Thread by @mrzphd

As of 9/22/2022 update kingcounty.gov/depts/health/c…

The vaccine I was administered & assured on site prior to injection “has no adverse reactions, not even anaphylaxis because there is no PEG” has been pulled from distribution & no longer offered. I am still disabled 18+ mths. 🧵

2/ I called the # from above, hoping by now, someone knows who I can contact to report adverse health event in Washington State

apps.leg.wa.gov/RCW/default.as…

But no one knows who is responsible for mass vaccination sites. It’s not publicly available info, not even lead nurses know.

3/ we know contamination existed & doses were released. When manufacturers are allowed to disconnect all information from lot numbers and no one knows who oversees mass vaccination sites or how to report adverse health events, there’s a massive problem in tracking safety signals

4/ I’m told by the allergist that I’m not allergic to PEG or Polysorbate 80, but the burden is on me to find out what caused the adverse reaction or “you should never take another vaccine again - it may be too dangerous” but crucial information to find answers is disconnected…

5/ & there is no way for WA State law to be followed for the safety & betterment of protocol with adverse health events because there exists no such system for mass vaccination sites & no one knows who is responsible for them, change needs to occur. Severe events must get counted

6/ this is a different kind of #moralinjury - I was trained in research conducted on human subjects, ethical protocol, informed consent, meticulous data collection for accurate analyses, transparency, limitations & risks - a place to direct people harmed.

scientificamerican.com/article/moral-…

7/ I expected far higher standards from “follow the science, follow the data” & “safe and effective.” For those statements to be accurate, accurately capturing data (not avoiding or losing it, as has been done with mine) and ethical protocol for injured people are crucial.

8/ in 2020-2022, I didn’t think anything I’ve experienced in the past 18 months could have even been possible. From lost data collection at Janssen, to known contamination and distribution, to choosing not to alert recipients, to no point of contact or plan to guide doctors

9/ To learning that mass vaccination sites run by the county where I live - no one, not even leadership, knows who is responsible for them, there is no information publicly that even employees can find or learn from their supervisors. How is this possible? How are private medical

10/ records released to public without my consent or knowledge via FOIA but WA State continued reporting there were no known adverse J&J reactions of women in WA - so health authorities could never find my medical records or adverse health reports, but they will freely be given

11/ to members of the public, unredacted, while being told by the manufacturer the only way to get medical records to them to confirm vaccine injury is via non HIPAA compliant email to a location they cannot even tell me who has access to it. Meanwhile, electronic databases lost

12/ all record of my existence, more than once, requiring a supervisor to listen to recorded calls confirming my account that my adverse reaction reports went missing, more than once. And people ask why we don’t see counts of injured. I ask this: if data showed “safe” why has FDA

13/ not approved J&J? This would be a bad move for only a very small, rare number of people, considering the need for accessible vaccines. Why was I not provided informed consent according to WA law that I was being mandated an unapproved product without safe manufacture?

14/ the mandate assured safe manufacturing practices at the time the cross contamination was known and the investigation had already been published and lots already released for distribution. No one knows who ran mass vaccination sites and therefore, have no way of tracking.

15/ despite known contamination, failure to follow EUA mandated requirements, disclose informed consent J&J was an unapproved product, known life-threatening SAE, healthcare insurance continues denying medical coverage: saying vaccines were “experimental” & not part of emergency

16/ despite requirement to maintain my job by emergency order, L&I has denied my claim. No details or timeline included on guidance. L&I didn’t know. Once filed, following up, I was told they had no record of me, and resubmit. Then told deadline passed. lni.wa.gov/agency/outreac…

17/ The @bmj_latest thoroughly investigated my case and my CICP application submitted 10/1/2021, with verified medical documentation & peer reviewed published research - over 300 pages. CICP confirmed receipt in writing, then a month later lost mine. bmj.com/content/377/bm…

18/had I not called & emailed consistently for status, I’d not have learned CICP “lost” all record of me (confirmed in consented, recorded call with CICP) until after the year deadline passed. I was told I would need to resubmit. Wait 40 days. If lost again, repeat. No supervisor

19/ I was assured by CICP before BMJ publication in April I could say I would receive a case number by the end of the month. In a few days, it will be a year since initial written confirmation of receipt (before it went missing), and still not case number assigned. Meanwhile,

20/ zero claims have been compensated. 42 denied. In case anyone is wondering, I received consent to record a call with someone in CICP leadership who confirmed no standard for proof of causation exists. FOIA confirmed as well. Claims are being denied with no guideline standard

21/ CICP is the only listed & confirmed “safeguard” in existence. If you choose not to believe me, do you believe any of them? This is wrong.

@NatGeo nationalgeographic.com/science/articl…

@Reuters reuters.com/legal/litigati…

@Forbes forbes.com/sites/adamandr…

@Bloomberg news.bloomberglaw.com/coronavirus/co…

22/ if even @NIH states the number of severe adverse events is higher than they can keep up with, this should be a signal that a data collection system needs to be in place to count people injured & disabled. This is a 1st step to regaining public trust. Next, ethical response

23/ #COVID19 isn’t going away. #COVIDisNotOver. Because it’s not, there absolutely must be ethical protocol equal to requirements of IRB for caring for people disabled under mandates who were given unapproved products, without informed consent, and have zero help. Without these

24/ changes, society continues to shame and blame the injured who TOOK the vaccine to “protect others” & “stop the pandemic” as we were promised by those we trusted. We are not creating hesitancy. We are data gone missing like 🧩 needed for science in action, the counterexamples

25/ history does not need to repeat. A century later, it is. For me, as a researcher, this is #MoralInjury on top of being disabled.

@kindred_health is joining forces w/ @VirusesImmunity & @hmkyale as @YaleMed scientists to speak

history.com/news/the-infam…

nist.gov/blogs/taking-m…

26/ I am in more than 12 research studies. I refuse to let the severity of my suffering not contribute to science and change. People make choices. I got vaccinated and have been called “collateral damage” and told “no one will help you - but if you care about those after you…”

27/ “…don’t give up looking for answers.” Good science is not adverse to counterexamples & ethical & protection. Those who try to shame injured people or claim their injury will somehow slow scientific advancement are not practicing good science. Advancement comes from learning.

28/ The realm of the possible that can be done now:
1) update NIH/NINDS website - neurologists go here for latest updates on #COVID19 data on neuro & vaccines. Without updates, clinicians don’t have time to scour research or constantly look for FDA updates to EUA. 11/21 - 9/22 ⬇️

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2) if programs like CICP are promised as safeguards, make sure they work and are accessible, otherwise it appears like a false promise of a lifeboat and decreases trust that ethical protocol exists for injured. Move COVID-19 vaccine to Table of Injuries- enough data exists

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3) if CICP cannot be salvaged, or health equity cannot be met for vaccine injured as defined by @CDCgov, cdc.gov/healthequity/w… it will be a losing battle to restore trust in future iterations of vaccine campaigns further increasing disparity: ncbi.nlm.nih.gov/pmc/articles/P…

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4) capture (and ensure electronic databases) injuries accurately, don’t keep losing adverse reaction data as has happened to mine across multiple agencies. I have documentation. How many more went missing from people not persistent like me to track or resubmit lost data?

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5) ensure state law is followed for health equity and human protection - these laws and mandatory requirements already exist such as:

apps.leg.wa.gov/RCW/default.as…

apps.leg.wa.gov/rcw/default.as…

app.leg.wa.gov/rcw/default.as…

janssenlabels.com/emergency-use-…

None have been followed in my case.

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6) update CDC definition of MIS to include recent vaccination pubmed.ncbi.nlm.nih.gov/33640145/, EUA mandates reporting all cases of MIS post vaccination, but no diagnostic criteria exists from CDC for clinicians to meet mandatory requirement. They cannot diagnose MIS post vaccination

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7) What can’t get diagnosed can’t be captured in database analyses. When diagnostic criteria & known SAE aren’t updated w public facing information for clinicians, many clinicians still believe it is impossible for SAE to occur following vaccination, leading to no diagnosis

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8) updating known information to match research findings, EUA and fact sheets that are already verified by FDA are the quickest first step to solve the gap in safety signals and awareness, rather than Doctors having no diagnostic tools or guidance for appropriate testing

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9) make sure social media algorithms are updated - known vaccine injuries exist rather than incorrectly labeling injured people as “misinformation” or “antivaxx.” There’s a difference. Algorithms don’t block cancer patients from telling symptoms following chemo or radiation.

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10) saying that talking about vaccine injury is bad because it will prevent science & health is as ludicrous as “sex education is bad” or “teaching consent will cause problems.” Uncomfortable? Maybe. Normalize good science, transparency, consent, risk, benefit. Not ignoring.

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11) clear public messaging on what EUA means - it means an unapproved product. Clear messaging to medical professionals not to interchange EUA with FDA approval - very different legal meanings. Coercion of an unapproved product isn’t just unethical, it’s against EUA mandate

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12) either inform people that EUA means they are taking full responsibility of medical costs for any injury associated with an unapproved product SAE & their health insurance may deny coverage & no one can help them if something goes wrong, or ensure both exist & accessible.

40/ It’s not news to science that adverse events occur in any medication or drug product. Why are so many still denying SAE rather than approaching the evidence as a scientist, as a #designthinking challenge as #healthequity as #ethics

wke.lt/w/s/aMGjzE

41/ long🧵, I’m back to beginning: J&J is still unapproved, although Public Health told me on 3/14/21 it was FDA approved (it wasn’t) & that I’d lose my job if I didn’t take it when I asked about risks. They have now removed it from distribution. I did my part. I’m vaccinated &♿️

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I’ve been in communication with public health for over a year. I trusted protections & protocol existed, as well as supervisors to report adverse health events. I believed it was just a matter of finding the correct people. I received a reply this morning from Risk Management

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