Philip Alcabes discusses myths of health, disease and risk.

NYC: Unethical Research by Bloomberg Administration

I had missed this story when the NY Daily News broke it in September, but  the front page of today’s NY Times made it impossible to ignore:  Mayor Mike Bloomberg’s administration is conducting unethical experimentation on human beings.

The News describes the experiment very simply:

[New York City’s] Department of Homeless Services split 400 struggling families into haves and have-nots.

The “haves” get rental assistance, job training and other services through a program called Homebase.

The other half … were dubbed the “control group” and shut out of Homebase for two years. Instead, they were handed a list of 11 agencies and told to hunt for help on their own.

The aim of the experiment, allegedly, is to find out whether Homebase, a $23 million program, is effective.  The city’s Commissioner of Homeless Services told the Times that

When you’re making decisions about millions of dollars and thousands of people’s lives, you have to do this on data, and that is what this is about.

(If you thought that what it’s about, for a commissioner meant to deal with homelessness, is making sure that people have homes — you were so wrong.  Silly you.)

To make matters worse: what’s being tested is a program whose effectiveness the city has already asserted. As Mike, who blogs brilliantly on this and many related topics at SLO Homeless, notes:  the 2010 Mayor’s Management Report, issued in September, claimed that Homebase helped “ninety percent of clients in all populations receiving prevention services to stay in their communities and avoid shelter entry.”

So, to make sure this is clear:  New York City is deliberately denying a couple of hundred families access to an existing homelessness-prevention program that it has already declared to be highly effective.

The scenario is identical to one that kicked up storms of controversy in the medical-research world in the 1990s (neatly contextualized and summarized here):   experiments were conducted in Africa and southeast Asia supposedly to test the effectiveness  of an already-proven preventive regimen, AZT.  Administered during pregnancy, it reduced the likelihood of mother-to-fetus or mother-to-infant transmission of HIV.  In the poor-country experiments, half of the women enrolled got the effective regimen; the other half got placebo.

In other words, if you were pregnant and infected with HIV and you had had the wisdom to live in the U.S., you got a treatment that protected your infant from infection.  If you lived in a poor country you got:  studied.

There’s something about poor people, and especially about poor women with kids, that seems to make them smell like catnip to the always evidence-hungry technocrat cats.

Want to run a placebo-controlled trial?  Find something that already works (antiretrovirals, homelessness prevention, or, in other circumstances, syphilis treatment, TB prevention, etc.), then find a few women with kids who need it — then tell them you’ll flip a coin.  Heads, they get what they need; tails… well, too bad.

I’m a scientist.  I believe that evidence can be helpful.  Sometimes, it’s crucial.  When you’re truly unsure whether to pick prevention A or prevention B, data can help you to choose right and avoid harm.  That’s the great promise of science.

But sometimes the appeal to evidence is baleful — like here in Bloomberg’s New York, where evidence on homelessness is just a way of furthering the aims of the technocracy.  Which always means that some people will avoid harm.  Others will pay the price.

And the others are, so often, poor women with children.

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!”

Revolving door? Official agencies and the private sector

In late December, Effect Measure reacted to former CDC director Dr. Julie Gerberding’s hiring as President of Merck Vaccines. With customary cogency and insight, Revere addresses the problem of the so-called Revolving Door.

At The Great Beyond, Daniel Cressey notes that Dr. Gerberding, while at CDC, was accused of promoting the Bush Administration’s agendas at the cost of scientific accuracy.  Naturally, now that she is heading for Merck, many are concerned about what looks like a cozy relationship between official agencies and pharmaceutical companies.

Merck says that its vaccine arm is worth $5 billion.  It “markets vaccines for 12 of the 17 diseases for which the U.S. Advisory Committee for Immunization Practices currently recommends vaccines,” according to the company’s press release.

Dr. Gerberding was close to the vaccine world as head of CDC. In fact, during her tenure there CDC’s   Advisory Committee on Immunization Practices (ACIP) called for the implementation of immunization against human papillomavirus and varicella zoster (chicken pox) virus and the agency pushed for expanded immunization against seasonal flu; within 10 months of her (January ’09) departure from CDC, the ACIP had issued recommendations for the use of anthrax vaccine and Cervarix and Gardasil vaccines against HPV.  Gardasil  is a Merck product.

But the problem is more than the “revolving door” metaphor implies.  To have a door there must be a wall — a clear demarcation between inside and out.   As if corporations (pharmaceutical companies among them) were outside of the official system, eager to get the ear of those inside.

Whereas it seems that there isn’t really much of a wall between official health agencies and big business at all.  To be an official today means taking a veritable oath of loyalty to corporate solutions.  The official has to deal in risk.  She has to be ready to sell risk as a kind of debt:  people should want to avoid risk, just as they avoid debt; but if their behaviors put them “at risk,” they can relieve it through “lifestyle” correction.  You can refinance if you know how.

The correction that allegedly relieves risk usually involves the use of better products. Cut out trans fats,  lower your cholesterol, elevate your mood, hop on a treadmill, lose weight, drink responsibly, get seasonal flu vaccine, get swine flu vaccine, wait patiently while the full-body scanners are used at the airport, eat more vegetables, wear sunblock, use hand sanitizer.  Health officials’ job is to get the means for personal risk reduction to the sorry at-risk population.  Have hand-sanitizer dispensers installed in public buildings.  Distribute condoms.  Publish recipes for healthy meals.

Notably, health officials are not supposed to argue for any of the things that would actually make a difference to the public’s overall health:  redress wealth disparities, provide excellent primary care for everyone (including immigrants), or build more decent and affordable housing.  When was the last time you heard a health official call for a campaign against poverty?

The official has to pitch personal risk reduction, in other words.  She has to be ready to support high-cost, individualized approaches to improving the public’s health — or well-being, which, Dr. Michael Fitzpatrick astutely notes at Spiked!, has replaced health as the main objective of modern Good Works .

Health officials keep faith with the dogma of risk avoidance.  Corporations preach risk reduction and peddle the wares by which people can restructure their lives — and avoid risk.  The wall separating government policy makers from corporate solutions gets more and more flimsy.

Myth Making and Health: New York’s Health Commissioner Will Head CDC

New York’s health commissioner, Dr. Thomas Frieden, will be leaving town to become director of the federal Centers for Disease Control and Prevention in Atlanta.

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.