Speaking before a group of pastors at a luncheon at Harold and Belle’s last week, health activist (and Sentinel columnist) Tony Wafford described the driving force behind his work in typically blunt fashion: “I don’t want to see Black people die,” he said.
That sentiment has fueled his many campaigns throughout the years to address racial health disparities, from raising awareness of the prevalence of HIV/AIDS among Black people to staging a COVID vaccine clinic at a Watts housing project. The newest campaign of Wafford’s health and wellness organization “I Choose Life in partnership with Jumo Health” takes aim not at a specific disease but at a problem in medical research that shapes public awareness and treatment options of all diseases: the low rate of Black participation in clinical trials.
It sounds technical, but Wafford became passionate about it once he realized that the lack of Black participants means that their needs are minimized or overlooked as new drugs and diagnostics are being developed to treat conditions that disproportionately affect them. In other words, the lack of a Black presence in clinical trials directly threatens Black lives.
Wafford had called the pastors together as a strategy to start spreading the word in the Black community that it needs to step up and participate. “Clinical trials and research are our friend,” he told the crowd. “Not everything’s going to be perfect. But the more people are involved, the more perfect the drugs become.”
Wafford, a former promoter, knows that involving Black people in any kind of medical trials can be a hard sell. The infamous Tuskegee experiment, which went on for decades, claimed to be treating a group of Black men with syphilis, but actually withheld the penicillin that could have cured them. That incident solidified Black people’s wariness of the medical establishment and its motives, a wariness that persists to this day in the refusal to get vaccinated or simply go to the doctor on a regular basis.
A big part of I Choose Life and Jumo’s mission is to break through that resistance in order to improve the poor health outcomes of Black people that seem to persist from one generation to the next. And with clinical trials, the problem isn’t just historical resistance, it’s a lack of information about the trials themselves — when they’re being done, what they involve (many are conducted online), what kind of compensation is being offered.
Information is key. But the information Black people need to embrace first and foremost is the numbing fact we continue to be so adversely impacted — fatally impacted — by so many diseases. One of them is Alzheimer’s, the focus of the luncheon meeting.
Wafford told the pastors that nearly 22 percent of Black people over 70 have some form of the disease, double the rate of whites. According to the Center for Disease Control, the 40% of clinical trials in 2020 that track the racial identity of participants (a problem in and of itself) report Black participation of 2.1 percent.
One of the problems with such low diversity is that it’s difficult for researchers to identify early signs of disease, and ways to avoid disease altogether, that may be particular to particular groups of patients. There is also less information about side effects to health, notably to brain health, particular to Black people that could be crucial to know. “Is that okay?” Wafford asked. “Why aren’t we doing something about it?”
Wafford admitted that “we are not going to fix structural racism today,” but he insisted that Black people need to be at the table of the many clinical trials developing drugs to treat Alzheimer’s. Tia Delaney-Stewart, a registered nurse and director of Diversity, Equity, and Inclusion for the California Southland chapter of the Alzheimer’s Association, spoke urgently about the need for more Black involvement in helping to treat and potentially cure a disease that too many people in the community minimize as forgetfulness or accept as an inevitable consequence of old age.
As DEI director, she is working to connect information about hundreds of ongoing trials with those in touch with potential trial volunteers, from primary care physicians to pastors. Trials and studies seek not just Alzheimer’s and dementia-impaired people, but their long-term caregivers who have to contend with their own emotional and cognitive struggles over time.
Dr. Auleroa Eakins with the public health care plan L.A. Care talked about her frustration at seeing that too often, Black communities leave valuable resources on the table because they simply don’t know about them. For example, thousands of dollars to help with things such as food insecurity during the pandemic were not spent.
Not joining clinical trials because of a lack of information is another way we squander resources, she said. “We could really use the help in publicizing health events, “ she told the pastors. “Ministry is not just on the spiritual side, it’s on the health side too.”
The pastors gathered did not disagree, though some needed a bit of convincing. One pastor from Long Beach admitted that he was “on the Tuskegee tip” when COVID vaccines were first rolled out in 2021. One day, on his way to a funeral in Inglewood, he was stopped by a white man in a Mercedes-Benz who asked him, “Where can I get that shot?”—the Forum, one of several sites that were administering vaccines. “That changed my mind,” he said.
Rev. K.W. Tulloss, president of the Baptist Ministers Conference, said that while much more needs to be done, the good news is that health organizations like the Alzheimer’s Association are now seeking out churches as trusted community partners. “They find us, who have always been doing the work,” he said.
Wafford said he overcame whatever lingering trepidation he might have had about trials by deciding somewhat spontaneously to take a heart scan that was being offered to Black men some years ago. “I told a friend of mine, ‘Man, let’s do this,” he said. One of the thirty men tested that day was taken straight to the hospital. The decision to have the scan saved his life.
There are many barriers to that participation. Black people as a group are historically wary of the medical establishment, and especially of medical experiments, often citing the Tuskegee experiment—a fake clinical trial in which black men suffering from syphilis were actually not given the penicillin that would have saved their lives—as a reason to steer clear of all trials and studies.
Wafford understands this, but argues that such an attitude is self-defeating and dangerous.
