “Yes.”
QUESTION: Tell us a little bit more about that. Tell us what it was, what you went in there for, and what that was that apparently worked.
DEIDRA WILLIAMS: “Well, having sickle cell disease, I was in there for a bone marrow stem cell transplant. And what you saw at that time was me holding basically my sister’s stem cells being fused into me. And so I was at a point in my life where there was no hope. There was nothing else left for me to do but to depend on my sister to provide me with her blood cells, her stem cells to give me life, a new chance.
QUESTION: What was happening to you was first in some ways, or what — what had not been done prior to that?
DEIDRA WILLIAMS: “Prior to that, there had been no — only treatment for sickle cell was probably to have pain medication, narcotics to stop the pain crises, something like hydroxyurea to help decrease. But it wasn’t very effective in me, so there was pretty much no treatment but to live in pain and a very, very poor quality of life at that moment. And when we found NIH, it was an opportunity to — I was at my last end. It was an opportunity to try something new.”
JOHN TISDALE, M.D.: “So I can maybe expand on that a little bit. So there’s only one FDA approved drug for sickle cell disease at the time and really only pain medication. And the average life span is about 42 years in this disease. Deidra was very close to that age at the time. And we knew all along that bone marrow transplants that just replaced the bone marrow could work in this disease. It’s used in many other diseases. But the problem is that adults with sickle cell disease have so much accumulated end organ damage from the disease, they’re just not eligible for a standard transplant. So this first in human trial was really attempting to make a bone marrow transplant safe and effective in a disease where it should be an obvious cure. If you replace the bone marrow, it makes new red blood cells, the disease goes away. But the trick was to try to find a way to do it in a way that was that could be applied in a very sick adult population.”
JOHN HOFFMAN: And this is truly historic, Deidra being with us today. And what Dr. Tisdale has done is truly changing the course of history in terms of sickle cell disease, which, until this moment, has not been something that could be cured. And Deidra is cured of her sickle cell.
DEIDRA WILLIAMS: “Yes.”
QUESTION: We hear that certain drugs and medications are there’s always a long wait list for them to get approved before they reach the population that needs them most. Does that also apply to procedures and treatments as well? Is there a long wait, or the researchers and doctors who find something, can they go right ahead without the FDA approval?
JOHN TISDALE, M.D.: “It really depends on the intervention. So in this case, there was no need for FDA approval because we weren’t testing a drug that would then get marketed. We were testing an approach that was already in the community, in the medical community, being used for other diseases. So in this case you could move a little more quickly than the standard drug that moves through the approval process.”
TERRY FRY, M.D.: “And a comment for a moment on the trial that we were in that the Coopers’ son was treated on. That was an FDA approved clinical trial. And we always have to, sort of, strike that balance between trying to develop these expeditiously, but, at the same time, doing it in a way that is safe. After all, I mean, these are humans that are being enrolled in these clinical trials, and that’s always a difficult balance to strike.”
QUESTION: And the first bit of news that we all heard about stem cell research and stem cell treatments, it seemed like, “Wow, what a break through.” Has it moved, stem cell treatments and research, has that moved as fast as you would have liked it? Is it the magic bullet for the things that ail us?
JOHN TISDALE, M.D.: “So maybe I can take a stab at that question. So stem cell treatments have really moved quickly lately, but in one field in particular, and that’s hematopoietic stem cells. So we’ve been doing bone marrow transplants forever. We rely on the fact that the bone marrow has the stem cell in it to regrow all of the blood. So there are efforts now to move the kind of therapy that Deidra got into using a patient’s own stem cells.“
QUESTION: For the doctors and the medical professionals, I want to give you a shot at this. What does TV, entertainment TV, get right and wrong about medical dramas? We all have very strong impressions of some shows. Some years ago there was, interestingly, a CBS medical drama, I think it was called “Century City,” that tried to depict what medicine might be like in the future. But I’m sure that, as people who do it for a living, you probably have formed some pretty strong opinions over the years about whether you dislike shows like “ER” and “House” that the public loves so much.
TERRY FRY, M.D.: “I think the fact that those shows put the medical field and clinical trials in front of the US population, the world population is a good thing. I think probably one of the places where there may be a bit of a misperception is that this, what we do is, it’s as controlled as we can make it, but the truth of the matter is biological systems, like a human being, are very complicated. And we don’t always know how things are going to turn out. That’s why these trials are done carefully and with caution. But yeah, I think that’s the one place where I would say that the TV shows that are out there may have it wrong.”
QUESTION: Carla, could you tell us what your experience was like?
CARLA COOPER: “Well, my son was diagnosed with acute lymphoblastic leukemia.”
QUESTION: How old?
CARLA COOPER: “He was 20 years of age. He went through rigorous chemotherapy for four and a half years where he went into remission. He was re-diagnosed and had a bone marrow transplant, was good for a year after that, and was re-diagnosed again. We found a clinical trial at the National Institutes of Health, where my son was put in the trial. We were very thankful that he was given that opportunity. Unfortunately, he didn’t make it. But it gave us the time with him, which was really important to us.”
TERRY FRY, M.D.: “And if I may add, I think what you just heard was, you know, the perspective of somebody who watched her son go through a tremendously difficult series of treatments. And, you know, the decision to enroll on a clinical trial that is very early on with very limited experience in humans is incredibly brave and is something that, by the same token, is incredibly important for what we do. Without the trials nothing would be developed.”
JOHN HOFFMAN: “I think it’s also important to add to that that about a half million people have been treated at Building 10 in these first in human trials. They’ve all been treated for free because they are all volunteering to be part of basic research. And the fact that we have established, really, the leading system in the world, we’ve set the, sort of, bar for how this kind of research is conducted for the world. And the NIH is the largest funder of medical research in the world. So I think this is just a remarkable use of our tax dollars to have created an institution like this. So everybody here is involved in the most fundamental, basic research that’s required to advance medicine.”
DEIDRA WILLIAMS: “What I would like to say, as someone who pretty much from birth lived in the hospital system, in and out of the hospital, I’ve been to many different hospitals. And there was nothing like the treatment that I received at NIH, the care, the compassion, not only the hope, the encouragement. So there were many people, all walks of life, there with many different diseases. And there was a patient there that said, “You know, this place should really be called the National Institute of Hope because” and it was very accurate, because that was something that was given to me at that time, was hope, which was something that I had lost at one point prior to coming to NIH. So the work that they are doing there is very good.”
QUESTION: Only because it is national news right now, I have to ask, any of you if — John, would you mention the care at this facility, was it enhanced or was it stifled by Obamacare, and would Trumpcare enhance it or take away from it?
JOHN HOFFMAN: “I think that the American health care system is a whole separate economy from the funding of the NIH as part of our national budget. So in the stopgap budget that was approved in the spring, there was a — the White House did call for serious cuts to the NIH’s budget, but Congress actually increased their budget rather than follow the President’s wishes. So we will see what the future has when the budget discussions resume, but the stopgap budget increased NIH’s funding.”
JOHN TISDALE, M.D.: “If I might just add that any health care plan, whether it’s Obamacare, Trumpcare, or something else, that gets the basic needs met of all of our citizens will accelerate our ability to do research, because much of the problem that we experience when doing clinical research in subjects with diseases is that much of our effort, if those patients don’t have their basic needs met through their regular health care system, gets diverted to getting their basic needs met first so that we can then move on in an experimental approach to their disease. So to the extent that any health care program could cover all Americans, I think the research would then accelerate.”