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Their vaccine injury reports disappeared from VAERS — So they developed a tool for anyone to track their own reports

By Brenda Baletti, Ph.D. | The Defender | September 11, 2024

A team of researchers is developing a tool to track reports in the Vaccine Adverse Event Reporting System (VAERS), so vaccine-injured people can follow what happens to the reports they submit.

As part of a broader effort to hold public health agencies accountable, the tool will also make it possible to audit the VAERS system by identifying what types of reports are deleted, insufficiently updated or contain errors.

The Centers for Disease Control and Prevention (CDC) and the U.S. Food and Drug Administration (FDA), which jointly oversee VAERS, have refused to do this work despite multiple appeals by advocates for the vaccine-injured, according to React19, the group leading the initiative.

React19, founded by a small group of medical professionals injured by COVID-19 vaccines, works with institutions and providers to increase understanding and awareness of patients experiencing lasting effects following COVID-19 and/or COVID-19 vaccines.

The group is teaming up with computer programmer Liz Wilner, founder of OpenVAERS — a website that provides tools for more easily accessing and searching VAERS data — and Children’s Health Defense (CHD) to develop the tool.

The idea for developing the automatic VAERS report tracking tool came out of a VAERS audit the group conducted in 2022 to assess how the FDA and CDC were following up on COVID-19 vaccine injury reports.

React19 worked with outside experts to review a sample of 126 VAERS reports filed by some of its members who wanted to know what happened to their reports.

After tracking down each person’s reports and following them through the VAERS system, they “were kind of shocked at how bad it is,” members of React19 told The Defender.

They found that only 61% of the reports filed were correctly logged and published in VAERS. Twenty-two percent of the reports were never issued a permanent ID and are therefore not publicly visible, 12% were deleted and in 5% of the cases, a report couldn’t be filed or their report number remains unknown due to system errors.

That means more than 1 in 3 reports searched couldn’t be found in a database that is meant to be publicly accessible and transparent. It also suggests that problems of “omission of data and underreporting may be even greater than estimated,” according to the audit report.

The group also found that the medical status of the deleted reports, “by and large, had a worse outcome than the ones that were still in the system,” they said. For example, they said, in the public-facing VAERS system, 23% of reports were for permanent disabilities — but in the deleted reports, 53% were for permanent disability.

“One of the more alarming things we found out was that not all death reports are investigated,” Brianne Dressen, React19 founder, told The Defender.

The group brought this to the attention of public health officials in their meetings, sharing examples of reports that had been updated by people’s families when they died, but didn’t show up on the public system.

They also found that many follow-up reports containing updates on worsening symptoms were gone from the system.

At the time, the group was meeting regularly with top officials, including Peter Marks, M.D., Ph.D., director of the FDA’s Center for Biologics Evaluation and Research, to discuss vaccine injuries and why the agencies were doing nothing to address them.

In those meetings, according to Dressen and React19 member Dr. Joel Wallskog, when they raised the issue that the agencies weren’t following up on VAERS reports, the FDA told them VAERS wasn’t a reliable indicator for vaccine injuries, because anyone could file an injury complaint, including “Mickey Mouse or Michael Jackson.”

“We told them we know thousands of people that have not had any follow-up on their VAERS reports that are not Mickey Mouse, and they’re suffering it every single day waiting for you guys to get back to them to investigate what happened to them,” Dressen said.

“And of course then they never did anything. So we were like, OK, fine. If they’re not going to generate the evidence, then we will ourselves.”

The group submitted their findings to Marks during a meeting with him and his team. Based on their findings they also requested an external audit of the entire VAERS system and posed a series of questions listed on their audit report webpage.

They never heard from the agencies again.

“We were like, really?” Dressen said. “We were having these regular meetings with them every one month or every two months, and then after that, they wouldn’t meet with us anymore.”

Dressen, who was injured in the AstraZeneca clinical trials and whose diagnosis of post-vaccine neuropathy and other vaccine-related disorders was confirmed by the National Institutes of Health, said her own VAERS report is not visible to the public. The agencies haven’t told her why.

More recently, still hoping for accountability from the public health agencies, React19 submitted its audit and complaint to the Office of Inspector General at the U.S. Department of Health and Human Services.

The only response they received was an autoresponse confirming receipt of the complaint.

Attempt to ‘bring power back to the people’

In its small pilot audit, React19 found the VAERS system is “obviously broken from top to bottom.” According to Dressen, “One thing we can easily conclude is that the FDA and CDC have no interest in addressing these issues.”

Now, the group is scaling up the project to do a larger audit with more data.

With help from OpenVAERS and CHD, the team built a backend, automated administrative tracking system that eliminates the need to manually search for each report and its journey through VAERS — something the analysts had to do for the first iteration of their audit.

Participants will register on the React19 website and will be invited — if they are interested — to share their stories as part of the organization’s project to collect and publish vaccine injury testimonials.

Users can share any information they have about their VAERS report — their ID number if they have one, or if not, details about their case. Then they will receive a monthly email with the status of their report.

For example, someone who has a user ID and a public-facing report will be informed if their report disappears. In the case of those people who filed a VAERS complaint but never got an ID number, the system will search each month for the record and try to find the ID.

“We’ll be able to track these reports through the system and figure out what happens to them,” Wilner said. “Do they disappear? Do they appear and the person doesn’t get notified? Do they appear incorrectly?”

“So people will be able to track their own reports with less effort and React19 will be able to audit a much larger user base than they initially did.”

Wilner said auditing VAERS in this way also reveals details about how the agencies are “either lying or deliberately obfuscating the process.” In the first audit, it was clear there was no systematic or automated way that, for example, reports were deleted.

The tracker and the audit will provide valuable data that no one else has. Rather than having only the stories, Wilner said, they will have the data backing up those stories. “Now we have a group of injured people that are all talking with one voice.”

“Without more pressure and more discovery,” Wallskog said, “I don’t think we’re ever going to get the truth out. Ultimately, we want to get this information to the masses of people that just don’t know what’s happening, particularly with this data, and that we’ve all been duped.”

Dressen said the project is an attempt to “bring the power back to the people.”

The COVID-19 vaccine produced a large swath of vaccine injuries all at the same time, she said. Auditing the COVID-19 entries in VAERS will provide an opportunity “to show through massive numbers where those problems are, not just with the systems that are supposed to be monitoring vaccine safety, but also the actual harms themselves and what those are, but the government’s not doing their job on that.”

The two faces of VAERS and the problem of accountability

Wilner said Dressen’s injury report, sitting in VAERS limbo, spoke to one of the major issues around claims of transparency in the database — that there are two versions of VAERS, a public-facing database and a private one.

The BMJ reported last year that it investigated the VAERS database and found that the public facing database contains only initial reports. And “a private, back end system containing all updates and corrections — such as a formal diagnosis, recovery, or death.”

The CDC told The BMJ that this was part of patient confidentiality, but the publication found that in the FDA’s Adverse Event Reporting System, they do update the database — “raising the question of why VAERS can’t do the same.”

And during the React19 audit, the group found that VAERS was sometimes deleting people’s legitimate reports or the more detailed updated reports that some people were submitting.

Another problem, Wilner noted, is that a lot of key information — such as race, pregnancy and report provider — is unnecessarily withheld from public VAERS reports. She also said the agencies sometimes leave reports on there that are clearly false or jokes, which then discredits the database in the public’s eyes.

On the CDC website, Wilner said, “you’re basically looking at a doctored set of books.”

Wallskog said the agencies “try to live on both sides of the fence” with VAERS, presenting it as a key tool for monitoring vaccine injuries. But when it shows a safety signal or an issue with vaccines, they discredit it as a problematic surveillance system with a lot of limitations that can’t be trusted.

“It’s incredibly frustrating for injured people,” he said.

The team working on the new VAERS tracking system and audit said they hope it will raise public awareness and force the public health agencies to take responsibility for the vaccine injuries.

“Rochelle Walensky said the CDC is charged with finding legitimate vaccine injuries and reporting them,” Wilner said. She added:

“If that’s the case, where is that? We don’t have access to the actual database to figure it out so we want to know where is the report from the CDC on the people that were actually injured by the COVID vaccine that the government accepts were legitimately injured? That report doesn’t exist.”

This article was originally published by The Defender — Children’s Health Defense’s News & Views Website under Creative Commons license CC BY-NC-ND 4.0. Please consider subscribing to The Defender or donating to Children’s Health Defense.

September 11, 2024 Posted by aletho | Aletho News | CDC, COVID-19 Vaccine, FDA, United States, VAERS | Leave a comment