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

[info at onhconsulting.com]

Thanks, Barbara. Most definitely. The way the principal investigator of this
trial treated me was classic discrimination. I couldn't believe it. I've
experienced a lot of discrimination in my life, but this was completely
blatant--totally in-your-face. 

Very Best,

Chris

-----Original Message-----
From: Ohio-Talk <ohio-talk-bounces at nfbnet.org> On Behalf Of Barbara Pierce
via Ohio-Talk
Sent: Monday, November 16, 2020 4:50 PM
To: NFB of Ohio Announcement and Discussion List <ohio-talk at nfbnet.org>
Cc: Barbara Pierce <barbara.pierce9366 at gmail.com>
Subject: Re: [Ohio-Talk] An article that might be of interest

Chris, You did great work with this effort. How maddening it was that they
cut you out of the program. But we must keep pressing. You have been
standing on the barricades.
Barbara
Barbara Pierce, President Emerita
National Federation of the Blind of Ohio Barbara.pierce9366 at gmail.com
440-774-8077
 

The National Federation of the Blind knows that blindness is not the
characteristic that defines you or your future. Every day we raise
expectations for blind people because low expectations create obstacles
between blind people and their dreams. You can live the life you want;
blindness is not what holds you back.

> On Nov 16, 2020, at 4:10 PM, 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-advocac
> y
> 
> 
> 
> 
> 
> 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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