Philip Alcabes discusses myths of health, disease and risk.

A Must-Read Book

I urge you to stop what you’re doing and read Rebecca Skloot‘s The Immortal Life of Henrietta Lacks (Crown, 2010).   It’s a rare combination: clear reporting on how medical science works, insightful consideration of deep moral issues about the uses of human tissue for the advancement of knowledge, and a moving, often troubling, family narrative.

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.

By Philip Alcabes | August 20th, 2010 | Categories: Ethics, Health Professions, Myths, Narratives, Physicians, Uncategorized, books, science | Tags: , , , , , | No comments

New Year’s Wishes for Public Health

May 2010 be the year when health officials return to the business of alleviating suffering and stop promoting panic. (Don’t miss Nathalie Rothschild’s “Ten Years of Fear” in Spiked!’s Farewell to the Noughties, recounting the hyped-up panics of the ’00s — from the Y2K bug to swine flu.)

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!”

By Philip Alcabes | January 4th, 2010 | Categories: Behavior, Disease, Health Professions, Myths, News, Outbreaks, Risk, epidemics, obesity, public health | Tags: , , , , , , , , , , , , , | 1 comment

Questions on World AIDS Day

Today is World AIDS Day.  After thirty years, 25 million deaths, and countless articles, books, press releases, TV and radio programs, fundraisers, AIDS walks, and messages from Bono  –  there’s still an AIDS Day?  It’s hard to see how any disease could be less in need of a boost to awareness.

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.

By Philip Alcabes | December 1st, 2009 | Categories: Disease, Myths, Narratives, epidemics, public health | Tags: , , , | Comments Off

Medicine and Magic

In his post at The Atlantic yesterday, Abraham Verghese made the case that magical thinking is a powerful driver of debates over health and health care.

“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.

By Philip Alcabes | August 13th, 2009 | Categories: Disease, Health Professions, Myths, Narratives, Physicians, Uncategorized, obesity, public health | Tags: , , , , , , , , , , | Comments Off

Fear and Flu

Kudos to Revere, for two enlightening posts on flu — which bear on an important issue in the health realm today.

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.

By Philip Alcabes | August 9th, 2009 | Categories: Disease, Health Professions, Myths, Uncategorized, epidemics | Tags: , , , , , , , , , | Comments Off

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