By Jeffery DelViscio, Pedro Rafael Rosado, Kriston Lewis, Robin Lindsay and Abe Sater
Jim Wilson/The New York Times
When The Doctor Is Also a Patient: Holbrook Kohrt, a hematologist, talks about his own experiences as a hemophiliac.
Dr. Holbrook Kohrt is a physician and researcher who has spent a lifetime as a patient. A 36-year-old hematologist at the Stanford University School of Medicine, he has an extreme form of hemophilia, the bleeding disease. We spoke about his life and work for two hours in person, and later by telephone. An edited and condensed version of the conversations follows.
Hemophilia is thought to be hereditary. Do other members of your family have it?
No. None. When I was born in 1977, my parents didn't even know I had it. After circumcision, I bled profusely. And then, during the first month of life, I kept bleeding. Though my father was a pediatrician and my mother a nurse, they didn't even consider hemophilia.
They took me to the hospital, where the doctors thought my mother was abusing me — I had all these unexplained bruises. After some testing, it was determined that I had a very unusual type of hemophilia that comes from a random mutation.
Once that was known, my parents became centered on taking care of a child with severe hemophilia. So I grew up in a room that was padded so I wouldn't bleed to death if I fell. I wore a helmet every day. There were frequent trips to the children's hospital for emergencies, three hours from where we lived, in Lake Wallenpaupack, Pa.
Was it possible to have a normal childhood under those circumstances?
I wouldn't say so. We lived in a small town. Many people there did not understand about hemophilia.
To stay alive, I had to have transfusions of a blood product — clotting factor — every other day. We had neighbors who were members of a religion that opposed transfusions. People from that family would ring our doorbell and scream that we were going to hell.
On the school bus, the others made fun of me. This got even worse during my adolescence because people first began reading about AIDS. To uninformed people, AIDS and hemophilia were the same thing.
To make the situation even worse, large numbers of hemophiliacs developed H.I.V. At the beginning of the H.I.V. epidemic, the blood banks didn't test their donors for the virus. To stay alive, hemophiliacs often require transfusions of the clotting factor. It's a protein that our bodies can't make naturally, and it's made up from the blood of hundreds, perhaps thousands of donors. Well, if one of those donors had H.I.V., it could be transmitted to anyone who received the blood product. In those years, of the severe hemophiliacs, 95 percent died after contracting H.I.V. from transfusions.
I remember, from the time I was 8 years old, I went to this special summer camp for hemophiliac children. The first year I attended, there were about 200 campers. Eight years later, they stopped having the camp altogether because there were just two of us left.
I think that there's something very strong about the fact that I was a teenager at the time when all this was happening. When young kids encounter death, you don't understand the full magnitude of it. You experience it, but then you feel like life goes on.
Why didn't you contract H.I.V. like the others?
I was lucky. I did, at the age of 13, get hepatitis C, from contaminated blood. I was in the hospital for two months. And then something truly fortunate occurred. I had what's called a "full antibody response," which means that my immune system naturally cleared the infection.
Today, happily, the blood products hemophiliacs take are safer. Scientists have figured out a way to produce an engineered version of the clotting factor. That means that we don't have to go to hundreds of human donors for blood anymore. They take the protein we need, insert it into the ovary of a tiny hamster and make the clotting factor from that.
Did your childhood experiences lead you to become a hematologist?
Oh, absolutely. In my childhood, it was doctors who I related to more than my peers.
The thing that really attracted me, though, was seeing translational medicine happen in my lifetime. By the time I applied to medical school in 2000, the H.I.V. epidemic had become a chronic disease in the developed world. Breakthroughs in biochemistry promised the same for hemophilia. I wanted to help with that.
As you recall, I had this experience where my own immune system had naturally cleared a hepatitis C infection. I wondered if there might not be ways to get the immune system to respond to cancer in that same way. Today, that's the focus of my research.
Tell us about your research.
A few years ago, I joined the Stanford laboratory of Ron Levy, who developed the antilymphoma chemotherapy Rituxan. My focus there has been to try to get it to work better against non-Hodgkin's lymphoma by adding Rituxan to another antibody in the hope of finding a combination that attacks the cancer.
The experiment has been to inject mice with lymphoma, go down a couple days later, give the mice Rituxan, and then a couple days later, give them whatever molecule I choose. About four years ago we did this, and we had a whole cage full of mice where the tumor completely melted away.
Recently, we gave that combination to a human patient. And now, almost a year later, she has no evidence of the lymphoma whatsoever. Of course, one patient isn't enough to make for a clinical trial. So now we are going for full-scale trials to show that it is not only effective for lymphoma but, hopefully, for other cancers, too.
You've been doing a clinical trial in Cuba. Is that for the same therapy?
No. In Cuba, we've been taking little portions of cancer cells — the peptides — and vaccinating patients against them. Actually, we've taken this idea and applied it to cervical cancer in Cuba, ovarian cancer in Australia, leukemia in Europe, and at Stanford.
Our goal is to ultimately use this approach to teach transplanted bone marrow what the cancer looks like so when cancer attempts to come back, the immune system is smart enough to recognize and attack it.
Why study this in Cuba?
There is a large population of underserved patients with cervical cancer there. They had doctors there who wanted to work with us. Right now, we're in Phase 1 of trials there, which means that we're testing for safety and the immune response. Patients who already have cancer receive the vaccine, and we'll see if the immune system responds and mobilizes.
Is there anything about your own condition that pushes you forward?
Oh, yes, but it's more philosophical than physical. I realized early on that I have to do everything I want to do as soon as possible because I didn't know what the future could be. That's been useful in terms of the research and the science. I have the stamina and the commitment to keep trying things.
It's not been so good in terms of personal relationships. I've been married twice. But that knowledge forces me to take the time I have to give the maximum to science and to my patients. Research requires great tenacity. When you've had a serious illness since infancy, you know to make the most of every single day.
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