The medical community must stop gaslighting COVID vaccine victims like me 

Vaccine adverse effects are real. I know it makes some people uncomfortable to acknowledge this, but alongside the benefits of vaccines, there are cases of profound harm.

I am living this reality daily, and I want to live in a world where these harms are adequately addressed. 

Recently, the New York Times covered my story: “Thousands Believe COVID Vaccines Harmed Them. Is Anyone Listening?” Sadly, no one is listening yet, and very few people are willing to help. 

I am a research nurse practitioner who has dedicated my professional career to community health and clinical research, including vaccines. My beliefs are firmly rooted in science.  

Three years ago, when the COVID-19 vaccine emerged, I stepped forward to receive it. What followed was unexpected and devastating. 

Within hours I developed tingling along my right arm, which over days radiated across my body. A neurologist and colleague recommended that I proceed with a second dose. With the vaccine mandate from my employer at the top of my mind, I proceeded, against my own medical judgment.  

After the second dose, my condition rapidly worsened. I developed positional tachycardia, wildly fluctuating blood pressures, internal tremors, electrical zap sensations on my legs, intense right-sided headaches, abdominal pain and severe tinnitus. I struggle to live with all of this and more to this day. 

I am a registered Democrat. It turns out that vaccines do not care about your political ideology. Regardless of political beliefs, health care must transcend partisan debates. I find myself trapped in a polarized discourse, where nuanced discussions are suppressed, and both political and scientific support are elusive. 

The reluctance to engage in honest, open dialogue about vaccine injuries perpetuates unnecessary suffering and isolation for the thousands affected.   

We are in desperate need, but we feel both abandoned by the communities that champion vaccination and co-opted by those opposed to vaccines. We are caught between accusations of jeopardizing vaccine efforts and assertions that we deserve our suffering. This only exacerbates our trauma. 

Medical gaslighting, coupled with the absence of legal recourse or adequate compensation, compounds the challenges we endure. When I reach out for help, my pleas often fall on deaf ears, or I am disparaged as a misinformed “anti-vaxxer.”   

Policymakers and scientists, distanced from the harsh realities of vaccine injuries, must rekindle their compassion and acknowledge the urgency of our plight. Minimizing our suffering as rare occurrences undermines the urgency to address the systemic flaws in vaccine compensation and support mechanisms.   

I need to believe that our lives are more than just epidemiological data points. 

Despite these hardships and the desperate need for research and medical care, there are legislative steps we can take to alleviate the suffering of those impacted by COVID vaccine injuries.  

In the U.S. there are two mechanisms used for compensating vaccine injuries. Most vaccines are covered under the Vaccine Injury Compensation Program, which provides a fairer chance at meaningful compensation.  

The COVID vaccines, however, were placed into the Countermeasures Injury Compensation Program. This mechanism for compensation is fraught with problems. The scope of injuries is severely limited, the window to file a claim is short, there is no judicial review, no legal representation, and compensation rates are so low as to be meaningless.

As of June 2024, there have been over 13,000 claims filed and only 13 approved, with the highest compensation being less than $10,000. The burden of proof is so high that almost no amount of evidence is sufficient to satisfy a claim. With minimal research into COVID vaccine adverse reactions, evidence is nearly impossible to provide.   

There are also two House bills (two House bills that recognize and attempt to remedy flaws in the system. The most important, immediate action is to pass these bills to move the COVID vaccines from the Countermeasures Injury Compensation Program to the Vaccine Injury Compensation Program.   

Our commitment to vaccine safety should not waver. Pharmacovigilance is the detection, assessment, understanding and prevention of pharmaceutical adverse effects. Strengthening compensation mechanisms and enhancing pharmacovigilance are not just policy imperatives – they are moral imperatives. By implementing these necessary reforms, we can bolster trust in public health and vaccines.

I share my story not as an indictment of vaccines but as a call to action. We have an ethical responsibility to provide urgent support for those, in doing what the government asked of them, experienced life-altering, disabling COVID vaccine adverse effects.  

Shaun Barcavage is a Research Nurse Practitioner from New York, N.Y. who has dedicated his professional career to community health and clinical research. Most recently, he was employed by Weill Cornell Medicine and worked during the pandemic conducting research on therapeutics and vaccines. He established one of the first online support groups for individuals suffering hearing loss/tinnitus (ringing in the ear) post-vaccination.