03/29/2001

Public Good, Private Pain

Parents want to pass on vaccines they call dangerous.

By Beth Enochs

He doesn't know a stranger.

A greeting from Jacob Williams is enough to make a grownup feel like Santa Claus. The affection of the happy 5-year-old in cargo shorts is innocent and immediate when he interrupts his razor scooter ride to say hello.

But Jacob's hello offers initial clues to the disturbing reality of his life. Instead of giving a hug, he pulls a visitor's free hand to his face to stroke his cheek. He utters a garbled series of vowel sounds and looks into his new friend's eyes for comprehension.

The eye contact lasts only a second. Then, in a flash, he's sitting on the floor in the family room, molding perfect round balls from a lump of red Play-Doh his mother slips into his hands. His gaze wanders from his hands to the ceiling to the table, fixing only momentarily on anything. Still, he's intent on his project, unaware of the adults in conversation around him. His mother explained Jacob's speech: "He's saying, 'I'm your boy; I'm your boy.' It's his 'hi.' "

Jacob has autism, known medically as Pervasive Developmental Disorder. His mother said flatly that his condition was caused by childhood vaccinations.

"He was a healthy, big baby. Normal. After his first DTP [diphtheria, tetanus, pertussis] vaccine, he was fussy, and the lump at the injection site was big, hard," Mika Williams recalled. The symptoms were those of a mild DTP reaction.

Then, around the time of his first birthday, Jacob received the set of vaccinations known as MMR, for measles, mumps, and rubella. After that, "He screamed all night for about six months. He began banging his head against the wall, spinning in place, running headlong into the sofa," Jacob's father, Gary, said. "His babbling stopped. He quit saying mama and dada at about 18 months. It hurts to look back."

Mika, 28, and Gary, 33, eagerly offered Jacob's medical records and studies describing cases like his. They have joined with other concerned parents in an organization called PROVE (Parents Requesting Open Vaccine Education) to insist that parents in Texas should have the right to a "philosophical" exemption from the state-mandated immunizations such as those the Williams believe shoved Jacob into the foggy world of autism.

Current law allows parents to refuse a child's vaccinations on religious grounds or for medical reasons and still enroll the child in public school. Like those who objected to the Vietnam War on non-religious grounds, parents who object simply on grounds of conscience, philosophy, or generalized fear of the vaccines are not covered by the exemption.

Such fears are not entirely groundless. The federal government withdrew approval of a rotavirus vaccine in 1999 after it was found to cause intestinal problems leading to dehydration deaths. And last week, a Dallas law firm filed suit in Austin against a major pharmaceutical company, alleging that its vaccines exposed children to mercury poisoning -- the first of many such lawsuits against the vaccine industry to come nationwide, the lawyers predicted.

Worried about the prospect of thousands of unvaccinated children bringing dangerous diseases and perhaps even epidemics to Texas schools, some medical authorities oppose a broader exemption. They believe that the science linking vaccines to such problems as autism is too weak to overcome the public-health advantages of immunity.

But a Democratic state senator and a Republican representative believe there's enough cause for concern that they've filed bills to put the exemption that Mika and Gary Williams want into law.

Fort Worth's Sen. Mike Moncrief and State Rep. Rick Green of Dripping Springs wrote their proposals after bringing together major stakeholders from both sides of the issue. They would allow parents to receive exemptions on philosophical as well as religious or medical grounds.

The legislation -- expected to be controversial -- would establish a vaccine advisory board and require that children's vaccination records be reported to the state immunization registry. Parents who took the exemption would be given information on the risks to their children of such a course.

Some medical experts believe that's the point -- that such parents are concerned about their own children without worrying about the effects of lowered vaccination rates on hundreds or thousands of other children.

Dr. Mark M. Shelton, medical director of the infectious disease department at Cook Children's Medical Center, pointed to a Colorado study released in December that concludes that, in the event of an outbreak of measles, for example, "more vaccinated than unvaccinated children would get sick." The reason: about 5 percent of vaccinated children do not develop immunity, a group that would outnumber the unvaccinated children.

"On the basis of medical science, I oppose the philosophical vaccine exemption," Shelton said. He maintains that Texas already provides an across-the-board exemption: "Parents can simply remove their children from the public schools." No, he doesn't believe such a solution represents Big Brother blackmail -- just good public policy. "These vaccines aren't perfect, but these are not trivial diseases," he said. "I have seen deaths from measles, permanent neurological damage."

But Dawn Richardson, speaking for PROVE, contends that more children are now being harmed by adverse reactions to vaccines than are likely ever to die in a measles epidemic. That would be so, she said, even if a broader exemption causes the vaccination rate to drop by the predicted 2 to 4 percent.

"Instead of the rare deaths and severe cases of the illness itself in an epidemic that isn't likely to happen, we point to the far greater number of adverse reactions and deaths reported in children who receive the MMR vaccine," she said.

Those reports come from the Vaccine Adverse Event Reporting System, an 11-year-old federal database that receives 1,000 reports a month. It provided the first reports of autism in children possibly linked to the MMR vaccine.

Parents' rights groups note that only one in 10 adverse vaccine reactions are reported. Richardson points to a February report showing that 40 percent of doctors don't discuss vaccine risks with parents or the need to report an adverse reaction.

"If there are reactions, we hear about them, and we study them scientifically," said Shelton. He dismisses the British study linking autism with the MMR vaccine as "hogwash," because of the study's weak design and the fact that four of the 12 subjects demonstrated behavior regression before their MMR shots. Two other recent papers conclude there's no link.

"Current research points to autism as almost certainly a genetic disorder, usually developing around the time a child gets the MMR vaccine -- a coincidence in every case," he said confidently.

He has similar objections to health problems allegedly connected to other vaccines. Reports of seizures and other problems with the DTP vaccine have been taken care of with a new version of the inoculation, he said. The supposed association between hepatitis-B vaccine and auto-immune illnesses, he said, simply wasn't there, when controlled peer-reviewed studies were done recently.

Parents'-rights groups want the right to make decisions about their children's health care based not simply on hard science, but also on intuition and circumstance.

"The one-size-fits-all laws surrounding this issue don't take into account the individual child," Richardson said. "If a child is in a loving home with a knowledgeable family instead of day care, the hepatitis-B vaccine isn't always necessary.... Why expose that child to vaccines with proven or unproven risks? Parents should have control over the care of their children."

For Mika and Gary, caring for Jacob means intense daily structure, including afternoons spent on a treatment treadmill: occupational and speech therapy, and two hours of the intensive, one-on-one, unrelenting exercise called Applied Behavior Analysis -- the most effective treatment for the communications problems of autism.

As Mika talked to her visitor, Jacob interrupted, asking for snacks or a trip to his backyard trampoline. Occasionally, he made his frustration clear with loud staccato shrieks. Mika didn't react -- she saves her expressions of frustration for the medical and legal community she blames for her son's condition.

In general, doctors, insurers, and vaccine manufacturers hold that broad public-health concerns make acceptable the low amount of risk they say vaccines pose, and that those concerns take precedence over parents' right to decide their children's medical care.

Tom Winkler, a Garland physician, doesn't see it quite that way. He cares more about helping his autistic daughter than worrying about what caused her condition. But he understands other parents' concerns.

"We may eat our words about vaccines one day in the medical community," he said, "and it's not inappropriate to ask now if we're flawless in our dogma."

Or, as another parent said sardonically, "Science ain't God."

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