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

Tue Nov 17 16:38:36 UTC 2020

Thanks so much Richard. I experience discrimination pretty much every day of
my life as a Blind person, but this was totally in-your-face. As in "Blind
people can't take part in this study because there are just too many
requirements." I have reason to believe the guy who responded was actually
the study's principal investigator, but can't prove it just from my emails.
Incidentally, I have some other feelings about this particular hospital
system but won't go into them here.

Thanks so much for your emails.

Very Best,

Chris

-----Original Message-----
From: Ohio-Talk <ohio-talk-bounces at nfbnet.org> On Behalf Of Richard Payne
via Ohio-Talk
Sent: Tuesday, November 17, 2020 10:34 AM
To: 'NFB of Ohio Announcement and Discussion List' <ohio-talk at nfbnet.org>
Cc: Richard Payne <rchpay7 at gmail.com>
Subject: Re: [Ohio-Talk] An article that might be of interest

Chris,

I am sorry to hear that this happen, and it also shows that discrimination
can occur in a variety of ways. You hit on several points keep up the good
fight.

Richard Payne,  President
National Federation of the Blind of Ohio
937/829/3368
Rchpay7 at gmail.com
The National Federation of the Blind knows that blindness is not the
characteristic that defines you or your future. Every day we raise the
expectations of blind people, because low expectations create obstacles
between blind people and our dreams. You can live the life you want;
blindness is not what holds you back.

-----Original Message-----
From: Ohio-Talk <ohio-talk-bounces at nfbnet.org> On Behalf Of Christopher
Sabine via Ohio-Talk
Sent: Monday, November 16, 2020 4:11 PM
To: Cinci-talk at nfbnet.org
Cc: info at onhconsulting.com; ohio-talk at nfbnet.org
Subject: [Ohio-Talk] An article that might be of interest

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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