- BIOETHICS FORUM ESSAY
Sympathy for the Believer, Not the Belief: Vaccines and the Unfounded Fear of Autism
Until last week, parents claiming that vaccines caused their child’s autism could file for monetary compensation from the National Vaccine Injury Compensation Program. The program, established in 1986, resolves vaccine injury claims by awarding compensation when a causal connection between a vaccine and a resulting illness can be sufficiently demonstrated. In the last decade or so, over 5,500 cases have been filed relating to autism purportedly caused by vaccines. On February 12, however, a federal court deemed that certain autism cases will no longer be considered before the court. For now, the court’s decision encompasses only cases alleging that autism has been caused by a combination of the measles-mumps-rubella (MMR) vaccine and thimerosal, a mercury-based preservative used in vaccines. A second theory, that thimerosal alone causes autism, is currently undergoing evidentiary hearings. If the court debunks this theory, thousands more claimants will be ineligible for compensation. A decision about this theory is expected later this year.
Paul Offit and other vaccine and public health specialists are rightly buoyed by the court’s decision, prompting Offit to call it “a great day for science and American children.” In the past couple of years particularly, health care providers have had to contend with dramatic increases in diseases like measles and whooping cough – diseases that until recently lay near-dormant thanks to high vaccination rates. But as theories about vaccines and autism have gained visibility, more and more parents have opted out of having their children vaccinated. Some claim religious objections in order to meet their state’s standards for vaccination refusal; others don’t have to, since as many as 20 states now allow refusal based on “philosophical” or “personal” beliefs. In certain communities, opt-out rates have ranged from 2.5% to a stunning 15%, compared to the average refusal rate of around 1%. When the opt-out is that high, herd immunity from diseases like measles crumbles, which is understandably infuriating to many people. Complications from measles can lead to pneumonia, encephalitis, and even death, with immunocompromised patients at a greater risk for such complications. Because immunocompromised patients are often legitimately unable to withstand vaccinations, they are particularly dependent on healthy children being inoculated in order to remain uninfected themselves.
In the face of these risks, and in seeming disavowal of multiple Institute of Medicine reports showing no link between vaccines, thimerosal, and autism, those who continue to propagate a vaccine-autism link are frustratingly recalcitrant. That their insistence on false claims has influenced both immunization rates and state vaccination policies is further galling. Unwilling to hide his disdain for “autism’s false prophets” (the title of his new book), Offit is fighting back with the same contentious fervor as his opponents. A recent New York Times article has him saying that vaccine opponents are “hurting kids” and that reliance on alternative therapies is “unconscionable.”
I don’t take issue either with Offit’s statements or with his no-nonsense tactics. But in the same breath in which we firmly repudiate false information about vaccines, it is imperative to voice sympathy and advocate structural support for families raising an autistic child or children.
Consider that, in reaction to last week’s court ruling, one mother of an autistic child declared that “[this ruling] is just another system that is turning its back on children with autism.” I can’t help but wonder whether, if our educational and health care systems could be counted on to provide needed services to autistic children, such parents wouldn’t feel the need to continue to blame vaccines. For many families, procuring services like occupational and behavioral therapies entails jumping through all sorts of bureaucratic hoops. Since early diagnosis and intervention are essential for improving the functioning of autistic children, fighting red tape isn’t just a nuisance, it can be a harm.
It’s possible, even likely, that the sympathetic voices of Offit and others have been omitted in news stories in favor of stinging sound bytes. Whatever the cause, the fight between the “pro” and “anti-vaccinationists” has devolved into something nasty; meanwhile, autism’s etiologies remain unknown. In any polarizing argument, there comes a time when, in order to move forward, one side has to reach out. For vaccine proponents to extend the proverbial olive branch doesn’t – and shouldn’t – entail accepting the claim that vaccines cause autism. The importance of standing by the safety of vaccines and making clear the dangers of not vaccinating children cannot be understated. But it is equally important to acknowledge the very real struggles of raising an autistic child, and the pressing need for better systems of support. Somehow, these sympathetic sentiments have been edged out of the picture, leaving only impatience and hostility. We need to move past these knee-jerk, often easier-to-feel emotions, enabling ourselves instead to feel sympathy, and allowing this sympathy to undergird conversations with misinformed parents.
Nancy Berlinger and Alison Jost, “Nonmedical Exemptions to Mandatory Vaccination: Personal Belief, Public Policy, and the Ethics of Refusal,” in The HPV Controversies: Cancer, Sexual Risk, and Prevention at the Crossroads, ed. Keith Wailoo et al. (forthcoming).
Published on: February 19, 2009
Published in: Public Health