HIV disclosure in the bedroom

In Ohio, as in many other states, it's a crime for an HIV+ person to engage in any sexual activity with another person (apart from kissing) without first disclosing his or her HIV status. It doesn't matter whether the sexual activity could result in HIV transmission (it doesn't have to be intercourse; use your imaginations, people), or whether the partners used protection, or even whether someone actually contracted HIV as a result of the encounter. At the end of the night (or day, if you're into that), sexual activity without HIV disclosure constitutes felonious assault, a rather serious felony of the second degree, according to the Ohio Revised Code 2903.11. A conviction carries a minimum prison term of two years and a maximum of eight years.

Is this law a good idea? Is it likely to reduce the risk of contracting HIV? No public health organization has supported such laws - which is one indication that they're based on fear and hysteria and not on a 'smart-on-crime' approach (i.e., does the law make us safer?).

Consider the law's perverse incentives: In the most basic case, an HIV+ person has sex with an HIV-negative person. They use a condom. The HIV+ person (perhaps in the heat of the moment) fails to disclosure his/her status. From the perspective of the law, it doesn't matter that they used protection or that (say) the other person walked away without contracting HIV. If the relationship turns sour from some reason, the HIV-negative person could easily call the police. The HIV+ person, unquestionably guilty, would go to prison for at least two years. With those potential consequences, the HIV+ person probably wouldn't say in the morning, "Hey, I screwed up, and even though we used a condom, you may want to get yourself tested just to be sure."

Who really suffers in that situation? The unsuspecting partner, if infected, could live for years without accessing life-prolonging treatment and could possibly pass along the virus to others.

On the other hand, the very existence of the law might encourage more people to disclose. Then their would-be partners could make more informed decisions about whether to have sex in the first place. The deterrence effect does bring a certain virtue to the law, but obviously its success depends on whether the law actually leads to greater disclosure. After all, how many people even know such a law exists? And studies indicate that people respond not to the severity of punishment, but to the likelihood. So I doubt an HIV+ person would disclose simply because there's a law on the books. They'd probably think: "It won't ever be an issue since we're using a condom."

Meanwhile, the intended result of the disclosure law - being aware of a partner's HIV status - can be achieved another way, without resorting to the criminal justice system: by educating people to ask. Asking, though sometimes awkward, is essential simply because some thoughtless people - law or no law - probably wouldn't disclose except if asked directly, "Do you have HIV/AIDS?"

No matter the answer, it's obvious one should use condoms. A fifth of people with HIV don't know they have the virus. So some might argue that they'd be wearing a condom regardless, that disclosure wouldn't change their choice to have sex, that the law then serves no purpose. But personally, if I learned that a potential partner had HIV, my risk-adverse self wouldn't bring her home. So yes, I absolutely support disclosure. Even with a condom, I would want to know.

But that doesn't mean I support a disclosure law. Making non-disclosure a crime, with severe penalties, might seem like a good idea until you consider that deterrence works only when people think they might get caught. In this instance, I don't think it would work well. Instead, criminalizing non-disclosure sets up incentives that undermine people's health. How many HIV+ people have woken up thinking, "I should have disclosed last night, but now there's no way I would."

Bottom line (and attempted maxim): It can be a bad idea to enforce a good idea.

Disney workers fast for health care

Cross-posted from WagingNonviolence.org.

A Minnie Mouse lookalike outside Disney’s Grand Californian Hotel striking with union local 681.

Eight Disneyland Hotel workers of UNITE HERE Local Union 11 in Anaheim, California, engaged in a week-long hunger strike to highlight their two-year dispute on health care and other labor issues with the Walt Disney Company. The eight workers ended their hunger strike on Tuesday, as five more began fasting.

The workers want to keep the health plan that their union provides (paid for in lieu of pay raises), while Disney proposes deducting health care costs from workers’ wages. Disney maintains that their plan would cost $250 a month per family, while the union estimates $500. Workers typically earn $11-13 an hour.

The Disney dispute mirrors an exacerbating national trend: Employment no longer guarantees satisfactory health care coverage. Between 2001 and 2007, insurance premiums rose 78% while wages rose 19%. As health care costs rise, employers drop benefits, contributing to the number of uninsured Americans.

One in six full-time workers, or 21 million people, were uninsured for all 12 months of 2008. Astoundingly, 45% of the nation’s 46 million uninsured actually worked full-time. And the percentage of Americans who receive health insurance through their employer has decreased from 64% in 2000 to 59% in 2008.

The Disney workers seem determined not to become another statistic.

Mentally ill kids, criminalized

Cross-posted from WagingNonviolence.org.

Mentally ill youth routinely suffer neglect and violence at juvenile prisons. At the Ohio River Valley Juvenile Correctional Facility in rural Ohio, reported the New York Times, a mentally ill teenager screamed obscenities into the padded walls of his solitary confinement cell. Such scenes are as tragic as they are commonplace.

Disturbingly, the number of mentally ill youth in juvenile prisons is expected to rise – not only in Ohio but in at least 31 other states where legislatures have slashed the budgets of already-strained mental health systems. These systems provide access to supported housing, medications, case management, counseling, diagnostic assessments, crisis intervention and crisis residential services.

I spoke with a psychiatrist at the same Ohio River Valley Juvenile Correctional Facility last fall while registering residents older than 17 to vote. He lamented that many of his patients would lose access to psychiatric care when they returned home because their parents couldn’t afford their medications.

A strong community mental health system would defray these treatment costs for families and thus help protect these kids from re-offending for lack of health care. Research indicates that model community-based mental health services reduce arrests, jail stays, and hospitalizations. Yet last month in its biennial budget, Ohio cut funding for such programs by an astounding 34%.

Before the budget vote, hundreds of advocates rallied on June 24 at the Ohio Statehouse in Columbus, warning that the proposed cuts would come at a heavy price for the state’s vulnerable citizens. Their placards proclaimed that “Treatment works, people recover.” Ohio legislators did not heed their call.

Predictably, parents, clinicians, and courts have nowhere else to turn but to the juvenile justice system. But that system cannot handle an influx of mentally ill youth. A class action lawsuit settled last year against the Ohio Department of Youth Services, S.H. v. Strickrath (pdf), revealed unconstitutional levels of mental health care, among other problems, in these so-called “new asylums.”

In this recession, legislators across the country have eliminated programs that support the poor and the mentally ill. These budget decisions are not inevitable; they are our choices, our responsibilities. When we treat sick kids as criminals, we don’t just set them up to fail but intimate, falsely, that the failure is their fault.

Criminalizing prenatal harm

In May, U.S. District Judge John Woodcock sentenced an HIV-positive pregnant woman to just enough days in prison to coincide with the end of her pregnancy. Both the prosecutor and defense attorney had recommended 114 days, which would have allowed Quinta Layin Tuleh, 28, of Cameroon, to leave prison with time served. But the judge sentenced her to 238 days.

She had been convicted of possessing fake immigration documents. Following her prison term, whatever its length, Tuleh will be deported. The judge said he would have sentenced her to time served if she had simply been pregnant. But because she could potentially transmit HIV to the fetus, he extended the sentence. Only in prison, he reasoned, would Tuleh have access to the antiretroviral therapy that would reduce the risk of HIV transmission from 25% to 1-2%.

Judge Woodcock explained from the bench:

“My obligation is to protect the public from further crimes of the defendant, and that public, it seems to me at this point, should likely include that child she’s carrying. I don’t think that the transfer of HIV to an unborn child is a crime technically under the law, but it is as direct and as likely as an ongoing assault. If I had — if I were to know conclusively that upon release from imprisonment a defendant was going to assault another person, I would act in a fashion to prevent that, and similar to an assault, causing grievous injury to a wholly innocent person. And so I think I have the obligation to do what I can to protect that person, when that person is born, from permanent and ongoing harm.”

The unusual sentence outraged some feminist and civil liberty advocates. Zachary Heiden of the Maine Civil Liberties Union said, “[J]ailing someone is punishment -- it is depriving them of liberty. That deprivation has to be justified, and illness or pregnancy is not justification for imprisonment.” Jessica Valenti of Feministing wrote, “I fail to see how Tuleh's inability (if that really is the case) to procure affordable, decent healthcare is an ‘assault’ against her fetus, rather than the system's assault of Tuleh.” These views, I think, while important, ignore the harm done by transmitting HIV to the child (avoidable as it is), as well as the mother's own interest in procuring prenatal care.

But how far should we go to prevent prenatal harm? Should the government intervene?

I’m discussing responsibilities to the 'unborn,' but I’m not talking about abortion. I'm interested in fetuses only to the extent that they'll become future people. If you're into rights-based language, Carson Strong, a University of Tennessee bioethicist, frames it well. He explains that a child's “birthright” is not “a right to be born” but “a right possessed by all people who are born,” namely the “right to be born free of serious impediments to their well-being” (p. 507). We have obligations to fetuses that will most likely become life - obligations we don't have to fetuses in general.

So I think the Judge Woodcock was thinking correctly about including the future child as a member of our community, even if legally speaking, the fetus is a non-item, and he over-reached judicial bounds by essentially sentencing Tuleh for assault and not an immigration violation. But couldn't the judge have found Tuleh prenatal care without depriving her of liberty? That would be ideal, but I don't think it's possible. Inmates have a right to health care due to their incarceration. The government does not have the authority to provide health care to others under its supervision (parole or probation) beyond Medicare and Medicaid, for which Tuleh would not qualify. So it appears that for Quinta Layin Tuleh and her future child, the choice was prison or HIV.

What then? It appears that the future child's best interest in being HIV-negative contradicts the future mother's interest (she did appeal the sentence) in not being incarcerated. But it’s not an either/or dichotomy of interests. Surely the mother would not want her child to suffer from HIV.

I was unsure of the judge’s decision, but I was disappointed by the reasoning of my usual allies: feminists and civil libertarians. Margo Kaplan of the Center for HIV Law and Policy, for example, accused the judge of “glibly equat[ing] being HIV-positive and pregnant with committing a crime.” Zachary Heiden of the Maine Civil Liberties Union also simplified the case: “Judges cannot lock a woman up simply because she is sick and pregnant.” Kaplan especially does not grapple honestly with the facts. The alleged offense was not being “sick and pregnant”; it was transmitting HIV.

Heiden, admirably, did offer a more nuanced view: “We are enormously sympathetic to the desire to ensure that Ms. Tuleh receives adequate health care, including prenatal care. Federal immigration law has developed in truly arbitrary and punitive ways. Here, even a federal judge could not get assurances that Ms. Tuleh would not be deported before the end of her pregnancy. He could not get assurances she would not have her medical care arbitrarily cut off. That is wrong.”

Jessica Valenti, like Kaplan, distorted the judge's reasoning and condemned the “paternalism, discrimination and misogyny that are so rife in this case.” But where is concern for the woman’s health care needs? Where is the concern for the HIV status and suffering of the future child? Wouldn't Tuleh also want her child to be HIV-negative? We have two awful options in this case: (1) the risk (moderate but not trivial) of transmitting HIV, or (2) the woman’s extra 124 days in prison (beyond the 114 days she had already served). Incarceration, even for four months, can be a degrading deprivation of liberty, but compared to HIV, it's not necessarily the worse option.

Margo Kaplan also exaggerates the case's ramifications. She wrote: “His reasoning essentially criminalizes being HIV-positive and allows the state to prison anyone with HIV simply because they have HIV and are capable of transmitting it to another. It classifies anyone with HIV as a threat to society who can be incarcerated at the whim of the state to protect public health.”

Not correct. The judge explicitly said he does not propose incarcerating any HIV-positive person who could transmit the virus. This case concerns an individual who by virtue of her immigration status would soon be deported and deprived of health care, and who could thereby transmit a life-ending illness to her future child. The judge’s use of incarceration does not apply to other HIV-positive people, or HIV-positive women, or even HIV-positive pregnant women. Poor citizens (update: and non-citizens) have access to immediate prenatal care through Medicaid. Tuleh did not.

True, Tuleh was treated as a fetal container, incarcerated for the sake of the fetus. Broadly speaking, that's worrisome and I share that feminist outrage. But freeing Tuleh would not have met obligations to the future life. It's just not possible, in Tuleh's case, to first do no harm.

The most outrageous piece, I think, was that Tuleh could not be guaranteed access to prenatal care except in prison. It’s cruel and undeserved – but not unusual – that incarceration fills this gap. We routinely address social and medical issues like substance abuse, mental illness, and poverty by incarcerating people. If the crime was "assault" or risking transmitting HIV to the child, the real perpetrator was not the woman - who had few options (if any) to access regular prenatal care - but a society that would deny medical care to the needy. The judge should throw all of us in prison.

Compassionate early release?

See this tragic case from the Columbus, Ohio, jail. (And oh, I hate when newspapers refer to prisoners, who are people too, ya know, by their departmental identification numbers.)

Inmate 8-27771 apparently had been bleeding into her brain for more than an hour by the time she arrived at Mount Carmel West. Diana Carles had lain face down on a dorm floor at the Franklin County jail for several minutes on Sept. 11 after a cocaine-induced seizure threw her from an upper bunk. ... The next day, as the 48-year-old Carles lay dying with a pink do-not-resuscitate band around her wrist, authorities hurried to court with paperwork. She was released from probation, and the guard standing watch at her bed was pulled, apparently so the sheriff's office wouldn't have to pay her medical bills. By the time the South Side woman died on Sept. 15 of blunt-force head trauma, Medicaid -- the federal and state health-care program for the poor -- was picking up the tab.

Was Diana Carles released because she was no longer dangerous or because she was expensive?

"If someone is dying and incapacitated, why would they need to be in prison?" asked Annette Chambers, chief of the prison system's Bureau of Medical Services. Allowing inmates who are not considered dangerous to spend their final days free from confinement not only is "humane but, collaterally, it does spare us some expenses," Chambers said.

You have to wonder... If the federal government made Medicaid dollars available to people confined to "public institutions" (jails, prisons, psychiatric facilities, and youth detention centers), would Diana Carles have been released? She was incarcerated for violating her probation (I'm guessing because of a drug offense, seeing how she suffered a cocaine-induced seizure), mandated after she was convicted in 2005 for receiving stolen property. When Medicaid, with dollars from the federal government, can pay for medical care, it seems quite smart for cash-strapped county jails to release expensive cases. But when Medicaid, as is most likely, won't pay, what then? Is "compassionate early release" potentially cruel, releasing sick people without insurance?

I think the government, at least legally, can do whatever it wants. It is obligated, thanks to the Supreme Court's interpretation of the Eighth Amendment in Estelle v. Gamble (1976), to provide medical care to prisoners. If it doesn't want to pay up, it can determine (well, it depends, but sometimes) that a particular prisoner poses no public danger and release that person. To ensure that prisoners aren't "dumped," perhaps we should require that prisoners agree to the release.

To have and to hold, in sickness...

Alright, I admit it: I read Post Secret. I find most of the postcards boring, weirdly confessional, or uncreative repeats, but every once in a while there's a real gem, like the postcard below.


Sad thing is: He's not alone. A 2008 poll by the Kaiser Family Foundation found that: "Among all adults, 7 percent say that, in the past year, they or someone in their household decided to get married in order to have access to their spouse’s health care benefits" (background pdf). That's another reason, certainly an odd one, to support single-payer Medicare-for-All...

On the flip-side, back when I was staffing a suicide prevention hotline, I spoke with a caller who decided (I think) not to kill himself because then his family would lose their health insurance.

"HIV is mostly about people doing stupid things"

HIV epidemiologist Elizabeth Pisani talks with the Guardian about her new book The Wisdom of Whores. Her thesis: "HIV is mostly about people doing stupid things in the pursuit of pleasure or money... We're just not allowed to say so." "Aids couldn't be about sex and drugs" because "governments don't like spending money on sex workers, gay men and drug addicts... So suddenly it had to be about development, and gender [innocent wives], and blah blah blah."

Her answer: Be more judgmental of people with HIV. Pisani: "Look, people are getting infected now because they're doing dumb things. But people do dumb things all the time. I do. We all do. Why is it OK to be judgmental about people who smoke? But not to be judgmental about people who take crystal meth and fuck 16 guys in a weekend without condoms?"

That makes me feel very uncomfortable because it's utterly unsympathetic and yet partially true. What I really dislike, though, is her suggestion that we should prioritize prevention over treatment because, she thinks, infected people brought it upon themselves. Not only is that demeaning, but it doesn't seem like a good way to get governments to focus on sex workers and drug addicts.

Kids aren't half-bad

I'm so happy. I just came from an awesome session with seven teens (aged 14-17) at Syracuse's runaway house for youth, where I've been twice before. We spent an hour in the living room talking about drug abuse. We brainstormed why people smoke even though they know it can kill them (peer pressure, addiction, lose weight); I shared some numbers on the health impacts of smoking cigarettes (male smokers are 23 times and female smokers 13 times more likely to die from lung cancer than non-smokers); and we talked about crack-cocaine and heroin and New York's Rockefeller drug laws, which impose harsh mandatory prison sentences for possessing relatively small amounts of drugs. I explained how the laws removed judicial discretion, so there's no telling the judge you're a good guy and deserve a second chance. Nope. Two ounces of crack gets you 15 years in prison.

What made me so happy was how much they really got into it. Everyone participated. We laughed, we had healthy tangents; we respected each other. It's odd because these kids actually have more fluency with drugs than I do, though I have the details. I was shocked at how quickly they trusted me - and I think now it's because I started by explaining how the odds were stacked against them (and not just because they come from broken homes). The Rockefeller drug laws are not only excessive, but the police target the Bronx over the suburbs, though whites do drugs at the same rates. Meanwhile, the tobacco companies spend billions to advertise to exactly their demographic (remember Joe Camel). Kids see almost 600 tobacco ads each year. At the one-hour mark when my session officially concluded, I told them they could go. They stayed. They were so into it that when one of them would get goofy, the others would tell him to shush. We're trying to learn here.

Update: The evening reassured me that working with kids wouldn't be horrible, if that's what I end up doing next. I had fun answering questions like, "Does cocaine make you grow armpit hair?" Answer: "No, you'll get that anyway." Or: "Are there cockroaches in prison?" Answer: "You can count it. And I mean the big kinds." I decided to leave out jokes about prison food.

More equal than others

When talking about health care reform, it may be silly to quote James Baldwin from his 1962 book on racial justice The Fire Next Time, but bear with me:

“People are not, for example, terribly anxious to be equal (equal, after all, to what and to whom?) but they love the idea of being superior. And this human truth has an especially grinding force here [in America], where identity is almost impossible to achieve and people are perpetually attempting to find their feet on the shifting sands of status” (88).

I want to stretch this "human truth" from racial justice to health care equity. Most people aren't especially concerned that millions of Americans have little health coverage. They care about the cost of their premiums, the choice of doctors, and the wait time on their surgeries. We litigate to demand access to unproven "developmental" therapies while 47 million Americans have to rely on emergency rooms. In 2006-07, 89.6 million spent a month or more uninsured.

So in advocating for single-payer, it's best to stress affordability and quality alongside universality. My friend Brendan points out that I spend too much time focusing on the uninsured. The insurance make up 16% of the population and a third of people under age 65, but they're just 4% of voters. And the insured aren't terribly eager to be altruistic when they're insecure about their own coverage: What if my employer drops benefits? What if my union renegotiates? You have to show it'll be better for them - and it will be. Besides providing equal access, Medicare-for-All will be cheaper, simpler, more comprehensive, and more transparent than private insurance. As Baldwin says, most people care more about superiority than equality. I have to say, though, it's strange to use capitalist reasoning to argue for government health insurance.

BTW, maybe there's a parallel somewhere in George Orwell's Animal Farm, where the ruling class of pigs declare that "All animals are equal, but some animals are more equal than others."

Whack TB!

I just came across this great computer game (hat tip: Ezra Klein) where you try to contain the spread of tuberculosis by hitting the infectious litter buggers with a giant hammer marked "medical research." Tuberculosis may not be as sexy as HIV/AIDS (for one thing, it's not sexually transmitted), but it kills nearly two million people a year and spreads rapidly through the air and by touch. So, one might imagine that it's a very bad idea to take trans-Atlantic flights while infected, especially with the multi-drug resistant variety - cough Andrew Speaker cough cough).

Play the game:

The game was developed by Families USA, the same group that determined that 89.6 million US residents (1 in 3 people under 65), lacked health insurance for at last one month during 2006-07.

I showed it to two professors here in the bioethics center:

"Seems... kind of child-like. Who's going to see this game and then do something about TB?"

"Maybe George Bush?"

A question for Obama

Yesterday ABC 7 News and Politico.com interviewed Hillary Clinton (here) and Barack Obama (here). They invited readers to submit questions. Below is my question. It wasn't asked.

Senator Obama,

In past debates, Senator Clinton has criticized you for your past statements [2003 Youtube video below] in support of single-payer universal health insurance. You have replied that implementing single-payer is not feasible in the current political environment. In what way is implementing single-payer not feasible? Do you anticipate that it will (in your view) ever become feasible?



By the way, here's Krugman on "Why not single-payer?" And another take.

Obama vs. Clinton

Gosh, there's so much to say about the election.

I want to talk about health care policies, but let me run through some preliminary items. I've not been shy about my preference for the black guy from Chicago's south side. I'll support Hillary Clinton if she wins the nomination, but I still dislike how she went negative on Obama and how Bill Clinton bashed Obama on invented grounds. Her campaign supported strong-arm tactics in Nevada, propagated unfounded assertions that Obama wanted a "trillion dollar tax increase on the middle class," and shamelessly distorted Obama's positions on Iraq and abortion. I also favor Obama because he spoke out on Iraq while Clinton was channeling Bush on the Senate floor (without even reading the National Intelligence Estimate). Obama current advisers opposed the war from the start. Clinton's current advisers did not, which says something about her foreign policy (not to mention her vote on Kyl-Lieberman). It's also odd that Clinton has been so unapologetic about her Iraq vote. Given this backdrop, I wonder what possessed her to stand and applaud Bush’s assertion during the State of the Union that there’s "no doubt" that "the surge is working."

As for the merely political, I think Obama is expanding the party base in ways Clinton simply can't. People who vote Democratic in one election are more likely to vote Democratic again. That matters. Obama is also a more effective campaigner and can help Democratic candidates in swing states. And the difference between 55 Democratic votes in the Senate and 51 Democratic votes is larger than any policy difference between Clinton and Obama. I also fear that the Clintons will unify the Republican base and hurt Democratic prospects. We have got to keep Congress blue.

On health care, there have been charges thrown about, especially on the question of mandates. Clinton requires that everyone purchase health insurance while Obama favors a mandate only for children. Clinton has charged repeatedly that Obama's plan would leave 15 million people uninsured. Obama has said that if there are indeed such a large number of uninsured people, he would consider imposing a mandate. Obama is weaker here. Would he require people who opted not to purchase health insurance to pay back-premiums when they eventually get sick? Neither has discussed how such a mandate would work, or how the state would penalize people who did not comply. Obama stresses that health coverage must be affordable before the government decides that it's mandatory. His campaign just released a mailer that says: "Hillary's health care plan forces everyone to buy insurance, even if you can't afford it." It concludes, "Is that the best we can do for people struggling with high health care costs?"

I'm not sure what to think about this whole debate. Hillary Clinton's plan makes intuitive sense. We don't want people gaming the system, betting that they won't get sick, while expecting public services if they ever do. But as Robert Reich says, the combination of purchasing pools, subsidies, easier enrollment, and mandatory coverage of children will cover all but 3% of the uninsured. Is it then better to "to require this 3% to buy insurance, or lure them into buying it with low rates and subsidies"? Meanwhile, 80 of the most respected public policy leaders have put forth the following statement which makes me think twice about the alleged deficiencies of Obama's plan:

"[W]ithout strong incentives to comply and harsh punishments for violation, [mandates] will have little impact on the number of uninsured Americans. Indeed, as the Massachusetts experience illustrates, non-compliance with mandates is a large problem, absent harsh sanctions. There is simply no factual basis for the assertion that an individual mandate, by itself, would result in coverage for 15 million more Americans than would robust efforts to make health care more affordable and accessible."

Return for a second to Obama's mailer. It asks: “Is that the best we can do?” Krugman attacks it as "Harry and Louise." But Obama asks a good question. Is it? Answer: No.

Neither Obama nor Clinton have had the guts to discuss the virtues of a single-payer, Medicare-for-all system. Clinton even had the audacity to criticize Obama for supporting one several years ago. And Obama's past statements, in my view, is why he lands on top. Anyone who's understood the genius of single-payer will ultimately return to it. Clinton is also financially beholden to the insurance industry (among other industries), which compromises her judgment. Obama, on the hand, refuses contributions from federal lobbyists. I'm convinced that Obama is a liberal at heart - see for example, his 2003 speech in support of single-payer. I frankly don't understand why any self-proclaimed progressive, Krugman included, would support a health care plan that forces (yes, forces is correct, even if it's supposedly a "right-wing talking point") citizens to purchase insurance from the private health insurance industry. Sure, the Clinton plan, like the Obama plan, would allow people to buy into a government plan, but there's no assurance right now that the government plan will be a cheaper alternative to big business.

In all of these discussions of health care policy, we haven't heard a peep from the insurance industry itself. Why aren't they criticizing such "bold" proposals for "reform"? They do after all prefer the status quo. The CEO of UnitedHealth made $124 million in 2004, while Coventry’s CEO made $25.4 million and Aetna’s CEO made $22.2 million. Not only are our health care dollars being diverted toward executives' yachts, but they're being diverted toward administrative costs, which now account for 31% of US health care spending. It doesn't have to be this way. Canada's national health program, which covers everyone, has an overhead of 1.3%. So why isn't the insurance industry concerned about the Democratic plans for reform?

Maybe because they know it's a whole lot better (for them) than it could be.

Condom teletubbies?

From the people who gave us the Kama Sutra, comes a new video that leads the way in promoting safer sex. See this 6.58-minute clip produced by the International HIV/AIDS Alliance in India with help from artists from the Nrityanjali Academy. The dancing condoms sing in Telugu in an appeal aimed at the estimated 60,000-70,000 sex workers in the southern Indian state of Andhra Pradesh. (Wouldn't it be great to see people dressed up as condoms on American television?) Besides the Indian video, be sure to check out this hilarious commercial from France.

TB on the loose

The latest jail-break, from the AP:

JOHANNESBURG, South Africa (AP) -- Forty nine highly infectious tuberculosis patients cut through wire fencing and broke out of a hospital isolation unit, apparently because they wanted to spend Christmas with their families. The mass escape highlights the problems faced by South Africa as it struggles to cope with an epidemic of virtually incurable TB that feeds off the AIDS virus and kills most of its victims. South Africa has an estimated 5.4 million people living with the AIDS virus.

Confinement for XDR-TB is at least six months.

I wonder who would want to spend Christmas with them. I mean, for Christ's sake!

The sardonic factor aside, the ethical issue may be troubling. It seems that forcibly incarcerating people for being sick is a gross violation of their rights. How can it be illegal or wrong to get sick?

But I am totally for it. As incarcerating them may be a violation of their rights, not incarcerating them is a violation of their responsibilities. We have certain duties when living with others (not killing them seems like an important one). Hopefully such patients will understand the risk and submit voluntarily to confinement. But even if they do not, the protection of the public is paramount. Though treating people without their consent is anathema in medicine, the coercive arm of the state enjoys broad support (consider, for example, mandatory taxation or even traffic laws). Some may cry "unjust paternalism" about such incarceration, but that's not quite right. The state isn't saving these patients from themselves. It's saving the rest of us from XDR-TB.

Path of least resistance

To social psychologists, it's obvious: decisions are not as cool and rational as sometimes portrayed by economists and philosophers. People are 'socialized' into the status quo, often failing to select a superior option that they themselves know to be better. They purchase fatty potato chips and microwave popcorn against their better judgment, simply because it's there, or because the benefits are immediate and the costs delayed. Such behavioral patterns are the subject of a recent solid article in the Journal of the American Medical Association: Loewenstein G, Brennan T, Volpp KG. Asymmetric Paternalism to Improve Health Behaviors. JAMA. 2007;298(20):2415-7. Here's one such behavioral pattern, sometimes called the default bias:

"[I]n New Jersey, the default on automobile insurance conferred a limited right to sue (with an option to pay extra to acquire a full right to sue), but only 20% of drivers chose to acquire this right. In contrast, in Pennsylvania, where the default was a full right to sue (with a discount if drivers switched to a limited right to sue), approximately 75% of drivers opted to retain the full right to sue. Likewise, employees save more when their employer automatically deposits a significant share of salary into a retirement plan than if the default is no contribution."

To direct people toward healthier behavior, we should exploit these behavioral biases to our advantage. Yes, that means being mildly paternalistic, in the sense of protecting people from themselves or at least their unprincipled actions. We should therefore strive to "make healthy behaviors more convenient (less immediately costly) and unhealthy behaviors less convenient (more immediately costly)." For example: "companies could offer free chilled bottles of water within easy access of employees or students, while soft drinks could be sold in less convenient locations farther away from employee work stations or offices." Other types of structural change would not be difficult to implement. Currently, patients have to remember (though they often don't) to schedule a colonoscopy every five years. Instead, colonoscopies would be automatically scheduled. The problem of missed colonoscopies is structural, not ideological.

What other biases are relevant? We tend to be biased toward the present, prioritizing immediate benefits over future costs. Unintended pregnancy and smoking cigarettes are obvious examples. Eating is another. We eat too much because the consequences (obesity, diabetes) come much later. Short of becoming time-travelers, there isn't much we can do, except...

"This aspect of present-biased preferences can be exploited by giving individuals choices between health-benefiting and health-harming behaviors before the time they will actually have to act on them. For example, individuals could choose to schedule gym visits and laboratory tests to monitor their cholesterol levels ahead of time and to voluntarily accept financial penalties for last-minute cancellation. Soft drink machines could be programmed with a personal identification code such that the machine cannot be accessed on the following day if an individual has not enabled his or her access or, conversely, if the individual has disabled his or her own access. An individual with a goal of losing weight is much more likely to be willing to deny himself or herself the pleasure of tomorrow's soft drink than today’s."

It's hardly radical, or even un-heard-of (ever work-out with a partner?), but it's brilliant.

Other policy changes are almost obvious: People are more likely to donate money to the Red Cross if collection bins are everywhere. Sex-crazed college students are more likely to use condoms if they're available in dormitories and not just at CVS. Citizens are more likely to have health insurance if people paid their premiums in their taxes and not as an additional expense on the side. And we could increase our organ supply if people had to opt-out instead of opt-in.

How about rising rates of obesity? We're moving in the wrong direction by making it less convenient to eat healthy. According to a hot-off-the-press study, nutritious foods now costs as much as $36.32 a day while junk foods cost just $3.52 a day (Monsivais P, Drewnowski A. The rising cost of low-energy-density foods. J Am Diet Assoc. 2007 Dec;107(12):2071-6). The authors conclude that these rising prices for healthier foods "may help explain why the highest rates of obesity continue to be observed among groups of limited economic means."

The lesson here? It's not about making bad decisions as much as having poor choices.

Thanksgiving stem cells

Two nights ago, a friend and I discussed new findings on stem cells that "could ease ethical concerns" (NYT). I think "religious concerns" would be more accurate. In any case, scientists report that they can create the equivalent of embryonic stem cells without having to destroy a fertilized cell in the process. This new "breakthrough" seems unnecessary to me, at least on an ethical level. But it seems highly important in allowing stem cell research to go forward. The news meant more to this friend of mine (who approved this post, by the way). You see, he's a Christian. He was saying that cells 10-14 days after conception should be protected because they were, at the very least, life-on-its-way. I was saying, as I've written before, that something that could become life does not, by that very fact, have a right to it.

The conversation eventually moved on to other, more seasonal, topics.

"Hmm," said the friend, "I've got to pick up a turkey tomorrow."

"You know what the funny thing about all this is?" I asked. "That I believe that turkeys deserve life, and you don't."

* * *

Below are two cartoons on stem cells research. I love the first because I like to think that religious people don't always agree with their spokespeople. The second cartoon, which I don't like, illustrates the great struggle that some religious people face in deciding where they stand on stem cell research. For that, I think it's worth posting. But I should add: It's not actually true that embryonic stem cells destroyed in research would have become cute little kids had they not been used. As long as I'm on the topic, see this other cartoon about stem cells and this political video by Michael J. Fox from the 2006 elections.

Caring for Ashley X

Two random questions: (1) what is 'personhood'? and (2) does it matter?

Consider the case of "Ashley X," a six-year-old girl from Washington State with profound mental impairment. She cannot think, speak, or form relationships. She cannot move on her own and lies still wherever she's put (say, on a pillow), hence her nickname, "pillow angel." Her parents faced a problem: As Ashley grew older, she grew bigger. In order to continue caring for Ashley at home, the parents ordered a hormonal treatment to attenuate her growth to 4'6''. Her parents also directed doctors to perform a hysterectomy so Ashley could avoid the discomfort of menstruating, and to remove her breast tissue to reduce the chance of abuse. The parents kept a blog and generously opened their case to media scrutiny. Ashley is now 10.

Some people have criticized the therapy. What, some ask, would Ashley herself have wanted?

Ordinarily in these situations, family and friends try to decide according to the patient's prior wishes. But Ashley never had capacity to begin with. As an alternate approach, decision-makers sometimes follow a "best interests standard." In that, we think about what any "reasonable" person would want. Mostly it works: Giving someone a blood transfusion even without consent is clearly in his or her "best interest." But this approach has been fraught with uncertainly: In our liberal tradition, we hesitate to make substantive claims about the good life. So instead of asking "what should be done?" we ask, "who should decide?" But the notion of "best interests" failed for Ashley X, as it did with Terri Schiavo, because people can't agree on what's best for someone with little or no mental capacity. It's also hard to say whether Ashley has any "interests" at all.

So what to do?

In a wonderful and reader-friendly essay on decision-making for children with severe neurological impairments, philosopher-doctor Carl Elliott sets up the problem this way:

"[I]n order to determine the moral status of severely damaged or limited human beings, we must ask ourselves whether or not they are persons. Why? Because we all know, more or less, what the moral status of a person is – that persons deserve a kind of respect, that they have rights, that we owe them duties that we do not owe animals or nonsentient life, and so on. If a neurologically damaged child (or for that matter, an anencephalic, a fetus, or an adult in a persistent vegetative state) is a person, then we must treat her morally as we treat other persons. But if she is not, then we are justified in treating her in other ways – say, as a being whose interests can be safely overridden for the interests of those who are persons."

--Attitudes, Souls, and Persons: Children with Severe Neurological Impairment. Mental Retardation & Developmental Disabilities Research Reviews. 9:16-20 (2003).

But having set up the debate, Elliott proceeds to point out the deficiencies in this line of reasoning. He thinks it’s futile and perhaps deceptive to delineate the elements of ‘personhood.” Simply describing the capacities of an animal, for example, is not sufficient to discern whether its life is "meaningful." Like "cruel" or "coward" or "bully," the word "person" contains both factual and evaluative elements. Personhood is an ethical evaluation, informed not only by what capacities we as humans exhibit, but by the meanings and societal attitudes associated with them. Elliott, writing four years before the Ashley story broke, doesn’t speak in the language of interests and rights. He thinks dignity and respect may be more helpful concepts (though he says they won’t suffice either). What I admire most about this essay is the inconclusiveness of the conclusion:

"We are the inheritors of a strong tradition of rights and equality that makes us reluctant to withhold treatment from a person on the grounds of her intelligence or disabilities. … [Yet] we recognize that these lives fail to meet the criteria by which we count our own lives as meaningful. We try to convince ourselves that we should protect vulnerable lives, but we cannot imagine this as a life we would want to continue living. We say all lives deserve respect, but our measure of the good life for ourselves does not include a life like this."

That divide speaks to me: the space being too judgmental and not being judgmental enough.

Better dead than deflowered

Better to contract HIV/AIDS than to spill his seed in a condom. Or so espouses the Catholic Church. Their opposition to contraception has contributed to millions of deaths worldwide (not to mention millions of unwanted babies). Latin America, home to 1.1 billion Catholics and 1.7 million people with HIV/AIDS is just one example. The region recorded 410,000 new cases in 2006, up from 320,000 new cases in 2004. Alberto Stella, UNAIDS coordinator for Honduras, Nicaragua and Costa Rica, considered why:

"In Latin America the use of the condom has been demonized, but if it was used during relations I guarantee the [HIV] epidemic would be eliminated in the region. ... The fact that young people become sexually active between the ages of 15 and 19 without any sexual education contributes to the spread of the virus, and evidence shows that abstinence does not work."

The Catholic News Agency, in reporting the news, insinuated that Alberto Stella put the blame on the Catholic Church to avoid admitting "the failure of the UN to stop the disease." So who's right in this blame game? To dissect: Two position underlie the Catholic view: (1) that abstinence is best, and (2) that 'abstinence education' can effectively teach people to be abstinent. The second claim is patently false. Numerous studies demonstrate that 'abstinence education' (I'm not relinquishing the scare quotes) isn't actually educating people. The first claim, by contrast, is ideological, and I won't dispute it. People have many views of the good life. The burden of liberalism is to construct a society where alternate views can flourish. So I respect that some people want to wait till marriage to breach that physical intimacy. But at risk of shedding my liberalism, I have no tolerance for those who impose their view on others (under threat of eternal damnation, of course) at the cost of real human lives. I will defend anybody's right to be wrong, but not to do wrong.

Note: previous post on religion's pernicious effect on women's health.

Two kinds of racism

This story is appalling but hardly surprising.

My young daughter needed to go to the toilet during a shopping trip in London during the last school holidays. While I stood next to the hand basins waiting for her, a woman came out of one of the cubicles and as she washed her hands, looked up and admonished me in no uncertain terms for the poor job I had done in keeping the toilets clean. Speechless, I watched her storm out. I am not an indolent cleaner; but I am Black, of African descent, and an Australian national. My daughter, having overheard, asked why I had not explained that I was a professor. But why do I have to? And more importantly, how do I explain to my 11-year-old that being part African, in countries like the UK, she needs to prepare for the fact that as a result of lazy cognitive stereotyping, not only will her colour be the primary “marker” by which she will be identified, but also that with that identity comes a whole range of prejudices about her status and ability? (emphasis added)

So writes Pascale Allotey in discussing the impact of ethnicity on access to medical care (The Lancet. Vol. 370, no. 9586, 11 August 2007). In her piece, Allotey tries to bridge two forms of racism: (1) racial prejudice (what most people take as constituting "racism") and (2) the more subtle, more entrenched, more noxious structural form - a potent mix of poverty, poor health, and lack of political power. Sometimes it's hard to discern a connection between the two kinds. People of any race can harbor prejudice, while "structural racism" tends to afflict only certain groups. I wonder if the connection is overstated, seeing how people emphasize the first kind in order to spice up the second. As a professor, Allotey suffers most directly from the first kind, not from the second. Racial prejudice garners more media attention simply because it's easier to understand. Type #2, by contrast, is a complicated concoction of race and class.

For a statistical account of structural racism, see this widely-cited article that makes John Edwards courageous exposition on "two Americas" seem weak: Murray CJL, et al. (2006) Eight Americas: Investigating Mortality Disparities across Races, Counties, and Race-Counties in the United States. PLoS Med 3(9): e260. The authors "estimated life expectancy, the risk of mortality from specific diseases, health insurance, and health-care utilization for the eight Americas," and found that "[t]he gap between the highest and lowest life expectancies for race-county combinations in the United States is over 35 y." Wow, indeed.

Update: An example of racial prejudice might be: black men are more likely than white men to receive a harsher sentence for the same crime. An example of structural racism might be: black men are more likely than white men to engage in crime in the first place.

Health insurance myths

In his NYT column today, Paul Krugman debunks the hip replacement myth:

[I]t’s true that Americans get hip replacements faster than Canadians. But there’s a funny thing about that example, which is used constantly as an argument for the superiority of private health insurance over a government-run system: the large majority of hip replacements in the United States are paid for by, um, Medicare.

That’s right: the hip-replacement gap is actually a comparison of two government health insurance systems. American Medicare has shorter waits than Canadian Medicare (yes, that’s what they call their system) because it has more lavish funding — end of story. The alleged virtues of private insurance have nothing to do with it.

Here (via the White House) is what President Bush said about universal coverage last week:

“I mean, people have access to health care in America. After all, you just go to an emergency room.”

Like this one, Mr. Bush?