CDC to Weigh Adding Covid-19 Vaccine Injury Medical Codes

The Centers for Disease Control and Prevention is gathering feedback on a proposal that would create a medical code to track adverse effects from the Covid-19 vaccine.

React19, a nonprofit that supports individuals who have experienced complications from the Covid vaccines or long Covid, proposed the new codes, and has provided sample language and encouraged people to submit public comments to the CDC.

Interest in exploring policy to address vaccine-related injuries has gained momentum with support from US Health Secretary Robert F. Kennedy Jr., who championed the issue prior to his time atop the agency. “We are working on it. We’re trying to make that happen as quickly as possible,” Kennedy said at an April 22 congressional hearing.

But the White House has tried to downplay Kennedy’s vaccine skepticism in messaging and policies ahead of the midterm elections, while infectious disease researchers have cautioned that an ill-conceived proposal could cause more harm than good.

“The push for new vaccine harm codes appears to serve injury lawyers and not doctors or patients,” said Noel T. Brewer, a professor at Gillings School of Global Public Health at the University of North Carolina at Chapel Hill and a former ACIP member. “It is unclear what the new codes would add, especially given that no clearly defined clinical entity exists for a supposed post-Covid-19 vaccination syndrome.”

The Advisory Committee on Immunization Practice’s March meeting agenda was slated to focus in part on Covid vaccine injuries, before the panel and its work were halted by ongoing litigation. Details from a leaked ACIP workgroup paper first reported by The New York Times suggest the committee intended to propose the creation of International Classification of Diseases, Tenth Revision, codes for Covid vaccine injuries. ICD-10 codes are the standard used to track diagnoses, insurance reimbursement, and for medical research purposes.

Kennedy has signaled he plans to overhaul the Vaccine Injury Compensation Program, which provides compensation to people injured by vaccines while giving liability protections to the drugmaker.

Covid vaccines are not covered under the VICP, but injured individuals can seek relief through the Countermeasures Injury Compensation Program, which Kennedy has also said he hopes to expand.

Code Language

May 15 is the deadline for comment on the code proposal presented at the March meeting of the ICD-10 Coordination and Maintenance Committee, which advises Health and Human Services on which codes to accept. If accepted as written, the new code would go into effect on Oct. 1, 2027.

The proposed code would document adverse effects after receiving Covid vaccines, with notations for if the effects were immediate or experienced during subsequent medical visits.

Joel Wallskog, co-chair of React19, said the code designation would be an important step for authorizing access to treatment and possibly insurance coverage for alleviating the symptoms of those injured.

Wallskog said he became disabled and retired from his career as a board-certified orthopedist due to complications from his first Moderna Inc. Covid shot.

After the ICD-10 added a code to track long Covid effects in 2021, Wallskog submitted his first request in 2022. He didn’t hear a response back and submitted a new proposal last summer.

“Coding is not what I say is a sexy issue, but from a medical perspective it’s certainly very important,” said Wallskog, who considers this the first step to getting treatments authorized and reimbursable for injured individuals.

“We need off label use. We need right-to-try, we need fast tracking of these drugs or we need some way to, in an FDA manner, allow approval of these repurposed drugs,” he said.

Kennedy’s former organization, Children’s Health Defense, has also pushed individuals to submit comments in favor of the code. CHD has been involved in dozens of vaccine harm lawsuits.

“Everyone who’s injured wants to be recognized, and I think an ICD-10 code update would go a long way in recognizing vaccine injury,” Karl Jablonowski, the group’s senior research scientist who testified at an April congressional vaccine hearing, said in an interview.

Currently, Jablonowski said, scientists must assemble different symptoms to try to isolate the patient population that make up the syndrome, which is very difficult without the information available through medical record codes. The only way to get a “consensus expert opinion” is to conduct more research, which would be easier with the code.

Chicken or the Egg

Infectious disease specialists say vaccine injury needs to be studied before jumping into policies, and cautioned the code proposal would not be useful without narrower diagnostic criteria.

“I realize there’s a chicken and egg problem here, and they’re not wrong, but the greater solution in my opinion would be to implement a coding system to at least identify people who are suffering from vaccine injury,” said Jablonowski.

Jake Scott, clinical associate professor at the Stanford University School of Medicine’s division of infectious diseases and geographic medicine, said the proposal could result in more harm than good.

Once a code exists, it is used downstream in billing claims, research, surveillance and even litigation.

“The way I frame the concern is that ICD-10 codes are classification tools, and they exist for clinical entities that have a defined case definition, meaning clinicians broadly agree on what the condition is, how to diagnose it, and then how to distinguish it from other conditions,” said Scott, who said the proposal doesn’t clear that threshold.

Codes exist for adverse events associated with older vaccines but those fall under defined categories for well-characterized adverse events such as an anaphylactic reaction due to vaccination or specific smallpox vaccination complications, Scott said.

As written, Scott said the code would create the impression of defined disease when one hasn’t been established yet.

“There is a defensible version of the proposal I’d support that is more better and granular,” Scott said. “Patients deserve real research and real clinical attention, but a premature code doesn’t give them that.”