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Wayne Rohde knows what it’s like to have a child injured by a vaccine — his son was diagnosed with an encephalitic brain injury at 13 months old, after getting the measles, mumps and rubella (MMR) vaccine.
Rohde also has personal experience navigating the process of trying to get financial compensation for a child’s vaccine injury.
The author of “The Vaccine Court 2.0: Revised and Updated: The Dark Truth of America’s Vaccine Injury Compensation Program” (2021) sat down with The Defender to discuss how the National Vaccine Injury Compensation Program (VICP) has evolved — or devolved — in the last two decades to protect government agencies and corporations rather than the health of vaccinated children.
The VICP, which came to be known as “the vaccine court,” was established in 1988 by the U.S. Department of Health and Human Services (HHS) to compensate individuals and families of individuals injured by covered childhood vaccines.
It has drawn fire for its highly adversarial process and its decisions regarding what injuries it would compensate, including its refusal to recognize autism as a potential vaccine injury.
Rohde, a co-founder of Vaccine Safety Council of Minnesota and the Autism Advocacy Coalition of Minnesota, became involved in vaccine safety and compensation issues because of a vaccine injury to his son Nicholas in 1998.
Nick and his fraternal twin brother, Austin, were born in October 1997, 10 days apart. Rohde said of their birth:
“They were a little bit premature, so we had to keep them in what they call the NICU [neonatal intensive care unit] for a month or so, and then we brought them home. But they quickly progressed, reaching all their developmental milestones at the age of 12 months — size, weight, actions, speech, everything — at 12 months they were there.”
In the boys’ 13th month, Rohde and his wife, Robyne, took them to the pediatrician for their first set of vaccinations, having chosen not to do any newborn vaccinations while the twins were in the NICU.
Rohde described what happened next:
“Nick had a severe reaction to the MMR vaccine and we went through a period of about two weeks of solid crying, screaming, vomiting, diarrhea, high temperatures and everything … then he began to settle down from that.
“We also noticed that he arched his back quite a bit from the reaction so we know that he was having a severe reaction.”
Then Nick was diagnosed with an encephalitic brain injury, Rohde said.
“Over a period of probably two years from then,” said Rohde, “he began the slow regressive journey of losing his speech, his ability to communicate or play socially with his brother and wanting to be isolated and do his own thing.”
“My wife suspected that there were some issues with the vaccination,” Rohde added. “But the pediatrician told us, ‘No — Einstein didn’t speak until he was 5 years old.’ But Nick had already been speaking when he suffered the injury.”
It took years of consulting doctors and specialists before Nick in 2003 was diagnosed by a Columbia University-trained psychiatrist in Tulsa, Oklahoma, with regressive autism.
“We were afraid going in that this would be the diagnosis,” Rohde said. “The doctor then handed us two pages, Xeroxed out of a textbook, on autism, and a prescription for Ritalin and said, ‘This is all I know what to do.’”
Robyne began researching vaccine injuries and discovered the National Vaccine Information Center (NVIC) — a group co-founded by Barbara Loe Fisher, one of the parents who first lobbied Congress to pass the VICP in 1986.
Through the NVIC, the Rohdes made contact with attorney Clifford Shoemaker, who specialized in vaccine injury.
Shoemaker, a frequent advocate for the vaccine-injured before the VICP, reviewed the three banker’s boxes of medical records Rohde had accumulated and said, “Man, you guys got a great case for encephalopathy and vaccine injury, except you have one problem.”
“What’s that?” asked Rohde.
“Statute of limitations,” Shoemaker told Rohde.
“You only have three years from the onset of symptoms to file,” said Rohde, “and we were already [at] three years, nine months — we were past it, so that was really frustrating for us, so we said, ‘Well, what do we do?’”
Fighting for coverage for children with autism
Rohde became involved with compensation and coverage issues for children with autism.
“We were paying $3,000-$3,500 a month out of pocket for treatment for Nick — none of it was covered,” said Rohde. “So we started to advocate for changes to the law regarding insurance.”
“When the autism insurance coverage fight started in Oklahoma, I knew it was going to be a very difficult process,” Rohde told The Defender. “Oklahoma being very conservative, having the government require a business to do something was not a welcomed thought.”
“But we showed the cost of ignoring the problem and how the taxpayers were going to be on the hook,” he wrote.
Rohde lined up the conservative Democratic Sen. Jay Paul Gumm to help with the fight.
“The legislation quickly was nicknamed ‘Nick’s Law’ and it radiated across the state and by 2008, it was recognized across the country,” he said.
According to Rohde:
“A statewide poll was conducted by a highly credible polling service and the results told us the following: Nearly 80% of people thought autism should have insurance coverage. It [crossed] the political spectrum. That showed the public that the state Chamber of Commerce and the insurance lobby was against Nick’s Law. And that Nick’s Law had the support of the people of Oklahoma.
“We had loosely organized groups and organizations fighting together. We welcomed so many. Lots of people wrote letters telling me that they sold the farm to help pay for treatments for their son. Sisters cashing in college funds so their brother can get treatments. Third-generation ranchers selling their ranch so their granddaughter could get the help she needs.”
While the law, killed in committee, did not pass in Oklahoma while Rohde was a resident, a version of Nick’s Law passed in Texas in 2009, and similar legislation cleared the Michigan legislature in October 2012.
Illustrating the patchwork of state insurance coverage laws that characterize the healthcare system in the U.S., Rohde and his family eventually had to move to Minnesota, where Robyne got a job with private insurance that covered much of Nick’s treatment.
In 2012, Oklahoma passed a bill similar to Nick’s Law, joining a number of other states, including Arizona, South Carolina, Texas and Illinois.
According to Rohde, most states and federal employers now offer coverage for autism treatment due to the nationwide movement sparked in Oklahoma.
Questioning the ‘Vaccine Court’
“But the statute of limitations issue in the VICP kept bothering me,” Rohde said.
In 2010, Rohde contacted attorney Mary Holland, a vaccine injury advocate and current president of CHD — and other vaccine injury advocates including Robert Krakow, Louis Conte and Lisa Colin, who were then writing a scholarly legal paper, “Unanswered Questions from the Vaccine Injury Compensation Program.”
Published in 2011, the paper reviewed the decisions of the VICP in regard to autism injury cases.
The authors analyzed the decisions of the VICP in its unprecedented “omnibus” review in 2002 of more than 5,000 petitions filed by families claiming vaccines caused their children’s autism.
Holland and her co-authors wrote, “The VICP dismissed all the ‘test case’ claims of vaccine-induced autism, and the Court of Appeals for the Federal Circuit upheld all the decisions on review.”
In essence, this decision established the legal precedent that vaccines do not cause autism.
But Rohde agreed with the paper’s conclusion that “despite apparent judicial clarity and finality in these decisions, significant questions remain.
According to the paper:
“Are the cases of ‘autism’ that the VICP rejected in the Omnibus Autism Proceeding really different from the cases of ‘encephalopathy’ and ‘residual seizure disorder’ that the VICP has compensated before and since? Is it possible the VICP rejected cases of ‘autism’ because of the hot-button label and not because of real differences in injuries or evidence?
“This preliminary study suggests that the VICP has been compensating cases of vaccine-induced encephalopathy and residual seizure disorder associated with autism since the inception of the program.
“Through this preliminary study, the authors have found eighty-three cases of autism among those compensated for vaccine-induced brain damage. This finding raises fundamental questions about the integrity, transparency, and fairness of this forum.”
Rohde asked Holland what he could do to support efforts to obtain justice for the families of the vaccine-injured.
“Talk to the families,” she told him.
Rohde said, “I spent the next three years interviewing over 285 families about their experiences with the VICP, and said, ‘Okay, I’m going to put this together in a book, because people need to know about this,’ and so by 2014, I published the first book about the VICP, ‘The Vaccine Court: The Dark Truth of America’s Vaccine Injury Compensation Program.’”
The book included interviews with families who sometimes spent years navigating the court to obtain compensation for their children.
In researching the original and the revised edition, Rohde discovered that successive secretaries of HHS were in violation of the law by failing to publicize the program to make parents aware of their options if they believed their child was injured by a vaccine.
“All the secretaries of HHS going all the way back to 1988 refused to publicize it,” he said. “They would not out of fear … if the public knew this was there, people wouldn’t vaccinate their children.”
Rohde also followed the money — and found that a lot of it wasn’t going to compensation.
The money meant to compensate victims is housed in a federal trust fund under the U.S. Department of the Treasury.
“The federal government’s putting their hand into the kitty, so to speak,” Rohde said, “and taking part of it off the top, so the federal government is motivated to keep the program the way it is because they’re receiving lots of money from it.”
Rohde said that, by law, the government can take 25% of funds received under the program to administer the VICP.
So the fund should deliver to victims 75 cents on every dollar, Rohde said, “but since many vaccine injuries involve multiple antigens delivered by one shot, the government is able to do the accounting so that it works out to more like 59 cents on the dollar.”
“The program is skewed to benefit the federal government and the pharmaceutical industry, naturally,” he said.
Rohde believes the program became even more favorable to the pharmaceutical industry in 2011, when the Supreme Court ruled 6-2 (Justice Elena Kagan recused herself) in Bruesewitz v Wyeth LLC that vaccine manufacturers could not be held liable for design-defect claims against them brought by plaintiffs seeking compensation for injury or death caused by a vaccine’s side effects.
This decision stripped away a provision of the National Childhood Vaccine Injury Act that allowed vaccine-injured plaintiffs to take their case to civil court if they were unsatisfied with the decision of the VICP.
One could say the VICP, once an administrative review of first resort, became — thanks to the Bruesewitz ruling — the “vaccine court” of first, last and only resort.
“If you want to know what this ruling did, read Justice Sotomayor’s dissent,” said Rohde. “She lays out what this is all about, what the program [VICP] is all about, and the problems we have faced since 2011 as we’re no longer able to sue the pharmaceutical industry.”
“Yes, that Sotomayor,” Rohde added. “The one who spoke in oral arguments so ignorantly about kids hospitalized with COVID-19 last year. Vaccine politics can make for strange bedfellows.”
‘The vaccine court no longer protects children’
Rohde pointed out that with the failure to cover autism injuries, the VICP began to move away from compensating injuries to children and began to compensate adult vaccine injuries instead.
“It’s funny,” Rohde said. “93% to 96% of all compensated cases [presented to] the VICP are now adults.”
Most of the cases now compensated, according to Rohde, involve adults who had an adverse reaction to the flu shot or DTP vaccine — in either the form of shoulder injuries due to improper administration of the vaccine, or Guillain-Barré syndrome in the wake of vaccination.
The shoulder injuries, which often involve surgery or extensive physical therapy to address, are mostly a result of people getting vaccinated by pharmacy technicians at “Walmart and CVS,” according to Rohde.
“The shot is supposed to be delivered at a 90-degree angle,” said Rohde, “and not too high up the shoulder, but these jab jockeys wouldn’t know or wouldn’t follow procedure and so a lot of people got a shoulder injury related to vaccine administration.”
“It’s almost like 80% of all petitions filed were for shoulder injuries and Guillain-Barré syndrome, and last year, 96% of all compensated cases were for adults. So children are being forced out of the program.”
Rohde said the main reason for this is that the VICP’s “special masters” (essentially the “judges” of the vaccine court) raised the bar on compensation for childhood vaccine injuries such as Sudden Infant Death Syndrome (SIDS).
“They started introducing junk science, including small studies with ambiguous results, to take things like SIDS and epileptic reactions in children to the DTP out of contention,” Rohde said.
“The special masters told attorneys you’re not going to be able to bring a case of SIDS; if you do you’re not going to be compensated for your time and your efforts, not going to be reimbursed, so basically what they’ve done is made it at such a high, extraordinary burden of proof, no one’s going to bring a SIDS case.”
Cases involving Gardasil injuries are also difficult to file, said Rohde. “Gardasil is causing sterility in young women vaccinated in their early teens, and these [cases] are being dismissed on statute of limitations.”
“These girls are getting vaccinated at the ages 11, 12, 13, or 14,” Rohde said. “But they won’t figure out that they’ve got a problem until they start thinking about having a family, maybe in their early to mid-20s or later.
Because by then the three-year period has passed, these people cannot file claims.
“So the program,” said Rohde, “is set up to fail.”
‘Cheerleaders and stenographers’
“In our country, we are so gung-ho on vaccinating everybody and then compensating a few people, but there is actually no research into what we call medical outcomes — and that is going back to the individuals and finding out why they had a reaction,” said Rohde.
“The injured are the collateral damage in the government campaign to promote universal vaccination, while the public health officials act as cheerleaders and the press act as their stenographers.
“But when you develop Guillain-Barré syndrome and are confined to a wheelchair a month and a half after your tetanus booster, something is happening there, but nobody’s looking into it, because we don’t want to find out the cause.
“That’s why Bobby Kennedy and everybody else is correct when they advocated for getting rid of the [Centers for Disease Control and Prevention] and [U.S. Food and Drug Administration] because they’re captured agencies. They are, and we need to have agencies that actually look out for the safety of the public.”
Lessons to learn
When asked what lessons he learned in his advocacy for vaccine safety and medical freedom, Rohde offered some unusual, perhaps even controversial, nuggets of wisdom.
First, he believes the vaccine-skeptical community made a strategic error in emphasizing autism in its efforts to achieve compensation for vaccine injuries.
In a few cases, the VICP has compensated for “autism-like symptoms” but generally they “wordsmith like crazy” to get around saying that ‘vaccines cause autism,’” Rohde said.
“But I also think we made a big mistake in the vaccine-skeptical community: Vaccines cause encephalopathy, they cause encephalitis, they cause seizures, which may develop symptoms down the road leading to autism — that’s where I think we should have gone.”
Second, Rohde said, “we have to keep the politics out of it.”
“The politics are so polarizing. I know politicians who privately tell me they won’t sign on to legislation regarding vaccines because of the politics of other people who have sponsored that legislation,” he said.
When Rohde fought for Nick’s Law, he was able to garner broad bipartisan support — perhaps because people across the political spectrum were sympathetic to the needs of children with autism.
The dilemma is how to straddle the political divide when it comes to issues of vaccine mandates, medical freedom and parental control.
Rohde thinks part of the answer might lie in the hundreds of thousands who have reported injuries after COVID-19 vaccines.
According to Rohde, 7,600 injury claims related to COVID-19 countermeasures are pending before the Countermeasures Injury Compensation Program (CICP) — the administrative program that covers COVID-19 vaccine injuries — but only one for which compensation is currently being considered.
Rodhe says a source within the CICP told him this one case is not a vaccine injury case, but is related to a clinical treatment given to a patient who had COVID-19.
“Now, a lot of the COVID vaccine injuries are people who thought they were doing the right thing,” he said. “They believed in the vaccine, and they believed in the message from the public health officials in the government who said, ‘Hey, we need to stop the spread of the virus,’ so they went and got injured.”
“And now the medical community, public health service and the government have turned their backs on these people.”
“It’s very similar to what we were dealing with 15 and 20 years ago with the injuries to our kids.”
“We’re just reliving a recycle of history,” he said, “but with COVID there are a lot more people being injured. The numbers are so huge, we cannot continue to deny what’s happened.”
We must help those who have been injured, he said, ensure people’s medical and religious freedoms, and prevent employers or governments from ending these freedoms.
“These limits on personal and familial freedom go against everything that we stand for in America,” Rohde said.