Philip Alcabes discusses myths of health, disease and risk.

Science, Race, and Silence

The coverage of the Feb. 12th shootings at the University of Alabama in Huntsville has been preoccupied, by and large, with the accused killer.   There are details about her background, the 1986 shooting of her brother, her training at Harvard, the 1993 investigation of a bomb mailed to a Harvard professor, her research, her publications, her tenure case at UAH, her husband.

And there has been new talk about the usual issues:  The  perpetual vexation about tenure.  The problem of safety on campuses.   The question, now customary, of whether a shooter’s  writing offers any clues to her or his psyche.

But there hasn’t been much discussion about the victims.  Two of the three who were killed, Maria Ragland Davis and Adriel D. Johnson, Sr., were African American professors.  All three of the deceased — the other, Prof. Gopi Podila, was department chair — were known for their support of students, according to obituaries published by the Chronicle of Higher Education.   This in itself is both laudable and rare enough, in a field increasingly driven by the quest for research grants, to deserve mention.  But the sudden death of two science professors who were themselves black Americans and who devoted themselves to educating black students in the sciences is a particularly profound loss to higher education.

That Dr. Ragland Davis was a black woman, one of the rarest of beings in the scientific professoriate, makes the loss particularly poignant.

Statistics are no solace, of course.  But the silence about the loss of two black American professors who died by gunfire is part of the greater, even more stunning, silence about the great many black Americans who die by gunfire every year.

In 2006, the last year for which complete data have been posted by the National Center for Health Statistics (see table 18), 30,896 Americans died by gunshot.  Almost half, 12,791, were murders.  That’s 35 firearm murders per day, on average.   About one every 40 minutes.

Black Americans are over twice as likely to die by gunshot than are white Americans (see table 19 at the link above).  The gunshot death rates are roughly 22 deaths per 100,000 per year and roughly 9 per 100,000 per year, respectively.  Those risks have been remarkably constant, even as deaths from Americans’ main form of deadly mishap, vehicle crashes, have declined.

This is not a plea for gun control.  Better gun control laws would allow a lot of people to live longer, and improve the public’s health — but we hear such pleas every time  a multiple shooting makes the news.  That’s not the point here.

The point is the problem of giving chances to people who haven’t had them.  Or, to put it more bluntly, the point is race.

In particular, the impossibility, still, of talking about how science should be done by people who have not historically been included in shaping it and defining it.  By people other than the ones who, at least until recently, made all the decisions about what’s worth studying and what’s worth changing.  By women, by black Americans, by people who grew up poor, by people who did not attend elite universities on the east coast or in California.

Universities — the elite ones and the many non-elite ones — are indispensable in the endeavor to change science, for all sorts of reasons.  Maybe the best reason is the presence of professors who support and encourage students who aren’t drawn from the usual class of people.

The deaths at UAH should be an occasion for great mourning, not only for professors who died doing their work, but for the project of changing science.  If the silence over the Huntsville victims were the silence of grief, it wouldn’t seem so bad.  But I think it’s the silence of not really caring, or of not wanting to face a shameful truth.  Compared to talking about the links among race, science, and education… well, it’s less taxing to wonder about the shooter’s unpublished novel.

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.

Desperation Play on Flu Vaccine

DHHS Secretary Sibelius spoke at Hunter College in New York on Thursday, part of her barnstorming tour to exhort Americans to get immunized against swine flu — and thereby avoid embarrassment to herself and her agency on account of  the extremely poor uptake of swine flu vaccine in the U.S.   As Mike Stobbe of AP reported on Friday, the latest estimates by CDC put the proportion of Americans vaccinated at 20 percent.

Federal agencies are already scrambling to spin the disaster as a victory.  “From our point of view, this looks very successful,” CDC spokesman Richard Quartarone tells Stobbe.  Despite the fact (also noted in the AP story) that vaccine uptake was barely better among the flu-vulnerable groups who were the focus of the immunization effort:  22 percent of personnel at health care facilities, 38 percent of pregnant women.  Some success.

Apparently, New York State Health Commissioner Daines doesn’t want to be left off the victory train.  He announced on Friday that the law requiring immunization of staff of health care facilities would be enforced — even though a restraining order was issued by state Supreme Court Justice Thomas McNamara in October prohibiting enforcement.

(A federal district court judge in San Diego ruled this week in favor of the Rady Children’s Hospital’s union of nurses and technicians, according to San Diego CityBeat.  The union had requested arbitration of the hospital’s mandatory flu-immunization policy which, they claim, violates their collective-bargaining agreement.)

Health officials’ pandemic-flu-disaster story was flimsy from the get-go.  The evidence for a serious flu outbreak was slim, despite the attempts by officials and some reporters to make the situation look dire.  But through autumn 2009, at least there were some hospitalizations and deaths that served to maintain the sense of impending catastrophe that the disaster story sought to achieve.  Now, though, with flu activity in the U.S. less than usual for this time of year and no widespread occurrence of H1N1 flu reported, officials are playing with the numbers in their desperate attempt to peddle vaccine.

In her talk at Hunter College, for instance, Secretary Sibelius noted that “over a thousand” infants and children had died from H1N1 flu.  The CDC’s latest flu update counts 300 pediatric flu deaths from April 2009 through the beginning of the new year.  And it notes that about a third of the 236 pediatric flu deaths in the current season had bacteria cultured from sterile sites — suggesting the question of whether more timely medical care, rather than immunization, might have saved many of those kids.  Where the remaining 700 of Secretary Sibelius’s thousand pediatric flu deaths are to be found remains a mystery.

What’s happening here?  The federal government ordered 250 million doses of swine-flu vaccine last year.   Vaccine makers were looking at terrific earnings from this outbreak.  But they are now worried about losses in the anticipated $7.6 billion worth of global sales — because so much vaccine has gone unused.  Western European countries are stopping their orders and seeking to off-load existing stocks.  Americans don’t want the vaccine, at least not when swine flu seems to be less damaging than regular, seasonal flu and they aren’t feeling reassured about the safety of the rapidly produced vaccine.

Federal and state officials won’t let go, though.  It’s dispiriting.

The disaster in Haiti put the spotlight on suffering this past week.   Not just the tremendous death and damage from the event itself, but the penury and misery in which many Haitians lived even before they had to live with, or die in, the earthquake.  And the earthquake should have reminded anyone who was watching — which is to say, nearly everyone — to be appalled at the amount and degree of suffering in the world, even on days when there are no natural disasters making the news.

The disquieting thing, especially this week, is that people who are in a position to devote themselves to alleviating illness and dispelling misery — health officials, I mean — are preoccupied with covering up for their mistakes on flu and satisfying the needs of the pharmaceutical companies.  Instead of looking at the suffering in our midst.

DHHS: Grasping at Straws

What makes us feel that the once-estimable Department of Health and Human Services is drowning in a big pond of unused flu vaccine?

Is it the Advertisement?

A full-page ad taken out by DHHS in the main news section of today’s NY Times sounds very defensive when it claims that “H1N1 Flu Vaccine is Safe and Effective.”

The advertisement makes it seem like getting immunized against swine flu is a kind of patriotic duty.

Fighting the flu is a shared responsibility.  We ask you to join this fight to protect yourself and your community by getting the H1N1 flu vaccine.

And it’s signed by leaders of 35 health- or safety-related organizations — “top medical professionals,” according to the page’s header — who seem to be collaborators in a DHHS attempt to guilt the public into getting a flu shot.  Do it for your neighbors if you won’t do it for yourself, the text seems to say.

The clumsy production of the ad itself makes it all the more abject:  there’s a quarter page of grey text in a swimmy, sans-serif font, below which are two stacks of logos (of the 35 organizations) — vaguely impressive as a color border to the text in the version posted at flu-dot-gov, but just visual noise spilling down the Times page in black and white.

And some of the logos are trademarked or registered — requiring a tiny-type footnote reminding any reader intrepid enough to have reached the bottom of the page that DHHS doesn’t endorse private enterprises.  (It’s a little hard to understand how the collaboration on flu vaccination does not constitute an endorsement of private enterprises, but let’s not get bogged down.)

Is it the armada of PSAs and posters?

The ad is just the latest attempt by DHHS to muster enthusiasm for the flu campaign.  It makes available a panoply of printed material at its flu website, intended for Spanish-speaking Americans, African Americans, Asian and Pacific Islander Americans, “asthma patients,” and others.  With a separate flotilla of posters and publications for parents, many bilingual (”I’ll protect my baby/Protegeré a mi bebé” and others), plus additional ones meant for older people, diabetics, and travelers.

It’s hard to escape the feeling that DHHS is trying too hard.  And hard to avoid wondering why.

Is it the information itself?

The second sentence of the Times ad tells the sad story:  Over 136 million doses of H1N1 vaccine are now available.   Since the number of flu vaccine doses actually administered so far is probably about 60 million, it takes only grade-school arithmetic to realize that the federal government purchased much more H1N1 vaccine than Americans are willing to take.

DHHS’s desperate need for everyone to get vaccinated is disheartening.  After all, this is the organization that created and carried out the previous swine flu fiasco entirely on its own:  the 1976 immunize-every-American campaign to prevent the Flu Outbreak That Wasn’t.

So it’s bad enough that CDC, with more experience and research findings than it had in ‘76,  badly overestimated the intensity of the 2009 H1N1 flu outbreak.  It’s worse that DHHS  grossly overestimated the ardor of the American people for media-heavy health crusades at a time of tight budgets and high unemployment.  Most dispiriting of all is that the agency finally resorts to wheedling the public to get immunized against swine flu.

Which gives us a glimpse of another contributor to the sense that DHHS is floundering:

There is a widespread feeling that official agencies overplayed their hand on swine flu.

Everywhere, it seems, doubts are being voiced about the decisions by both U.S. authorities and WHO — declaring the pandemic, publicizing the unprecedented danger, supporting mass immunization, purchasing and distributing Tamiflu, and so on:

A conclusion:  it feels like DHHS is drowning because it is.  Officials made bad choices, fell for the preparedness charade, lost sight of what it would mean to protect the public’s health and strove instead to protect the professional organizations’ campaigns for attention and the pharmaceutical companies’ ploys for profit.

An appeal to Secretary Sibelius:  just say “We goofed.”

Say “We should have used the resources to help people quit smoking or to control MRSA or to verify the safety of pharmaceuticals. We didn’t; we overestimated flu.  We meant well but we loused up.  We’ll try to do better next time.”

Say “At least we didn’t kill people with vaccine, like in ‘76″ (okay, for legal purposes, you probably have to say “…allegedly kill people,” since the U.S. government has not admitted that the 1976 vaccine actually caused the deaths from Guillain-Barré syndrome).

Say “How much better to have prepared by urging hospitals to consider surge capacity and then to find it wasn’t needed, than to have done nothing and seen people die who could have been saved by administering antivirals.”

Say “We know that vaccines are not the answer to flu.  We know that the flu vaccine isn’t very effective, we know that immunization against flu is not very useful as a public health intervention unless everyone is immunized, we know that it’s impossible in this country to force everyone to be immunized, we know that immunization is good for people who stand to get very sick if infected but that all it offers to the majority of the population is a reduction in the odds of getting sick.   We know that we need to take a more complex approach to flu control.  We’re working on all that.”

But please spare us the embarrassing advertisements.

Obesity and Public Health Control

This month’s American Journal of Public Health brings us a primer (abstract here; subscription required for full text), written by lawyers supported by the Robert Wood Johnson Foundation, teaching “policymakers to avoid potential constitutional problems in the formation of obesity prevention policy.”

The article isn’t exactly a Steal This Book for the anti-obesity crusaders, but the authors’ stated aim is to help those crusaders skirt legal challenges to statutes that might, for instance, ban fast foods or require the posting of accurate calorie counts on restaurant menus:  “This primer is meant not to deter obesity prevention efforts but to foster them,” the authors adumbrate.

Of course, the anti-obesity crusade is well on its way to using the law to tighten the control of behavior already.  And the failure of restaurant calorie counts to show any effect on eating patterns isn’t dampening enthusiasm, it seems.

Brian Elbel of NYU and colleagues just reported in Health Affairs that the calorie counts now posted by law in New York (another piece of legislation backed by our bluenose mayor) don’t affect how much people eat,  based on a study of over a thousand New Yorkers from minority neighborhoods (abstract here, full article here).  At Freakonomics, Stephen Dubner surmises that this sort of program only helps people “who are already the most vigilant about their health and well-being.”  But it’s hard to find anyone in public health who is opposed.

They should be.   The public health industry, which likes to claim its main interest is human dignity, should be lobbying for less regulation of human appetites, not more.

But public health is often the pre-eminent paradigm of control in our society. Rename the acts or traits you find morally repugnant as diseases, and you can hand them to the health sector for management.   Once you say you’ve got an epidemic on your hands, you can count on the public health industry to respond.  Alcoholism, addiction, smoking, obesity, social anxiety… there seems to be a big supply of epidemics that used to be moral offenses or threats to the social order and are now opportunities for your doctor or your health commissioner — not your clergyman — to tell you how to act.

The neat thing about the control exercised through public health is that you never have to sermonize, read Bible verses, or prophesy Apocalypse.  The rhetoric of risk is a lot easier for the self-professed progressives in public health to swallow than religious sermonizing would be.  Even when the sermon and the risk rhetoric have the identical goal: wiping out the moral offense.

From Junkfood Science, we learn that

Employers will now perform random tests of employees for evidence that they’ve smoked outside of work and will weigh employees in the workplace and report their BMIs to the state. Employees deemed noncompliant with the State Health Plan’s employer wellness initiative, will pay one-third-more for health insurance. Employers believed that eliminating smokers and fat people would lower health costs.

And from WSJ Health Blog, that the CEO of pharmaceutical corporation Schering-Plough agreed (at a meeting at the Cleveland Clinic) that people with unhealthy behavior should pay more for health insurance.  Sure — you certainly wouldn’t want the wealthy to pay more.

That’s not the only problem with the public health industry’s vigorous embrace of behavioral control, but it’s a big one.  Start classifying people based on how they behave, and you begin discriminating against the ones who don’t act right.  But the ones who you think don’t act right are almost always the ones society was already discriminating against — the poor, most of all.

And even when the poor aren’t getting shafted in the crusade against the unhealthy, inquiry about how a just society should work is going down the tubes.  The profound moral-philosophical questions of what is the right way to live a life, the right way to raise children, the nature of liberty, and so forth, are surrendered in the public health paradigm – replaced with the simple dichotomy:  healthy vs. not-healthy.