Health Disparities Among African Americans: When Apprehension Becomes Fatal

Onyx Contributor:  C. Sweat, Jr. MD

Think fast:  What is the worst breach of trust between the medical field and the African American community?  Odds are the first thing that came to mind is the Tuskegee Experiments.

SURVEY SAYS:

I intend to accomplish a few things with this article.  First will be a short overview of what exactly happened during the Tuskegee Experiments.  Second, I will go over what was learned from the experiment.  Lastly, I will delve into why it is important that we as a community not get bogged down by the horrors of the past with respect to this tragedy.  This will hopefully clarify some misconceptions that are currently circulating.  There will be a reference section at the end with links to the sources I used for the article, should anyone wish to follow up.

What Happened?

In short, back in the 1930s, a cohort of 600 African American men (399 with syphilis and 201 without) were enrolled in a study by the US Public Health Service (USPHS).  The goal of the study was to determine the progression of syphilis in African Americans [1].  At the time there was no known effective treatment for syphilis.  The USPHS study worked in conjuction with the Tuskegee Institute and recruited participants many of whom were illiterate sharecroppers from poor areas of Macon County, Alabama.  The participants were offered incentives such as free medical exams, travel to/from the clinics, free meals on exam days, and promises of survivor/burial benefits to their families after their deaths [2].  It is important to not that it is a common misconception that the Tuskegee Experiments involved injecting subjects with syphilis.  As explained above, the main issue was that the individuals who were already diagnosed with syphilis did not receive any treatment.

What Went Wrong?

1. Evaporation of funding.  Prior to the start of the experiment, the Great Depression began.  This drastically reduced the financial support the USPHS would receive from the Rosenwald fund.  As such, the treatment aspect of the original study was abandoned.  Simultaneously, there was some debate within scientific circles that there were possible racial differences between the effects of syphilis in African Americans as compared to whites.  It was Dr. Taliaferro Clark of the USPHS who suggested salvaging the study by converting it into a prospective study on the effects of untreated syphilis in living subjects [4].  This was the point where what began as a humantiarian effort transformed into an unethical, decades long breach of bioethics.
2. No informed consent.  Informed consent is when the risks and benefits of a procedure or study are explained to an individual and they are offered the opportunity to opt in or opt out.  In the Tuskegee Experiments participants were not told the purpose of the study, nor were they even told they were in a study at all.  Participants were also not given a choice of quitting the study at any point [3].
3. Deception.  Participants were not told they had syphilis.  They were also led to believe that their participation involved “special treatment” for “bad blood.”  Bad blood was a colloquialism for syphilis and several other ailments.  One of the recruitment fliers even read:”Some time ago you were given a thorough examination and since that time we hope you have gotten a great deal of treatment for bad blood.  You will now be given your last chance to get a second examination.  This examination is a very special one and after it is finished you will be given a special treatment if it is believed you are in a condition to stand it…REMEMBER THIS IS YOUR LAST CHANCE FOR SPECIAL FREE TREATMENT.  BE SURE TO MEET THE NURSE [3].”
4. Betrayal of trust.  Prior to the revelations about this experiement, the USPHS had actually established a good reputation with the African American community, using that good will generated from previous studies to help start this one.  One such study occurred in 1928 and was a joint venture between the USPHS and the philanthropic Julius Rosenwald Fund.  This study involved the prevelance of syphilis among 2000 employees of the Delta Pine and Land Company in Mississippi.  Of the employees, 25% of them tested positive for syphilis and were subsequently treated.  It was actually the success of this study which prompted USPHS to propose the creation of similar programs in several other counties in the south, one of which was Macon County, AL [4].
5. Treatment withheld.  While it was true that there was no ideal treatment when the experiement began in 1932, in the early 1940s, penicillin was shown to be effective in treating syphilis.  However, at no point during the study were participants with syphilis offered treatment.  Prior to the introduction of penicillin some of the other treatment methods included administration of compounds containing arsenic and mercury.  However, despite those compounds having mixed effectiveness, they were toxic in the long run [5].  Even worse, the USPHS went to great lengths to ensure that participants not receive treatment from outside sources.  This included making requests of the Alabama Health Department, local physicians, and even the US Army itself (for individuals who were drafted) that participants not be treated [3].

Why and when did it end?

The experiment was initially only supposed to last for 6 months, but ended up lasting over 40 years.  The beginning of the end occurred in 1972 when Peter Buxton, a venereal disease interviewer for the PHS, spoke to reporter Jean Heller of the Associated Press about the inner workings of the experiment.  Heller’s story told the tale of scores of participants who died, as well as how their wives and children were subsequently infected despited penicillin being a well-known treatment at the time [2].  This story in turn, led to an international public and media firestorm prompting multiple responses from several US federal agencies, most notably the US Health and Science Ad Hoc Advisory panel.  The panel found that many research protocols in the study were either ignored or flawed to begin with.   The panel ultimately concluded that the study was unethically justified and the study was officially ended in October of 1972 [7].

What was done to fix it?

In 1973 a class action lawsuit was filed on behalf of all of the men in the study and their families.  The case was settled for ≈ $9 million dollars.  Additionally, the US government started the Tuskegee Health Benefit Program which provides free medical and burial services to surviving participants, their wives, their widows, and children.  Also the Tuskegee Syphilis Study Legacy Committee successfully petitioned President Clinton to officially apologize for the study on behalf of the US government in 1996 [2].

What did we learn?

For Science:  We learned more details about late stage syphilis, more specifically the neurological and cardiovascular issues that occur.

For future research:  The Tuskegee tragedy highlighted the importance of proper informed consent when it comes to scientific studies.

About the African American Community:  The Tuskegee tragedy has done catastrophic damage to the relationship between the medical institution and the African American community.  Because of it, many African Americans are apprehensive of scientific studies, researchers, and doctors.

Health Disparities

Below is a chart listing the number of different health disparities between African Americans and their white counterparts.  I would like to draw your attention to a few key statistics in the below picture:

• 40% more likely to die from stroke
• 30% more likely to die from heart disease
• 40% more likely to die from breast cancer
• 8x as likely to die from HIV
• 60% more likely to be diabetic
• 2x as likely to undergo a leg/foot/toe amputation

So what exactly is causing this disparity?  Well the cause is multifacted and includes:  access to care, possession of health insurance, socioeconomic differences, genetic predispositions (a smaller factor than people would believe) and cultural differences.  So most of the causes above are relatively self-explanatory and you can probably come up with ways to fix them on your own.  But let us talk some about the cultural issues in our community and how they relate to this article.

When an earth-shattering breach of trust like the Tuskegee Experiement occurs, there are often major, long lasting effects.  After everything came to light, there was an understandable spike in the amount of mistrust the Black community had for the medical establishment.  So if you look at the health of the Black community from the 1970s forward, it did improve some as racism and attitudes of cultural superiority between whites and African Americans decreased.  Our people began to have better access to care, but the lasting stigma of Tuskegee is there, potentially causing them to avoid being seen by a doctor.

Heart disease, stroke, and diabetes are all heavily influenced by lifestyle choices, namely poor diet and lack of exercise.  They are manageable by making changes to that lifestyle and via taking medications to correct the harmful consequences (blood pressure medicine, diabetes medicine, insulin, etc).  Cancers on the other hand can have a myriad of causes, but one of the best tools that we have against cancer is surveillance through proper screening.

While it is difficult to quantify exactly how much travesties like Tuskegee affect overall health in the Black community, you can use your own anecdotal experience to try to gauge how much of the community is aware of what happened.  You have probably heard of elderly grandmas and grandpas avoiding the doctor for fear of being made sick.  You may have heard of Black people avoiding being organ donors because, “if you’re an organ donor, they don’t try as hard to save you.”  Ironically, I have asked some people who have made that claim whether they would want an organ transplant if they needed one and they all answered yes.

So what will it take for the community to heal?

1. Weigh the bad occurrences against the good ones.  One of the first steps in the path to our people’s healing is for us to be informed.  There are many examples of the medical establishment being unethical, some remote and some recent.  It is unfair to continue painting the entire establishment with the same brush based on a small number of actions, though small can be subjective.  From my observation people tend to expect much more perfection from the health care field than from many of the others. Clinicians and researchers are people too; some are good some are bad.  Try not to lump them altogether or you will likely lose your objectivity.
2. Take a more active role in your health and the health of those in your community.  About half of medical clinicians are primary care doctors.  These are the doctors that you go to for checkups, physicals, and whatever other ailments you have.  A large part of their job is preventative in nature, they give advice about lifestyle changes that can improve or eliminate existing medical problems and/or prevent them altogether.  Work together with your doc to maximize your health.
3. The medical establishment must strive to maintain transparency during research.  No matter how many medical breakthroughs there are, people tend to remember the negative things.  There is a great need for research into many areas of minority health.  If the establishment wishes to have willing participants, it will have to remain transparent, in addition to swiftly identifying breaches of trust and punishing those who are responsible where applicable.  many researchers work closely with community leaders when attempting to recruit participants for research studies and other public health outreach activities.

So I think some of the take home points are to remember that the experiment was wrong, the people doing it were wrong, but that does not mean that the medical establishment itself is wrong.  Some might argue the opposite since there were elements of the medical establishment and the government itself that were involved in the tragedy.  While this is true, just as people change, so do establishments, as they too are made of people.  Ignoring the capacity for change can lead to a gradual worsening of the health of our community as illustrated in the above graphic.

Thanks for reading my article.  Before I finish up I will insert a shameless plug here for Be The Match.  This is a website that allows you to sign up to be a bone marrow donor for someone who has leukemia and needs a transplant.  This is important because bone marrow matching is more complicated than regular blood typing.  There are many minorities out there with rare bone marrow types that die because of the lack of minority donors.  So go sign up even if you are not a minority, because the recipient will be someone else’s kid or maybe even one of your own friends or family.  Ok I am off my soapbox.  Good day and God bless.

References

1. CNN article of Tuskegee and Guatamala
2. Tuskegee Syphilis Study Overview
3. Racism and Research:  The Case of the Tuskegee Syphilis Study
4. Dartmouth Overview
5. The Introduction of Penicillin for the Treatment of Syphilis
6. Tuskegee:  From Science to Conspiracy to Metaphor
7. Tuskegee Experiment Timeline

Images

1. African American Health Disparities Compared to Non-Hispanic Whites