Philip Alcabes discusses myths of health, disease and risk.

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.

Avoiding Panic: The Imagined Crisis

The Global e-Forum, a Japanese site interested in world issues, posed this question to a number of professionals in the public health and public policy field:

In dealing with the issue of a pandemic, if we stick to finding out how to block the infection completely, we may take extreme measures and, as a result, trigger a pandemic panic. Is there a way to avoid the pandemic without adding to people’s concern more than necessary? (full text of query here).

Since the question of balancing response with panic promotion is on many minds, this seems worth addressing.  But there’s the larger problem:  do we need even to ask this question?  Is there a crisis on hand with flu?

We think not.

“Marx claimed that great events of history occur twice, first as tragedy and then as farce,” we pointed out.

“The swine flu of 2009 certainly looks like a farcical replay of the great influenza outbreak of 1918…. [It’s] not a funny farce…but death from contagion is a normal part of life in an unpredictable universe.”  A few thousand deaths in the course of six months is lamentable, certainly.  But it’s hardly out of the ordinary for flu.

The collusion of officials and big corporations has been allowed to construct a global crisis. The farce is that the imagined flu crisis will benefit exactly the people who constructed it.

The vaccine manufacturers can expect to see a great expansion of markets (don’t miss Brownlee and Lenzer on flu immunization in the Nov. ’09 Atlantic).

The antiviral-medication manufacturers, the makers of Tamiflu especially, are already bringing in plenty of money for a treatment that is useful in rare clinical situations but has never been shown to stop the spread of flu in large populations.

Officials benefit, too.  They claim they must roll out flu vaccine and provide frequent information updates in order to  “prevent panic.”  And then they’ll look like they’ve done a good job — since, there being no crisis, people are staying calm.

Read the full post here.

No Meeting of Minds on Flu

As the story of the flu pandemic of 2009 matures, it brings out the characteristic traits of each of the  many spheres of interest that it touches.  The physicians are certain that the news is bad, the social critics are skeptical, the official agencies are — in their usual collusion with biotech corporations (especially pharmaceutical companies) — happily promoting high-cost, high-tech responses.  And so on.

Joshua Holland’s post at AlterNet yesterday tries to explain why H1N1 swine flu shouldn’t be cause for hysteria.  He puts this outbreak in the context of flu history and the threat posed by other, more harmful, conditions — malaria for instance.  Holland plays a little bit fast and loose with the numbers:  it probably isn’t accurate to extrapolate, from the number of confirmed flu deaths so far, to get a total number of deaths that will be caused by the swine H1N1 strain this year — more efficient spread in the  cities of the Northern hemisphere in the coming few months is likely to produce fatalities at a higher rate than the more sporadic outbreaks here in April and May.  And he’s overly critical of the media — a point brought out by Revere in a response to Holland at Effect Measure today.

But, as Frank Furedi has been telling us (recently in Erasmus Law Review, for example), try to explain how people’s deep-seated anxieties drive perceptions that risk is extraordinary and unprecedented (and contribute to demands for more and better high-cost technology to deal with it) and you get some people riled up.  Disappointingly, even Effect Measure, whose assessments are consistently level-headed and cogent, slips here, flashing the moral-entrepreneur card at Mr. Holland:

Joshua Holland has never cared for a critically ill person with Acute Respiratory Distress Syndrome (ARDS), which is often the terminal event for flu patients. So I’ll tell him. It doesn’t matter if it’s caused by bacteria (many are). Half of them die no matter what you do and no matter what intensive care unit you have available to you or what antibiotic or what computer controlled respirator. We still can’t do much.

Nobody thinks it’s a good idea to let people get ARDS, and Holland acknowledges that flu is a problem that should be dealt with.  But that’s not always enough.  Question the intensity of perceived risk or the need for all the technology, and you find this out fast.

But Revere is back on track when noting that lots of problems — including malaria — are horrendous and deserve attention, and probably don’t get it because they happen to people far away.

Where would the impetus to deal with global problems besides flu come from?  A global organization that can keep things in perspective would be useful.  Poor W.H.O. isn’t positioned to do that.  Yesterday’s flu advisory from W.H.O. emphasizes the use of antivirals (oseltamivir and zanamivir) to treat people with severe or possibly severe flu:

Early treatment is especially important for patients who are at increased risk of developing complications, those who present with severe illness or those with worsening signs and symptoms.

Yet, the W.H.O. also warns against hastening the development of resistance.  This agency gets a lot of flak for not doing more and for panic-mongering when it does do more.  But, really, it’s only doing its job:  offer advice, and support interventions when invited.  It isn’t consistent, naturally.  It can’t make binding policy.  It faces a limitless and essentially insuperable legitimation problem.  In a way, W.H.O.’s hardest job is simply to maintain its own legitimacy.

Still, in a world poised to interpret signs of illness as evidence of risk and eager for technical fixes to alleviate the sense of vulnerability risk instills, the W.H.O.’s announcements can seem authoritative — and look like beckoning to the drug makers.  A Reuters story yesterday is entitled “Early Use of Antivirals Key in H1N1 Flu: WHO,” and highlights the value of the two antiviral medications more than the caution W.H.O. wants to instill.

Meanwhile, agencies that should be making real policy are focusing on immunization.  In today’s Washington Post, Rob Stein reports on health care workers’ resistance to mandatory flu vaccination.  New York State made flu immunization mandatory early on, not only for salaried health care workers but for anyone — including medical and nursing students — who might come in contact with patients, and is putting teeth into the requirement with sanctions for refuseniks.  The state resorts to high  moral rhetoric to justify its policy.  The state’s health commissioner told Stein that “the rationale begins with the health-care ethic, which is: The patient’s well-being comes ahead of the personal preferences of health-care workers.”

And at CDC, the director is cautioning that there might be a rough start-up to the swine flu immunization campaign, as the first doses of vaccine will be made available in early October.  According to the NY Times, there should be 40 million doses of vaccine available by mid-October.

We wonder whether immunization will be of any public health value at all, by the time there’s enough vaccine that it can be offered to anyone other than health care workers and a few of the people who really need protection (young people, infants’ caregivers, and pregnant women, especially — DemFromCT’s round-up at DailyKos is always worth reading).  Given the rapidity of spread of flu — in 37 U.S. states, H1N1 spread is already regional or widespread; flu is spreading locally in 12 more states, Puerto Rico, and Washington, D.C. — and based on the usual course of flu outbreaks, it seems possible that this outbreak will peak by mid November.  There’s no knowing if that will be so, obviously.  Even if it is, immunization would continue to be useful to prevent severe cases among people who are likely to get very sick if infected.

But mass immunization would no longer be of much use in preventing further incidence of infection on a population level if high levels of acquired immunity are reached across much of the population by the time vaccine is widely available.

That’s the problem with relying on mass immunization as the centerpiece of public health response: as in the old joke about comedy, timing is everything.  In 1976, there was too much immunization, too soon.  It might turn out that this year, there’s too little, too late.  The dynamics of vaccine availability and the dynamics of flu spread have to be watched in tandem, and policy updated accordingly.

In any case, with vaccine at the center, the rest of the story — the complex environmental interactions that allow flu genomes to recombine, the trade in animals and feed that allow viruses to move around, the problems of affordability and immune status and competing viral subtypes, the health care facilities to handle severe cases, and so on — gets shoved to the side.

The “Deadly Choices” Report

Sheri Fink’s thoughtful and masterfully composed “Deadly Choices” report discusses the death of patients at New Orleans’ Memorial Medical Center (MMC) in the days after Hurricane Katrina in 2005 (additional material is at ProPublica).

“Deadly Choices” is heartbreaking.  It recounts a situation that was miserable, terrifying, and in some cases, fatal.  Fink reports that, among 45 Memorial Medical Center patients who died in the days during and immediately following the storm, 17 were deliberately administered lethal doses of morphine, sometimes along with a sedative, by physicians who apparently intended to hasten the patients’ deaths.  (Many of these 17 were patients at a hospital-within-the-hospital, a long-term care hospital under separate ownership that shared some staff with MMC.  At Slate today, Josh Levin discusses some of the troubling truths about the financing of long-term care hospitals, and Fink fills in some more of the blanks with a response at ProPublica.)

As Fink explained to Amy Goodman in an interview with Democracy Now earlier this week, at least one of the patients who were killed was not in extremis; he had not given up.  He was

“Ready to rock and roll, wanted to get out. And apparently, according to several people who later spoke with investigators, a discussion was had in which they talked about how they might get him out, and they decided that because he was so heavy and it was so hot and people had—I mean, just imagine….They had been going on no sleep for days, the medical workers. They were tired. They were terribly disturbed by all the suffering that they felt that they saw around them. And so, in this sort of moment, they apparently decided that [the patient] could not be brought down, could not be evacuated, that there was no way to get him out.”

The story of what happened at MMC is also profoundly disturbing.  It moves us to ask what sort of moral world physicians are expected, and allowed, to operate in.  And to wonder why moral boundaries should be so elusive to exactly the people who, with access to the means to both prolong life and hasten death, walk on morally fraught territory more often than anyone.

The horrifying events at MMC are especially  germane today — because they highlight a vexing question about health care reform that is very hard to answer:   Is our doctors’ job to alleviate suffering, or is it to improve health?

A favored guru on health care ethics, Ezekiel Emanuel, is explicitly in favor of the latter.  In “Justice and Managed Care” (subscription) in Hastings Center Report in 2000, he writes

“The allocation of health care resources should aim at and be justified by the improvement in people’s health…. The special aim or purpose of health care is curing disease, relieving pain and suffering, promoting public health, pursuing research to improve health, and so on.”

The “and so on” means that improving health — the obligation of a health care system, Emanuel asserts — amounts not just to the relief of pain and suffering but also to research and public health, and other tasks as well.  The relief of suffering might not be a priority, that is.  Or it might be a contingent priority, of importance for a limited time, or in certain circumstances — but not the only thing to worry about.

The point is not to vilify Emanuel.  He has opposed euthanasia and physician-assisted suicide, so we should assume that he was as appalled by the actions of the chief physicians at MMC as others were.

But the Emanuelian sensibility is that the system in which physicians work is not meant to be dedicated to the relief of suffering alone.  Rather, it bears other duties as well:  a broad obligation to the public to promote health, and another obligation to contribute (through research) to the future of health care.

In this narrative, the physician is marshal of a campaign — not merely joined in a series of caring relationships with each of a number of patients, but commander of troops who have a long-term goal and territory to win.   By implication, the rights of patients might take second seat to the needs of the public, or to the desire to learn more about how to improve health in the future.  Patients shouldn’t be killed, this thinking goes, but they will have to understand that the prolongation of life is a luxury commodity to which physicians have the keys — and not everyone can have access.

The sense of the physician as a responsible manager, not merely a giver of care, connects with the utilitarian credo, “the greatest good for the greatest number” — a phrase that occurs three times in Fink’s piece as she strives to characterize the sensibility of MMC providers.

But the killings at MMC should, at the very least, make us ask whether it’s a good idea to have doctors making decisions about the greater good — or whether we want them to recognize individual persons above all.

Council of Advisors’ Flu Report: Does the Narrative Precede the Facts?

Reading this week’s report by the President’s Council of Advisors on Science and Technology (PCAST) on swine flu preparations…

The PCAST’s 2009-H1N1 Working Group has some illustrious names, and some great scientists.  So did the Advisory Committee on Immunization Practices which met in early March 1976, resolving to recommend mass immunization against swine flu.  And the parallels don’t end there.

This month’s PCAST report has some strengths.  One is its emphatic assertion that we are not looking at a reprise of the 1918 flu.  Another is its reminder that America must occupy a generous place in the world — offering advice or help to countries whose structures or resources don’t allow them to purchase vaccine or otherwise organize themselves for a bad flu outbreak.

But some of the report’s pieces just don’t quite connect up.

For one, the third chapter “Anticipating the Return of H1N1,” makes clear that the PCAST’s flu working group aimed to develop scenarios for a second wave of H1N1 cases in the U.S.   It set out to look at possibilities, not to make predictions.  “We emphasize again that the baseline scenario and the alternatives above are given as examples for planning purposes; they are not predictions of what will happen,” reads a caveat on p. 18.

Fair enough — but that begs two questions.

First, what’s the distinction between a scenario and a prediction?  Surely, when a Washington Post article is published within hours of the report’s release, with the lede that “Swine flu could infect half the U.S. population this fall and winter, hospitalizing up to 1.8 million people and causing as many as 90,000 deaths,” the PCAST is understood to have made a prediction — not just projected possibilities in an academic way.

Second, what predictions the PCAST makes!  By the day after the report was released CDC was expressing doubts about the estimate (sorry, “scenario”) of 90,000 deaths.  As VaccineEthics reports, CDC officials distanced themselves quickly — one telling Don McNeil, Jr. of the NY Times that “if the virus keeps behaving the way it is now, I don’t think anyone here [at CDC] expects anything like 90,000 deaths.”  And the estimate of 50% of Americans being infected by H1N1 would require much greater infectivity than we’ve seen so far.

The report doesn’t address the caution about the timing of H1N1 “waves” offered by Morens and Taubenberger in their recent JAMA article “Understanding Influenza Backward” (JAMA.2009; 302: 679-680) — PCAST’s scenarios simply assume that H1N1 will be back in the fall.  With WHO now explicit about a “second wave,” there will be even less impetus to (as Morens and Taubenberger suggest), look back.

The PCAST report also features a disconnect between the infectivity estimate and the mortality estimate.

It’s hard to explain how, if flu transmissibility really were to become high enough that a third to a half of all Americans were infected with H1N1 flu, virulence would remain so low that only 0.03% of the population would die of it.  If PCAST’s scenario of 150 million infections came to pass, then surely PCAST would want to caution authorities to watch for the development of high-virulence viral variants, either arising spontaneously within the genome of the current strain or through recombination with other circulating human or animal flu viruses.

Why bother to get people worked up over a horror scenario of 150 million infections if you aren’t going to remind flu watchers that your darkly viewed future  would allow for even further horrors in the form of new strains?

Narrative seems relevant here.  The PCAST report, its weak disclaimers about scenarios-not-predictions aside, sometimes seems to aim at crafting the leading narrative more than at practical planning.

The narrative, as told by PCAST, involves inevitable return of swine flu, America unprepared, special needs that can only be met by vaccine manufacturers and pharmaceutical companies, and vulnerable groups who need special administrative attention.

Here, too, the PCAST report is reminiscent of the 1976 swine flu episode.  The main effect of the meetings held by officials in the Department of Health, Education, and Welfare (the predecessor of today’s Health and Human Services) in March of ’76 was to create a narrative of inevitable return of a dreadful flu strain, America unprepared, and special needs that can only be met by immediate production of vaccine.

One lesson we learned from 1976 was the danger of allowing the narrative to precede the facts.