As we get closer to the availability of a vaccine for COVID-19, health care experts are becoming increasingly concerned about lack of trust in the development process. After all, a vaccine does no good unless people line up to get their shots, and in a recent poll from Pew Research only 51 percent of respondents said they would probably or definitely get the vaccine. Even more worryingly, this problem is especially acute in the Black community: Among Black respondents, only 32 percent said they would get it.
Suspicion of the vaccine in the Black community is often blamed on old but still searing memories of the notorious Tuskegee Syphilis Study, in which hundreds of poor Black sharecroppers with syphilis were enrolled in a program that was supposedly going to treat their disease. In reality, nothing was done for them. The real purpose of the study was to withhold treatment and observe the natural progression of untreated syphilis.
However, as my colleague Jamilah King has written, there’s much more to Black distrust of doctors than just memories of Tuskegee:
“I do think a lot of times these [conspiracy] theories are rooted in a reality,” says David Malebranche, a doctor and associate professor at the Morehouse School of Medicine. “When we look at particularly the medical profession and the history of medical racism [and] experimentation on black bodies, it’s not that folks are making this up or pulling this out of the crack of their ass and just saying like, ‘Oh, you know, everyone’s out to get me and there’s no foundation to it.’”
…Malebranche also notes that in acknowledging people’s distrust, it’s important to realize it’s not just rooted in the Tuskegee experiment….“I’m very clear that a lot of [Black] people aren’t even thinking about Tuskegee when they think about distrust of the medical profession,” he explains. “They just know what happened when their grandmother went to the hospital or when they saw their mom or dad have an experience with a doctor.”
…“I think the best way to train [medical] students to think about all these different considerations is to say, ‘OK, hey, we have a gentleman coming in with chest pain, and then part of his social history is that he had a father or a relative that went into a hospital and wasn’t taken seriously about his chest pain and discharged home and he died. So he does not appreciate the health care system.’”
In other words, Black distrust of the medical community is perfectly understandable. Now compare this to the conclusion of a study published a few years ago in Health Affairs:
Trust and respect were their primary concern with the health care system, even more than the quality of the health care they received. Participants felt they were treated with less respect because of their income, insurance status, and race….Participants gave examples of a lack of trust and respect, including providers avoiding eye contact, speaking condescendingly, showing physical disgust when touching patients, brushing off patient concerns and symptoms, and ignoring adverse events that patients reported from prescribed treatments.
The above two excerpts sound similar, but the Health Affairs study wasn’t about Black patients. It was about all low-income patients, and their complaints are eerily similar regardless of race. In another study, this one in the Journal of General Internal Medicine, the authors concluded that “Overall distrust scores did not vary by race, although there was a suggestion of greater concerns about honesty among African Americans.” But if race is only a small factor in overall distrust of the medical system, what’s the main factor?
Distrust of the health care system was associated with self-reported health status in unadjusted analyses and this association persisted after adjustment for age, gender, race, educational attainment, household income, health care access, and trust in physicians.
…This study does not prove causality. However, there are several reasons to believe health care system distrust may lead to poor health. Distrust has been demonstrated to interfere with the effective functioning of many different segments of society. Similarly, health care related distrust may interfere with the effective functioning of the health care system, by leading to lower rates or delayed utilization of beneficial health care services, such as preventive health care, as well as increased use of unnecessary and potentially harmful health care services.
This, of course, is a vicious cycle: Distrust leads to patients not seeking out care, and that leads to poor health, which in turn feeds distrust of the system. Importantly, however, most people in the study reported fairly high levels of trust in their own personal physician. They may not trust what they hear on TV or what the American Medical Association says, but they do listen to their own doctor. And there’s more. Another study, from the American Journal of Public Health, finds that Black patients do have generally less trust in the medical system than white patients, but with a significant caveat:
The pattern is much more complex than previously suggested, with a far-from-uniform picture of greater distrust among minorities. This is particularly striking across cities, where in some cities Blacks report consistently higher mean levels of distrust than do Whites; in others, Blacks report consistently lower mean levels of distrust than do Whites; and in still others, there is a mixed relationship dependent on socioeconomic status. In the same cities, Hispanics either reported consistently higher mean levels of distrust relative to Whites or a mixed relationship.
In Boston, for example, Black patients report higher distrust than white patients, but in Las Vegas it’s white patients who report higher distrust. In other studies, it’s patients using Medicaid who report higher levels of distrust. And the same Pew poll that I linked to above finds greater levels of distrust among the middle-aged and the least educated. Put it all together and it’s likely that distrust of the medical system depends on at least half a dozen factors:
- Poor health
- Type of health coverage
This suggests very strongly that acute distrust of the health care system isn’t solely a function of race. It spans several other classes of patients too, and it’s unclear which factors are the most important. What’s more, the growing influence of the anti-vaxx movement is almost certainly affecting this too, though it’s too early for any rigorous research to have been done on this.
Our overall level of vaccine distrust is too high. Of the 51 percent who say they might get the vaccine, you have to figure that probably a third won’t bother for one reason or another. That’s not enough. We need coverage of 60-70 percent of the population for the vaccine to be really effective. Outreach to the Black community is still crucial, but so is outreach to those with poor health and those with low incomes. It’s likely that they’re contributing to our epidemic of vaccine distrust as much as anyone else.