[NFBMO] A chapter members response to A Vaccine Trial, Discrimination, and Self-Advocacy

Fred Olver fredolver at gmail.com
Thu Dec 3 12:30:22 UTC 2020


Daniel, are you surprised by this? Years ago probably five, I attempted to work with a facility in the St. Charles area with regard to possible participation in studies of various drugs. They flat out refused me as a participant. They said I would have to bring a person with me in case there was a fire and needed to get out of the building. Sometime later though, I got hooked up with a company called CSL plasma and sold my plasma to them on a regular basis until I turn 65. This netted me some $300-$350 per month income. Quite an adventure and some very interesting folks as well. And as far as I know the income is not taxable have a great day and merry Christmas Fred Olver

Sent from my iPhone

> On Dec 2, 2020, at 7:50 PM, Daniel Garcia via NFBMO <nfbmo at nfbnet.org> wrote:
> 
> Dear Friends:
> 
> Below is one of my chapter members response to the blog article I Forwarded a few days ago about the blind being discriminated against when trying to become volunteers for the COVID19 vaccine trial. I am forwarding it to this group with her permission.
> 
> Regards
> 
> Daniel Garcia, President, Kansas City Chapter
> National Federation of the Blind of Missouri
> dangarcia3 at hotmail.com
> (816) 621-0902
> www.nfb.org
> www.nfbmo.org
> Live the life you want.
> 
> 
> 
> From: Lucinda Kincaid <lucindakincaid2013 at gmail.com>
> Sent: Sunday, November 29, 2020 3:44 PM
> To: 'Daniel Garcia' <dangarcia3 at hotmail.com>
> Subject: RE: A Vaccine Trial, Discrimination, and Self-Advocacy
> 
> Dear Daniel:
> 
>     I read Christopher’s article and I too am being cut out or discriminated against any and all pharmaceutical studies because their dquipment that you receive upon the start of the study does not allow for large print or screen reading software to be implemented into their equipment.  The reason I am given is because of the HIPPA (Health Information Private Protection Act) which means that because of these vaccine, double blind studies, absolutely no one, and I do mean NO ONE must know what kind of vaccine, dosage, patient reactions good or bad must be known by anyone but the pharmacy scientists and researchers wish to know about how the vaccine is doing.  These researchers are look for good statistics about the vaccine before the FDA will approve these four pharmaceutical companies do go ahead and participate in the “Warp Speed” distributions in getting these shots out to everyone who needs them.
> 
> A LITTLE BACKGROUND OF WHAT I’VE LEARNED – You see, A couple of years ago, I really wanted to participate in a new asthma inhaler study, because, at the time, my asthma was out of control and I badly wanted to participate in that study!  Here, in town, there is a physician, who has retired as a pulmonary doctor and now, exclusively is conducting studies for several pharmaceutical companies.  I spoke with my recruiter at length about how I could get started in participation with that new asthma medicine.  She told me what all I would have to do.,  We spoke about ways in how I could get going with the application, and the equipment, mainly their tablet I would have to use to answer questions that would be sent to me every even for reaction for the enhaler, but that is was not equipt with “speech Over.  She really tried to be an advocate to the particular pharmaceutical company for me, and the company refused to even consider that possibility of even considering adding any software of screenreaders or large print programs to be added to any of their devices.
> 
>     I even called this same physicians pharmaceutical study group to participate in this Covid 19 vaccine study.  I spoke with the same recruiter, very pleasant, understanding and very nice: but again, there is the same problem of exclusion.
> 
>     Ergo, This appears to be a nation wide exclusionary issue with pharmaceutical studies for persons with disabilities and for persons who are blind.
> 
>     In my mind, we should forget everyone on Capitol Hill and to straight to the head of the FDA and strongly , in no uncertain terms, urge him to cause all pharmaceutical companies to add large print and screen reading software programs to be added to  all study devices that study participants will use!
> 
>     This corona virous/covid-19 is very dangerous, and spreads faster that the western wild fires, and if these huge money pharmaceutical companies to immediate add adaptive equipment, and/or software to every single device the participants will use for vital studies badly necessary studies so that these vaccines can get out to all the deltoids to once and for all send this horrible virous to
> 
>     HELL!!!!
> 
>     Okay, that’s my story!  Let me know what you think.
> 
> 
> 
> From: Daniel Garcia <dangarcia3 at hotmail.com>
> Sent: Monday, November 16, 2020 6:55 PM
> To: NFB of Missouri Mailing List (nfbmo at nfbnet.org) <nfbmo at nfbnet.org>
> Subject: FW: A Vaccine Trial, Discrimination, and Self-Advocacy
> 
> 
> 
> Feed: Voice of the Nation's Blind Blog
> Posted on: Monday, November 16, 2020 1:34 PM
> Author: avetro
> Subject: A Vaccine Trial, Discrimination, and Self-Advocacy
> 
> A Vaccine Trial, Discrimination, and Self-Advocacy
> [Image removed by sender. An illustration, created at the Centers for Disease Control and Prevention, showing ultrastructural morphology exhibited by coronaviruses; it is shaped like a ball with red growths around it.]
> avetro Nov 16, 2020
> Christopher Sabine
> 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.
> 
> [Image removed by sender. Christopher Sabine reads Braille at his desk.]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
> Advocacy<https://www.nfb.org/blog-categories/advocacy>
> Stories<https://www.nfb.org/blog-categories/stories>
> Read this blog post
> 
> View article...<https://www.nfb.org/blog/vaccine-trial-discrimination-and-self-advocacy>
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