Dr. William Carter Jenkins APHA Opening Session 2010 Part 1

Uploaded by aphadc on 09.11.2010

Jenkins: Thank you, thank you. I don’t have any data to present today. I’m going to
do what the old men in the fishing village I grew up in do and that was to tell a story.
So that’s what I’m going to do. This story also starts in 1895 and in Atlanta, Georgia.
Booker T. Washington gave the most, perhaps the most important speech in black American
history. In it he accepted segregation on the one hand but requested financial support
for his Tuskegee experiment. The Tuskegee experiment was the most comprehensive economic
development program for African Americans in the history of this country. It is so unfortunate
that out of the incredible story there that the one bad thing that happened in that experience
is the one thing that people remember. The Tuskegee experiment laid the ground work for
public education in America. It saved the agricultural system. This is George Washington
Carver as a young man with his research team. It also started the Negro Health Movement
and if you want to know how to work in communities look at the Negro Health Movement. It could
start at the National Medical Association, National Bar Association, National Nurses
Association and the health interventions that it created was inventive and included the
community at all levels. However, as you know, health impacts on economic development and
when it was found that 20 about 25 percent of reproductive age persons in that county
was positive for syphilis, it became necessary to start an aggressive medical intervention
with the use of mercury and arsenic. Little problem with mercury and arsenic as some of
you might know. But even though the program was substantially successful, the Wall Street
crashed as you might relate this to what’s happening today and support for those medical
programs weaned and so they went to the one place that could provide that support, the
federal government, the Public Health Service, my old organization. And that organization
-- Tele Farah Clark who was the director of the venereal disease branch at the time -- said
“Well, if these men are not being treated, let’s follow them for a year and see what
health impact it has so we could justify rebuilding the treatment program.” And so they decided
to follow the men without treating them for syphilis for that first year. They recruited
men into the study. I’m privileged to say these are the men that in my years at CDC
also had the opportunity to take care of. Um, they used the church to recruit people
into the study and once they have recruited the six hundred men in the study, three hundred
with syphilis and three hundred without. Nurse Rivers or Mrs. Lori, as I know her, would
take physicians from CDC every year. They would introduce them to the men and interview
them. They would take assessments right there, collect the data right in the field. Um, they,
it was a very well-managed program. Six hundred men or a little more actually followed for
forty years with a loss to follow up of 17 percent. The reason the Tuskegee study was
so unethical it was impart due to the fact it was so successful, so well managed. Think
about that when you’re working in a community. So the study was criticized and they were
concerned about whether the men were being treated so they asked local physicians not
to treat the men as long as the study was going on. Um, and that continued to happen,
even when World War II started and men were going into the military, they got the men
exempted from the military so that they wouldn’t be treated for syphilis. After penicillin
was established as the treatment for syphilis, the men were denied penicillin so that they
could be followed to death. Things to start with a good purpose could end up being a very
bad thing. It is important to understand that. So around 1968, with Peter Buckson in California
and I’m in Washington, editor of the Drum Newsletter, trying to bring some attention
in the study seeking an end -- those efforts were rebuffed until Peter got a report with
AP who was able to write that first article and after that, there was a lot of discussion.
Ted Kennedy held hearings on the study and then the study ended in 1972. 40 years, 40
years without being treated. I’m sorry. This study changed the way we do medical research
in America and that has been a good thing. But there are some issues that still remain.
Racism remains a major determinant of health and health care in America. And one of the
things that’s troublesome to me is that Americans work very hard to pretend that it
no longer exists. Afraid to even use the word racism on national television. So I want you
do to something for me, I just want you to say the word. It will be okay, it will be
okay. Say racism. Speakers: Racism.
Jenkins: Thank you. The earth did not tremble. The building did not fall down. It’s okay
to use the word. Because I really do believe there’s no racism, no race problem in America.
There’s not a race problem in America. There is a racism problem in America. It is the
only health condition where we want to study the symptom, race, rather than idiologic factor,
racism. It’s amazing to me as an epidemiologist -- to solve health disparities we must also
study racism and not just among European Americans. It is a mental illness that affects all people.
Let me tell you a little thing about what’s happening today with regards to community
participatory research. I want you to understand that the Tuskegee study was in fact a community
participatory program, research initiative. It felt and met all the criteria of community-based
project. And in addition to that, there’s no study which appreciated cultural confidence
more than that seen in Nurse Rivers and how she got these men to continue to participate
in this conference. The notion of the community participatory research that all of us wanted
us to push for in 1991, as a panacea is a mistake. It is an important thing to do but
it will not solve all our problems in this area. A good start can have a bad end. To
the extent the community participatory research is getting people into clinical trials or
assessing genetic differences alone, the ethics must be questioned.