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The Voice of the Black Community


Matter of life and health
Specter of Tuskegee impacts clinical trials
Published Thursday, June 6, 2013 9:12 am
by Amanda Raymond

African Americans still can’t get over the Tuskegee Experiment.

Four decades after the infamous study on syphilis’ impact on black men ended in rural Alabama, mistrust of medical science resonates in the lack of African American participants in potentially life-saving clinical trials and studies.

In sickness and health, clinical trial participation is important because it is essential for the research and development of treatments for illnesses and diseases. African Americans and Caucasians react differently to many ailments and treatments, so what works best for whites may not work at all for blacks.

Denise Goodwin-Hockaday, director of the American Cancer Society’s South Atlantic Division based in Charlotte, said clinical trials are important for the general health of society.

“Clinical trials offer a wonderful opportunity for new treatments to become available to the masses,” she said. “If more [African Americans] were involved in research, in general, in clinical trials, then there would be more data out there about how we react to certain treatments.”

African Americans are affected by cancer, hypertension and heart failure at a higher proportion than whites, but are underrepresented in clinical trials for these conditions, according to an article published in the American Journal of Surgery by Drs. Richard Branson, Kenneth Davis Jr. and Karyn Butler.

With many diseases, blacks are often diagnosed later, experience faster progression of the disease and die younger. Little is known about why or how to modify treatments to best suit African American needs.

When it comes to cancer research, Goodwin-Hockaday said black participation would be beneficial for personalized treatment plans.

“Right now there’s not a lot of data out there even on why our mortality rates are higher for certain cancers,” she said. “And so having that kind of information would help researchers design treatments that are more consistent with what our specific needs were as patients.”

You can’t talk about African Americans and healthcare without mentioning the infamous Tuskegee Experiment, a fiasco many blacks still keep in the back of their minds during encounters with the medical community.

In 1932, before the time of ethics committees, researchers with the U.S. Public Health Service chose to study the progression of untreated syphilis in poor African American men. The nearly 400 test subjects were not told what the researchers were studying, if they had syphilis nor given access to treatment once it was available upon the discovery of penicillin as a cure in 1947. Scores of men in the study died and many of their wives and children were infected. The program was shut down in 1972.

Today, because of the fallout from Tuskegee, Goodwin-Hockaday said she has had trouble getting African Americans to participate in this year’s cancer prevention study in Charlotte, which is limited to data collection and a blood sample. She said getting blacks to take part in a clinical trial, where they actually had to take medication, would be even harder.

“I just think we always feel like we’re being experimented on,” she said.

Before treatments are approved for widespread use, they are ultimately tested on sample groups of people for effectiveness and potential side effects. Goodwin-Hockaday said she used a variety of tactics to increase African American participation in her study that could also be used in clinical trials, including utilizing African American-oriented media, community organizations and churches.

“When you deal with our community, it’s going to have to be grassroots,” she said.

Underrepresentation of the African American community in clinical trials is an issue where both sides are partly to blame, health advocates say. Researchers need to find a way to change the stigma African Americans hold when it comes to healthcare, and African Americans need to find a way to get beyond the past.

“The health industry has some work to do in terms of building trust with the African American community, but also African Americans bear some responsibility to take care of themselves,” Goodwin-Hockaday said. “You’re not only helping yourself, you’re helping future generations.”


You say that patient protections are NOW in place but are they? --- if hospital/physician profits are impacted negatively from these protections?

We have to remember that our Health Care Industry is all about profits as well as good medicine and that all patients are "product" for profits for all of the private for-profit partners of government Medicare/Medicaid. .

Trials, of course, do not NOW discriminating against minorities as they are funded by tax-payer dollars, but it is perhaps the experience of the minority who experienced the betrayal of their trust in government AND physicians that does account for their lack of participation in trials.

I would have never dreamed that I would be in minority position as "elderly" and "disabled" because of my great age and that under-the-radar public policy would put me and other elderly/disabled persons in danger within so-called public hospitals who might consider that "I was better off dead" if my government Medicare and Tricare-for-Life Insurance do not reimburse them for my care.

Observation Status (for which HHS is being sued) and unilateral default DNR Hospital Code Status are often being misused against the minority I represent in order to cap the costs of treatments that will not be reimbursed under protocols of Medicare/Medicaid and the private insurers.

This is a direct reaction to government reimbursement protocols that one would think the government would anticipate!

I feel betrayed and distrustful of hospitals/physicians and my government! Why wouldn't I?

Posted on June 12, 2013
Wedler et al (2005) and others have dispelled this myth. Please do your research before disseminating inaccurate information.
Posted on June 10, 2013
Studies have also shown that even when minorities are not provided with suggestive buzz words like "Tuskegee" and "exploitation" regarding medicine and clinical research, when the power of suggestion is not in play, many people simply don't have the facts about the infamous syphilis study. Many in the community hold on to myths and misconceptions. Tragically, this leads to worse outcomes by keeping minorities on the sidelines of progress. Ignorance kills. In the case of health education, "less" is definitely not "more."
Posted on June 10, 2013
This kind of press is exactly what we DON'T need. This is an example of how we too often perpetuate the past. Nowhere is this perception of distrust TODAY supported by data. ?I just think we always feel like we?re being experimented on,? she said. This is an irresponsible and reckless approach, especially if we are serious about changing the perceptions and getting minorities involved in clinical trials. Before we spew this garbage, we have the obligation to be accurate about it. Yes, there is a HISTORY of distrust, and yes it was earned. But a lot has changed. Patient protections are in place, and more transparency exists now. If minorities are unaware of this- if they're unaware of the need for representation in clinical trials- that's entirely different. And it means we're just not doing a good job at awareness, education, and engagement. It also implies an obligation on the part of industry to design trials that are more inclusive in their criteria. And plenty of data exists to dispel this myth that "Tuskegee" rages on. Just Google the word "access" with "minority inclusion in clinical trials."
Posted on June 10, 2013

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