Three and a half years ago I contracted Guillain-Barré syndrome after getting the Johnson & Johnson (Janssen) viral vector vaccine for Covid-19. The neurological disorder has left me hobbled by numb hands and feet, staggering around imbalanced, and battling debilitating fatigue. It has also left me, and thousands of others, feeling ignored and unheard by the government and the public health establishment.
I wrote about the experience in 2021 in The Boston Globe, after the FDA attached a warning to the J&J shot, citing an unacceptable occurrence of this adverse effect. At the time, I bemoaned that it was so difficult to talk about vaccine side effects and argued that government and public health officials should just face up to them honestly. People could handle the truth, I said, and everyone would benefit because acknowledging those rare occasions when things go wrong would allow vaccine makers to design a better product.
Three years later, that still hasn’t happened. Public health officials, cowed by the anti-vax crowd, stuck to the line that Covid-19 vaccines are safe and effective. And an existing system to address people injured by vaccines, established under President Ronald Reagan, has been all but abandoned.
Of course, vaccines save lives. But the “nothing to see here” posture regarding legitimate vaccine side effects is preventing government from having our backs and following up on flaws in the products — in the same the way it does when romaine lettuce or lunch meat gets contaminated, or air bags don’t function properly.
And, as is well known in the medical profession, there really is a flaw. Several vaccines have a problem with Guillain-Barré syndrome, known as GBS. In 1976, the swine flu vaccine triggered so many cases, it had to be discontinued. Flu shots are associated with a “slightly elevated risk.” During the pandemic, the J&J shot was effectively shut down in the U.S. for triggering at least 100 GBS cases, and AstraZeneca’s vaccine was linked to many hundreds more. More recently, makers of shingles and RSV vaccines have had to issues warnings about GBS.
Intuitively, it makes sense. GBS is fundamentally an auto-immune response. Vaccines work by tricking the immune system into attacking a target, like a representation of the coronavirus. In some people, rogue antibodies take that fight too far and start attacking the body’s peripheral nervous system — a horrifying and thoroughly damaging case of friendly fire.
One would think officials wouldn’t want to sweep anything under the rug, which could stoke more suspicion about vaccines. But unlike some other countries (Canada comes to mind), the United States is not managing this problem in the straightforward and sober manner it warrants. And thousands of people — albeit a tiny fraction of the 230 million people who got a Covid-19 jab — are suffering because of it.
Unlike some other countries, the United States is not managing this problem in the straightforward and sober manner it warrants.
It doesn’t have to be this way. There’s a process in place to handle this problem. After vaccine makers were given immunity from lawsuits to encourage product development, the 1986 Childhood Vaccine Injury Act established the National Vaccine Injury Compensation Program, or NVICP. The program allows individuals harmed by vaccines to share what happened to them and receive compensation funded by a modest excise tax on vaccines. Eligible shots include tetanus, measles, mumps, rubella, polio, hepatitis B, and influenza. The cases are decided by special masters in the U.S. Court of Federal Claims.
Unfortunately, that perfectly sensible system has been eclipsed by a flawed and hastily arranged program put in place after the 9/11 terrorist attacks: the Countermeasures Injury Compensation Program, or CICP. If during a public health emergency someone suffers an adverse side effect from, say, a mass smallpox vaccination, they could file claims to cover lost wages and medical costs (at the very least).
The CICP looks like common-sense liability protection, but after the greatest public health emergency of our lifetime, it has become clear that it is not up to the task. Many claims have been summarily rejected, and aside from one recent large award, administrative masters had compensated a grand total of 15 individuals for less than $60,000 — none of them for Guillain-Barré.
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So why not make the Covid-19 vaccines eligible under the NVICP, the program that has worked so much better? To do so requires an act of Congress, and pandemic politics has put everything at a standstill.
Democrats, joined by the public health establishment, seemingly want to avoid anything that would cast aspersions on vaccines. Republicans, meanwhile, talk a big game about the downsides of vaccination but won’t approve the necessary excise tax on the pharmaceutical companies to fund victim compensation. The Vaccine Injury Compensation Modernization Act, which would add Covid-19 shots to the NVICP, is currently languishing alongside other legislation that would improve reporting protocols and add to the corps of special masters to adjudicate claims.
“We’re entitled to a reasonable alternative remedy to litigation,” said Christopher A. Dreisbach, legal affairs director at React19, an advocacy group for some 20,000 people suffering from adverse impacts from Covid vaccines. Dreisbach, who after his Pfizer shot was diagnosed with Chronic Inflammatory Demyelinating Polyneuropathy — essentially a recurring form of Guillain-Barré — said he didn’t expect much to happen in Washington before Election Day. But at least two current lawsuits assert that the existing government process for the vaccine-injured violates constitutional right; the suits might be worrisome enough for pharmaceutical companies to work more proactively with Congress and advocates on reform.
I wear no tinfoil hat, I assure you. I believe simply that as a society, we have an obligation to be fair and transparent.
Three years after my essay calling for an honest discussion of vaccine side effects, what’s most disappointing to me is that some medical and public health professionals still refuse to acknowledge empirical truths — and thereby give lawmakers and public health officials the cover they need to do nothing. Some doctors, including one of mine at a prestigious local hospital, deny to this day that Guillain-Barré is a side effect of the J&J shot. At a conference for GBS survivors, another told the audience they should go ahead and get vaccinated without worry. When I objected — I’ve been told I shouldn’t risk getting any type of shot for the rest of my life — he looked at me with obvious disdain, as if I was an anti-vaxxer, and rattled off what seemed like prepared talking points to deal with crazy people. My fellow journalists, meanwhile, have mostly cleaved to pro-vaccine orthodoxy, the New York Times being a courageous exception.
I wear no tinfoil hat, I assure you. I believe simply that as a society, we have an obligation to be fair and transparent. I’m asking for the ability to officially document what happened to me, in hopes of contributing data that the medical establishment and pharmaceutical companies can use to make a better vaccine.
Anthony Flint is an author living in Brookline, Massachusetts.