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Dr.
Whitten talks about organizing the community program
on sickle cell disease in Detroit
Well,
I organized a community program on sickle cell. My major
interest in medicine has been sickle cell disease. We're
in our 27th or 28th year of the program that I developed
here at the center. I'm still chairman of the board,
major leadership role there. And, we own the building.
We have about 26 employees and we have a state contract.
We're
the only community organization that has statewide responsibility
for sickle cell programs. I started this program in-it's
been twenty-six [years] or so. We didn't have the total
responsibility until about ten years ago. But we've
had a program that started in Detroit, and then moved
out-state a bit, and now it's statewide. It's supported
by the Department of Public Health, now the Department
of Community Medicine and Community Health, and United
Way. We have a budget of about a million dollars now
for our program. I was a major organizer of a National
Association of Sickle Cell Disease and served as its
president and leader for 20 years, and now I'm president
emeritus. I've been involved in a number of community
organizations.…
I:
The name of your organization that is running the sickle
cell program?
R: Yes,
it was Sickle Cell Detection Information Center, but
we changed the name of our national organization, which
was the National Association of Sickle Cell Disease.
Now it's the Sickle Cell Disease Association of America,
Michigan Chapter.
I:
One of the questions I wanted to get back to, you talk
about sickle cell, and knowing that's your specialty.
What did it take to become tops in your specialty?
R I'm
not tops in my specialty. I want to be very clear. I've
done relatively little research. I've done some research
in sickle cell disease. I've been a major organizer
of programs. One of the things that impressed me when
I came over to do a pediatric hematology fellowship
was that we had psycho-social support programs, comprehensive
programs for other hematological diseases, but not for
sickle cell. That was one thing that impressed me. That
stimulated me to develop the sort of programs that I've
developed here and I've been a major factor in developing
a national organization and have done a lot of consulting
with our member organizations…
I've [also]
developed a lot of educational materials and approaches
to problems. Our local program is a model program for
the country, in terms of community organization. I also
directed a comprehensive sickle cell center at Wayne
State University. Our organization has a subcontract
with the medical school and I direct the program as
a sort of consortium. We had investigators from Wayne
[State University] and the University of Michigan as
a part of the center. We had a grant for about 19 years
from the NIH [National Institutes of Health].
I:
What got you started, what sparked your interest in
the sickle cell anemia field?
R: What
I tried to describe to you a few moments ago, that I
found at Children's Hospital of Michigan other hematological
problems were being dealt with differently than sickle
cell. Sickle cell patients weren't getting the benefit
of everything we knew. They weren't getting the psychosocial
support that they needed, that type of thing. That's
what stimulated me to get into sickle cell disease.
I:
Then, why do you think that occurred?
R: Well,
to some extent it's a black disease and sort of was
not dealt with as other problems might have been dealt
with. But there was a great need for it and that's what
I recognized and that's what really stimulated me. I
think my whole sickle cell career has been built around
that recognition that we needed to have organization.
We needed to have social support systems. We needed
to have our communities involved and that's what I set
out to do, both locally and nationally.
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