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Decision Support for Parents

A coalition of medical and advocacy groups aims to address the concerns of parents and restore the public’s confidence in vaccines by providing accurate information.

By Christopher J. Gearon

For many baby boomers, the risk of being permanently disabled, living with an iron lung, even dying from the contagious poliovirus was as real in the 1950s as were air raid drills and community bomb shelters.

Everyday threats of severe illness, disability, and death from measles, pneumococcus, and other contagious diseases were top-of-mind for their parents. Thanks to vaccines, children—and their concerned parents—no longer have to worry about such threats. That’s why a recent pushback by a small but growing number of parents—questioning the value of vaccines, delaying, even refusing to have their kids vaccinated—has pediatricians and public health officials concerned.

The issue hit a tipping point last year, when American Academy of Pediatrics (AAP) officials learned that an upcoming storyline in a primetime ABC television show would perpetuate misinformation about unsubstantiated vaccine-related adverse events. A high-profile television show falsely proclaiming such a link could be “devastating to the health of our nation’s children,” says AAP Past President Renee R. Jenkins, M.D.

The AAP—along with the Association of State and Territorial Health Officials (ASTHO) and several other groups—called on ABC to cancel the episode. “Many people trust the health information presented on fictional television shows, which influences their decisions about health care,” Jenkins, then president of the 60,000-member AAP, reminded Disney-ABC Television Group President Anne Sweeney in a strongly worded Jan. 25, 2008 letter. “In the United Kingdom, erroneous reports … prompted a decline in vaccination and the worst outbreak of measles in two decades, including the deaths of several children.” Last June, the United Kingdom’s Health Protection Agency declared that measles was again an epidemic.

In the end, the show went on. ABC ran a subtle disclaimer at the end of the program. AAP’s demand, however, galvanized pediatricians. “It may have been the biggest thing the Academy leadership did since I’ve been involved,” says current President David T. Tayloe Jr., M.D. At its annual leadership meeting two months later, AAP made addressing growing disinformation about vaccines its top priority.

The show “served as a wake-up call for all of us,” says Paul E. Jarris, M.D., ASTHO’s executive director.

AAP last spring formed the Immunization Alliance, a campaign to ensure America’s children receive recommended immunizations on time and provide parents and caregivers with the knowledge and information they need to make fully informed decisions about vaccinations. Two dozen medical, public health, and parent organizations have signed onto the Alliance, including AHIP. The Alliance wants to improve upon the nation’s impressive track record of achieving high rates of immunization, preventing many diseases from harming and killing people in the United States; provide—and encourage others to provide—accurate information about the importance and safety of vaccines; and address the concerns of worried parents.

Pediatricians, public health officials, and health plans have picked up on a disturbing trend in the last 18 to 24 months: Parents are increasingly rejecting scientific evidence about the value of vaccines, leading them to resist or refuse to immunize their children. Meanwhile, the Association of State and Territorial Health Officials (ASTHO) reports some recent outbreaks of mumps, chickenpox, and measles. The pushback is being fanned by misinformation, including that from Hollywood, and by the quite understandable concerns of young parents who have never seen the diseases against which vaccinations protect. “We can’t allow children to suffer because of opinions not based on sound science,” says Tayloe.

The Value of Vaccines
Since Edward Jenner paved the way for development of vaccines by observing in the 1790s that milkmaids who had contact with cowpox did not get smallpox, most organized industrial countries have become much safer. Vaccines have saved millions of lives, untold suffering, and significant health care costs. Smallpox has been eradicated worldwide, while endemic transmission of poliovirus and measles and rubella viruses has been eliminated in the United States. Deaths due to diphtheria, mumps, pertussis, and tetanus have fallen by 99 percent as of 2004, while most other vaccine-preventable deaths targeted since 1980 have fallen by 80 percent or more.

“Vaccines are the single most powerful, cost-effective public health intervention ever developed,” offers Jenkins. Several cost-benefit analyses reveal that vaccination against common childhood diseases reaps large benefits, saving more than $18 in medical and indirect costs for each $1 spent on immunization. Thanks to childhood and adolescent vaccination, each U.S. birth cohort dodges 14 million cases of vaccine-preventable diseases (VPD) and 33,000 preventable deaths, saving society an estimated $43 billion.

“These achievements are largely due to reaching and maintaining high vaccine coverage levels from infancy throughout childhood by successful implementation of the infant and childhood immunization program,” concluded a study led by the Centers for Disease Control and Prevention (CDC) that appeared in the Journal of the American Medical Association, Nov. 14, 2007.

“Immunization rates have never been higher,” says Lance Rodewald, M.D., director of the division of immunization services at the CDC’s National Center of Immunization and Respiratory Diseases. Vaccination rates are currently at or approaching 90 percent for many recommended childhood and adolescent vaccines. The nation is closing in on the federal government’s goal of reaching at least 90 percent immunization rates for all childhood and adolescent vaccines, 90 percent for most adult vaccines, and 60 percent for adult influenza and pneumococcal vaccines.

Such rates are vital to reach and maintain so individuals too young or too ill to vaccinate, and those claiming exemptions for religious reasons, can be protected from VPDs by “herd immunity,” the fact that diseases are less able to spread when a high percentage of people are vaccinated, providing protection for the few unimmunized people.

“When a small number of people cannot get vaccinated [for medical reasons or refuse for religious reasons], we need everyone else to be vaccinated in order to form a wall of protection around them,” explains Tamara Lewis, M.D., director of community health and prevention for Intermountain Healthcare in Salt Lake City. There are early signs, however, that the wall may be in need of repair.

While such immunity varies by disease, typically an estimated 85 percent to 95 percent of the population must be immunized to achieve the protection of herd immunity. Public health officials have observed that measles and pertussis are the first VPDs to reappear when a population is underimmunized, placing both the immunized and unimmunized at increased risk for these diseases. Younger children are most vulnerable, with 90 percent of pertussis-related deaths, for example, in infants younger than 6 months.

Studies show that more parents are demanding philosophical exemptions, such as for religious reasons or as a result of their belief systems, even in areas with recent measles outbreaks. In a letter last June to HHS Secretary Michael Levitt, Jenkins wrote, “immunization rates for two-year-old children should be at or above 90 percent to prevent epidemics of diseases. Currently, that level is 77 percent [for a combination series that includes six vaccines], but some states are experiencing vaccine refusal rates of about 15 percent, dropping overall immunity below 65 percent. If we do not stem this tide, children will suffer the consequences of vaccine-preventable diseases.”

The Disconcerting Pushback on Vaccines
As of last fall, 2008 was shaping up to be the worst year in the last dozen for measles in the United States. Through July 31, 131 measles cases were reported, nearly all occurring among school-age children whose parents decided against vaccinating their children. Some of the recent outbreaks were clustered in certain communities, such as Grant County, Washington, where several children who became sick were home-schooled, a group that CDC says accounts for a large percentage of unvaccinated children. Most of the other infected children had exemptions for religious or philosophical reasons. States increasingly have permitted opt-outs based on philosophical reasons, even though research shows vaccine exemptors are 35 times more likely than others to contract measles.

Before a measles vaccine became available in the mid-1960s, the disease caused 450 deaths, 4,000 cases of encephalitis, and nearly 50,000 hospitalizations annually in the United States. As recently as 1999, measles killed nearly 900,000 people worldwide. If vaccinations were stopped, it’s estimated that 2.7 million people would die each year globally from measles. Immunizations against measles have cut measles deaths by more than 99 percent in the United States.

Nearly all of the measles cases reported in the United States during the first half of 2008 were a result of infected persons entering the country, particularly from European nations, according to the CDC. For example, 11 cases were reported early last year in San Diego after an unvaccinated child traveled to Switzerland, contracted measles there, and spread it to unvaccinated children upon returning to San Diego. “Measles is one of the first diseases to reappear when vaccination coverage rates fall,” according to the CDC. “Each of these diseases that we vaccinate against are still out there,” Rodewald says. “They are a plane ride away.”

Undeniably, pediatricians and family practitioners are getting pushback from parents on immunizations. “They are hearing questions increasingly raised in their offices about this so-called vaccine controversy, but it’s not a medical or scientific controversy,” notes Meg Fisher, M.D., medical director, The Children’s Hospital at Monmouth Medical Center and chair of AAP’s section on infectious diseases.

Fisher and other experts say much of the pushback is unwarranted, stemming from misinformed public figures, who have money and a spotlight to make charges not backed by facts. “Parents are very afraid,” says Carmella Sebastian, M.D., Central and North Florida market medical officer for Louisville, Kentucky-based Humana. “There has been a lot of negative publicity in the last 18 months, specifically around childhood vaccines and a potential link to autism.” Though there are other widely held misconceptions as a result of misinformation about vaccine safety, suspicion of a link between the vaccine preservative thimerosal and autism is perhaps the most widely known example.

“There’s a lot of communication effort that needs to go on,” says Rodewald. For example, even after nearly two dozen research studies have shown no link between the brain development disorder autism and the vaccine preservative thimerosal, the misinformation continues. Charges continue even after thimerosal was removed several years ago from most routine childhood vaccines, yet reported autism rates continue to rise, notes Rodewald. The cause, or causes, of autism are not known, but “no association has been found at all between autism and vaccines,” says Rodewald, “indicating that vaccines do not cause autism.”

Pediatricians also understand that without pressing threats of disease, people grow complacent. “You’re dealing with young parents who have never seen measles, whooping cough,” or other diseases we vaccinate against, Tayloe notes. To some younger parents, “it begins to look like the vaccine may be a bigger risk than benefit.”

Like any medication to treat or prevent illness, vaccines are not 100 percent without risks. But risks are minimal, largely minor side effects—a sore arm or low-grade fever, for example— and go away within a few days. There have been cases where vaccines have been pulled off the market due to greater risks, such as the first rotavirus vaccine. The FDA took RotaShield® off the market in 1999, after it was associated with intussusception, a blockage of the intestine. Recognition of problems occurred quickly, thanks in part to the federal government’s post-market surveillance of vaccines, which has been in place since 1990 and is the most advanced of these systems, far more advanced than post-market surveillance of other drugs.

Getting vaccine information to parents and clinicians is crucial. “The benefits [of vaccines] far outweigh the risks,” Astho ’s Jarris emphasizes. More than 2.1 million U.S. preschool children, or about 20 percent of these kids, are underimmunized. Preschoolers particularly are vulnerable to measles, whooping cough, and a host of other VPDs.

Even amid the measles outbreak last year, Fisher found herself lobbying the public and members of the New Jersey legislature against a measure there to give parents “vaccination choice,” easing traditional immunization mandates. “If you opt out of immunizations, we lose herd immunity and lose protection,” she says. “It really is a public health issue.”

The Alliance: Fighting Vaccine Myths and Complacency
“What we have to recognize is these are parents who are trying to make the best decision for their kids,” Jarris says. “They and we both want the same thing, healthy children.”

Alliance members realize that getting the facts out to counter myths and misperceptions is essential. Recent and consistent questions on vaccines have left parents confused. Rates of philosophical exemptions are climbing, rising in states that allow such exemptions from 1 percent in 1991 to 2.54 percent by 2004, the most recent year for which data are available, according to an analysis by the Johns Hopkins Bloomberg School of Public Health.

Much of the work of the Alliance is about raising public awareness. “The Academy understands that parents get a lot of information over the Internet…we need to get good materials on the Internet that young parents will likely access,” says Tayloe. “We are getting there. We can get there faster with the Immunization Alliance than we can alone, as one doctors’ organization.”

Though the Alliance did not officially launch until September, several of its members have made notable progress in 2008. For example, actress Amanda Peet became a volunteer spokesperson for the Every Child By Two “Vaccinate Your Baby” campaign (www.vaccinateyourbaby.org).

“We were well into the planning stages of this campaign when the Alliance was first formed,” says Amy Pisani, Every Child By Two’s executive director. “However, it was through the Alliance that the visibility of the campaign was raised among partner organizations and the media. For instance, AAP agreed to have its logo placed on the campaign’s public service announcements, which raised the credibility level astronomically. Dr. Jenkins also attended our kick-off press event, interviewed for Good Morning America, along with Peet, and highlighted our campaign during the AAP annual meeting. This is critical, as we need pediatricians to refer parents with questions to the Web site, the heart of our information campaign.”

Meanwhile, pressure from AAP and other Alliance members saw the federal government recently invest $400,000 to improve written materials about vaccine safety. “I think the government was missing in action on this until very, very recently,” Tayloe says. Meanwhile, renowned vaccine researcher, author, and pediatrician Paul Offit, M.D. recently appeared on the Today program to set the record straight on vaccinations to millions of morning viewers.

Every day, Alliance members are taking steps to counter misinformation and complacency. This includes conducting market research and focus groups to better target messages to people who are unsure, confused, or just plain questioning the value of vaccines, and providing doctors and public health officials with support and consumer-friendly information they can give to patients.

Health insurance plans’ efforts are crucial in helping to maintain high immunization rates and trust in the system. “Public health officials realize they can’t get it done without working with the health plans and doctors,” says Jarris. This includes health plans’ continued efforts to provide coverage for vaccinations, support immunization registries, and improve Heathcare Effectiveness Data and Information Set (HEDIS) scores around immunizations, for example (see the sidebar on page 34).

Other efforts range from getting vaccine facts out to lawmakers in New Jersey and other states so that vaccine exemptions do not become even more common, to Indiana’s full-court press to combat misinformation. Indiana State Health Commissioner Judy Monroe, M.D., last year personally e-mailed a fact sheet to each of the state’s licensed clinicians refuting any link between immunizations and autism. Monroe cited a CNN public opinion poll showing a majority of individuals believed there was a connection. Her office also produced a public service announcement on the importance of vaccines, which aired before the start of the current school year. “We’ve been on a mission to boost our immunization rates,” says Monroe. “That’s become high priority for us.”

Christopher J. Gearon is a health and financial freelance writer based in Silver Spring, Maryland.


Sidebar
Health Plans Focus on Communication and Education

When Humana wanted to boost childhood immunization rates nationally, company officials focused on two primary strategies: better educate physicians and members about risk factors and prevention of childhood infectious diseases, and provide resources to doctors and members to better manage such diseases.

“We have so many vehicles to communicate through,” says Carmella Sebastian, M.D., Humana’s market medical officer for Central and North Florida and the leader of the national infectious diseases team within company’s Clinical Guidance Organization. Getting the word out on immunizations takes several forms, from highlighting vaccine importance in new member welcomes to targeted postcards and e-mails to parents of young kids, member and provider newsletters, even content in Humana’s Smart- Summary quarterly benefit statements to members.

Significant improvement on HEDIS child immunization measurements in Humana’s Texas, Ohio and Wisconsin plans occurred in part because of strong strategic collaboration with regional health plans. Quality nurses also actively helped M.D. offices prepare for Healthcare Effectiveness Data and Information Set (HEDIS) audits and follow up on childhood immunization statuses. Each of the three plans participate in immunization registries, and either coordinated regularly with state health officials, local quality improvement coalitions, or medical societies. Meanwhile, Louisville, Kentucky-based Humana also increased its vaccine administration reimbursement rate to doctors when giving combination vaccines.

The efforts in Texas, Ohio, and Wisconsin have paid off enormously with HEDIS measurements of childhood immunization rates reaching nearly 90 percent by 2007.

Focusing on immunization communication and outreach drove Humana’s success. The new multistakeholder Immunization Alliance hopes to replicate Humana’s impact on a much larger level—raising vaccination levels throughout the nation through an outreach campaign to remind the public and nation’s providers of the important role vaccines play in safeguarding Americans from disease.

“There is a cause for concern; we can’t take things for granted,” notes William Fried, M.D., Aetna’s medical director in the mid-Atlantic region. “We need to get the word out about vaccine safety and the value of vaccines.” Hartford, Connecticut-based Aetna, too, has been reaching out to members and supporting providers to boost immunization rates.

Health insurance plans play a vital role when it comes to improving immunization rates and helping get the word out about vaccine safety. Health plans help provide access and financing support for immunizations, and have developed successful strategies and distribution channels to provide health information to targeted populations. Health plans also are adept at reaching and messaging to members. The industry also plays a crucial role through post-marketing surveillance of vaccines, with eight AHIP member plans working in conjunction with CDC to minitor adverse events and establish clinical guidelines to effectively treat such events. (See the Sep/Oct 2007 AHIP Coverage article, “Collaborative Improves Monitoring of Vaccine Safety,” available online at www.ahip.org/AHIPCoverage.)

“If we work together on a common message, we can be more successful,” suggests Fried.

— C.G.