Well, here we are. The place where no one wanted to be. COVID-19 deaths in the U.S. have surpassed 200,000 Americans. Black Americans continue to experience the highest COVID-19 mortality rates nationwide, are almost five times more likely than White Americans to be hospitalized with COVID-19 and twice as likely to die from the disease. Despite those facts, Black people are not participating in the COVID-19 vaccine trials in large numbers.
There’s a lot of discussion about the lack of participation by people of color, particularly Black people, in the vaccine trials, or in research with human subjects in general. CBS News reported that while Black people make up 18 percent of the nation’s population, they only represent 11 percent and 16 percent of Pfizer and Moderna’s vaccine trials, respectively. Both pharmaceutical companies are in phase three trials where volunteers test the effectiveness of the vaccine.
Let me share some insight from my perspective, on why there may be a low participation rate, for those of you who see it as a problem (not everyone does, you know).
As a people, Black Americans are not strangers to the disparate impact we face from infectious disease on Black Americans. People of color–minorities–are often affected by infectious diseases disproportionately compared with their White counterparts.
- In 1793, Black Americans were singled out–erroneously–during Philadelphia’s yellow fever epidemic. Because Black Americans were thought to have immunity, they were forced to be frontline workers, nurses and other “essential” jobs, even though they died at a similar rate to that of White Americans. The COVID-19 situation sounds similar to this, doesn’t it? Except that the disproportionate death rate for COVID-19 among Black Americans makes today, in its own way, worse.
- In the 1918 flu epidemic, Black Americans suffered disproportionately from the disease, mostly as a result of systemic racist practices. Because of segregation, there was inadequate health data gathered on Black Americans, leading to inaccurate reporting of the infection and death rates for Black people. Because Black people appeared to have lower infection and death rates, they were (again) thought to be immune from the influenza virus, which while not true, prevented their access to adequate health care. The truth was that when Black Americans were infected with the flu, they died at greater rates than Whites. This should also sound very familiar.
Now here we are, just over 100 years later, dealing with pretty much the same sh*t.
Because of structural racism, Black Americans, along with Latinx and Indigenous Peoples, experience greater infection and mortality rates from COVID-19, from the elderly down through children of color. As I have written in previous blog posts, the fact is that the reason that pre-existing conditions, which make COVID-19 more deadly, are so widely prevalent is because of racism. Frontline workers, essential workers–including grocery store clerks, farmworkers, transportation workers, environmental sanitation workers and others are, for the most part, people of color. The data gathered around the disparity in COVID-19 testing, treatment and deaths, although incomplete, speaks volumes and is reminiscent of the historical practices described above.
Now if that doesn’t provide enough reasons for lack of participation, here are a few more.
- Lack of Informed Consent. Lack of Respect for People.
- Let’s start with Henrietta Lacks and her cancer cells. Henrietta Lacks was diagnosed with cervical cancer at the Johns Hopkins Hospital in Baltimore, Maryland, and died in 1951 from the disease. She was 31 years old. Doctors took cell samples from her tumor and gave them to a researcher without her knowledge or consent. Her cells, named HeLa cells, turned out to be immortal–they survived and reproduced, and were shared with other scientists, although no money was given to Ms. Lacks’ family for their use and distribution. Everyone who ever took a science course or biology lab is familiar with HeLa cells. They have been used in research on cancer, immunology and infectious diseases, most recently in vaccine research on COVID-19. The main issue regarding HeLa cells is that they were taken and shared, as was her name, without Ms. Lacks’ knowledge or consent (which was legal at the time – because she was, after all, Black), using them was unethical and continued use perpetuates an injustice. Though White people have a hard time seeing it, science can be racist too, and here is your proof.
- I am from Alabama, with all of the nuances of what that means for a Black woman in the south. Of course I heard about the “Tuskegee Experiments” –officially known as the “Tuskegee Study of Untreated Syphilis in the Negro Male” growing up. All Black children knew about it. The study was described as one “to record the natural history of syphilis in hopes of justifying treatment programs for Blacks.” In a nutshell, the study initially involved 600 black men – 399 with syphilis, 201 who did not have the disease. There was no informed consent–and actually the participants were never told they had syphilis and instead were lied to and manipulated to think that they were being treated for “bad blood”, whatever the hell that is–although it is described as including syphilis, anemia and fatigue. These Black men were left to suffer the ravages of the disease despite the advent of a cure, and in turn could have passed on to their partners, along with a study that was supposed to last for six months (which is six months too long) lasted 40 years. For their participation, they received free medical exams, free meals and BURIAL INSURANCE, because syphilis left unchecked will most definitely lead to death. The study was unethical, extractive, racially focused and illegal. Is there any wonder why there is suspicion and mistrust? By the way, The title says it all, only there was no treatment program. And shouldn’t the fact that they were HUMAN be enough justification for treatment? Again, naked racism in the name of science.
- Earlier this week, my colleague Paula Garcia wrote an excellent, MUST READ blog post on allegations of ICE forcing sterilizations of migrant women. That blogpost provides a number of examples where medical procedures have been forced on people–people who were considered by those in the government or medical professions to be expendable or “less than” human or where the purpose was to prevent pregnancies and a continuation of the race(s). Ethnic cleansing or genocide–you choose. Putting science into the service of racism.
- Misinformation, disinformation, mistrust, distrust related to how the COVID-19 epidemic has been handled. There have been numerous studies on the possible relationship between particulate matter (air pollution) and susceptibility to COVID-19. In the past, in describing how COVID-19 is spread, the Centers for Disease Control and Prevention (CDC) concluded that air was the main route of transmission. Science and scientific evidence clearly support that conclusion. However, the CDC recently revised its guidelines downward by suggesting that it was merely possible that COVID-19 is spread via airborne transmission. This change, which seems to be a result of political pressure rather than the result of new data or findings, is going to lead to more COVID-19 infections, particularly in communities of color, in schools and in situations where masks may no longer be required or may become optional. Am I paranoid? If I am, don’t you think I have a reason to be?
- Medical Mistrust. Remember when the French scientists talked about going to Africa to conduct research on a COVID-19 vaccine? One of the researchers, who happened to be the head of intensive care at a hospital in Paris, stated “…shouldn’t we be doing this study in Africa, where there are no masks, no treatments, no resuscitation?” “…as it is done elsewhere for some studies on AIDS. In prostitutes, we try things because we know that they are highly exposed and that they do not protect themselves.” The same physician had questioned whether the study, which was planned on health care workers in Europe and Australia, would work because they had access to personal protective equipment to protect them from COVID-19. What in the actual hell is going on, you ask? Well, Black people are still considered by some to be a never-ending supply of testing subjects. And they know it.
- Other Reasons for Lack of Participation by Black Americans and others in ‘trials’ for COVID-19 and other research issues.
- Sub-par medical treatment generally
- Lack of access to COVID-19 testing, even when symptoms exist
- Lack of access to COVID-19 treatments in hospitals, people are turned away and sent home to battle COVID-19 on their own
- Lack of accurate data on COVID-19 infections and deaths in the Black community (and Latinx and Indigenous communities)
Given everything I have mentioned here, which isn’t nearly inclusive of everything that has occurred, is there really any wonder why many Black people don’t want to be used as guinea pigs or laboratory rats, particularly when initial questions about susceptibility have not even been addressed? There is a legacy of mistreatment in medical trials and that contributes to the lack of participation by Black people.
At the same time, Black people must consider the ramifications of non-participation–particularly when it comes to ensuring the efficacy of a vaccine for people who are more at risk of infection and deaths from COVID-19. Even given the historical context I provide here, participation must be an individual decision, after much consideration.