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Dr. Carla Harwell, an internist who is the medical director of the University Hospitals Otis Moss Jr. Health Center, is Black. So are almost all of her patients, and nearly everyone who lives in the city鈥檚 Fairfax neighborhood, where the Moss Center is located. 

In early September, Harwell agreed to help recruit patients for one of the many clinical trials testing a vaccine for COVID-19.

Currently, , often with 20,000 people or more, to determine if the drugs protect people from the coronavirus and are safe for wide use. 

Harwell knows how important it is to include more Black people and other minorities in clinical trials, particularly for a disease that has sickened and killed them more than any other racial or ethnic group. 

鈥淵ou know, we鈥檙e the ones that are dying,鈥� she said. 

鈥淭his is our community that鈥檚 dying at a higher rate than we even represent in the U.S. population.鈥�

Black and Latinx residents in the United States have been three times as likely to be infected by the coronavirus and twice as likely to die from COVID-19 than their white neighbors, according

Black Clevelanders who are infected with the virus are twice as likely to be hospitalized and three times more likely to die from complications related to the disease, according to records provided by the Cleveland Department of Public Health. 

Still, recruitment in the Black community to test a vaccine that could protect against the virus has been an uphill battle, Harwell said. She鈥檚 handed out brochures about the trial for the vaccine being developed by Pfizer and BioNTech and talked with about 75 patients. Only five have expressed even tepid interest in participating, she said. 

There鈥檚 no way to track minority participation across all vaccine trials, though many of the biotechnology companies have ramped up recruitment through social media, such as Pfizer鈥檚 campaign. Some have slowed down study timelines, like Moderna did in September, to do more targeted enrollment of Black and Latinx participants. 

As of Oct. 9, Moderna reported 34 percent of volunteers enrolled from 鈥渄iverse communities.鈥� About 28 percent of participants in a final-stage Pfizer and BioNTech trial are minorities.

Harwell never expected her patients to jump at the chance to join a clinical trial testing a COVID-19 vaccine, she said, despite her two decades of building trust and credibility in the community. Most have given a flat-out, 鈥淣o.鈥�

Their reasons reflect the mistrust, abuse and exploitation that riddle the history of clinical trials in the Black community, as well as pandemic-era confusion stemming from politically driven mixed messages about the virus and its severity and even conspiracy theories about its existence. 

They鈥檙e also an indication that the decades-long trust-building battle to boost minority enrollment in clinical trials is far from won.

Skepticism Born Of History

Harwell鈥檚 patients tell her they鈥檙e afraid of being 鈥済uinea pigs鈥� in the COVID-19 vaccine trials, and that because they鈥檙e Black, they鈥檒l probably be given something harmful instead of a vaccine. 

鈥淭hey'll probably give me something different in the syringe than what they're supposed to,鈥� is what they鈥檝e told her. 

Patients often bring up the Tuskegee Syphilis Study, she said, as a reason to doubt the motives of researchers. In that 40-year-long experiment, researchers never informed the Black men who participated about the intent of the research, and did not offer them treatment for the disease even when treatment became available.

鈥淭here's a history in this country of medical and research abuse of African Americans before and well beyond Tuskegee,鈥� Harwell said. 鈥淏ut what I reassure them of is that we have mechanisms in place to make sure that that doesn't happen anymore.鈥�

One such mechanism is the institutional review board, or IRB, a group that independently reviews and monitors human research trials. Patients often don鈥檛 know about it, she said. 

Harwell has discovered 鈥渢here's still a lot of patient education that still needs to be done, probably in general about clinical trials.鈥�

In addition, information about the illness has been inconsistent and marred by partisan politics, Harwell and other Cleveland-area experts said. 

鈥淭he messaging has clearly been a less-than-optimal incentive for鈥� potential participants who you would like to recruit into these trials,鈥� said Dr. Jackson Wright, director of UH鈥檚 William T. Dahms Clinical Research Unit. 

The mixed messages about the virus from political leaders are creating a 鈥渞eal sour taste鈥� for Black people, Harwell said. 

Even knowing someone with COVID-19 doesn鈥檛 seem to encourage participation in trials, Harwell said, in part because of the newness and mysteriousness of the illness, and the lack of a consistent message about it.

Of all the responses Harwell鈥檚 heard when she talks about the vaccine trials, the oddest, she said, was from a woman who said that there was no such thing as COVID-19, and that the pandemic was 鈥渏ust one big conspiracy to shut stuff down.鈥� 

鈥淲ow, now I鈥檝e heard a lot of different things,鈥� she said. 鈥淏ut that was a first.鈥�  

Reason For Hope

Despite the numerous obstacles to recruitment, Harwell does see some reason for hope. 

Several of her patients have asked her for her thoughts about the vaccine trials, displaying the trust she has built over years in caring for them.

鈥淭hat makes me feel good on several levels that they鈥� truly trust my opinion and that at least they鈥檙e being a little open-minded about it,鈥� she said. 

And some of the trepidation about the vaccine trials is not unique to the Black community, she said. Many people across the country are concerned about the pace at which the trials are moving and worry that corners are being cut when it comes to safety.

鈥淪o what I鈥檒l hear is鈥� 鈥楴ow, I don鈥檛 want to be the first person to try this out. I want to wait and see.鈥� I don鈥檛 think that鈥檚 just an African American thing,鈥� Harwell said.  

Some of that is fueled by disinformation that spreads like wildfire on social media, like the false claim that those vaccinated would be secretly 鈥渕icrochipped.鈥� 

"There is a lot of negative social media," said George Fraser, an entrepreneur and CEO of FraserNet Inc. "A lot of it is fake around COVID vaccinations,鈥� though it is not specific to Cleveland, he said. 

Fraser, who is 75, said that while there鈥檚 a lot of chatter about Black people being skeptical of a COVID-19 vaccine, he estimates about 80 percent of his close friends and family have a positive outlook on the vaccine.

鈥淚 know my wife, who is my age, she eagerly awaits a vaccine,鈥� he said.  

That might not be the case for those learning about the negative medical experiences Black communities have had, as the stories are retold to new generations in books and movies, he said. 

鈥淭o bury that history is a generational matter,鈥� he said. 鈥淚t will take multiple more generations to dissipate.鈥�

The stakes right now, though, are high, reminding Harwell of an oft-repeated adage: Sometimes if you're not at the table, you'll be on the menu. 

鈥淲e want to make sure that we're represented so that we know that the vaccine will be safe and that it works for us,鈥� she said.

This series is a partnership between the Northeast Ohio Solutions Journalism Collaborative and the Cleveland Observer. It is presented as part of ideastream's Coping With COVID-19 project, which is funded by the Third Federal Foundation and University Settlement.