Black anti-vax skepticism justified, risky
The decision to refuse vaccinations for yourself or your children is wildly misguided and fueled by a recent movement to disseminate misinformation and create widespread opposition. Generally speaking, there is no reasonable justification for people to deny the science of vaccines. But for a faction of the growing movement opposing vaccines, there is an explanation.
From James Marion Sims to the Tuskegee Study of Untreated Syphilis in the Negro Male (that’s the official name), the relationship between public health entities and the black community have long been sullied in a way that has produced a widespread and insidious distrust of health care practices. It’s unfortunate, too, because black people have enough trouble navigating life-threatening biases. So when new therapies come around that can actually save lives by preventing the spread of contagion, the black community may be disproportionately impacted because of the spread of a far more perverse virus — distrust.
Public health agencies have been experimenting on black bodies since the founding of the union. The example of Sims, the commonly called father of gynecology, displays some of the earliest cases of exploitation of black people. Sims’ experiments on enslaved black women broke ground on never before executed treatments for women at a time when female health care wasn’t widely practiced. In order to develop treatments for vesicovaginal fistula, painful urinary leakage during pregnancy, and invent the vaginal speculum, Sims conducted painful experiments on black women without anesthesia. The advantage to being able to conduct experiments on human property, Sims said in his autobiography, was that “There was never a time that I could not, at any day, have had a subject for operation.”
It’s easy to dissociate from these actions because they happened in 1845. So allow me to paint a more tangible picture.
You’ve just had a massive heart attack and you’re one of the lucky few for whom an ambulance arrives in time to transport you to a hospital. Your vitals are fading and the EMTs have to act fast to resuscitate. To do so, they have a choice between two treatments: one that has been on the market for a substantial amount of time and has been rigorously tested, the other is new and experimental. You’re out cold and no family is around to convey your wishes. What would you want to be used?
In this sort of case, the FDA waives the requirement for patient consent and gives EMTs and physicians complete discretion on which drug to use. Without your knowledge or say so, an EMT could decide to administer the experimental treatment for research purposes.
That may be a necessary evil, but it should make you uncomfortable.
To deepen the black community’s extreme distrust of public health entities, recent reports suggest that though black people have remarkably low participation rates for experiments in which informed consent is required, participation rates are disproportionately high for experiments like the one described in which informed consent is not required.
Because of centuries-long justifiable distrust, when given the option, black communities tend to optout of medical research and clinical trials that could benefit them and provide the industry with more data on exactly how new therapies would impact black people. As such, according to ProPublica, hundreds of cancer drugs have little data on their effects on black people because the black participating sample size may have been 10 percent or less. All this has the potential to impede a doctor’s ability to adequately recommend treatments to black people and result in traditionally underserved communities missing out on effective treatments.
Conversely, when the option is taken away in the most urgent situations, black people are forcibly opted-in to experimental treatments that gamble with their lives.
This country’s upheld legacy of cruelty to black bodies and disregard of black lives in the name of science also inadvertently manipulates entire communities into avoiding effective medical treatments because of a justifiable suspicion of conspiratorial nefariousness.
A little skepticism with your coffee and one aspirin a day is often a good thing. Every consumer of medicine should be well versed on the all the possible side effects of any drug or therapy, especially if it’s new or the science isn’t settled on it. This does not describe vaccines.
Vaccines save millions annually. So far they’ve eradicated smallpox, and have brought six other diseases under control: diphtheria, tetanus, yellow fever, whooping cough, polio, and measles, according to Unicef. Another disease, the sexually transmitted human papilloma virus (HPV), has a vaccine that prevents the development of cervical cancer. That’s right, science has gotten us to a point where a vaccine can help prevent cancer, but somehow fact-free debates about the efficacy of vaccines is causing a major comeback of the measles with outbreaks in New York, California and the Caribbean.
The measles vaccine is 97 percent effective at preventing the disease. That’s higher than the rate of effectiveness of chemotherapy, depending on the type of cancer and when it’s caught. You’ll notice, however, there isn’t an anti-chemo movement sprouting up to combat that treatment. The reason may be because you’ve seen the effects of cancer with your own eyes.
It’s very likely that you’ve never met anyone with the measles. If you’re a millennial you’ve heard the lighthearted name before but thought of it with the same level of concern as you do for strep throat. But the reason you’ve never met anyone with measles is that the measles vaccine has been silently protecting all of us from contracting the virus. As long as herd immunity is in effect, there should never be a reason for anyone around you — even those too young, allergic, or too ill to get the vaccine — to have had it. Since it works so well, we’ve let the out-ofsight, out-of-mind effect of vaccine trick us into thinking there’s no clear and present danger. But there is.
First, let’s also dispel the misconception that measles is a mild virus. While the seriousness varies, measles can cause pneumonia, lifelong brain damage, deafness, and even death. Those who survive the virus often face permanent loss of hearing and a reduced quality of life from other complications.
Next, we have to understand that measles is a disease so contagious that the Center for Disease Control and Prevention estimates up to 90 percent of people close to the ill person will contract it. The virus can spread as early as four days before the rash appears, meaning the carrier can feel healthy enough to work, go to school, and even travel. It can live in the air of a room for up to two hours after the ill person has left it. Which creates a particularly grim predicament for poor, densely populated cities — areas which have historically had high percentages of black and brown residents.
Finally, we have to set the record straight. While skeptics often cite the false assertion that the vaccine can cause autism, studies conducted by health agencies in countries around the world have found that that there is no scientific evidence that links measles and autism.
There’s very real harm to spreading unsupported claims about vaccines. That harm most often impacts poor black and brown communities who, because of a history of medical mistreatment, are predisposed to avoiding new and even well-established therapies.
In response, it’s really up to public health agencies to work actively to undo the misconceptions about medical treatment. In order to ensure black communities aren’t scaring themselves out of effective treatments, public health agencies must do all they can to acknowledge the history of forced experimentation, address life-threatening implicit bias in today’s health care systems, exhibit a high standard of ethics, and work with communities to build and instill trust.
There is a cruel symmetry in this cycle of health care mistreatment — black people are exploited in the research and then avoid the treatment. Because of that, our justifiable skepticism may cost us our lives and leave us the most vulnerable in the face of a virus like measles. Mercy Quaye is a social change communications consultant and a New Haven native. Her column appears Mondays in Hearst Connecticut Media daily newspapers. Contact her at @Mercy_WriteNow and SubtextWith Mercy@gmail.com.