CDC Must Create Medical Codes to Track COVID Vaccine Adverse Events, Advocacy Group Says

Advocates for the vaccine-injured are petitioning the Centers for Disease Control and Prevention (CDC) to establish medical codes to classify injuries and deaths connected to the COVID-19 vaccines.

Medical codes are used worldwide “to standardize medical data reporting, and for the purposes of tracking disease patterns in populations,” said Zowe Smith, a former medical coder for an Arizona hospital.

The codes are also necessary to track the safety of drugs and vaccines, including adverse events related to vaccination. Smith said:

“There are codes for every disease, injury and cause of death, with few exceptions. The codes are broken into chapters for each body system or type of injury.

“A code specifically for adverse events due to the COVID-19 vaccine should have been created in 2020, when the clinical trials began. It was a new type of vaccine that hadn’t been used in humans before. None of the pre-existing vaccine adverse event codes would do.

“We are now four years into the release of the COVID-19 vaccine and still have no accurate way to track adverse events.”

React19, an organization representing people injured by the COVID-19 shots, submitted a petition to the CDC’s National Center for Health Statistics earlier this month.

The petition asks the CDC to create International Statistical Classification of Diseases and Related Health Problems, 10th Revision (ICD-10) codes for injuries and deaths linked to COVID-19 vaccines — a set of conditions collectively known as Post-COVID Vaccine Syndrome (PCVS).

COVID-19 vaccine injuries are “inadequately captured” in existing ICD-10 codes for generic vaccine injuries or other conditions, preventing “accurate documentation, research, resource allocation, and care delivery,” according to React19.

In an Aug. 15 article for the Brownstone Institute, Christopher Dreisbach, React19’s legal affairs director and a COVID-19 vaccine injury victim, wrote that the lack of dedicated ICD-10 codes for PCVS “has significant consequences for patients, clinicians, researchers, and policymakers alike.”

The proposed ICD-10 codes for PCVS cover neurologic, cardiovascular, autoimmune, musculoskeletal, dermatologic, gastrointestinal, anaphylactic and hematologic injuries, and conditions affecting multiple organs or resulting in death.

React19 co-chair Dr. Joel Wallskog, a Wisconsin orthopedic surgeon injured by the COVID-19 vaccines, told The Defender that React19’s proposal is “supported by over 3,600 peer-reviewed studies” contained within the organization’s database.

Brianne Dressen, who was injured by the AstraZeneca COVID-19 vaccine and later co-founded React19, said the organization’s petition is important because “ICD-10 codes are the foundation for how health conditions are recognized across medicine.”

“They guide diagnosis, billing, and coverage, but they’re also critical for tracking prevalence, enabling research, and informing public health policy. Without proper coding, conditions remain invisible in the data,” Dressen said.

In the U.S., ICD-10 codes “serve as the foundation for medical records, insurance billing, epidemiological research, and public health policy,” Dreisbach wrote.

Wallskog described the ICD-10 coding system as “the universal language of medicine” that “enables our healthcare system to function effectively.”

COVID vaccine injuries recorded under ‘vague categories’ — or not at all

In an Aug. 16 article for TrialSite News, Wallskog wrote that React19’s proposed framework is based on the “successful” series of ICD-10 codes created for long COVID.

Dressen said Reach19’s research has shown that many PCVS injuries are classified as “long COVID,” which has received substantially more attention from the medical community.

“Think of two children in the same classroom. Long COVID is the teacher’s pet — called on, supported and given opportunities. Post-vaccine syndromes are the child in the back row — overlooked, even though they’re raising their hand for help,” Dressen said.

Wallskog wrote that physicians are “increasingly seeing patients who develop multi-system symptoms following COVID-19 vaccination that persist for months.” He said these patients represent “a genuine clinical population requiring systematic documentation and study,” highlighting the need for ICD-10 codes for PCVS.

“The question is not whether these patients exist — they are sitting in our examination rooms,” Wallskog said. “The question is whether our diagnostic coding system will evolve to serve them effectively. The answer should be unequivocally yes.”

Without dedicated ICD-10 codes, PCVS injuries are “at best recorded under vague categories like ‘unspecified adverse effect of vaccine’ or ‘other specified postvaccination complication,’” Dreisbach said.

According to Smith, vague coding practices are of no value to public health surveillance systems, insurers or researchers.

“Sometimes there are no accurate diagnosis or procedure codes for new tech or drugs. In those rare cases, non-specific codes are reported. Non-specific codes are known in the industry as ‘junk codes’ because they carry no informational value,” Smith said.

Many injuries related to COVID-19 vaccination were not even recorded with non-specific codes, according to Smith. She said:

“Medical coders all around the world recognized a danger signal in early 2021 and began writing to their regulatory agencies asking for advice on how to report what is commonly known as PCVS. Official advice was to report the symptoms and occasionally add a code for an adverse event to ‘other and unspecified vaccines.’

“However, more often than not, hospital auditors and managers would review the case and remove any adverse event code before it gets reported to any regulatory agency, further burying and obscuring any chance of recording accurate safety data for the COVID-19 vaccine specifically.”

“By establishing dedicated codes, health officials could more accurately assess the frequency and severity of PCVS, helping them balance the benefits and risks of vaccination programs and design better safety monitoring systems in the future,” Dreisbach wrote.

Germany tracked COVID vaccine injuries using little-known emergency code

Wallskog cited Germany as “a compelling model” for addressing PCVS.

He said since 2021, the country’s healthcare systems have used ICD-10 code U12.9 to record adverse events related to COVID-19 vaccination. Code U12.9 is the World Health Organization’s (WHO) emergency code.

According to Wallskog, Germany’s use of code U12.9 allowed researchers to comprehensively map COVID-19 vaccine-related adverse events in the country, including a 2022 study that identified 28,287 adverse reactions across a database of 908,869 vaccinations.

Smith said code U12.9 is not widely known or used globally:

“The WHO published this code on their website — but put in the fine print that most coding systems around the world would not be compatible with the code. It was not published in the medical coding books in the WHO member states, including the U.S., until years later.”

In a 2022 audit, React19 found that the Vaccine Adverse Event Reporting System (VAERS) — the U.S. government’s vaccine-injury reporting and surveillance system — is “broken from top to bottom.”

Dressen said that without accurate coding, surveillance systems will continue to miss the scope of the problem.

“Coding would make it possible to aggregate cases nationally and internationally,” Dressen said. “That data could reveal patterns, risk factors and treatment responses.” This would allow insurance companies to properly classify and cover related care.

“Right now, many patients are denied coverage because there isn’t a recognized code, which shifts costs to the individual,” Dressen said.

Dreisbach wrote that developing ICD-10 codes for PCVS is also a matter of ethics:

“Healthcare systems have an ethical duty to acknowledge and address all medical conditions — especially those that may be rare or controversial. Creating specific ICD-10 codes for PCVS would demonstrate a commitment to transparency, patient welfare, and scientific inquiry.”

Smith warned that, even with dedicated ICD-10 codes for PCVS, hospitals and medical coders might still find ways to conceal or obscure injuries related to the COVID-19 vaccines. She said:

“Syndromes are notoriously difficult to report. More often than not, they result in reporting of junk codes. Syndromes or idiopathic diseases that some researchers claim are due to vaccines, such as immune thrombocytopenia [a blood disorder] or Guillain-Barré, are seldom, if ever, linked to a vaccine.

“Even when the documentation is crystal clear, there is a causal relationship. Most of the time, these conditions are reported as ‘idiopathic’ or just ‘unspecified,’ rather than being an injury from a vaccine.”

Smith called for a “national and potentially worldwide review of cases that should have been reported with COVID-19 vaccine adverse event code U12.9” to “ensure

accurate reporting of this important vaccine safety code going forward.”

React19 petitioning CDC to hear proposal in October

According to Dressen, the CDC’s ICD-10 Coordination and Maintenance Committee added React19’s petition to the agenda for its March 2026 meeting. However, the group asked the CDC to move its discussion of the proposal to October.

“It’s very important to include this in the fall session. The COVID-19 vaccine-injured have already been waiting four years for medical recognition. Time is finite, and people need help and recognition now,” Dressen said.

“Our next step is to continue engaging with regulators, providing additional evidence, and building support among clinicians, researchers and policymakers,” she said.