Thursday, July 29, 2021

The Rise Above Covid Movement Aims To Dispel Mistrust Around Covid-19 Clinical Trials

 

Rise Above Covid2

*While the world is abuzz over the rollout of a vaccine against Covid-19’s deadly 2020 reign, there are still portions of the community who remain cautious for a variety of reasons. Besides a foundation of distrust based on egregious medical experiments targeting the Black population in the past, there is a general doubt growing out of the current administration’s care and handling of the pandemic.

Although Black communities have Covid-19 rates that are 2.6x higher, hospitalizations 4.7x higher, and deaths that are 2.1x higher, they also have the lowest clinical trial participation. With these statistics in mind, the Rise Above Covid movement is set to dispel myths, assuage fears, and raise awareness of the ACTIV-2 clinical trial taking place coast-to-cast. The Rise Above Covid movement aims to find medicines for Covid-19 through the nationwide ACTIV-2 clinical trial taking place across 68 medical sites nationwide.

One thing is clear—people do want a cure. What remains murky are the untested waters and the differences between treatment and vaccine. To get deeper insight, EURWEB did a Q&A with key figures around the Rise Above Covid movement who support the trials.

First speaking with Dr. Lance Okeke, an Assistant Professor of Medicine in the Division of Infectious Diseases at Duke University. As a doctor at the frontlines of Covid research, he is the site principal investigator for the ACTIV-2 trial at Duke. Holding an MPH in Epidemiology from the University of North Carolina Gillings School of Public Health, he has also published over 25 peer-reviewed articles.

Lance Okeke
Dr. Lance Okeke

EURWEB: Within an era of growing distrust between the public and the medical system, what are doctors and community medical advisors doing to bridge the gap between fact and fiction?

Dr. Lance Okeke: 

“There is an understandable feeling among some in the Black community that clinical trials shouldn’t be trusted, because of well-known historical examples like Tuskegee. The mistakes of history will not be repeated. When the National Research Act was signed into law in 1974, it ensured the highest ethical protocols, conduct and standards are met during clinical research.

In developing this clinical trial, and with an eye toward the historical mistrust of clinical trials by communities of color, we have taken a thoughtful and deliberate approach to engaging with communities of color during the Rise Above COVID movement. We realize the importance of trusted sources, the reality that no matter how compelling the evidence, many people in communities-of-color want to hear an unequivocal endorsement of a medical intervention directly from a voice they trust. In recognition of this and in collaboration with our community advisors, we are identifying trusted sources to get the message out about the search for therapeutics against COVID, the goal of the Rise Above COVID movement.”

What have you personally done to adjust to the different landscape of medicine due to COVID-19?

“On a personal level, I think using my expertise to combat misinformation is the greatest service I can conduct as a citizen. From appraising current data on COVID-19, synthesizing it and explaining in language comprehensible to laypersons, to debunking prevalent myths with evidence, my duty to my fellow citizens is to disseminate the evidence as it exists.”

How confident are you in the treatment trials and what is the single most pervasive thing you could say directly to any individual who has doubts or fears about them?

“We are confident that our research can lead to better outcomes if Black communities participate. We completely recognize the conundrum: Black people are justifiably skeptical of clinical trial participation due to the historical misgivings of the medical research community; as a result, they do not enroll and clinical trial results subsequently are not representative of diverse populations, particularly with under-evaluation in Blacks. As researchers, we know that we need to make sure that treatments are safe and effective for the communities that are impacted the most. The only answer to this conundrum is for people of color to participate in these clinical trials. In this spirit, I participated in one of the investigational vaccine trials a couple of months ago. We desperately need a treatment that can prevent people from developing advanced disease that requires hospitalization, and Black communities should be aware of the clinical research opportunities they have access to.”

More from Dr. Okeke at https://www.youtube.com/watch?v=kZDSfMV4ivc&feature=youtu.be

Adding some perspective is a Community Advisory Board member of the Rise Above COVID movement, Tony Wafford. His own experience with the pandemic after losing five family members to Covid-19 in just 14 days has led him to advocate strongly for participation in clinical research opportunities. As President and CEO of “I Choose Life Health and Wellness Center” (with chapters across the country), his community-based organization focuses on helping Black communities nationwide improve their health and well-being.

Tony Wafford
Tony Wafford

EURWEB: What is the main objective behind the Rise Above COVID movement and how can communities at-large benefit?

Tony Wafford:

“The main objective for the Rise Above COVID movement is to find treatments for those who have been diagnosed with COVID-19 and have symptoms that are not severe enough to be hospitalized. I also see this treatment-focused clinical trial as an alternative to the vaccine clinical trials, for those who are fearful of taking the vaccine.”

With food deserts, hospital overflows, economic limitations, as well as lack of education about the current healthcare system—particularly among our elders; what can leaders and citizens do to help those most impacted in our communities?

“COVID-19, like the killing of George Floyd before our eyes, has unveiled social and systemic racism in this country which is the cause of food deserts, hospitals overflowing, economic limitations and a broken education system. Like the killing of George Floyd, you cannot say you did not see what you saw. Here is what we can do – Black leadership, the Black community, Black elected officials, Black faith leaders and grassroot organizations can all work together to create a national movement. That is how we can get this disease to take its knee off our neck.”

In losing five family members to COVID-19 within two weeks {condolences, as well}; what can you say to anyone who not only doubts the treatments but the pandemic itself?

“I can personally say that COVID-19 is real and no conversation about conspiracy theories are going to bring them back. I’m not going to allow fear of the medical community to paralyze me. In the names of my loved ones, I’m going to—just as the name of the project I’m working with—I’m going to “Rise Above COVID” and do all that I can to reach and teach my community and family about the importance of us fighting to stop the spread of COVID-19 devastating our community.”

Clinical research and fair medical treatment have a sketchy past with Black Americans—from the Tuskegee Experiments to Henrietta Lacks—and mistrust in general is rampant; how would you encourage them to approach trials and treatments in general?

“Mistrust between the medical community and the Black community is a major issue because of Tuskegee and it should be.  We should always remember what happened in Tuskegee, but we should also recognize and celebrate those brilliant Black physicians that followed and have a seat at the table to make sure that nothing like that ever happens again. They are sitting at the table, so we as a people will never again be harmed.”

Hear Tony Wafford’s story at https://www.riseabovecovid.org/en/stories/tonys-story/

Doctors and community leaders espousing the values and benefits of the research presents one view, yet clinical trial volunteer, Mike McDaniel offers his own reasoning behind participating in the clinical trial. In addition to testing positive for Covid-19 on 10/10, and enrolling in the clinical trial six days later, he has watched his entire household test positive as well. McDaniel is another proponent of volunteering to diversify the trial.

Mike McDaniel
Mike McDaniel

EURWEB: What made you confident enough in the science or the risk to undertake the clinical trial? 

Mike McDaniel

“I trust science and logic.  I also had a great experience with the medical professionals who I worked with throughout this trial.  They were very transparent and caring.”

What encouraged you to join the Rise Above COVID movement?

“This virus is having a horrible impact on the whole world.  I’m doing this because it can help everyone, especially my family and friends.  I didn’t want this virus but if I can use it to help others I’m all for that.”

Once you got a positive result, what procedures did you and your family undergo to mitigate the spread? 

“We shut ourselves down. I isolated in a bedroom until we found out that everyone in the house was infected. We did not leave the house or allow anyone to come to our house for a month. All groceries and take out were delivered to the house.  We also contacted anyone we had been in contact with so that they could get tested.”

How were you physically and emotionally impacted by the virus? 

“I would call our physical symptoms mild. Even so, it was the sickest that either my wife or I have ever been. The major issues for me were fever and fatigue. I could not work on the computer for more than 2 hours without needing to lie down and take a nap. Mentally, it was scary. The seemingly random way the virus impacts people made me worry. I was worried about how it would impact my wife and kids.”

Has your involvement with the clinical trial experience given you hope that this pandemic can be bested, and why should others participate?

“1,000 times, yes.  My interaction with the medical professionals involved in my trial gives me the confidence that they (and we) will beat this. The compassion, passion and knowledge they have tells me that we’ll get this done. I think that participation leads to information and that leads to solutions.  If we can get the right amount of participation, we can knock this out.  I would advise people to do it for those they love and for those they don’t know.”

For those wanting further information go to riseabovecovid.org

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