CANCER, CLINICAL TRIALS AND THE AFRICAN-AMERICAN PATIENT
- curtisnycqueens
- 9 hours ago
- 5 min read
Curtis Abraham
In 2024, former US Defense Secretary Lloyd Austin initially kept quiet about his hospitalization at Walter Reed National Military Medical Center in Bethesda, Maryland and the reason behind it (complications following a minimally invasive surgical procedure conducted the previous year to address his prostate cancer) from the Congress, senior administration officials, and even his boss, former US President Joe Biden! According to a Washington Post article, this visit was due to complications following a minimally invasive surgical procedure conducted the previous year, to address his prostate cancer.
The first African-American Secretary of Defense, Austin’s silence about his cancer prognosis is not unique among the nation’s minority black population-as a matter of fact it’s the norm. In 2020, Hollywood actor Chadwick Boseman of Black Panther fame kept his stage three cancer of the colon hidden until it finally killed him in August that year. But these are just some of the high profiled examples of the secrecy surrounding cancer diagnosis in the African-American community (even to one’s own family when so much of cancer is genetic).
Black Americans have the highest cancer mortality rates and poorest survival and are more often uninsured and underinsured compared with other ethnic groups in the US. In my opinion, one key reason why they, like Boseman, are succumbing to cancer more than other groups in the US is largely due to the historical injustices experienced by African-Americans being used as guinea pigs in medical experiments, without their consent or knowledge.
J. Marion Sims conducting his gynecological experiments on African-American women
An unsuspecting participant in the infamous Tuskegee Syphilis "Study"
What would be labeled today a crime against humanity, started during the slavery era in the 15th century and continued well into modern times. The most infamous of these episodes are the painful gynecological experiments on enslaved women and girls by the “Father of American Gynecology” James Marion Sims, the Henrietta Lacks story whose cancer cells were stolen to create the HeLa cell line while being treated for cervical cancer at Johns Hopkins Hospital, and the Tuskegee syphilis study that saw hundreds of poor African-American sharecroppers from Alabama, whose consent was not given, left infected with syphilis for decades, which resulted in numerous unnecessary deaths for some and years of declining health for others.
One of the major consequences of this tragic legacy for America’s Black community has been a woeful lack of participation in clinical research and clinical trials for new cancer drugs and innovative treatment regimens (during clinical trials to develop a safe and effective vaccine for the recent COVID-19 pandemic, only a single digit percentage of African-Americans participated overall).
Clinical research is a branch of medical research that involves people and aims to determine the effectiveness and safety of medications, devices, and diagnostic products intended for improving human health by finding new and better ways to detect, diagnose, treat and prevent disease.
Such experiments were not only driven by the quest for scientific knowledge but were based on racism and discrimination. In addition, there were also social and economic motives. This racist legacy continues to haunt the black community in the US and is at the root of their centuries old mistrust of clinical research and the US medical establishment generally.
However, African-Americans can greatly improve their health outcomes particularly when it comes to the early detection and treatment of cancer. But in order to do so, they need to cast off the emotional and mental shackles of past medical abuses including the historical inequality of health care (as well as the fear and denial) and fully embrace all medical advance and medicines on offer in order to fight and cure their cancers, and to extend the research life of these innovative drugs and therapies.
But in order to put the past firmly behind them and re-establish trust in the American health sector, specifically the area of clinical research, there are certain developments that they need to know. For instance, much has changed in medical protocols over the past half century. The dynamics between human subjects and the institution conducting clinical research has been transformed for the better. Assuring patient rights and the high ethical standards are today required of any organization, university, or pharmaceutical company that conducts clinical trials.
The Belmont Report, for example, was a turning point in human subjects’ research. Basically, it identifies basic ethical principles and guidelines that address ethical issues arising from the conduct of research with human subjects.
Additionally, modern medicine has made monumental strides in treating and even curing cancers, and such success is largely due to clinical research (clinical trials can also help prolong life). This is the reason why participation of black cancer patients in clinical trials is so crucial. Their presence has helped in the development of anti-cancer drugs, particularly cancers to which they are vulnerable. For instance, during the 1990s, the National Cancer Institute (NCI) sponsored a clinical trial to investigate if Tamoxifen, an anti-cancer drug used to treat certain types of breast cancer, could also be used to reduce the risk of breast cancer in the first place.
They enlisted the help of Howard University Medical Center (Howard is one of the most prominent historically black institutions of learning in the US). Howard was able to enroll the highest number of black women in the study using the strategy of entering various neighborhoods in the Washington D.C. area and speaking with a cross-section of society there including community leaders, church personnel, families and individuals. When the study was completed, the results showed that Tamoxifen did reduce the risk of breast cancer in women who were already at high risk by almost 50% compared to those who took a placebo. Further investigations using different techniques confirmed that breast cancer risk reduction were achievable using Tamoxifen.
Consider some of the medical mysteries surrounding some specific cancers affecting minorities that clinical research and clinical trials involving African-Americans might help solve. For example, multiple myeloma, a type of bone cancer that impacts Blacks in America at a much higher rate than Whites. Twenty percent of all new cases multiple myeloma is diagnosed in Blacks. Scientists have some clues as to why that may be, but the answer is not very clear. Biomedical researchers need the participation of Black patients to solve this riddle.
Another cancer puzzle relating to African Americans is triple negative breast cancer. For every White woman diagnosed with this condition, there are two African-American women diagnosed with the same cancer. In other words, Black women in America are twice as likely to suffer from triple negative breast cancer as White American women. There are no clear answers why this is the case, but clinical research might just be able to unravel the mystery.