In this week’s final episode of First in Human: The Trials of Building 10, the four patients meet with their doctors a final time to discover if their experimental treatments have worked or not.
One of them is young Canadian Bo Cooper, a patient of Dr. Terry Fry who heads the Hematologic Malignancies Section in the Pediatric Oncology Branch.
Bo came to the NIH complex with his parents Carla and Robert Cooper.
At just 20 years of age, he was diagnosed with acute lymphoblastic leukemia before a battle lasting several years as he went in and out of remission.
Building 10 is the largest research hospital in the country, where American taxpayers fund tomorrow’s medicine.
Discovery’s cameras were granted unprecedented access inside the institution to film the series.
It is important to note that the current administration proposed several billion dollar cuts to the NIH, but Congress has fought back to offset the move.
The term “First In Human” refers to the trials of new treatments on patients who have tried every other conventional therapy and drug and have no alternatives left.
These “first” patients try new medicines and therapies but the results are not guaranteed which makes First In Human a cutting edge insider’s look at the research done there and the courage of the patients and their families who sign up.
Along with Bo Cooper’s parents Carla and Robert Cooper, Dr. Terry Fry attended the recent Television Critics Association (TCA) summer press tour, where he talked about the complexities of humans’ biological systems.
He also revealed how research doctors at the NIH are never 100 per cent sure of how things are going to turn out. He said: “That’s why these trials are done carefully and with caution.”
Monsters and Critics spoke to Dr. Fry and Bo’s parents Carla and Robert Cooper, who tragically lost their son in November 2016, in an exclusive interview.
Monsters and Critics: How old was Bo when he was first diagnosed?
Carla Cooper: My son was diagnosed with acute lymphoblastic leukemia at 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.
M&C: Dr. Fry. how did working with the Coopers help your research in finding a cure?
Terry Fry, M.D.: I think what you just heard was the perspective of somebody who watched her son go through a tremendously difficult series of treatments.
The decision to enroll in 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.
M&C: How did you come together to work together?
Rob Cooper: For us it was through the Leukemia and Lymphoma Society, their head office out of Denver, I think it is, made the contact, put Bo and us in contact with the NIH.
M&C: His prognosis…his doctors suggested that he do this trial?
Carla Cooper: It was the last hope.
Rob Cooper: The doctors from Bo’s original hospital weren’t aware of any such things going on.
It was something through the Leukemia and Lymphoma Society of the U.S. that came up with this suggestion.
M&C: How did your doctors connect you to the NIH?
Dr. Terry Fry: A couple things I’ll say is that I think it’s not infrequent that patients find their way to us independently of their treating physician.
Some physicians contact us by being aware of our trials, but often the families of the patients themselves find their ways to us.
It’s not like an online application. We tend to prefer direct communication — email, phone calls — very early on in the process because eligibility for these sorts of trials that are very complex, for very complex illnesses, it’s not easy to determine from a sheet of paper.
We really have to have a conversation about where things are at, and make a decision together, first by telephone, as to whether it makes sense to make the trip from Canada to the NIH to be screened.
Even then, there are no guarantees that, when they get there, they’ll be eligible for the trial. We try as much as possible to pre-determine that so when the patients finally make their way to the NIH, they’re likely to be eligible.
M&C: For people reading this article, can you describe your emotions and your feelings when you get that green light to come there and…this is, obviously, the last ditch effort and hope. For some it’s successful, and for some, it’s not…and what that process is for a family, what you went through, and the time frame of it?
Rob Cooper: I think that when you realize the advanced treatments are running out, you start scouring the earth. It’s your child, you would do anything.
That hunt had already been under way. We always tried to stay a step ahead. We were running out of options by this point.
Getting the news that Bo was able to come to the NIH, that’s great news. It’s just…it wasn’t the end, though.
We always had to be thinking forward. What if this isn’t successful? I think that, as parents, any of us would want to make sure we had it all laid up pretty well so that there was always an option.
It’s just a little scary when you’re running out of them and you know that when you’re arriving at the NIH, this is the best place in the world, and I sure hope it works.
M&C: There wasn’t a Canadian version of the NIH, really?
Rob Cooper: No. I’ve voiced myself pretty openly about a lot of this. In Canada, Canadians think they have a great healthcare system.
If you ask anybody why that is, they say, ‘because it’s free’. Well, it’s not free. I pay for it. Everybody pays for it. The free part of it is, really, a way lower level of care than what we see in the U.S.. I don’t think people understand that.
Only until you have a sick child, and you have to travel and go try to find treatment for them, do you understand that that’s the case.
M&C: Dr. Fry, do you manage the stress of knowing that some people you’re going to be able to help and some people, you do everything you can, and there’s just no way to fix the problem, as a doctor?
Dr. Terry Fry: I chose to do this, to be in this profession, obviously, willingly and knowing that there’s a tremendous amount of stress that went along with it.
Certainly, I think all of us who do this try to compartmentalize, but most of us unsuccessfully, because we hopefully all care tremendously about our patients, not just about the trial.
Things that are going on with our patients keep us awake at night. When that stops happening, that’s when I need to stop doing this because that’s why I’m in this, is because…in Bo’s case, the outcome wasn’t what we had all hoped, but that’s what keeps me doing this.
Obviously, patients like Bo remind us of that all the time.
M&C: And your son had to try, and his death appears to have energized you both to do something very, very profound with your lives. What do you want to accomplish for Bo’s memory and for this disease and fighting this disease? What do you hope that this show does for people that are in a similar situation as yours?
Carla Cooper: I hope that it gives them an awareness that there are people working out there to make a change, to help people who get terrible diseases.
M&C: Do you feel you can help those in Canada, who might not realize that south of the border, there might be a ladder or a rope out there?
Carla Cooper: I think so. I think that in our own little world, we have.
Rob Cooper: We all need to understand that a lot of things are worth fighting for, and this is one of the ones, your child.
We talked a little bit about, you know, even though my son didn’t survive, in the end, he had received a lot of extra…we had got roughly another six months of time to spend with my son.
That’s a gift I got from somebody that…it’s the most precious thing I’ve ever gotten in my life, to have six extra months…kind of related to time, of what that looks like.
When you think of six months and you’re watching your son, every moment and every second is important. You start to think of those numbers.
I can’t remember what the number is, but if it was six months, it’s roughly 280,000 seconds. That’s a lot of time where we had the opportunity to say things to Bo. We left nothing unsaid, and it’s because of the great work that’s going on at NIH.
That’s what needs to come out of this, is that the NIH is an amazing place, and people need to know what’s going on there and that there are options. There are things that can be done.
I don’t know if there are any quick cures anywhere. I think they’re all hardworking people, like Dr. Fry, who will come up with ways to make things better for people that are dying. Canada needs to get its act together.
M&C: Dr. Fry, are you based in Bethesda?
Terry Fry: Yes. I went to medical school in Washington, DC. I trained in Washington, DC, in Baltimore at Johns Hopkins, and I’ve been in Bethesda my whole career.
One comment I’ll make. We were talking about this briefly before we walked over here. I think one of the questions that came up on the panel was the way that medicine is portrayed on TV.
I think one of the things that I have appreciated about the way that this show is done…I’m often reluctant to do these sorts of things because TV typically looks for a one to two minute soundbite, and I think what comes across loud and clear in the series is that that’s impossible with the complexities that go along with what Bo had and the treatments that Bo received.
You can’t tell that story in two minutes. It’s messy. It’s not always predictable. I hope that the way that this was done portrays that accurately because that’s the reality of what we do.
First In Human airs tonight at 9/8c on Discovery.