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

[info at onhconsulting.com]

Thanks, Andra.

Chris
-----Original Message-----
From: Ohio-Talk <ohio-talk-bounces at nfbnet.org> On Behalf Of Andra Stover via Ohio-Talk
Sent: Tuesday, November 17, 2020 8:56 AM
To: NFB of Ohio Announcement and Discussion List <ohio-talk at nfbnet.org>
Cc: Andra Stover <astover at kent.edu>
Subject: Re: [Ohio-Talk] An article that might be of interest

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-advoc
> > acy
> >
> >
> >
> >
> >
> > 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
> >
> >
> >
> > _______________________________________________
> > Ohio-Talk mailing list
> > Ohio-Talk at nfbnet.org
> > http://nfbnet.org/mailman/listinfo/ohio-talk_nfbnet.org
> > To unsubscribe, change your list options or get your account info 
> > for
> Ohio-Talk:
> >
> http://nfbnet.org/mailman/options/ohio-talk_nfbnet.org/ccheppe%40iclou
> d.com
>
> _______________________________________________
> Ohio-Talk mailing list
> Ohio-Talk at nfbnet.org
> http://nfbnet.org/mailman/listinfo/ohio-talk_nfbnet.org
> To unsubscribe, change your list options or get your account info for
> Ohio-Talk:
> http://nfbnet.org/mailman/options/ohio-talk_nfbnet.org/astover%40kent.
> edu
>
_______________________________________________
Ohio-Talk mailing list
Ohio-Talk at nfbnet.org
http://nfbnet.org/mailman/listinfo/ohio-talk_nfbnet.org
To unsubscribe, change your list options or get your account info for Ohio-Talk:
http://nfbnet.org/mailman/options/ohio-talk_nfbnet.org/info%40onhconsulting.com