[Ohio-Talk] An article that might be of interest

[Cheree Heppe]

This looks like a good opportunity to educate the medical community. Sorry you're going through this.

Sent from Cheree's iPhone

> On Nov 16, 2020, at 16:12, Christopher Sabine via Ohio-Talk <ohio-talk at nfbnet.org> wrote:
> 
> Hello all.
> 
> 
> 
> Here is an article from the NFB Blog about my experiences attempting to take
> part in a Covid-19 Vaccine Trial here in Cincinnati. I hope this starts a
> conversation about how the Blind can take part in clinical trials,
> especially in light of the potential effectiveness of the Moderna and Pfizer
> Vaccine Candidates.
> 
> 
> 
> Very Best,
> 
> 
> 
> 
> Chris
> 
> 
> 
> 
> 
> https://www.nfb.org/blog/vaccine-trial-discrimination-and-self-advocacy
> 
> 
> 
> 
> 
> A Vaccine Trial, Discrimination, and Self-Advocacy
> 
> 
> Monday, November 16, 2020
> 
> As the nation awakened to the realization in mid-March that COVID-19 was
> about to have a profound effect on our daily lives, I was acutely aware of
> the consequences of not obeying proper health protocols. I still live at
> home, where I help care for my aging parents. My father, a Vietnam veteran,
> has several health conditions, including severe COPD. He is homebound, and
> contracting COVID-19 could be a death sentence for him.
> 
> On March 15, Governor Mike DeWine of Ohio, where we live, became the first
> governor in the country to close all nonessential businesses, including
> restaurants and bars. We were effectively on lock down.
> 
> I was very concerned about how my family and I would fair if we contracted
> COVID-19, and how I would care for them while in isolation or quarantine. I
> also worried about how my business clients-primarily families of children
> with the same condition that caused my blindness-would be able to cope with
> the sudden need for virtual instruction with potentially inaccessible online
> technologies.
> 
> I wanted to be a part of the process of ending the emerging pandemic and I
> wanted to enable my family to return to our normal lives. As a blind person
> and member of the National Federation of the Blind, I also wanted to
> contribute to the development of a vaccine-particularly for our members at
> greatest risk.
> 
> So when the Gamble Vaccine Research Center at Cincinnati Children's Hospital
> Medical Center announced that it was seeking participants for a trial of
> emerging vaccine candidates, I submitted an online application and
> questionnaire on the center's website. The questionnaire consisted of a
> basic health screening and demographic data. I also submitted an application
> for a family member who wanted to participate.
> 
> On July 27, Pfizer and BioNTech announced that their COVID-19 vaccine
> candidate was entering Phase III clinical trials. Later that same day, our
> local media outlets reported that the Gamble Vaccine Research Center was one
> of the sites seeking participants in these clinical trials.
> 
> I received a call that same week from a recruiter informing me that I was
> eligible to volunteer in the trial based on the questionnaire I submitted in
> April. I explained that I would likely be able to participate, but needed
> information and accommodations because I am blind.
> 
> The recruiter emailed me the informed consent documents. After reviewing
> these and discussing my participation with my family, the relative who I
> helped apply for the vaccine trial in April recommended that she accompany
> me to the testing site and that we participate together in the trial. She
> and I live in the same household. This would enable her to assist me in
> completing the medical history forms and other required paperwork.
> 
> When I asked the recruiter if this was possible, she responded that this was
> not allowed due to social distancing protocols. Next, I asked the recruiter
> if I could receive the required paperwork in advance so I could complete it
> prior to coming to the testing site-either with a reader or my
> screen-reading technology. The response I received was that the team
> conducting the study believed that a blind person could not perform the
> activities required of participants, such as body temperature and blood
> pressure monitoring, and reporting any adverse reactions to the vaccine.
> 
> After sending the recruiter a follow up email explaining that I could
> perform these activities with accommodations, and referring her to the
> National Federation of the Blind, I received a subsequent email indicating
> that their selection criteria had changed. I was being excluded from
> participation.
> 
> After consulting our affiliate vice president, I filed a complaint with the
> Office of Civil Rights, U.S. Department of Health and Human Services, and
> the U.S. Department of Justice on August 1 alleging discrimination by the
> Gamble Vaccine Research Center in their selection criteria.
> 
> I am proud to say that the National Federation of the Blind has joined my
> complaint on behalf of all the nation's blind.
> 
> With the current rising numbers of COVID-19 cases and the promise of an
> effective vaccine potentially on the horizon, investigators cannot afford to
> discriminate against prospective volunteers based on factors unrelated to
> established protocols, like blindness.
> 
> There are many ways that a blind person can meet the requirements to
> participate in a vaccine trial, including assistive technology and more
> low-tech solutions. I hope our complaint against the Gamble Vaccine Research
> Center starts a conversation about the ability of people with disabilities
> to take part in all clinical trials.
> 
> -Christopher Sabine
> 
> 
> 
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