FEATURE
At the time of going to press, we learned that Dr. Kohrt lost his battle with hemophilia on February 24, 2016. Our
thoughts and prayers go out to his family, friends, and colleagues. Please look for more about Dr. Kohrt’s life, including
his involvement in ASH, in the next issue of ASH Clinical News and in The Hematologist.
ASH Clinical News: You were diagnosed
with hemophilia at a young age. When
and how were you diagnosed?
Holbrook Kohrt, MD, PhD: For most
hemophiliacs, the diagnosis occurs after
having a bleeding episode as a very young
child. For me, at about two months old, I
was having multiple episodes of bruising and joint bleeding, and they actually
thought that my mother was abusing me.
My hemophilia diagnosis was made
when doctors discovered that I had the
spontaneous mutation, an inversion in
the Factor VIII gene. There were no risk
factors and no reason to suspect that I
had hemophilia – hence, the allegations
of some type of physical abuse were not
viewed as absolutely crazy. Unfortunately,
that process took a toll on my mother.
“As a physician
and a patient,
one always remembers the
power and the
capacity to be
trusted. ... We
have to respect
that.”
—HOLBROOK KOHRT, MD, PhD
How did your diagnosis affect your
childhood and the rest of your family?
The diagnosis of any chronic medical condition, where there is need for additional
attention and focus, creates a complex
environment for both a child and his or
her relationship with siblings and parents.
My father, as a pediatrician, felt like he
should have been able to make the diagnosis earlier. He was also out there trying
to help heal kids while his own child was
home with frequent joint bleeds; I think
he wanted to be able to take away the pain
of the joint bleeds and to be able to help
me more, as a physician should.
My mother and I spent an incredible
amount of time together. The hospital
I went to was three hours away, so we
would have six-hour day trips in the car
to visit the hematologist. That was a lot
of bonding time, and we have remained
close ever since.
ASHClinicalNews.org
Growing up, my three siblings probably
felt a little bit slighted because they weren’t
getting as much attention – like when I
was hospitalized with hepatitis C after a
blood transfusion and the joint destruction
caused by so many repeated joint bleeds.
Now, though, we are incredibly close.
It is impossible to get a word in edgewise
when we get together. In the end, it has
been something that brought us together
and strengthened our bonds.
American, and my second was Caucasian. I
told my second hematologist, who became
chief of staff at the Children’s Hospital of
Philadelphia, that he wasn’t allowed to be my
hematologist because he wasn’t black. I think
this is true for adults, too. We presume that
those people are out there as our best advocates. Therefore, we, as doctors, should always
treat our job with that much respect. ●
What initially prompted you to become
a doctor? What field did you envision
going into?
Since my dad was a pediatrician, I spent
time in his clinic on the weekends. I always
thought I would end up in some form of
medicine. It was my dream as a kid. I considered going into pediatrics because that’s
what my dad did, and he made it seem
like that was the only form of medicine.
Unfortunately – or fortunately – he did not
get his wish. When I was in medical school,
I realized the path I wanted to go down was
hematology/oncology.
Lukas D. Wartman, MD
Where does your health stand today?
What is your current treatment regimen?
I have severe hemophilia and have
received most standard therapies, but I
recently developed an inhibitor to Factor
VIII. I have multiple treatment options,
but, unfortunately, none is working.
I am on an experimental therapy,
ACE910, that is only available through a
very specific law in Belgium. The “urgent
case law” allows a physician there to write
a prescription for an investigational drug
still in development. That is how I get my
care today, but it means I have to go to
Belgium once a week to receive treatment.
I have been living outside of the United
States since May 2015 and dealing with my
inhibitor since August 2014. It has been a
year and a half, and it has been challenging.
How would you say your ongoing experience with hemophilia has shaped you
as a physician?
As a physician and a patient, one always
remembers the power and the capacity
to be trusted. I think that patients come
in the door and trust us immediately; I
came into my own physician’s room and I
trusted him immediately. We have to respect that because it is a type of trust that
is given to us completely and blindly.
It helps me maintain perspective that
what I do has great weight in patients’
lives. I need to put in 150 percent because
what I do will have a clear impact.
It is amazing how children develop
relationships with a specific person who
personifies the role of “doctor.” That was true
in my case. My first hematologist was African
Lukas D. Wartman, MD, is an assistant
professor in the Department of Medicine at
Washington University School of Medicine in St. Louis, Missouri. In 2005, as a
fourth-year medical student, Dr. Wartman
was diagnosed with acute lymphocytic
leukemia (ALL). Since his diagnosis, Dr.
Wartman has undergone several rounds of
intensive chemotherapy, treatment with a
targeted therapy, and two hematopoietic
cell transplants. As h