Henrietta Lacks died of cervical cancer in the “colored” ward at Johns Hopkins Hospital, in 1951.  From samples of her cervical tissue, the immortal cell line called HeLa was developed (by Dr. George Gey, at Hopkins).  Skloot’s story covers the family’s travails before and since, but also digs deep into the problem of race in the business of American medicine.  Her account challenges, or should move us to challenge, the smug certainties about our supposedly post-racial society, and the convenient formulae about “informed consent” and “access to care.” I guess I should say, The Immortal Life should make us ask just what “care” means in today’s system.

Henrietta Lacks and her family members were almost never taken seriously as humans with real problems.  First, they were poor and uneducated black people from tobacco country relocated to Baltimore; then, they were the bearers of the same genes as a woman (Henrietta) who had died of a remarkably aggressive, and therefore medically interesting, cancer; later, they were background and local color to the story of the origin of the thriving, and therefore scientifically interesting, HeLa cell line.

To Skloot’s credit, she’s taken to heart, and acted on, the problem:  she founded the Henrietta Lacks Foundation to help raise funds for education and medical expenses for Henrietta Lacks’s family.  Skloot’s blog, Culture Dish, carries updates about some of the achievements of the foundation and sometimes takes up issues germane to the book, especially regarding personal rights to genetic information (here, for instance).

It’s also impressive that Skloot interweaves in her narrative (and takes up more fully and explicitly in an Afterword) the vexing question of ownership of tissue samples.  She highlights how the expanding capacity to extract information from genetic sequencing ups the ante on the questions of privacy of tissue samples — since it’s now possible to ascertain potentially identifying information from genetic sequences even in a sample from which the usual verbal identifiers (name, address, and so forth) have been removed.  And she asks how the profits potentially available from exploitation of new discoveries should be shared.

The intersection of these problems with the matter of race makes The Immortal Life of Henrietta Lacks, like James Jones’s Bad Blood and Harriet Washington’s Medical Apartheid, a book that should be required reading for everyone involved in the health sector today.

May CDC become a force for real public health, not an advocate for the risk-avoidance canard.  May the new director, Dr. Frieden, stop favoring pharmaceutical companies’ profit making through expansion of immunization.  And may he direct the agency to begin to address legitimate public needs, like sound answers about vaccines and autism, and clear communication about what is — and isn’t — dangerous about obesity.

May WHO officials stop playing with the pandemic threat barometer.  May WHO begin demanding that the world’s wealthy countries devote at least the same resources to stopping diarrheal diseases, malaria, and TB as they do to dealing with high-news-value problems like new strains of flu.   Diarrheal illness kills as many children in Africa and Asia in any given week as the 2009 swine flu killed Americans in eight months.  So does malaria.   Direct policy, and money, toward sanitation, pure water free of parasites, adequate treatment of TB, mosquito control, and prevention of other causes of heavy mortality in the developing world — not just flu strains that threaten North America, Europe, and Japan.

May public health professionals lose their obsessions with bad habits. May the public health profession return to the problem of ensuring basic rights — access to sufficient food, clean water, decent housing, good education, a livable wage, and adequate child care — and ease up on its moralistic obsessions with nicotine and overeating (for recent examples of the preoccupation with tobacco, see this article or this one (abstracts here; subscription needed for full articles) in recent issues of the American Journal of Public Health).

May science be what Joanne Manaster does at her incomparable website: looking at the world with wonder, asking without dogmatic preconceptions how it works, and accepting that its irrepressible quirkiness makes it impossible to know the world perfectly.  May science not be the crystal-ball-gazing thing whose so-called “scientific” forecasts are really doomsday scenes worthy of the medieval Church — predictions of liquefied icecaps and rising seas,  hundreds of millions of deaths in a flu pandemic, or catastrophic plagues sparked by people with engineered smallpox virus.  There are plenty of reasons to be concerned about both the environment and disease outbreaks based on sound here-and-now observations; leave the forecasts of Apocalypse to the clergy, who know how to handle dread.

A new year’s wish (from the valedictory exhortation in Tony Kushner’s Angels in America):  “More life!”

But how can every day not be AIDS Day?  Over 5,000 people die of AIDS each day, worldwide — even now, in the era of effective therapy.  In south Asia alone, more people die of AIDS every two weeks than have died of the H1N1 swine flu worldwide in the past six months (about 8,000).  In Africa, AIDS takes that toll every two or three days.

AIDS is a big problem in far-away poor countries, in other words.  But unlike the usual poor-nation problems that are easily ignored in comfortable North America — malaria, sleeping sickness, dengue, diarrhea, and more — AIDS is still a problem here, too.   Surely, you might think, we ought not to need any reminders about AIDS.

Much has been said about AIDS, and much has been done.  What does World AIDS Day add?

A harder question, perhaps: why can’t AIDS just be an ordinary disease? Surely, you might think, it isn’t special anymore.

Here are some thoughts on the problem of ordinariness, published in the American Scholar a few years ago.  The occasion was the 25th anniversary of the announcement of the first U.S. cases of AIDS.

“We all want to believe that a pill or potion that comes from sea coral or from the Amazon jungle will cure that pain for which little else has worked,” Verghese writes.  The “flip side,” he says, “is that we are extraordinarily sensitive to any suggestion that someone is taking away something we think is good for our health.”

And magical thinking’s influence isn’t limited to cruising the natural supplements aisle or reading the ads in a health magazine.  Sometimes it’s part of expert opinion — and so it becomes part of widespread belief.

Consider how the flu experts talk about the possibility of swine flu’s return this fall. In Monday’s Washington Post, the experts’ words wax electric.  Dr. William Schaffner, chair of Preventive Medicine at Vanderbilt U.’s medical school, asserts that “The virus is still around and ready to explode…. We’re potentially looking at a very big mess.” And Dr. Arnold Monto, a physician epidemiologist at U. Michigan’s School of Public Health, worries “about our ability to handle a surge of severe cases.”

So, even as H5N1 reports that an article in The Independent finds scientists skeptical as to whether there will be a so-called second wave of serious flu outbreaks in the northern hemisphere this fall, we’ve got American scientists suggesting — in high-voltage terms — that something awful is going to happen.

They’re not wrong: something bad might happen.  That’s always true.

But language matters.  And language coming from so-called experts matters a lot.  It has magic.

Vigorous metaphors promote popular fears.  The last time swine flu came around, in early 1976, respected virologist Edwin Kilbourne published an influential op-ed piece in the NY Times (13 Feb 1976), called “Flu to the Starboard! Man the Harpoons! Fill with Vaccine! Get the Captain! Hurry!” Kilbourne urged officials to prepare for an “imminent natural disaster.” Fair enough:  a serious H1N1 flu might have happened in ’76 (it didn’t) — but his whaling metaphor appealed to more than just preparation.  It was about power and authority (“get the captain!”).  Presumably, the authority of science, industry, and government.

And so with other metaphors that are meant to be calls to arms.  There were the warfare metaphors about the alleged threat of bioterrorism, and the plague metaphors about AIDS.  Now, there are explosive metaphors about obesity.

Last year, acting U.S. Surgeon General Dr. Steven Galson called childhood obesity a “national catastrophe,” for instance.  And Dr. Risa Lavizzo-Mourey, president of the Robert Wood Johnson Foundation, warned of obesity’s “corrosive” effects, which, she asserted, imperil a generation of America’s youth.  According to Dr. Matthew Gillman of Harvard “You build [obesity] up over generations” — like an electrical charge in a capacitor, like explosive potential, the reader has to presume.

Talking about childhood obesity, Dr. Eric Hoffman of Stanford told the Washington Post that “we have taught our children how to kill themselves.”

Invoking metaphors to create magical thinking isn’t just an American habit.  Childhood obesity is a “time bomb,” according to physician Howard Stoate, chair of Britain’s All-Parliamentary Group on Primary Care and Public Health.

Verghese’s right.  People can be afraid to let go of what they believe they need for their health — however magically.  And magical thinking is inside the way our experts talk to us about health.  That sort of magic can run deep.

Last Tuesday, a post by Revere at Effect Measure highlighted the effect that cultural anxieties have on the production of scientific knowledge — specifically with regard to modes of contagion.   In the 1920s, a time of worry about immigrants and socialists, public health “concentrate[d] on society’s most marginal people, in keeping with the Zeitgeist.”  Thus Typhoid Mary, and other concerns about germ carriers.  By contrast, when the environment is of most concern, people worry about transmission via objects — fomites in our odd epidemiology jargon (from Latin fomes:  touchwood or tinder).  There are reminders to wash hands after touching the subway handholds, not to handle other kids’ toys, to think about doorknobs.

On Thursday, “Swine flu this fall:  turbulence ahead” took the time to work through the results of mathematical modeling — a highly readable post which explains why some modeling results suggest a rationale for the belief that swine flu might spread intensely in the northern hemisphere this fall.  Revere does the favor of reminding the reader that models are not always good predictors of what will happen.

History shows that the metaphors that guide scientists’ focus in tracking contagion aren’t always perfectly either/or.   They don’t alternate neatly between people-directed or environment-directed, that is — more typically, many myths and metaphors compete for attention, with certain ones winning out at any given moment.  Now, the alleged toxicity of the environment seems very compelling to some people, and there are also contagion concepts based on fears of foreigners, suspicions of supposedy nefarious corporations, worries about open borders, anxieties about public education, concerns that governments keep secrets, and so forth.

The guiding metaphors for contagion breathe life into moral, political, or profit-making campaigns.  The magic-bullet concept remains compelling, for instance, and perhaps accounts for some of the interest not only in Tamiflu but in whether or not flu strains are resistant to it, and whether or not it will be made available,  to whom, and at what cost.  There’s a post at H5N1 on this today.

But there’s an overarching truth about swine flu:  our society can’t seem to leave it alone.  No matter how small the tally of confirmed H1N1 flu deaths (WHO counted 1154 as of the end of July, the European Centre for Disease Prevention and Control‘s report today puts the number of deaths at 1645 — but even the higher number yields an exceptionally low case-fatality ratio:  under 0.1%, roughly on the order of seasonal flu.  So this remains a far-reaching but so-far mild outbreak.

Yet the question of whether or not it will become more severe — more virulent, more deadly — remains front and center for public health people, and stays alive as a media story.

Okay, yes, it’s important to be prepared.  It would be shameful if there were deaths that would have been preventable with a little forethought and planning.

That accounts for the assiduous tracking by serious public-health people.  But what accounts for the prominence of this rather mild outbreak in the public consciousness?

This is an era of epidemics.  Which is to say, it is an era of fear.  There must be something wrong, it is so easy to think.  This is not just the work of media (although they help, and it doesn’t hurt that playing on fear sells).  It runs deeper than that.  Our modern civilization seems, sometimes, deeply uncomfortable with the world we’ve created.

Last Thursday, for instance, the  New York Times ran a story featuring a study that claimed TV viewing is linked to blood pressure increases in kids.  It’s a story of toxicity in the constructed environment — of the ways contemporary arrangements are inherently and latently harmful (yes, latently:  TV isn’t causing kids to shoot other kids, at least not in this story; it is allegedly causing them to develop a so-called risk factor for later harm).

How do we keep an eye on flu, or other outbreaks, and seek ways to protect everyone from harm as best we can, but avoid hysteria about contaminated toys, subway riding, TV viewing, processed foods, and so forth?  This is a challenge.  It means examining what makes us anxious, and it means understanding that life has risks that can’t be avoided.

Yesterday, according to an Associate Press report, Frieden sermonized that “obesity and … diabetes are the only major health problems that are getting worse in this country, and they’re getting worse rapidly.”  Now, Dr. Frieden heads the agency that collects data on illness and calculates disease rates; presumably, he knows that many conditions are either increasing now or have risen to high levels from which they have not retreated — MRSA, Lyme disease, injuries in certain occupations, and foodborne illness, to name just a few.

But as Dr. Frieden’s campaigns in New York City against trans fats, unprotected sex, and TB sufferers who didn’t take their meds  revealed, when there is a moral battle to be fought the facts just get in the way.

The impetus for yesterday’s obesity sermon was a study by investigators at RTI who had determined that “obesity-related diseases” account for over 9 percent of U.S. healthcare costs.  Most people who suffer from most of the so-called obesity related conditions are not actually obese.  Even diabetes, the one most commonly associated with obesity in the popular mind (and, apparently, Dr. Frieden’s) occurs more often among people who are not and have never been obese than it does among those who are obese.  So the study was really showing that obesity accounts for much less than 9 percent of healthcare costs.

But that wasn’t the only problem.  While the RTI study found that obese people spend 40 percent more than comparison “normal” people on health, most of the increase in spending was related to pharmaceuticals.  So one might ask if it was obesity that was increasing expenditures, or the price of certain drugs.

Furthermore, there’s no way to know whether being fat was causing the obesity group in this study to be sick in ways that cost more money, or if they were fat because they were unwell in the first place.

In fact, the study wasn’t designed to test whether becoming obese led to an increase in medical expenditure — which might have shed some light on the question of whether obesity causes higher costs.  Many people in the study had no  expenditures at all for certain types of healthcare costs.  But the researchers weren’t interested in finding out whether obesity sometimes costs nothing at all, so they used an adjustment technique to allow them to relate obesity to predicted expenditures.

Finally, the estimate of percentage of total healthcare costs attributed to obesity-related expenditure was based on the assumption that obese people who return to “normal” weight suffer no consequences of their weight loss — an assumption that is well known to be false.

So it’s a falsehood to state on the basis of the RTI findings that obesity is accounting for a tenth of American healthcare costs — although AP, Reuters, and other media outlets so claimed in covering the Frieden sermon.

In fact, a lucid assessment of the findings would ask why, if obesity is supposedly up 37% among Americans and if two-thirds of Americans are now overweight or obese, obesity would account for only 9% of costs?  Surely if obesity is so bad, increasing its prevalence by more than a third would be swamping the healthcare industry with fat people.

But the whole appeal of a sermon is that it isn’t based on fact or lucid assessment of the present reality. It’s based on suppositions about the future with a steadfast moral foundation.  Frieden has the supposition and he has the moralism.  His religion is that it’s up to the “community” to perfect itself.

As Shirley Wang at WSJ Health Blog reports,  Dr. Frieden believes that  increasing availability and decreasing price of healthy foods, while decreasing availability and increasing  price of unhealthy ones, “is likely to be effective.” He claims that the decision to adopt such a strategy “is a political one.”

But of course it isn’t political in its essence; it’s moral.  When the community is told to perfect itself it rises to the occasion by looking to the usual moral suspects:  women, especially pregnant women or mothers; the uneducated; the poor.  Last fall, Frank Furedi discussed the moral underpinnings of British authorities’ removal of fat children from their parents’ homes.  And we can hope he’ll have something to say about what’s happening in the U.S., where the community policing can be even worse:  a few days ago, a South Carolina mother was arrested and charged with neglect for having a son who weighs over 500 pounds.  Other states have contemplated other methods of dealing with parents who violate the community standards of parenting.  Not by hitting their kids, starving them, or forcing them to work — but by allowing them to get fat.

Obesity is offensive, it seems, in just the way that sexual license and intemperance with alcohol have been found offensive by some.  And just as the problem with sex and drinking has been found in the environment — in “peer pressure,” the “latchkey phenomenon,” TV advertising, Hollywood, and the decline in “family values” — so it is with obesity.  “We did not get to this situation … because of any change in our genetics or any change in our food preferences,” Frieden adumbrated.  “We got to this stage of the epidemic because of a change in our environment and only a change in our environment again will allow us to get back to a healthier place,”

It isn’t obvious what to do when appetites produce offense — so it’s handy to claim that the environment is at fault and then to hand the problem to public health.  Because for certain health officials, it’s always clear what to do:  Take the moral high path, clean up the offending elements, urge the community to police itself better.  If more parents are arrested… well, perfection has its price.

Back in April, a fast-food establishment in Leytonstone, in the northeastern part of London, was shut down as a public-health threat.  As Patrick Hayes explains at Spiked, a 2009 initiative of the local council, called the Sustainable Community Strategy, outlaws the establishment of new carry-outs within 400 meters of a school.

Supporting the rhetoric, Professor Kathy Pritchard-Jones, president of the European Society for Paediatric Oncology, stated in February that “If we don’t … tackl[e] how much exercise our young people take and how concerned they are about what they eat and their weight, we are going to have another explosion of cancers.”

Last week, the U.K.’s Environment Secretary, Hillary Benn, invoked the fight against obesity as rationale for increasing access to open spaces, asserting that “green spaces are good for us” – a pitch which moved Spike’s sharp-eyed Rob Lyons to note that “You can’t even go for a stroll these days without it being turned into a health initiative,” and to anticipate that “chubby people [will be] quick-marched around a south London park for 30 minutes on a regular basis to help them lose excess pounds.”

There are so many pieces to the fanfare over the “obesity threat” that it’s impossible to assign one cause for the commotion. For a long time, Junkfood Science has investigated the sociology of the “science” of obesity in detail, and has exploded many of the central myths of the anti-obesity movement – most importantly the apocrypha about fatness and mortality.

And Paul Campos’s brilliant book The Obesity Myth (Gotham, 2004) explains how a constellation of wealthy industries together support the lose-weight-now rhetoric.

Elizabeth Kolbert’s assessment of some new books on the topic in this week’s New Yorker embraces the tired rhetoric, assuming that fat is bad and asking why people eat so much.  To her credit, Kolbert takes the plunge into examining the new field of fat studies.  But she ends up disparaging fat studies for “effectively all[ying] itself with McDonald’s and the rest of the processed-food industry, while opposing the sorts of groups that advocate better school-lunch programs and more public parks.” Apparently, asking that fatness be examined in the context of both social structures and individual liberties strays too far from the central dogma of the anti-obesity crusade.  To which (pace Hillary Benn) public parks are balm and tasty fries are anathema.

But an often-neglected aspect of the anti-obesity panic is the overtone of class and the undertone of race. In Leytonstone, for instance, it turns out that the community has been troubled by the profusion of cheap eating establishments, especially in regard to the “anti-social behaviour” that it supposedly brings.

Yet, as Hayes notes at Spiked, it was a Jamaican establishment that was singled out for closure – while more echt-English outlets, like fish-and-chips shops, have been ignored.  The decision that behavior is anti-social being always in the eyes of the beholder – or the skin color of the beheld.

In most of the developed world, fatness is more common among the poor.  In the U.S., it is far more common among African Americans.  Obesity is a marker for being out of power.  To assert that you are against obesity is to state that you intend to identify with those who have power, and mean to keep it.  You can wag your finger at the misdemeanants who eat fast food and fail to exercise — without having to come out and say that what is really troubling you is that your people are starting to look like those people – like the poor, like the dark-complected … like the fat.

No wonder the anti-obesity rhetoric has heated up in Britain, and is catching on in Europe.  It’s a winning way to wage the war against the poor and unentitled, without having to seem arrogant or racist.

The visit spoke to a modern concern, too:  the connections between purity and public health.

The commandant at Belzec, Christian Wirth, had been one of the directors of the Nazi euthansia program, nicknamed T4.  Between 1939 and 1941, T4 killed over 70,000 Germans — mostly full-blooded “Aryans” — who had psychiatric or developmental problems, or congenital conditions, and who were therefore lebensunwerten, unworthy of life.

The T4 program, in its turn, grew out of the Nazi doctrine of racial hygiene — an effort to improve the public’s health by control of breeding.  Racial hygiene was based on eugenics, and led to public health endeavors such as screening for congenital conditions, mandatory sterilization of sexual transgressors and disease carriers, and selective breeding.  The Nazi public health program was much applauded by American public health experts, at least in its first few years.

Once the decision was made to eliminate Jews from Nazi-occupied regions, the experience that Wirth and colleagues acquired through killing the lebensunwerten in T4 was invaluable.  Going from exterminating tens of thousands of mentally ill or developmentally disabled people to eradicating a few million Jews, Gypsies, and other polluters of Aryan health was just a matter of making the process more efficient.

It’s striking how thin the line is between laudable public health goals, like limiting congenital disease through screening, and implementing the concept of race purity.

Frieden tried hard to reconfigure the role of the health official in 21st-century America.  He seemed to have recognized that health is on the main stage now in the policy theater.  And he’s been searching for a new role for the public-health physician.  As DemFromCT points out in yesterday’s DailyKos, Frieden handled the swine flu crisis well.  All good.

Still, it’s hard to applaud Frieden for his work during his tenure as commissioner here in NY.  Perhaps he couldn’t stand in the way of the moral juggernaut driven by mayor Mike Bloomberg.  Or maybe Frieden’s medical focus makes him share some of Bloomberg’s fervid disdain for the nasty bits of urban life — the smoking, the quick noshes, the hook-ups — even if not the bluenose moralism.  What can’t be denied is that Dr. Frieden and Mayor Bloomberg together promoted the myth that bad health is purely a matter of bad behavior.

The myth was an alarming break with the reality of the real causes of poor health, but it played well.  There was the ban on smoking in bars, the ban on serving trans fats, the constant hectoring about what we eat and how much of it, and the finger wagging about AIDS “complacency” and our failure to use condoms.  There were the restaurant closings on account of violating the health code (that was after the City’s health department had been embarrassed by media reports of rats in a number of food establishments).  Those were aspects of the stagecraft that has characterized the Bloomberg reign in NYC, but none of them had much impact on the city’s health.

What there wasn’t, under Bloomberg-Frieden, was any discussion of how to improve health through providing better housing – and Dr. Frieden seems to have raised no objection to the mayor’s new plan to charge homeless people rent for staying in city shelters. In fact, housing was off the health agenda entirely – although it has always been on Bloomberg’s, usually in the form of deals that would sell to developers middle-income housing or the land it stands on — even though decent housing would arguably have made more difference to the health of more people than trans fats ever would.

Neither did Dr. Frieden ever publicly argue for funding for public schools or prep-for-college programs on the grounds that education translates into better health.   Great opportunities for real change were passed up in favor of preserving the myth of behavioral risk.

In the recent crisis over swine flu, Frieden was statesmanlike – and we have to hope he’ll show similar circumspection and gravitas as CDC Director.   At Effect Measure, revere points out the need for good management at CDC.  But we also have to hope that, once free of Bloomberg, Dr. Frieden doesn’t bring the same moralistic sermonizing to the matter of disease control.