Rise Above Covid

How Morénike Rises Above COVID: Advocating for Inclusion and Social Justice

Morénike Giwa Onaiwu

Advocate, public speaker, educator, researcher, writer

“I think it is really important to understand your purpose in this pandemic. I believe my purpose is to use my voice and to educate others. You don’t have to be personally impacted for you to have an impact.”

Read Morénike’s story

Morénike is an advocate, public speaker, writer, educator, researcher, and mother. Most recently, she has been working on the ACTIV-2 Study as a Community Advisory Board (CAB) member, advising on how to best serve and educate the community on COVID-19 and treatment trials.

Dedicating her life to inclusion and social justice advocacy, Morénike hopes that her story can add a new perspective and representation within the COVID-19 narrative, and encourage others to use their voice.

You have dedicated your life to education and advocacy. Why is advocacy so important?

Education and advocacy are the lifeblood of a people, but many do not realize it. Often a very narrow interpretation of these terms prevents people from recognizing their inner advocate or from perceiving themselves as lifelong learners. However, all of us are eternal students in the classroom of life; we are always learning. Moreover, there is no "right" nor "wrong" way to be an advocate... chances are, you are already one. You just have to embrace it.

Advocacy often takes us out of our comfort zones. As an individual who has not personally experienced COVID-19, I was initially hesitant about the idea of sharing my story on this platform. Then, upon hearing Tony Wafford’s story, I was so inspired by his work and voice.

As it was becoming more clear that the numbers of African Americans enrolled in COVID-19 clinical trials are, like clinical trials in general, low, I knew I wanted to help. I feel that the perspective I bring—that of a Black woman, an adult on the autism spectrum, and a mother in a neurodiverse and serodifferent family—is both crucial and underrepresented.

I think it is really important to understand your purpose in this pandemic. I believe my purpose is to use my voice and to educate others. You don’t have to be personally impacted for you to have an impact.

How has COVID-19 impacted you and your family?

I have many relatives (all of my siblings and all but one of my in-laws) who are essential workers in healthcare who have been first responders since day one. Additionally, as part of a disabled and serodifferent family, a number of my loved ones are in groups that are at high risk for COVID-19. As a result, during this pandemic, those of us who can have been doing a lot of sheltering in place to better ensure everyone’s safety. I’ve also been trying to stay informed by reading as much information as I can. Sometimes, however, you have to pull away from it to preserve your mental health.

Why is raising awareness about clinical trials in the Black community and neurodiverse community so important?

Collectively, our society will never achieve health equity if we don’t acknowledge the clearly documented disparities faced by people with disabilities and people of color, particularly Black and brown people. This issue has long existed within both clinical practice as well as in clinical trials, and though it obviously predates the pandemic, the pandemic has really highlighted how pervasive and harmful it is.

Given the lack of effective recruitment and retention strategies for BIPOC and/or people with disabilities, it’s a wonder that we’ve succeeded in enrolling the percentages we’ve achieved thus far, however inadequate. As clinical trials can literally mean the difference between life and death for individuals with these and related marginalizations, increasing our enrollment is critical.

With regard to COVID-19 clinical trial enrollment demographics, much dialogue centers around issues such as how the higher likelihood of utilizing mass transportation and/or residing in shared housing arrangements as well as how lack of health literacy, medical mistrust, pre-existing diagnoses, and the digital divide all contribute to racial disparities. And while these factors do indeed play a part, they don’t account for the fact that even when controlling for them, there remains clear, documented evidence of inequity.

Such as the fact that White patients enrolled in COVID-19 trials have been more than two times likely to receive remdesivir, and thus have lower mortality rates than others. These factors also fail to justify the unethical ventilator distribution policies that exist in many states that devalue disabled, Black, and brown lives.

What does explain these things? Racism does. Ableism does. Provider bias does. As the pandemic is simply shining a light on something that has been festering for ages, the question then becomes what are we going to do about it?

The system is clearly broken. The science, on the other hand, speaks for itself - it’s working. These trials are saving lives - period.

What does inclusion look like to you when thinking about health education and access?

Inclusion to me looks like everyone has a voice and everyone is involved in a meaningful way. It’s ensuring information represents and is accessible to as many people as possible. Inclusion looks like support, policies, and resources that take in mind the needs of a diverse group of people.

As an adult on the autism spectrum, I know that the information about COVID-19 has not been as easily disseminated to the disability community, especially disabled people of color.

One example of inclusion that comes to mind is thinking through and offering solutions for people who lip read and/or people who have sensory differences for whom certain masks and PPE can be difficult. Raising those questions and helping find solutions for those questions… I think that’s where I can make a difference.

As a mother of a special needs family, how have you educated and supported your family during COVID-19?

The experiences of disabled families have not been talked about enough during this time. For me, it has been important to have a sense of balance and to stay informed so that I can make the best decisions for my family. In addition to striving to become informed as aforementioned, I have truly realized the value of contingency plans — making sure we have enough supply of food, medicines, or products should there be any shortages or logistical challenges. It’s also been helpful for me to also take time for myself. I would recommend that other special needs families determine in advance who and where you can reach out to obtain support if/when a need arises.

What advice would you provide to others who are interested in participating in clinical trials?

I would say to do your research. Thoroughly read through (credible) articles and websites to find tools; critique the information you take in. I would encourage others to prioritize gaining a clear understanding. Also, don’t be afraid to ask questions, and seek to get involved when possible. It’s important that we educate ourselves on what clinical studies are, how they are done, what placebos are, what the data will be used for, and what happens during a study. The more you know, the more you can make an informed decision on what is right for you. There is a lot of free, user-friendly information available on our RiseAboveCOVID.org website as well as on ClinicalTrials.gov, the CDC website, etc.

What does Rise Above COVID mean to you?

Rise Above COVID means not waiting for COVID-19 to be gone; it means rising above it in its presence. It’s acknowledging that we are all in this world together, and we all have a purpose and responsibility to each other to get through this pandemic.

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Michael’s Story

Tony’s Story

“If not now, when? If not you, who? To me rising above COVID is just that.”

Watch why Tony is commited to fighting for health equity within the Black community.

WE CAN RISE ABOVE COVID,
BUT WE CAN’T DO IT
WITHOUT YOU.

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