Philip Alcabes discusses myths of health, disease and risk.

AIDS Goes to Ground

This week, Donald McNeil, Jr. continues his praiseworthy efforts to highlight the sad reality of AIDS among the world’s poor.

In an article posted on the NY Times website Sunday (and published in the print edition Monday), McNeil reports on the inability of treatment programs in parts of Africa (this piece focuses on Uganda) to keep up with the need for AIDS medication as funding falls.   A very compelling video report accompanies the online version of the article.

An accompanying article explains the decline in funding, starting with the fall in the U.S. administration’s request on behalf of PEPFAR, as a Times graphic shows.

The number of new infections with the AIDS virus is estimated to be about 2 million per year now.  Some observers think annual incidence will rise as the population expands; even if not, the annual number of new AIDS virus infections is unlikely to fall in the near future, given present circumstances.

At the same time, the Times reports, anticipated PEPFAR funding is essentially flat to 2013, at $5 to $5.5 billion per year.  Financing for AIDS medications through the Global Fund to Fight AIDS, Tuberculosis and Malaria is in dire straits.

In terms of people, not dollars:  of the 33 million or so individuals who are infected with the AIDS virus worldwide, only about 4 million get regular antiretroviral therapy.

A few years ago, I wondered why,  after a quarter-century of AIDS and with the availability of effective treatment (at least in wealthy countries), Americans still didn’t see AIDS as an ordinary illness.

Now I have an answer:  we do see AIDS as ordinary… for poor countries.  To us, AIDS is no longer an epidemic problem worth our getting worked up over, or so it would seem judging by PEPFAR.  AIDS is like malaria, tuberculosis, or schistosomiasis.  It’s like diarrhea.  The Bill and Melinda Gates Foundation will put money into research or specific programs but we as a country will not need to care anymore.  We shift the funding away from the people in Africa, who are going to die young anyway, and put it into the hands of institutions (often, pharmaceutical companies) that can give us the promise of immunity from disaster.

The U.S. put less funding last year into PEPFAR than it did into preparations for H1N1 flu ($7.6 billion) or the school lunch program ($14.9 billion, according to the Robert Wood Johnson Foundation’s Center to Prevent Childhood Obesity), battleground in the war against childhood obesity.

Flu and obesity are epidemic.  They threaten American assumptions about ourselves.  “Epidemic” means:  crisis in our society.  Our epidemiologists say that malaria, diarrhea, and the other problems that collectively kill 20,000 or 25,000 people (mostly children) every day are endemic

“Endemic” means:  not our problem.

AIDS is endemic too, now.  It has gone to ground, gone the route of other once-dreaded infections that caused calamity in America and triggered heated debate (yellow fever, cholera, typhoid, TB) but have disappeared from our scene.  It’s their problem, now.

Transparency on Pandemics

How bad would it be for officials to be more open about how they make decisions on “preparedness”?  Should the public know more about how so-called experts forecast coming danger?  What’s the influence of media reports, like the coverage of last year’s flu outbreak which suggested, from day one, that it would resemble the 1918 flu?  How influential are the pharmaceutical companies and other vaccine makers?

At H5N1 yesterday, Crof picked up the U.K. government’s announcement that it would sponsor an independent review of decision making in response to H1N1 swine flu last year.  The U.K.’s Minister of Health, Liam Donaldson, told WebMD that it is

vital that we learn from what we have seen in this pandemic, for the sake of those who find themselves tackling … the next. It is likely to be worse.

Anybody who claims to know what the next pandemic will be like is asserting a special ability to read mysterious auguries that nobody else can see.  So it’s all the more shocking that Donaldson goes on to obfuscate his own failure to ask critical questions by claiming to have been using expert predictions:

Would it have been acceptable to hide and conceal statistical projections provided by statistical modellers of international standing, even though releasing them publicly caused alarm in some quarters?

As if the flak he had taken last July were for a perfectly rational assertion, not an apocalyptic forecast — when he said that there could be 65,000 deaths from flu in Britain.  Donaldson later dropped the forecast to 19,000 deaths.  (The actual number was less than 400 during 2009, 457 to date.)

And as if Donaldson had not made the same off-base prediction back in October 2005, when he said that there would be an avian flu outbreak in the U.K. with 50,000 deaths.  That was Donaldson’s excuse to use public money to purchase two and a half million doses of antivirals for stockpiling.

As if, that is, the problem were that people are just benightedly opposed to science — not genuinely concerned about malfeasance.

To its credit, the Parliamentary Assembly of the Council of Europe continues its investigation of decision making around the H1N1 outbreak response, holding a second public hearing on Monday.  Briefs of experts’ statements at the first hearing, back in January, are available here, and links to full statements and video are at the PACE site here.

Some of my friends and colleagues in public health wonder if this kind of questioning comes from misunderstanding the seriousness of flu and others are fearful that it will diminish the authority of public-health physicians.  A few, but too few, back the redoubtable Tom Jefferson, who has been questioning the reliance on flu vaccine for a long time.  Shouldn’t scientists — especially scientists — question authority?

Officials’ legitimacy ought to be diminished if they’re not serving the public.  Particularly when their decisions mean that private companies benefit from taxpayers’ monies.  Clearly, the transfer of funds is what happened with the H1N1 flu response.  Was it based on sound decision making?  More transparency would be a good thing.

Now that the Council of Europe and the U.K., are investigating official responses to H1N1 flu, could we please hear from the United States?

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.