<html><head><meta http-equiv="content-type" content="text/html; charset=utf-8"></head><body dir="auto">Good for you, Chris! It’s hard to believe that people in the healthcare field are not up to speed on the ADA.<br><br><div dir="ltr">Sent from my iPhone</div><div dir="ltr"><br><blockquote type="cite">On Oct 14, 2021, at 11:10 AM, Christopher Sabine via Cinci-NFB <cinci-nfb@nfbnet.org> wrote:<br><br></blockquote></div><blockquote type="cite"><div dir="ltr">
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<p class="MsoNormal">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.<o:p></o:p></p>
<p class="MsoNormal"><o:p> </o:p></p>
<p class="MsoNormal">Chris<o:p></o:p></p>
<p class="MsoNormal"><o:p> </o:p></p>
<p class="MsoNormal">https://nfb.org/blog/positive-step-forward-update-issues-i-had-while-trying-participate-vaccine-trial<o:p></o:p></p>
<p class="MsoNormal"><o:p> </o:p></p>
<p class="MsoNormal"><o:p> </o:p></p>
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<span class="field"><span style="font-size:39.0pt;font-family:"Lato",sans-serif;color:black;font-weight:normal">A Positive Step Forward: Update on the Issues I had While Trying to Participate in a Vaccine Trial</span></span><span style="font-size:39.0pt;font-family:"Lato",sans-serif;color:black;font-weight:normal"><o:p></o:p></span></h1>
<p class="MsoNormal" style="background:white;vertical-align:top"><span style="font-size:10.5pt;font-family:"Lato",sans-serif;color:black">Monday, August 16, 2021<o:p></o:p></span></p>
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<span style="font-size:13.5pt;font-family:"Lato",sans-serif;color:black">by Chris Sabine<o:p></o:p></span></p>
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<span style="font-size:13.5pt;font-family:"Lato",sans-serif;color:black"><img width="313" height="236" style="width:3.2604in;height:2.4583in" id="Picture_x0020_1" alt="Chris Sabine " src="cid:image003.jpg@01D7C0EB.CB5805B0"></span><span style="font-size:13.5pt;font-family:"Lato",sans-serif;color:black">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.<o:p></o:p></span></p>
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<span style="font-size:13.5pt;font-family:"Lato",sans-serif;color:black">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. <o:p></o:p></span></p>
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<span style="font-size:13.5pt;font-family:"Lato",sans-serif;color:black">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.<o:p></o:p></span></p>
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<span style="font-size:13.5pt;font-family:"Lato",sans-serif;color:black">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.<o:p></o:p></span></p>
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<span style="font-size:13.5pt;font-family:"Lato",sans-serif;color:black">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.<o:p></o:p></span></p>
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<span style="font-size:13.5pt;font-family:"Lato",sans-serif;color:black">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.<o:p></o:p></span></p>
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<span style="font-size:13.5pt;font-family:"Lato",sans-serif;color:black">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. <br>
<br>
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.<o:p></o:p></span></p>
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<span style="font-size:13.5pt;font-family:"Lato",sans-serif;color:black">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.<o:p></o:p></span></p>
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