Philip Alcabes discusses myths of health, disease and risk.

Autism and the MMR Vaccine

There’s quite a furor this week over the British General Medical Council’s censure of Dr. Andrew Wakefield for his research at the Royal Free Hospital, purportedly showing a link between MMR (measles-mumps-rubella) immunization and autism (Lancet 1998; 351(9103): 637–41).

As New Scientist points out, the GMC’s finding removes any impediment to charging Wakefield and two of his colleagues with misconduct.  GMC may rule on that score in a few months, according to the BBC.

By and large, the talk about the verdict hasn’t been about the substance of the contentious vaccine-autism link.  At Autism Science Foundation, Alison Singer (the group’s president) writes that

Anti vaccine autism advocates continue to see Wakefield as a hero who remains willing to take on the establishment and fight for their children.  In the meantime, Wakefield’s actions have had a lasting negative effect on children’s health in that some people are still afraid of immunizations. In some cases, the younger siblings of children with autism are being denied life saving vaccines. This population of baby siblings, already at higher risk for developing autism, is now also being placed at risk for life threatening, vaccine preventable disease, despite mountains of scientific evidence indicating no link between vaccines and autism. This is the Wakefield legacy.

On the other side, Generation Rescue writes in support of Wakefield at Age of Autism.  GR isn’t as cogent as Singer, but brings up the point that tends to complicate this and most discussions of autism:    “Do you think pharmaceutical companies have too much influence in the laws, policies, and regulations of our government?  We do.”

Liz Ditz provides a great service, compiling blog posts pro-Wakefield and, separately, those criticizing Wakefield and/or supporting the GMC’s decision.  (As of today, the Wakefield critics seem to have been more prolific.)

Thursday’s BBC report concludes with a graphic showing a decline in MMR coverage in the UK between 1996-97, when it stood at around 90%, and 2004, when it bottomed at around 80%.  Superimposed is the number of measles cases, which increased from a few dozen in 2005 to over 1200 in 2008.  The implication is that Wakefield’s report was somehow responsible for the drop in coverage in the late ’90s and that that decline led to a sharp uptick in measles incidence.  The graphic also implies that after Lancet retracted the original paper in 2004, public acceptance of MMR vaccine improved after Wakefield had been repudiated — but too late to prevent the measles upsurge.

Without supporting Wakefield’s methods, it’s still worth asking whether his 1998 paper should be held accountable for the decline in vaccine acceptability.  As early as February 1998, England’s Communicable Disease Surveillance Centre was reporting on the drop in MMR coverage from 1996 and ‘97 data and BMJ reported in 2003 that the British trend was consonant with declines in MMR uptake in Europe generally:

[T]he experts say that coverage is substandard across Europe owing to a surprising lack of political will to implement an effective disease prevention programme, given the region’s stated goal to eliminate measles by 2007.

A decline in nationwide vaccine coverage to 80%  is probably less important as an explanation for increasing measles incidence in the U.K. than two other factors:  locally deficient MMR coverage and immigration from countries with lower vaccination rates.  In fact, measles increases in the UK seem to have been attributable to outbreaks in the northern part of the country and to high incidences among very young children in London, according the UK’s Health Protection Agency.

What’s to be learned from the Wakefield mess?

1. The role of pharmaceutical companies (including vaccine makers) in setting scientific agendas and moving policy remains an issue for many people.  Defenders of Big Public Health, like Mark Honigsbaum who writes an interesting piece in The Guardian today, tend to be dismissive of allegations that public health has become a game for technocrats in which corporations have too much sway.  But the defenders misunderstand those critiques.  The critics are not saying that government predictions are wrong where they should be right, nor that officials are on the take; the critique is this:  the relationship between profit makers and public agencies is sometimes awfully cozy and the attentiveness to real suffering is remarkably slight.

2. The pre-eminence of ethics boards, like Britain’s GMC, doesn’t always sit well.  With the Wakefield case, the MMR-autism controversy steps onto the slippery terrain of moral decision making in regard to research.  Many people don’t feel perfectly reassured about the ethics of medical practice when the overseers are themselves physicians, and the moral reasoning often seems restricted to “did the physician follow the rules?”

3. The stance of official agencies on autism doesn’t inspire confidence.  Vaccination is hard to exonerate as a cause of autism as long as the official approach is that autism is a disease, and by implication preventable — rather than a disability, which might or might not have a cause but whose sufferers, in either case, can be afforded decent lives.  To make matters worse, official agencies’ stance doesn’t defuse the controversy.  In the U.S. and U.K., they respond to anti-immunization claims with assertions about the safety of MMR in particular.  But they don’t seem to want to support the research that would test whether some children might be susceptible to damage incurred cumulatively by undergoing the numerous vaccinations that are scheduled for children today.  It’s unlikely that the scrutiny of immunization, or the controversy, is going to go away unless officials soften that stance.

We’ll probably hear more on this if the GMC rules to disbar Wakefield from practicing medicine.

Does Health Mean More Than Avoiding Risk?

If our society is going to be  healthy population it will mean making everyone healthy.  Self-evidently we’ll also have to think about what it means to be healthy.

Often, we do think about this – but usually by considering what the risks are and how to avoid them.  That means, we ask whether we can make life less harmful by changing something, and then we ask what change to make (and what it will cost).

Rarely do we ask: what sort of health do we expect – especially if we also have to accord that level of health to everyone?

There’s something about the risk question that goes against the concept of health for all.  Almost always, the risk we talk about pertains to us:  what can we affluent, educated people in the U.S. do to make sure we don’t get sick (or die) tomorrow? It’s not very often that we ask about risks for people who can’t get the recommended exercise or eat the recommended fruits and vegetables because they have kids and no job.  Not too often that we are concerned about the risks of medicating adolescents (see below) for people who can’t make such assessments because their kids are incarcerated.  When health = avoidance of risk, we mean “health for people like us.”

Not that the risk question is frivolous.  It gets particularly poignant when it comes to children.  For instance, Liz Borkowski posted a valuable note at The Pump Handle last week about the use of antipsychotic drugs for children.  She was commenting on a post by Alison Bass that was concerned with “shilling for Big Pharma,” about the death of a 12-year-old Florida boy who was on several medications.

Whether the world we’ve made is dangerous to our kids is a question that can’t be ignored.  But we also have to remember that it’s only one side of the story, and it’s only part of that one side (the part that pertains to people like us).

Often, we hear a plea for a deeper conversation about health.  It’s what we are hearing when parents of autistic children ask about vaccine safety, or others ask whether the prominence of the autism epidemic is going to translate into better treatment for autistic adults (as Karl Taro Greenfeld did in “Growing Old With Autism” in the NY Times, 23 May).

It’s what we are hearing when parents of troubled children allege that pediatric bipolar disorder is underdiagnosed or when others argue that it’s overdiagnosed.

These voices aren’t talking about risk; they’re speaking in a different register.  They’re talking about suffering, and the alleviation of suffering, and asking what sort of responsibility the society (or the state) is going to take.

Too often, we can only hear the risk part, not the alleviation-of-suffering part.  We react to the allegations that vaccines cause autism, for instance.  Some people are attracted by the lure of an easy-to-blame culprit (vaccines or other products of Big Pharma, immunization guidelines or other policies of Big Medicine) and join the bandwagon; others are repelled by the anti-immunizationists’ failure to venerate Big Science, and ridicule the parents who don’t want their kids vaccinated.  But not too many people interpret what they’re hearing as a cry for more caring, rather than a demand to identify risks.

In the health professions, we’re especially given to hearing such claims in terms of risk, rather than health-vs.-suffering.  For instance, we take notice when (as Sarah Rubinstein points out at WSJ Health Blog), the pharmaceutical industry talks about having a role in the conversation over the costs of health care  as the WSJ reported on 26 May.

But the reason we’re interested is often because we want to debate how to structure the healthcare industry rather than because we really want to discuss how much caring there should be in healthcare.

This isn’t a matter of idealism or some kind of touchy-feely hippie alternative to industrialized medicine.  It’s a real, and realistic question.  No rational person wants to give up effective medication for people who are suffering, or wants our society to stop doing research that would tell us if certain drugs might be harmful.  But to think only about the risks and not about the suffering part is to blind ourselves to the more difficult – and more essentially human – questions about health.

Blog Round-Up: Epidemics

When Powell’s Books asked us to write for their blog, we decided to ask why people believe we’re in an Age of Epidemics.  That was written back in March, though it was only posted today.  How much more we’d have had to say about that belief were we to write now!  Especially given the multifaceted outbreak of swine flu, which even today continues to wend its way — occasionally violently, mostly indolently, but always with maximum attention — through schools (as DemFromCT points out in DailyKos today) and neighborhoods.

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At Smallpox2009, Robert posts a note following Abigail Zuger’s review of Dread, which appeared in the NY Times on 26 May.  The post picks up Zuger’s wording as to whether fear of epidemics is “hard-wired” — not the most felicitous term but an apt question to ponder.  More happily, it also picks up her evident fascination with the question of why our society is so intrigued by epidemics.

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At change.org, Kristina Chew wonders about the question of whether autism is an epidemic.  She picks up the idea from Dread that once we call something an epidemic we give it “a story line, with a beginning and an end.”

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Crawford Killian reviews Dread at The Tyee, homing in on the links between the epidemic narrative and social anxieties — and economic disparities.  “Much of what we consider hygiene is little more than an attempt by the anxious middle class to control the dirty, lawless, sexually profligate poor,” he reminds us.