[Ohio-Talk] {Spam?} Re: Follow up article on Nation's Blind Blog on my Covid-19 Vaccine Trial Experience

[Cheryl Fields]

Fantastic advocacy Chris! I applaud your courage to become a
forerunner for our health and safety and your persistence in the face
of adversity. Outstanding, Ohio Strong! CF




On 10/14/21, Christopher Sabine via Ohio-Talk <ohio-talk at nfbnet.org> wrote:
> Here is the follow up blog regarding my Covid Vaccine Trial experience at
> Cincinnati Children's Hospital Medical Center. I'm actually just getting
> around to posting this even though the post was originally published in
> August.
>
> Chris
>
> https://nfb.org/blog/positive-step-forward-update-issues-i-had-while-trying-participate-vaccine-trial
>
>
> A Positive Step Forward: Update on the Issues I had While Trying to
> Participate in a Vaccine Trial
> Monday, August 16, 2021
>
> by Chris Sabine
>
> [Chris Sabine]In April 2020, at the onset of the pandemic, I applied to
> participate in a clinical trial of a promising vaccine candidate for the
> emerging COVID-19 virus. As a member of the National Federation of the Blind
> (NFB), business owner and child of aging parents, I felt obligated to do my
> part to contribute to mitigating a virus that had so far claimed thousands
> of lives and essentially placed our economy and society on hold.
>
> On July 30, 2020, following the US Food and Drug Administration's approval
> of the Pfizer - BioNTech COVID-19 Vaccine Candidate for Phase III clinical
> trials, I received a call from a recruiter at the Gamble Vaccine Research
> Center at Cincinnati Children's Hospital Medical Center (CCHMC), the local
> research site to which I had applied, informing me that I was eligible to
> take part in their trial.
>
> While reviewing my qualifications to participate with the hospital, I
> explained that I needed reasonable accommodations because I am blind. After
> a week of emails between me, the recruiter, and staff managing the trial, I
> received a message stating that it would be best for me not to take part in
> the trial. The notice insinuated that several tasks necessary for
> participants to complete, such as taking body temperature and reporting
> symptoms, required sight.
>
> I eventually filed a complaint with the Office of Civil Rights of the US
> Department of Health and Human Services (DHHS) alleging discrimination based
> on my blindness, and on September 24, the NFB joined my complaint. In
> December, I received a notice from DHHS stating that my case was being
> investigated for potential violation of Section 504 of the Rehabilitation
> Act of 1973 and Section 1557 of the Affordable Care Act of 2010. These laws
> require health care providers and others receiving federal funds to make
> reasonable modifications to allow people with disabilities to participate in
> their programs, activities, or services; both laws applied in my case.
>
> The investigator in charge of my case interviewed me and spoke with a senior
> attorney at CCHMC who was responsible for compliance. Through this process,
> it was found that the selection criteria for participation in the clinical
> trial had changed when the FDA approved the vaccine candidate to only
> include those with underlying health conditions or health care workers. That
> information was never communicated to the recruiter who reached out to me.
> Since I fit neither category, the recruiter should have never called me in
> the first place. [Even so, the low expectations of the recruiter would have
> excluded me from participating and that is inexcusable.
>
> The compliance attorney for CCHMC conceded that the research and recruitment
> staff showed poor communication with me regarding my participation in the
> study, and he agreed to work with me to modify their policies to better
> accommodate blind participants in future clinical trials. After consulting
> with members of my NFB affiliate and negotiating with the compliance
> attorney at CCHMC, I was given the opportunity to prepare and organize a
> professional in-service training on best practices for including blind
> people in clinical trials.
>
> The training consisted of an overview of the alternative techniques blind
> people use to accomplish tasks necessary to participate in a clinical trial
> and perform other daily activities, such as Braille, the white cane, and
> assistive technology. Information on resources to accommodate blind research
> participants as well as patients and family members was also provided to
> clinical and family relations staff at CCHMC.
>
> On July 21, 2021, I received notice from DHHS that my case was officially
> resolved. Our NFB affiliate and I plan to continue to work with the hospital
> on accessibility initiatives in the future and help CCHMC to improve access
> to materials and information for members of the blind community.
>
> I was surprised and thrilled to hear our efforts recognized by President
> Mark Riccobono during his 2021 Presidential Report at national convention.
> It is empowering and humbling to realize that my efforts have played a role
> in helping the blind of this country truly live the lives they want.
>


-- 
Wishing You All the Best,

Cheryl E. Fields


A man has made at least a start on discovering the meaning of human
life when he plants shade trees under which he knows full well he will
never sit.
--D. Elton Trueblood