The sign announced a meeting of PAVE -
People Advocating Vaccine Education.
Inside, Lisa Jillani, who founded the Charlotte group sixyears ago, wore a
T-shirt with the message: "Vaccination. Don't Be A Victim."
About 20 people came to the recent gathering to hear Jillani
and other parents share worries about the multiple immunizations required by
law before children can enter kindergarten or go to day care.
One mother described fevers and seizures her children suffered after they
received vaccinations. She described the resistance she encountered when she
tried to get medical exemptions from the law. Others shared what they'd read
in books and on the Internet about possible links between vaccines and autism
or lupus.
Jillani's group is one of many grass-roots organizations across the country,
launched by parents convinced of the dangers of vaccines for some children.
With access to the Internet, these small, but vocal groups are spreading
their stories faster than ever.
Earlier this month, a coalition of law firms filed class-action suits, led
by an Oregon woman who claims her son became autistic because of a
mercury-containing preservative in vaccines.
The anti-vaccine campaign worries U.S. public health officials, who tout
the success of vaccines at virtually wiping out once-dreaded diseases, such
as polio and smallpox. If immunization levels are allowed to drop, they warn,
the country could see a recurrence of diseases that young parents have never
experienced.
But Jillani and parents like her are convinced: "There's a dark side
to vaccination that people don't know about."
`In her own little world'
Like other dutiful mothers, Jillani took her newborn
daughter, Samantha, to the doctor for required immunizations. As months passed,
she began to notice "a gradual fading away" in her daughter. After
the fourth of five sets of shots, Samantha "acted like she was in her
own little world," Jillani said. " She acted like she was drunk
sometimes."
Samantha, now 9, was 3 when she was diagnosed with sensory integration
dysfunction, a milder-than-autism disorder. Doctors couldn't identify a
cause.
After some research, Jillani and her husband, A.J., became convinced that
her problems came from vaccines. They agreed that their second daughter,
Madison, now 5, would get no vaccinations.
The Jillanis' pediatrician, who disagreed with their anti-vaccine stance,
refused to see them any more. And when Madison was born, the couple felt
hospital nurses and doctors tried to intimidate them into accepting shots.
"It was just a very hostile experience that I didn't think other
people should have to go through," Lisa said.
A few months later, she started PAVE.
Vulnerability issue raised
Meanwhile, mainstream organizations, such as the federal
Centers for Disease Control and Prevention, the American Academy of
Pediatrics and state and local health departments, stress that a drop in
vaccination levels could be devastating.
"Our very success is our worst enemy," said Dr. Samuel Katz, a
Duke University pediatrician and co-chairman of the National Network for
Immunization Information.
"Young parents today, and young physicians and nurses, have rarely
seen measles, polio, meningitis, whooping cough, because we have been so
successful at preventing them. But we are quite vulnerable. These occur
everywhere throughout the world."
Katz recently returned from Africa, where he saw children with measles and
polio.
"There is no U.S. strain of measles any more, but we haven't
eliminated it from Japan, the Congo and India," he said. "If we
stop immunizing our kids, we can't just sit back and say, `We don't have it
here. We don't have to worry.' This is just a jet plane away."
Ground-breaking book
Concerns about vaccines got attention in 1985 with the
publication of a book called "A Shot in the Dark" by Barbara Loe
Fisher and Harris L. Coulter. Fisher founded the National Vaccine Information
Center, the most prominent of the groups questioning vaccine safety.
Fisher wrote the book after her son developed neurological and cognitive
disorders following a pertussis, or whooping cough, vaccination.
At the time, the pertussis vaccine was made with whole-cell pertussis
bacteria and combined in one injection, called DTP, with vaccines for
diphtheria and tetanus. Subsequently, health officials acknowledged that the
whole-cell vaccine caused adverse reactions, such as fever, soreness,
prolonged crying and seizures. The whole-cell vaccine is still available, but
in 1996, the FDA licensed DTaP, which doesn't use the whole-cell pertussis
bacteria and produces fewer, milder reactions.
Duke University's Katz said the whole-cell vaccine did produce short-term
problems. But, referring to a 1991 report by the Institute of Medicine, he
said, "There's no evidence that it produced any chronic brain
damage."
When the pertussis controversy surfaced, vaccine manufacturers threatened
to get out of the business rather than risk lawsuits. In 1988, the government
created the Vaccine Injury Compensation Program as a way to resolve claims from
adverse reactions to childhood vaccines. Those who seek compensation agree
not to sue manufacturers or doctors.
A total of 6,043 claims had been filed through June30, according to the
program's Web site. Of those, 1,663 were granted, for a total of $1.26billion.
Charlotte family affected
It took 15years for Dee Williams of Charlotte to get money
from the compensation program on behalf of her daughter, Teri, who suffered
brain damage after getting a DTP shot when she was 3months old.
"The day she received her shot, I had taken her to my friend's, who
baby-sat her, and, you know, she wasn't acting right," Williams said.
"She kind of stiffened up after I left and her eyes rolled back. From
that day forward, she never, ever acted like she had. She developed like a
blank stare."
At age 3, Teri was diagnosed with severe mental retardation. She began
suffering seizures and acting violently. Doctors ruled out many causes. A
vaccine reaction "was the only thing that couldn't be ruled out,"
Williams said. "It couldn't be proven, but couldn't be ruled out
either."
Today, Teri, 42, has an IQ of 27. She attends an adult day-care center and
lives with her mother.
Fifteenyears ago, when Williams heard about the compensation fund, she applied.
"They said you didn't even need an attorney, which didn't turn out to be
true."
Williams hired Virginia lawyers who specialize in vaccine compensation
cases. This spring, she got a settlement. She declined to make the amount
public.
"We agreed to a settlement only because I'm 61. I'm not in good
health," Williams said. "I knew that if it went to trial, I might
prevail, but I didn't know if I'd live long enough to see it."
Vaccine safety issues
Parents question vaccine safety for a variety of reasons.
But three issues get much of the attention:
Measles and autism: When the Jillanis began looking into vaccine
safety for their children, one of the studies they found most interesting was
by Dr. Andrew Wakefield. The British gastroenterologist studied 12 children
who had developed behavior problems, including autism, shortly after
receiving the measles, mumps, rubella (MMR) vaccine. Published in The Lancet
in 1998, Wakefield's study suggested - but did not prove - a link between the
vaccine and autism.
Duke University's Katz said Wakefield's research has been discredited. He
said Wakefield claimed to have found measles vaccine in the digestive tracts
of some children he studied. But said scientists in the United States and
other countries examined the same material and concluded that Wakefield
misidentified a normal intestinal protein, Katz said.
U.S. public health officials say there is no connection proven between MMR
and autism. An Institute of Medicine report released last spring did not rule
out the possibility that MMR could contribute to autism in rare instances,
but it said it "can find no proven biological mechanisms that would
explain such a relationship."
Fisher and other parents won't be satisfied until researchers specifically
rule out a connection. "Why would one assume that vaccines are not
implicated, rather than biting the bullet and finding out?" she said.
Mercury levels: Since the 1930s, vaccines have contained mercury in
a preservative called thimerosal. In 1999, Congress mandated a review by the
FDA, which found that mercury levels in some vaccines were more than twice
what the Environmental Protection Agency deems safe for very young children.
Public health agencies phased out mercury-containing vaccines earlier this
year, although some may still be in use. Just this month, another in a series
of Institute of Medicine reports on vaccines concluded that children and
pregnant women should avoid thimerosal. The report said there is an unproved
but "biologically plausible" risk that the substance could cause
neurological problems.
Some parents complain that health officials didn't work faster to remove
the mercury-containing vaccines from the market, but Duke's Katz praised the
agencies for taking action even though there was no evidence that vaccines
were harming children.
Oral polio vaccine: In use since 1960, the so-called Sabin vaccine
contains live, weakened virus that can spread from person to person,
immunizing many who were not vaccinated themselves. But in some cases, the ingested
virus mutates into a virulent form capable of causing disease.
Since 1979, the only U.S. cases of polio have been caused by the oral
vaccine, according to the Consumer Reports analysis. But not until 1999 did
public health officials begin the switch to the injectable, inactivated
vaccine that does not cause polio. In that 20-year period, eight or nine
cases of vaccine-related polio were reported each year, Consumer Reports
said.
"I agree that they were slow to make the change," Katz said.
When the country was reporting 50,000 cases of polio a year, "that was a
risk-benefit we could accept. When we weren't having any more natural polio,
that was a price we could no longer pay."
What the laws say
Children must be immunized to start kindergarten or go to
day-care centers unless they have an exemption from the law. The Carolinas
allow exemptions for medical or religious reasons.
The Jillanis, for example, have religious exemptions for both of their
daughters, and Lisa Jillani advised parents at the PAVE meeting that a
religious exemption is easier to get than one for medical reasons. "You
can be an atheist and claim a religious exemption," she said.
Beth Rowe-West, head of immunizations for the N.C. Division of Public
Health, said medical exemptions are given only when doctors confirm that the
child has a condition listed by the CDC. Religious exemptions are not so
strict, but they must be more than a philosophical opposition to vaccines.
Only 16 states permit philosophical exemptions. All but two, Mississippi and
West Virginia, allow religious exemptions.
In North Carolina, 293 medical exemptions and 342 religious exemptions
were granted for the 2000-01 school year. Charlotte-Mecklenburg Schools
reported 14 medical exemptions and 16 religious exemptions last year. Other
school systems in the region each reported only a few.
South Carolina uses a broader definition of medical exemption, including
not only those who object to vaccinations, but those who are not yet updated
on immunizations. Religious exemptions are not monitored. South Carolina
reported a larger number of exemptions - 14,122 medical and 1,141 religious -
last year.
Criticism questioned
Most doctors believe the criticism of vaccines is
overblown.
"Some of this stuff has gotten a lot of hype," said Dr. Amina
Ahmed, a pediatric infectious disease specialist with Carolinas Medical
Center in Charlotte.
"When we had the old pertussis vaccine, we saw a lot of side effects
with that. It's given at 2, 4 and 6months of age. That's when most kids are
diagnosed with some sort of developmental delay, it's in the first year of
life. That's also when vaccines are given. Because they are temporally
related, they have assumed there is a cause-and-effect relationship.
"I was born in an underdeveloped country," said Ahmed, of
Pakistan. "Because of what I've seen, I would advocate strongly against
not immunizing."
But parents such as Fisher don't believe it's fair to risk even one child
in pursuit of mass vaccination. "We've got to chart a middle course,"
she said. "Clearly, some children are not able to handle the vaccines.
What we need to do is to find out who those children are. It's time to stop
denying and start studying."