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

[Andra Stover]

Thanks for sharing this Chris. Great read way to go.

On Mon, Nov 16, 2020 at 4:27 PM Cheree Heppe via Ohio-Talk <
ohio-talk at nfbnet.org> wrote:

> 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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