When her 5-year-old daughter became severely ill from vaccines she was required to take,Janet Zuhlke's life spiraled into a routine of hospital visits and worrying.
To receive help with the mounting medical bills,the Satellite Beach,Fla.,woman applied for assistance from a government program designed to compensate parents whose children get sick from vaccinations.
What followed,though,was nearly 11 years of legal conferences and bureaucratic roadblocks. In the meantime,Zuhlke paid more than $25,000 out of her own pocket in medical costs for her daughter,Rachel,now 16. And her health continues to deteriorate,Zuhlke said.
Zuhlke was one of three parents to testify Thursday before a House of Representatives committee about the problems they have faced under the Vaccine Injury Compensation Program.
The federal government has awarded more than $1.2 billion since the program was established in 1986. Not everyone,however,has benefited,lawmakers say. About 70 percent of families who have filed petitions for relief-3,664 out of 5,284 claims-have been turned away.
“One of the problems with the system … is that we've allowed attorneys to run this,” said Rep. Dave Weldon,R-Fla.,who is a physician. “I think there's a pretty broad-based agreement that changes need to be made.”
Weldon and Rep. Jerrold Nadler,D-N.Y.,introduced a bill last March that would tear down some of the roadblocks that have made it difficult for families to receive compensation.
It often is tough to prove that a child's illness was caused by a reaction to a vaccine or some other source,lawmakers say. Under the new bill,families are given the benefit of the doubt under such circumstances.
“We're supposed to be helping these people,” said Rep. Dan Burton,R-Ind.,chairman of the Government Reform Committee,which heard the testimonies. “But if you talk to some of these families,they feel like they've been put through the ringer by their own government.
Another parent,Harold Sword of Columbus,Ohio,said that he has had an adversarial relationship with the government ever since he began seeking compensation for the death of his daughter,Natalie Nicole.
On May 13,1975,three-month-old Natalie died just four hours after a routine vaccination. An autopsy revealed she had died of Sudden Infant Death Syndrome,or SIDS.
Sword said he has always doubted the diagnosis. After reading about the compensation program in 1990,he decided to file a claim.
The case dragged on as Sword waded his way through numerous conference hearings and litigation. Finally,in 1999,he won his award on an appeal.
“When an unexpected injury does occur,” said Sword of his daughter's death,“I can tell you from experience (that) the last thing a family needs is … a complicated ordeal compounded by adversity. What families do need is a reliable safety net.”
Between 12,000 and 14,000 children are injured or die each year from vaccines. In 1990,Zuhlke's daughter became one of them.
Within six hours after receiving two vaccines,Rachel began vomiting and complaining of eye pain,Zuhlke said. She called the doctor's office,where a receptionist told her that the symptoms were unrelated to a reaction from the vaccines. It wasn't until about 20 days later that hospital tests were performed,which revealed the young girl had contracted Post Vaccine Encephalitis.
“You can't imagine the depression,” Zuhlke said after her finishing her testimony. “When you've got a terminally ill child and you've got to go through this battle-and it has been a battle-it's very traumatic.”
Weldon's bill-which has 17 co-sponsors representing both Democrats and Republicans-remains in committee discussion.