Vaccine Injury, Disability and Death: Making Space for Difficult stories
The stories of families suffering serious injuries are too often ignored, discredited, used to further anti-vaccine campaigns, or quietly accepted as a type of collateral damage in our noble war to eradicate the scourge of infectious disease from the planet.
Vaccine Injury, Disability and Death: Making Space for Difficult stories
By AMY WRIGHT GLENN / phillyvoice.com

The pediatric nurse slides a long, thin needle into my infant son’s soft thigh. His immediate screams quicken my heartbeat. I take a deep breath.

“It’s alright sweet boy,” I speak softly, holding him close, letting him cry, and then bringing him to my breast. “It’s alright.”

Gratefully, it was all right. Like the majority of children in the US, my son received his first round of vaccinations in accordance with the suggested guidelines of the US Centers for Disease Control and Prevention (CDC) and experienced no adverse reaction -- not even a slight fever.

But this is not every child’s story.

Tens of millions of vaccines are injected into US children annually and around 30,000 reports are made each year to the Vaccine Adverse Events Reporting System(VAERS). Of these, 10-15 percent are classified as “serious” – meaning 3,000 to 4,500 individuals suffer permanent disability, hospitalization, or death. Of course, the existence of a report doesn’t imply direct or even probably causation. Furthermore, not every parent or physician who suspects an adverse reaction files with VAERS -- even though reporting is required by law. In fact, one wonders how many Americans are even aware of the VAERS program founded in 1990. Given these complicating factors, the exact number of individuals seriously harmed or killed by vaccines is difficult to ascertain though they constitute, gratefully, a small minority.

Unfortunately, it’s easy to disregard the stories of vaccine injury, disability or death as statistically insignificant or inconsequential. Collectively we fiercely embrace a utilitarian ethic with regard to vaccine injury. The stories of families suffering serious injuries are too often ignored, discredited, used to further anti-vaccine campaigns, or quietly accepted as a type of collateral damage in our noble war to eradicate the scourge of infectious disease from the planet.

Within nine days of receiving a standard MMR II vaccine, Jacob Holms began to suffer from unexplained seizures, leading to encephalopathy, or global brain dysfunction.

Yet, the stories of parents living with the permanent disability of a child, or grieving the death of a child, matter. These parents followed the CDC script and visited a doctor’s office for routine inoculations only to discover that their children will never be the same. This profoundly matters.

Space must be made in our public discourse for their stories.

It behooves every American parent to be informed about the existence of VAERS and available government compensation should one’s child suffer due to a vaccine. The majority of us who walk away from a routine pediatric visit unscathed would be wise to stay abreast of vaccine injury rates, support adverse reaction prevention efforts and, most importantly, remain open to the suffering of those who experience vaccine injuries or death.

Six months of hell

Within nine days of receiving a standard MMR II vaccine, Jacob Holms began to suffer from unexplained seizures, leading to encephalopathy, or global brain dysfunction. A long and painful six months followed -- wherein the small child was hospitalized on multiple occasions.

In 2002, 1-year-old Jacob died.

His parents, Erin and Shawn Holms, petitioned the government for compensation via the National Vaccine Injury Compensation Program. Upon receiving a subsequent $250,000 check, Erin Holms remembers: “I can’t even describe the feeling. They’re like, ‘Oh, well, we’re sorry we killed your kid. Here’s some money.’”

The Holms, perceiving the government compensation as “blood money,” sought to hold Merck, the company that manufactured the MMR II vaccine liable. They lost in court.

In 1988, the National Vaccine Injury Act created the National Vaccine Injury Compensation Program – informally called “the vaccine court” -- to adjudicate and compensate victims of vaccine injury. With the creation of this court, the drug companies creating, manufacturing, and marketing vaccines are immune from being sued. Since its inception, the vaccine court has awarded approximately $3 billion to individuals seeking compensation due to claimed vaccine injury or death. Clearly, money can never replace the existence of a healthy child. Yet, when parents like the Holms suffer injury or loss, they can turn to the vaccine court for compensation even if they have to wait years for the processing of their case.

One safeguard against a decrease in vaccination rates is the public ridicule awaiting those who question the ever-increasing number of required immunizations.

While it is stipulated that a portion of the court’s funding must be directed toward increasing public awareness of its existence, according to an investigative Associated Press report last year, the court remains “obscure.” Furthermore, in AP interviews with federal officials and lawyers involved in court proceedings, it’s clear that a “large concern” with regard to publicizing the work of the court is that people may lose faith in the touted efficacy and safety of vaccines.

One safeguard against a decrease in vaccination rates is the public ridicule awaiting those who question the ever-increasing number of required immunizations. Even parents who were formally compensated by the vaccine court report feeling ridiculed. For example, in 2006, Florida couple Theresa and Lucas Black received a $2 million settlement along with $250,000 a year for medical expenses from the vaccine court. Why? Their 14-year-old daughter Angelica is permanently and profoundly disabled after receiving a standard round of inoculations at 3-months of age.

In an interview with The Charlotte Observer, Theresa Black reports feeling “bullied” earlier this year when reports of measles outbreaks led to harsh judgments of parents who challenged the normative practice of submitting to routine vaccines. Some even called for the incarceration of parents who don’t vaccinate.

Theresa Black states: “I am not a freak. I am not trying to endanger anyone’s child. … I actually think vaccinating is a good thing. My problem is I don’t think they are as safe as they could be. … There are bad things that happen.”

She is speaking from direct experience.

Means to an end

Nineteenth century British philosopher Jeremy Bentham argued that an action is morally permissible if it serves to increase the greatest good for the greatest number of people. Contrast Bentham’s utilitarian ethic with German philosopher Immanuel Kant’s deontological, or duty based, moral theory. According to Kant, individuals are not means to be used to justify an end, no matter how pleasing or far-reaching such an end may be. Individuals are “ends unto themselves.” In other words, we have value independent of our usefulness to society.

In all of my encounters with pediatricians, I never once was asked a single preliminary screening question to ascertain if my son has an “underlying susceptibility” that could make receiving a vaccine dangerous. I imagine I’m not alone in this regard.

Of course, it is not the intention of well-meaning scientists or doctors to use people in the pursuit of wellness. The invention of vaccines is often lauded as one of the most beneficial advancements in the history of medicine. According toGavi, the Vaccine Alliance , an estimated seven million lives have been saved since 2000 due to the efforts of the many governments and corporations funding their program. Acknowledging this tremendous good doesn’t mean that one must blindly accept a “vaccines are always safe and effective” sloganeering – which even those deeply invested in the manufacturing, monitoring, and marketing of vaccines acknowledge isn’t true.

Just this month, a new medical textbook, entitled “Vaccines and Autoimmunity” was published. Featuring the work of dozens of scientists and physicians, the text was edited by Yehuda Shoenfeld, founder of Israel’s Center for Autoimmune Diseases, Nancy Agmon-Levine, President of the Israel Association for Allergy and Clinical Immunology, and Lucija Tomljenovic, a senior post-doctoral fellow at the University of British Columbia.

In their introduction to “Vaccines and Autoimmunity,” the editors acknowledge that vaccines can trigger “severe and even fatal” reactions in certain individuals and that this is of particular concern as vaccines are “administered to healthy individuals.” The editors raise questions about the trace amounts of “residuals” -- such as monkey kidney tissue, detergents, and preservatives -- whose safety “has not been thoroughly investigated” and decry the naïve assumption that “all humans are alike” in their immunological reactions to vaccinations. They continue: “… the fact that vaccines are delivered to billions of people without preliminary screening for underlying susceptibilities is thus of concern.”

In all of my encounters with pediatricians, I never once was asked a single preliminary screening question to ascertain if my son has an “underlying susceptibility” that could make receiving a vaccine dangerous. I imagine I’m not alone in this regard.

Our state governments are quickly introducing and approving legislation that overrides the rights of parents to determine if and when they expose their children to the risks entailed in vaccinations.

As a mother who does choose to vaccinate -- albeit at a slow, studied, and selective pace -- I very much understand why we prefer to celebrate the eradication of rubellarather than make space for the difficult stories of children like Jacob Holms and Angelica Black. Yet, we can make room for the stories of lives adversely impacted by vaccines without falling prey to a rhetoric that would have us believe the fear evoked by such stories is proportional to the risk. We can also make room for stories of loss without looking with disdain upon on individuals who raise important questions in our laudable effort to vanquish infectious diseases.

Many, like myself, pose critical questions but are not anti-vaccine. Consider the words of award-winning author Jennifer Margulis Ph.D. In a 2010 letter to PBS Frontline following the release of their documentary “The Vaccine Wars,” Margulis writes: “ I am not anti-vaccine, I am pro-questions. Parents should feel free to question their healthcare providers before agreeing to injections that contain substances whose effects may not be fully understood.”

Our state governments are quickly introducing and approving legislation that overrides the rights of parents to determine if and when they expose their children to the risks entailed in vaccinations. At the same time, according to the World Health Organization, the global vaccine market will increase in value from $25 billion a year to $100 billion a year by 2025 “becoming an engine for the pharmaceutical industry.”

Given these legal and market-driven realities, we must make space for the stories of families who pay the price of our increasingly mandated utilitarian ethic.

 

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Vaccine Injury, Disability and Death: Making Space for Difficult stories