from: The New York Times April 27, 1999
Doctors Fighting Back on Vaccine Front
By MICHAEL POLLAK
An overload of conflicting and often alarmist information about
vaccinations is leading some medical experts into a new field of research:
not the effectiveness and safety of vaccines, which they consider proven,
but the public's questions, doubts and fears. "Just because we're
doctors doesn't mean we don't also look at the Internet," said Dr. Bruce G.
Gellin of Vanderbilt University, staff director of the Vaccine Initiative,
a special project of the Infectious Diseases Society of America. Some Web
sites about immunization, he said, "focus to a large degree on concerns
about safety that are far more hypothesis than fact."
Lyla Belkin of Manhattan got her first hepatitis B shot last August, when
she was 6 days old. A month later, she got a second shot. Early the next
morning, Lorna Belkin found her infant daughter pale and cold. "She died
early in the morning," said Lyla's father, Michael Belkin, "16 hours after
the vaccination."
The New York City Medical Examiner's office said she died of sudden infant
death syndrome. But her parents believe the vaccine killed her. Belkin,
an investment adviser, is a newcomer to a growing band of parents and some
doctors urging the authorities to eliminate requirements for childhood
hepatits B vaccination.
Belkin fields phone calls and E-mail messages from this informal network
and also heads the Committee on Hepatitis B of the National Vaccine
Information Center, which is based in Vienna, Va. "This is a civil rights
issue," Belkin said.
A 1986 law protects drug companies from liability for vaccine reactions.
Parents whose children suffer adverse reactions or deaths related to
vaccinations can apply for compensation from a $1.3 billion Federal fund
set up under the legislation. The fund disbursed $55.2 million in
petitioners' awards and lawyers' fees in fiscal 1999; total awards have
come to $1 billion since 1990. Awards for death cases are capped at
$250,000.
"I don't want to tell people not to get this vaccine," Belkin said. "But it
should be a choice not a mandate." Information about the compensation
fund can be obtained from the clerk of the United States Court of Federal
Claims at (202) 219-9657.
ERIN ARVEDLUND
About a year ago, the society created the initiative, which is using focus
groups, surveys and other marketing tools to explain immunization to the
public. But Dr. Gellin and other experts are not the only ones who feel
defensive. "Oh, them," said Barbara Loe Fisher of Washington, referring
to the experts, adding, "They have been attacking parents who have been
talking about vaccine safety concerns." Ms. Fisher is president of the
National Vaccine Information Center, which she and another woman founded
after their children had what they called severe reactions to
diphtheria-pertussis-tetanus shots. She said the children, both boys, also
were found to have learning disabilities and attention disorders.
"I am not anti-vaccine," Ms. Fisher said. "We believe a humane vaccination
and health policy should be in place. We are against forced vaccination."
The group pushed for Federal legislation in 1986 that created a no-fault
compensation system for vaccine-related injuries, and for changes in the
pertussis vaccine. The organization also promotes informed consent:
parental awareness about vaccination risks and the right to refuse shots,
which puts them at odds with most public school regulations. Ms. Fisher
said she believed her son was injured by the vaccine and expressed
resentment that anyone might consider such an outcome tolerable.
"Parents are saying, "Hey wait a minute, my child is important, too!' " she
said.
Groups that question or oppose vaccination include many people besides
concerned parents -- some are advocates of alternative medicine, some are
political conservatives and some are libertarians, to name a few. They have
become more visible for several reasons: the Clinton Administration has
increased aid for vaccine research and distribution, including immunization
registries; new vaccines have been recommended for preschool children,
including vaccines against hepatitis B since 1991 and rotaviral diarrhea
since December; and the Internet has grown, allowing groups to create Web
sites and to communicate their concerns.
Critics of the vaccine critics agree that groups like Ms. Fisher's have
helped raise useful questions. The problem, some officials say, is that by
discounting safety data and accepting sometimes unverified accounts as
fact, they may drown out the real answers. To public health experts,
vaccination is one of the century's triumphs. Smallpox has been eradicated,
and last year the Federal Centers for Disease Control and Prevention
reported only 1 case each of diphtheria and polio, 34 of tetanus and 89 of
measles.
But as illness from vaccine-preventable disease has plummeted, illness from
the vaccines themselves, however rare, looms larger in the minds of some.
Groups like Ms. Fisher's do not attribute a specific total of injuries and
deaths to vaccine -- some assert that vaccine-related cases are frequently
misdiagnosed, and so there are no reliable data -- but they allege that the
risk is much higher than mainstream physicians and the Government say.
For example, Ms. Fisher's group says on the Internet that it is calling for
Government financing of independent researchers "to investigate the
reported links between vaccines and neurological and autoimmune disorders."
The site lists problems that group members say may be associated with
vaccination -- including learning disabilities, attention deficit disorder,
autism, asthma, diabetes and ear infections. Many medical authorities
warn against paying too much attention to these reports. The C.D.C. says
vaccines cause so few ill effects that the risks cannot be reliably
measured. The agency says that the risk of encephalitis or severe allergic
reaction from mumps-measles-rubella vaccine is 1 in 1 million. It says the
risk to unvaccinated children is 1 death in 3,000 measles cases, 1
encephalitis case in 300 cases of mumps, and 1 case of congenital rubella
syndrome for every 4 mothers infected early in pregnancy.
"We are in danger of becoming a victim of our own success," Dr. Louis W.
Sullivan, the former Secretary of Health and Human Services, told the
annual National Immunization Conference in July.
"Many of our citizens cannot remember seeing a child with measles or
polio," he continued, "but they are constantly reading and hearing about
the adverse reactions linked to the vaccines that have nearly vanquished
these threats in the United States." In a report in January favoring
community and state immunization registries, the National Vaccine Advisory
Committee said that fear of misuse was strong, privacy should be enforced
and use of a registry by tax, immigration or other agencies must be
prohibited. It opposed a national registry and said that parents should be
allowed to keep their children from participating. A central data base
"is in no way what we're talking about," said Dr. Robert W. Linkins, chief
of the systems development branch of the C.D.C.'s National Immunization
Program.
In Idaho, a state immunization registry for preschool children was approved
last month after the Idaho Christian Coalition initially opposed it but
later endorsed it after changes in the language. In Texas, Parents
Requesting Open Vaccine Education, a group that uses the acronym Prove,
insisted that the state's immunization registry include only children whose
parents approved of their being included in the registry in writing. The
group also asked that the data not be shared with other states.
In California, Brad Dacus, the director of the Pacific Justice Institute, a
network of politically conservative lawyers, questioned the need for a
childhood vaccination for hepatitis B, which is often spread by sexual
contact or intravenous drug use.
The C.D.C., however, notes that about 25 percent of all people infected
with hepatitis B have no known risk factor. Hepatitis B, which infects
200,000 Americans a year, is acquired by exposure to blood or body fluids
from an infected person. It is about 100 times easier to transmit than is
H.I.V., the agency says.
Universal vaccination, the agency says, is not only easier to achieve with
young children, but protects low-risk children from accidental infection by
others. Besides, the C.D.C. adds, no one can predict which children will
grow up to become high-risk adults. Experts add that some critics ignore
what would happen if their advice was taken and vaccination programs were
curbed -- if laws requiring vaccinations for measles and other diseases for
entry to school were eliminated.
"We can credit largely the school laws with the near-elimination of measles
from this country in the last few years," said Dr. Neal A. Halsey, a
professor at the Johns Hopkins School of Public Health and the director of
its Institute for Vaccine Safety.
A January 1998 article in The Lancet detailed the sharp rise in pertussis
rates in the 1970's and 1980's in countries where popular accounts of
adverse reactions led to sharp drops in vaccination.
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Copyright 1999 The New York Times Company