Their Vaccine Injury Reports Disappeared From VAERS — So They Developed a Tool Anyone Can Use to Track Their Own Reports
As part of a broader effort to hold public health agencies accountable, a team of researchers is developing a tool to track reports in the Vaccine Adverse Event Reporting System.
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 Willner, 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.
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,” Willner 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.”
Willner 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, Willner 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
Willner 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, Willner 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, Willner 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,” Willner 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.”