Rather than simply continuing to pay ever-higher medical claims to care for its diabetic customers, UnitedHealth is paying the Y.M.C.A. and pharmacists to keep people healthier. The result, they hope, will be lower costs and lower premiums for everyone.

The insurer will announce on Wednesday that it will work with Y “lifestyle coaches” in seven cities to help people who are at risk for diabetes lower their odds of developing the disease by losing just a modest amount of weight. The Y already offers a program that has had success in clinical tests of such efforts, in 16-week programs that help people learn to eat better and exercise.

The announcement is planned for a conference on diabetes being held this week in Kansas City, Mo., by the federal Centers for Disease Control and Prevention, which will also discuss a complementary effort by the C.D.C. to finance the Y programs in 10 additional locations around the country. The C.D.C. locations have not yet been chosen.

The UnitedHealth effort is an example of the new role health insurers may take on after enactment of the federal health care law, as insurance companies are forced to cover people regardless of their medical condition. It is also a response to a growing demand by employers that insurers do more to manage health costs, beyond collecting premiums and paying doctors.

An estimated 25 million people in this country have Type 2 diabetes, the most common form of the disease, which generally develops in adults as a result of obesity and poor diet. An additional 60 million people — one in four adults — are considered pre-diabetic and at high risk for developing the disease.

By one estimate, the cost of treating both diabetes and pre-diabetes exceeds $200 billion a year.

“This is an enormous problem,” said Dr. Ann Albright, who is overseeing the C.D.C.’s diabetes efforts. “Our data tells us it’s getting worse.”

In a related effort aimed at people who are already diabetic, UnitedHealth plans to pay Walgreens pharmacists in the same seven cities to help teach people to better manage their conditions. The insurer says it hopes to expand the program to other pharmacy chains interested in providing education and counseling to diabetic individuals.

UnitedHealth plans to introduce the program in Cincinnati, Columbus and Dayton, Ohio, and in Indianapolis, Minneapolis, Phoenix and Tucson. It will be available at no cost to participants, and will be open to adults who are enrolled in health plans the company offers through employers.

People eligible for the program in several of those cities could include some employees of General Electric, which has 304,000 workers worldwide. The company praised the program for looking beyond the 15 minutes that a patient typically spends with a doctor during an office visit, discussing a drug or treatment.

Instead of focusing on paying for health care, said Dr. Robert Galvin, G.E.’s chief medical officer, “this is very emblematic of thinking about health.”

UnitedHealth expects eventually to offer the program through other insurers and to people enrolled in its private Medicare and Medicaid plans. One insurer, Medica, a large Minneapolis health plan, has already signed on for its 600,000 members in Minnesota.

UnitedHealth said it was investing tens of millions of dollars in this initiative, helping the Y develop an online curriculum and collect the data necessary to track the progress of the people enrolled in the program. The company says it will use its own data about the health of its members to identify people who are pre-diabetic and may not know it — and then tell them about the program.

“This will absolutely pay for itself,” said Dr. Deneen Vojta, a senior executive at UnitedHealth.

Both UnitedHealth and the C.D.C. want to expand on the success of a clinically proved program that has been offered by the Y. Based on evidence drawn from that program, people who are pre-diabetic and lose just 5 percent of their body weight can reduce their chances of developing the disease by almost 60 percent. The C.D.C. is also considering ways to encourage organizations beside the Y to develop similar programs.

In the Y programs, UnitedHealth will pay on the basis of how many people participate as well as how much weight the people in the programs lose. After undergoing a more intensive 16-week course, individuals will participate in a yearlong maintenance course.

“We have the experience,” said Neil Nicoll, the chief executive of the Y.M.C.A. of the USA, a federation of 2,700 Ys across the country whose goal is to develop more programs related to chronic disease like diabetes. “We’ve proven the model. We’ve proven that we can do it at substantially less cost.”

For Marilyn Schenetzke, a retired 67-year-old who lives in Carmel, a suburb of Indianapolis, the Y course succeeded where other weight-loss programs had failed. At 5-foot-6, Ms. Schenetzke weighed 227 pounds. She had developed gestational diabetes, a temporary condition, when she was pregnant. And her grandfather was diabetic. In reading about diabetes, she realized she was at risk for developing the Type 2 version.

And yet, she said, “my doctors had never said one word about it.”

Last November, she began attending the weekly one-hour classes at the Y. The coach focused on helping the class learn to make better choices about what they ate and to devote at least two-and-a-half hours a week to exercise.

Family Court judge Paul Cronin found that the performance of a hysterectomy on the child, identified only as Angela, was “in the child’s best interests”. Angela has Rett syndrome, making her profoundly disabled and unable to talk or use sign language. The court, sitting in Brisbane, heard Angela acted in a similar way to a three-month-old baby. She has to be fed and cared for and has no bladder control.

Since she was born, Angela – whose parents married in South America and came to Australia in 1991 – has had epileptic seizures but they are now under control through medication. However, while the epilepsy is controlled, seizures can occur when she has a heavy menstrual period, which have been happening since she was nine years old.

 The family was told by experts in March 2009 the recommended treatment would be a hysterectomy, the court heard. But Queensland Health – acting on legal advice – said because of the irreversible nature of the procedure it could not be conducted without a court order.

Justice Cronin said in his judgment, publicly released on Tuesday, the procedure was “urgent and necessary”. “Angela is never going to have the benefits of a normal teenage and adult life,” the judgment read. “A fundamental consideration is … the risks to Angela’s life as well as her general health.”

Mark Pattison, from the National Council on Intellectual Disability, said the decision – which followed a High Court ruling in 1992 – showed the system was working. Mr Pattison said the High Court found the Family Court was the best jurisdiction to determine such matters. “It went into a jurisdiction that has some sensitivity to family matters, and from our point of view it was a very good place to put it,” Mr Pattison told AAP. “You have an independent umpire, they consulted with the family and the obstetrician and made the best decision.” But researcher Dr Leanne Dowse, from the University of NSW, said the decision appeared to breach international human rights conventions. “Australia became a signatory to the UN convention on the rights of persons with disabilities in July 2008,” Dr Dowse told ABC Radio. “That convention says that individuals with a disability have a right to respect for his or her physical integrity. “That sort of idea means that the first position is to protect an individual from these sorts of things.” But Mr Pattison said the overriding human right in the case was the “dignity of the person”. He said it would not have been an easy process for the family. “These families have been through a lot, and done all they can, and throw their hands up and say `What more can I do?’,” he said. “I think people should give them a bit of a break.” © 2010 AAP

Rom Houben, trapped in his paralysed body after a car crash, described his real-life nightmare as he screamed to doctors that he could hear them – but could make no sound.

‘I screamed, but there was nothing to hear,’ said Mr Houben, now 46, who doctors thought was in a persistent vegatative state. ‘I dreamed myself away,’ he added, tapping his tale out with the aid of a computer.

Doctors used a range of coma tests before reluctantly concluding that his consciousness was ‘extinct’.

But three years ago, new hi-tech scans showed his brain was still functioning almost completely normally. Mr Houben described the moment as ‘my second birth’. Therapy has since allowed him to tap out messages on a computer screen.

Mr Houben said: ‘All that time I just literally dreamed of a better life. Frustration is too small a word to describe what I felt.’ His case has only just been revealed in a scientific paper released by the man who ’saved’ him, top neurological expert Dr Steven Laureys.

‘Medical advances caught up with him,’ said Dr Laureys, who believes there may be many similar cases of false comas around the world. The disclosure will also renew the right-to-die debate over whether people in comas are truly unconscious.

Mr Houben, a former martial arts enthusiast, was paralysed in 1983. Doctors in Zolder, Belgium, used the internationally accepted Glasgow Coma Scale to assess his eye, verbal and motor responses. But each time he was graded incorrectly.

Only a re-evaluation of his case at the University of Liege discovered that he had lost control of his body but was still fully aware of what was happening.

He is never likely to leave hospital, but as well as his computer he now has a special device above his bed which lets him read books while lying down.

Mr Houben said: ‘I shall never forget the day when they discovered what was truly wrong with me – it was my second birth.

‘I want to read, talk with my friends via the computer and enjoy my life now that people know I am not dead.’

Dr Laureys’s new study claims that patients classed as in a vegetative state are often misdiagnosed.

‘Anyone who bears the stamp of “unconscious” just one time hardly ever gets rid of it again,’ he said.

The doctor, who leads the Coma Science Group and Department of Neurology at Liege University Hospital, found Mr Houben’s brain was still working by using state-of-the-art imaging.

He plans to use the case to highlight what he considers may be similar examples around the world.

Dr Laureys said: ‘In Germany alone each year some 100,000 people suffer from severe traumatic brain injury.

‘About 20,000 are followed by a coma of three weeks or longer. Some of them die, others regain health.

‘But an estimated 3,000 to 5,000 people a year remain trapped in an intermediate stage – they go on living without ever coming back again.’

Supporters of euthanasia and assisted suicide argue that people who have lain in persistent vegetative states for years should be given the opportunity to have crucial medical support withdrawn because of the ‘indignity’ of their condition.

But there have been several cases in which people judged to be in vegetative states or deep comas have recovered.

Twenty years ago, Carrie Coons, an 86-year-old from New York, regained consciousness after a year, took small amounts of food by mouth and engaged in conversation.

Only days before her recovery, a judge had granted her family’s request for the removal of the feeding tube which had been keeping her alive.

In the UK in 1993, doctors switched off the life support system keeping alive Tony Bland, a 22-year- old who had been in a coma for three years following the Hillsborough disaster.

Dr Laureys was not available for comment yesterday and it is not clear why he thought Mr Houben should have the hi-tech screening when so many years had passed.

[BBC] The advice allows food and fluids to be withdrawn from patients, who are then continuously sedated, if they are judged to be close to death.

In a letter to the Daily Telegraph the six doctors and campaigners criticise a “tick-box approach” to care. The government says the guidance helps deliver high quality care for people.

Among the signatories on the letter are PH Millard, Emeritus Professor of Geriatrics at the University of London and Dr Anthony Cole, chairman of the Medical Ethics Committee.

Dr Peter Hargreaves, a consultant in palliative medicine, Dr David Hill, fellow of the Faculty of Anaesthetists of the Royal College of Surgeons, Dr Elizabeth Negus, a lecturer at Barking University, and Dowager Lady Salisbury, chairman of Choose Life, were the other signatories.

Their letter says the new treatment pattern of palliative care, based on experience at a Liverpool hospice is being rolled out into hospitals and nursing homes.

“If you tick all the right boxes in the Liverpool Care Pathway, the inevitable outcome of the consequent treatment is death,” they write.

“As a result, a nationwide wave of discontent is building up, as family and friends witness the denial of fluids and food to patients.”

A Department of Health spokesman said they are investing £286 million over the two years to help improve end of life care.

He added: “The Liverpool Care Pathway is an established and recommended tool that provides clinicians with an evidence-based framework to help delivery of high quality care for people at the end of their lives.

“It has been recommended in the Supportive and Palliative Care Guidance issued by the National Institute for Health and Clinical Excellence.”

[NYT] PETER SINGER – You have advanced kidney cancer. It will kill you, probably in the next year or two. A drug called Sutent slows the spread of the cancer and may give you an extra six months, but at a cost of $54,000. Is a few more months worth that much?

The costs of the current health care system are becoming increasingly clear, and public sentiment for a more systematic approach may be growing. We’d like to know what you think about the prospect of rationing.

If you can afford it, you probably would pay that much, or more, to live longer, even if your quality of life wasn’t going to be good. But suppose it’s not you with the cancer but a stranger covered by your health-insurance fund. If the insurer provides this man — and everyone else like him — with Sutent, your premiums will increase. Do you still think the drug is a good value? Suppose the treatment cost a million dollars. Would it be worth it then? Ten million? Is there any limit to how much you would want your insurer to pay for a drug that adds six months to someone’s life? If there is any point at which you say, “No, an extra six months isn’t worth that much,” then you think that health care should be rationed.

In the current U.S. debate over health care reform, “rationing” has become a dirty word. Meeting last month with five governors, President Obama urged them to avoid using the term, apparently for fear of evoking the hostile response that sank the Clintons’ attempt to achieve reform. In a Wall Street Journal op-ed published at the end of last year with the headline “Obama Will Ration Your Health Care,” Sally Pipes, C.E.O. of the conservative Pacific Research Institute, described how in Britain the national health service does not pay for drugs that are regarded as not offering good value for money, and added, “Americans will not put up with such limits, nor will our elected representatives.” And the Democratic chair of the Senate Finance Committee, Senator Max Baucus, told CNSNews in April, “There is no rationing of health care at all” in the proposed reform.

Remember the joke about the man who asks a woman if she would have sex with him for a million dollars? She reflects for a few moments and then answers that she would. “So,” he says, “would you have sex with me for $50?” Indignantly, she exclaims, “What kind of a woman do you think I am?” He replies: “We’ve already established that. Now we’re just haggling about the price.” The man’s response implies that if a woman will sell herself at any price, she is a prostitute. The way we regard rationing in health care seems to rest on a similar assumption, that it’s immoral to apply monetary considerations to saving lives — but is that stance tenable?

Health care is a scarce resource, and all scarce resources are rationed in one way or another. In the United States, most health care is privately financed, and so most rationing is by price: you get what you, or your employer, can afford to insure you for. But our current system of employer-financed health insurance exists only because the federal government encouraged it by making the premiums tax deductible. That is, in effect, a more than $200 billion government subsidy for health care. In the public sector, primarily Medicare, Medicaid and hospital emergency rooms, health care is rationed by long waits, high patient copayment requirements, low payments to doctors that discourage some from serving public patients and limits on payments to hospitals.

The case for explicit health care rationing in the United States starts with the difficulty of thinking of any other way in which we can continue to provide adequate health care to people on Medicaid and Medicare, let alone extend coverage to those who do not now have it. Health-insurance premiums have more than doubled in a decade, rising four times faster than wages. In May, Medicare’s trustees warned that the program’s biggest fund is heading for insolvency in just eight years. Health care now absorbs about one dollar in every six the nation spends, a figure that far exceeds the share spent by any other nation. According to the Congressional Budget Office, it is on track to double by 2035.

President Obama has said plainly that America’s health care system is broken. It is, he has said, by far the most significant driver of America’s long-term debt and deficits. It is hard to see how the nation as a whole can remain competitive if in 26 years we are spending nearly a third of what we earn on health care, while other industrialized nations are spending far less but achieving health outcomes as good as, or better than, ours.

Rationing health care means getting value for the billions we are spending by setting limits on which treatments should be paid for from the public purse. If we ration we won’t be writing blank checks to pharmaceutical companies for their patented drugs, nor paying for whatever procedures doctors choose to recommend. When public funds subsidize health care or provide it directly, it is crazy not to try to get value for money. The debate over health care reform in the United States should start from the premise that some form of health care rationing is both inescapable and desirable. Then we can ask, What is the best way to do it?

Last year Britain’s National Institute for Health and Clinical Excellence gave a preliminary recommendation that the National Health Service should not offer Sutent for advanced kidney cancer. The institute, generally known as NICE, is a government-financed but independently run organization set up to provide national guidance on promoting good health and treating illness. The decision on Sutent did not, at first glance, appear difficult. NICE had set a general limit of £30,000, or about $49,000, on the cost of extending life for a year. Sutent, when used for advanced kidney cancer, cost more than that, and research suggested it offered only about six months extra life. But the British media leapt on the theme of penny-pinching bureaucrats sentencing sick people to death. The issue was then picked up by the U.S. news media and by those lobbying against health care reform in the United States. An article in The New York Times last December featured Bruce Hardy, a kidney-cancer patient whose wife, Joy, said, “It’s hard to know that there is something out there that could help but they’re saying you can’t have it because of cost.” Then she asked the classic question: “What price is life?”

Last November, Bloomberg News focused on Jack Rosser, who was 57 at the time and whose doctor had told him that with Sutent he might live long enough to see his 1-year-old daughter, Emma, enter primary school. Rosser’s wife, Jenny, is quoted as saying: “It’s immoral. They are sentencing him to die.” In the conservative monthly The American Spectator, David Catron, a health care consultant, describes Rosser as “one of NICE’s many victims” and writes that NICE “regularly hands down death sentences to gravely ill patients.” Linking the British system with Democratic proposals for reforming health care in the United States, Catron asked whether we really deserve a health care system in which “soulless bureaucrats arbitrarily put a dollar value on our lives.” (In March, NICE issued a final ruling on Sutent. Because of how few patients need the drug and because of special end-of-life considerations, it recommended that the drug be provided by the National Health Service to patients with advanced kidney cancer.

The costs of the current health care system are becoming increasingly clear, and public sentiment for a more systematic approach may be growing. We’d like to know what you think about the prospect of rationing.

There’s no doubt that it’s tough — politically, emotionally and ethically — to make a decision that means that someone will die sooner than they would have if the decision had gone the other way. But if the stories of Bruce Hardy and Jack Rosser lead us to think badly of the British system of rationing health care, we should remind ourselves that the U.S. system also results in people going without life-saving treatment — it just does so less visibly. Pharmaceutical manufacturers often charge much more for drugs in the United States than they charge for the same drugs in Britain, where they know that a higher price would put the drug outside the cost-effectiveness limits set by NICE. American patients, even if they are covered by Medicare or Medicaid, often cannot afford the copayments for drugs. That’s rationing too, by ability to pay.

Dr. Art Kellermann, associate dean for public policy at Emory School of Medicine in Atlanta, recently wrote of a woman who came into his emergency room in critical condition because a blood vessel had burst in her brain. She was uninsured and had chosen to buy food for her children instead of spending money on her blood-pressure medicine. In the emergency room, she received excellent high-tech medical care, but by the time she got there, it was too late to save her.

A New York Times report on the high costs of some drugs illustrates the problem. Chuck Stauffer, an Oregon farmer, found that his prescription-drug insurance left him to pay $5,500 for his first 42 days of Temodar, a drug used to treat brain tumors, and $1,700 a month after that. For Medicare patients drug costs can be even higher, because Medicare can require a copayment of 25 percent of the cost of the drug. For Gleevec, a drug that is effective against some forms of leukemia and some gastrointestinal tumors, that one-quarter of the cost can run to $40,000 a year.

In Britain, everyone has health insurance. In the U.S., some 45 million do not, and nor are they entitled to any health care at all, unless they can get themselves to an emergency room. Hospitals are prohibited from turning away anyone who will be endangered by being refused treatment. But even in emergency rooms, people without health insurance may receive less health care than those with insurance. Joseph Doyle, a professor of economics at the Sloan School of Management at M.I.T., studied the records of people in Wisconsin who were injured in severe automobile accidents and had no choice but to go to the hospital. He estimated that those who had no health insurance received 20 percent less care and had a death rate 37 percent higher than those with health insurance. This difference held up even when those without health insurance were compared with those without automobile insurance, and with those on Medicaid — groups with whom they share some characteristics that might affect treatment. The lack of insurance seems to be what caused the greater number of deaths.

When the media feature someone like Bruce Hardy or Jack Rosser, we readily relate to individuals who are harmed by a government agency’s decision to limit the cost of health care. But we tend not to hear about — and thus don’t identify with — the particular individuals who die in emergency rooms because they have no health insurance. This “identifiable victim” effect, well documented by psychologists, creates a dangerous bias in our thinking. Doyle’s figures suggest that if those Wisconsin accident victims without health insurance had received equivalent care to those with it, the additional health care would have cost about $220,000 for each life saved. Those who died were on average around 30 years old and could have been expected to live for at least another 40 years; this means that had they survived their accidents, the cost per extra year of life would have been no more than $5,500 — a small fraction of the $49,000 that NICE recommends the British National Health Service should be ready to pay to give a patient an extra year of life. If the U.S. system spent less on expensive treatments for those who, with or without the drugs, have at most a few months to live, it would be better able to save the lives of more people who, if they get the treatment they need, might live for several decades.

Estimates of the number of U.S. deaths caused annually by the absence of universal health insurance go as high as 20,000. One study concluded that in the age group 55 to 64 alone, more than 13,000 extra deaths a year may be attributed to the lack of insurance coverage. But the estimates vary because Americans without health insurance are more likely, for example, to smoke than Americans with health insurance, and sorting out the role that the lack of insurance plays is difficult. Richard Kronick, a professor at the School of Medicine at the University of California, San Diego, cautiously concludes from his own study that there is little evidence to suggest that extending health insurance to all Americans would have a large effect on the number of deaths in the United States. That doesn’t mean that it wouldn’t; we simply don’t know if it would.

The costs of the current health care system are becoming increasingly clear, and public sentiment for a more systematic approach may be growing. We’d like to know what you think about the prospect of rationing.

In any case, it isn’t only uninsured Americans who can’t afford treatment. President Obama has spoken about his mother, who died from ovarian cancer in 1995. The president said that in the last weeks of her life, his mother “was spending too much time worrying about whether her health insurance would cover her bills” — an experience, the president went on to say, that his mother shared with millions of other Americans. It is also an experience more common in the United States than in other developed countries. A recent Commonwealth Fund study led by Cathy Schoen and Robin Osborn surveyed adults with chronic illness in Australia, Canada, France, Germany, the Netherlands, New Zealand, the United Kingdom and the United States. Far more Americans reported forgoing health care because of cost. More than half (54 percent) reported not filling a prescription, not visiting a doctor when sick or not getting recommended care. In comparison, in the United Kingdom the figure was 13 percent, and in the Netherlands, only 7 percent. Even among Americans with insurance, 43 percent reported that cost was a problem that had limited the treatment they received. According to a 2007 study led by David Himmelstein, more than 60 percent of all bankruptcies are related to illness, with many of these specifically caused by medical bills, even among those who have health insurance. In Canada the incidence of bankruptcy related to illness is much lower.

When a Washington Post journalist asked Daniel Zemel, a Washington rabbi, what he thought about federal agencies putting a dollar value on human life, the rabbi cited a Jewish teaching explaining that if you put one human life on one side of a scale, and you put the rest of the world on the other side, the scale is balanced equally. Perhaps that is how those who resist health care rationing think. But we already put a dollar value on human life. If the Department of Transportation, for example, followed rabbinical teachings it would exhaust its entire budget on road safety. Fortunately the department sets a limit on how much it is willing to pay to save one human life. In 2008 that limit was $5.8 million. Other government agencies do the same. Last year the Consumer Product Safety Commission considered a proposal to make mattresses less likely to catch fire. Information from the industry suggested that the new standard would cost $343 million to implement, but the Consumer Product Safety Commission calculated that it would save 270 lives a year — and since it valued a human life at around $5 million, that made the new standard a good value. If we are going to have consumer-safety regulation at all, we need some idea of how much safety is worth buying. Like health care bureaucrats, consumer-safety bureaucrats sometimes decide that saving a human life is not worth the expense. Twenty years ago, the National Research Council, an arm of the National Academy of Sciences, examined a proposal for installing seat belts in all school buses. It estimated that doing so would save, on average, one life per year, at a cost of $40 million. After that, support for the proposal faded away. So why is it that those who accept that we put a price on life when it comes to consumer safety refuse to accept it when it comes to health care?

Of course, it’s one thing to accept that there’s a limit to how much we should spend to save a human life, and another to set that limit. The dollar value that bureaucrats place on a generic human life is intended to reflect social values, as revealed in our behavior. It is the answer to the question “How much are you willing to pay to save your life?” — except that, of course, if you asked that question of people who were facing death, they would be prepared to pay almost anything to save their lives. So instead, economists note how much people are prepared to pay to reduce the risk that they will die. How much will people pay for air bags in a car, for instance? Once you know how much they will pay for a specified reduction in risk, you multiply the amount that people are willing to pay by how much the risk has been reduced, and then you know, or so the theory goes, what value people place on their lives. Suppose that there is a 1 in 100,000 chance that an air bag in my car will save my life, and that I would pay $50 — but no more than that — for an air bag. Then it looks as if I value my life at $50 x 100,000, or $5 million.

The theory sounds good, but in practice it has problems. We are not good at taking account of differences between very small risks, so if we are asked how much we would pay to reduce a risk of dying from 1 in 1,000,000 to 1 in 10,000,000, we may give the same answer as we would if asked how much we would pay to reduce the risk from 1 in 500,000 to 1 in 10,000,000. Hence multiplying what we would pay to reduce the risk of death by the reduction in risk lends an apparent mathematical precision to the outcome of the calculation — the supposed value of a human life — that our intuitive responses to the questions cannot support. Nevertheless this approach to setting a value on a human life is at least closer to what we really believe — and to what we should believe — than dramatic pronouncements about the infinite value of every human life, or the suggestion that we cannot distinguish between the value of a single human life and the value of a million human lives, or even of the rest of the world. Though such feel-good claims may have some symbolic value in particular circumstances, to take them seriously and apply them — for instance, by leaving it to chance whether we save one life or a billion — would be deeply unethical.

Governments implicitly place a dollar value on a human life when they decide how much is to be spent on health care programs and how much on other public goods that are not directed toward saving lives. The task of health care bureaucrats is then to get the best value for the resources they have been allocated. It is the familiar comparative exercise of getting the most bang for your buck. Sometimes that can be relatively easy to decide. If two drugs offer the same benefits and have similar risks of side effects, but one is much more expensive than the other, only the cheaper one should be provided by the public health care program. That the benefits and the risks of side effects are similar is a scientific matter for experts to decide after calling for submissions and examining them. That is the bread-and-butter work of units like NICE. But the benefits may vary in ways that defy straightforward comparison. We need a common unit for measuring the goods achieved by health care. Since we are talking about comparing different goods, the choice of unit is not merely a scientific or economic question but an ethical one.

The costs of the current health care system are becoming increasingly clear, and public sentiment for a more systematic approach may be growing. We’d like to know what you think about the prospect of rationing.

As a first take, we might say that the good achieved by health care is the number of lives saved. But that is too crude. The death of a teenager is a greater tragedy than the death of an 85-year-old, and this should be reflected in our priorities. We can accommodate that difference by calculating the number of life-years saved, rather than simply the number of lives saved. If a teenager can be expected to live another 70 years, saving her life counts as a gain of 70 life-years, whereas if a person of 85 can be expected to live another 5 years, then saving the 85-year-old will count as a gain of only 5 life-years. That suggests that saving one teenager is equivalent to saving 14 85-year-olds. These are, of course, generic teenagers and generic 85-year-olds. It’s easy to say, “What if the teenager is a violent criminal and the 85-year-old is still working productively?” But just as emergency rooms should leave criminal justice to the courts and treat assailants and victims alike, so decisions about the allocation of health care resources should be kept separate from judgments about the moral character or social value of individuals.

Health care does more than save lives: it also reduces pain and suffering. How can we compare saving a person’s life with, say, making it possible for someone who was confined to bed to return to an active life? We can elicit people’s values on that too. One common method is to describe medical conditions to people — let’s say being a quadriplegic — and tell them that they can choose between 10 years in that condition or some smaller number of years without it. If most would prefer, say, 10 years as a quadriplegic to 4 years of nondisabled life, but would choose 6 years of nondisabled life over 10 with quadriplegia, but have difficulty deciding between 5 years of nondisabled life or 10 years with quadriplegia, then they are, in effect, assessing life with quadriplegia as half as good as nondisabled life. (These are hypothetical figures, chosen to keep the math simple, and not based on any actual surveys.) If that judgment represents a rough average across the population, we might conclude that restoring to nondisabled life two people who would otherwise be quadriplegics is equivalent in value to saving the life of one person, provided the life expectancies of all involved are similar.

This is the basis of the quality-adjusted life-year, or QALY, a unit designed to enable us to compare the benefits achieved by different forms of health care. The QALY has been used by economists working in health care for more than 30 years to compare the cost-effectiveness of a wide variety of medical procedures and, in some countries, as part of the process of deciding which medical treatments will be paid for with public money. If a reformed U.S. health care system explicitly accepted rationing, as I have argued it should, QALYs could play a similar role in the U.S.

Some will object that this discriminates against people with disabilities. If we return to the hypothetical assumption that a year with quadriplegia is valued at only half as much as a year without it, then a treatment that extends the lives of people without disabilities will be seen as providing twice the value of one that extends, for a similar period, the lives of quadriplegics. That clashes with the idea that all human lives are of equal value. The problem, however, does not lie with the concept of the quality-adjusted life-year, but with the judgment that, if faced with 10 years as a quadriplegic, one would prefer a shorter lifespan without a disability. Disability advocates might argue that such judgments, made by people without disabilities, merely reflect the ignorance and prejudice of people without disabilities when they think about people with disabilities. We should, they will very reasonably say, ask quadriplegics themselves to evaluate life with quadriplegia. If we do that, and we find that quadriplegics would not give up even one year of life as a quadriplegic in order to have their disability cured, then the QALY method does not justify giving preference to procedures that extend the lives of people without disabilities over procedures that extend the lives of people with disabilities.

The costs of the current health care system are becoming increasingly clear, and public sentiment for a more systematic approach may be growing. We’d like to know what you think about the prospect of rationing.

This method of preserving our belief that everyone has an equal right to life is, however, a double-edged sword. If life with quadriplegia is as good as life without it, there is no health benefit to be gained by curing it. That implication, no doubt, would have been vigorously rejected by someone like Christopher Reeve, who, after being paralyzed in an accident, campaigned for more research into ways of overcoming spinal-cord injuries. Disability advocates, it seems, are forced to choose between insisting that extending their lives is just as important as extending the lives of people without disabilities, and seeking public support for research into a cure for their condition.

The QALY tells us to do what brings about the greatest health benefit, irrespective of where that benefit falls. Usually, for a given quantity of resources, we will do more good if we help those who are worst off, because they have the greatest unmet needs. But occasionally some conditions will be both very severe and very expensive to treat. A QALY approach may then lead us to give priority to helping others who are not so badly off and whose conditions are less expensive to treat. I don’t find it unfair to give the same weight to the interests of those who are well off as we give to those who are much worse off, but if there is a social consensus that we should give priority to those who are worse off, we can modify the QALY approach so that it gives greater weight to benefits that accrue to those who are, on the QALY scale, worse off than others.

The QALY approach does not even try to measure the benefits that health care brings in addition to the improvement in health itself. Emotionally, we feel that the fact that Jack Rosser is the father of a young child makes a difference to the importance of extending his life, but his parental status is irrelevant to a QALY assessment of the health care gains that Sutent would bring him. Whether decisions about allocating health care resources should take such personal circumstances into account isn’t easy to decide. Not to do so makes the standard inflexible, but taking personal factors into account increases the scope for subjective — and prejudiced — judgments.

The QALY is not a perfect measure of the good obtained by health care, but its defenders can support it in the same way that Winston Churchill defended democracy as a form of government: it is the worst method of allocating health care, except for all the others. If it isn’t possible to provide everyone with all beneficial treatments, what better way do we have of deciding what treatments people should get than by comparing the QALYs gained with the expense of the treatments?

Will Americans allow their government, either directly or through an independent agency like NICE, to decide which treatments are sufficiently cost-effective to be provided at public expense and which are not? They might, under two conditions: first, that the option of private health insurance remains available, and second, that they are able to see, in their own pocket, the full cost of not rationing health care.

Rationing public health care limits free choice if private health insurance is prohibited. But many countries combine free national health insurance with optional private insurance. Australia, where I’ve spent most of my life and raised a family, is one. The U.S. could do something similar. This would mean extending Medicare to the entire population, irrespective of age, but without Medicare’s current policy that allows doctors wide latitude in prescribing treatments for eligible patients. Instead, Medicare for All, as we might call it, should refuse to pay where the cost per QALY is extremely high. (On the other hand, Medicare for All would not require more than a token copayment for drugs that are cost-effective.) The extension of Medicare could be financed by a small income-tax levy, for those who pay income tax — in Australia the levy is 1.5 percent of taxable income. (There’s an extra 1 percent surcharge for those with high incomes and no private insurance. Those who earn too little to pay income tax would be carried at no cost to themselves.) Those who want to be sure of receiving every treatment that their own privately chosen physicians recommend, regardless of cost, would be free to opt out of Medicare for All as long as they can demonstrate that they have sufficient private health insurance to avoid becoming a burden on the community if they fall ill. Alternatively, they might remain in Medicare for All but take out supplementary insurance for health care that Medicare for All does not cover. Every American will have a right to a good standard of health care, but no one will have a right to unrationed health care. Those who opt for unrationed health care will know exactly how much it costs them.

One final comment. It is common for opponents of health care rationing to point to Canada and Britain as examples of where we might end up if we get “socialized medicine.” On a blog on Fox News earlier this year, the conservative writer John Lott wrote, “Americans should ask Canadians and Brits — people who have long suffered from rationing — how happy they are with central government decisions on eliminating ‘unnecessary’ health care.” There is no particular reason that the United States should copy the British or Canadian forms of universal coverage, rather than one of the different arrangements that have developed in other industrialized nations, some of which may be better. But as it happens, last year the Gallup organization did ask Canadians and Brits, and people in many different countries, if they have confidence in “health care or medical systems” in their country. In Canada, 73 percent answered this question affirmatively. Coincidentally, an identical percentage of Britons gave the same answer. In the United States, despite spending much more, per person, on health care, the figure was only 56 percent.

Peter Singer is professor of bioethics at Princeton University. He is also laureate professor at the University of Melbourne, in Australia. His most recent book is “The Life You Can Save: Acting Now to End World Poverty.”

With the help of Denver infertility specialist Dr. William B. Schoolcraft, the Nashes were able to select an embryo that met two criteria: it didn’t carry the genetic abnormality that would cause Fanconi Anemia (FA), an often-fatal genetic disease, and it was a tissue match for Molly Nash who suffered from FA. The selected embryo would later develop to be Molly’s little brother Adam. The cord blood from Adam’s placenta would be used for a blood transfusion that would save Molly’s life. Later a second embryo from the couple would grow to become the couple’s third child, Delaine.

“I appreciate the public discussion of the ethical issues raised by the book, and now the movie,” said Molly’s mom, Lisa Nash. “But it’s important to remember Jodi Picoult’s story is in many ways a worst case scenario and our reality was one of miracles and hope.”

The Nashes were the first couple to use Preimplantation Genetic Diagnosis (PGD) to create an embryo that could save a sibling’s life. The bioethical issues raised by the case led to extensive, in-depth coverage in nearly every major media outlet in the world. The coverage caught the eye of author Picoult, who used it as a jumping off point for her novel, My Sister’s Keeper.

“We stress to people that the book is fiction and that our family is reality,” explains Jack Nash. “The reality is that because of amazing reproductive medicine advances, we have been able to have a family. Without the science, Molly would have died and we wouldn’t have tried to have any other children for fear they’d die of FA too. That’s the reality.”

Dr. Schoolcraft, an internationally recognized expert in reproductive medicine whose Colorado Center for Reproductive Medicine (CCRM) was able to allow the Nash’s embryos to live longer outside the womb so they were more likely to survive, agrees with the Nashes that the book and movie have spurred an important discussion of the bioethics around PGD.

“These issues are ethically challenging,” Dr. Schoolcraft acknowledges. “I think it is wrong, however, to slap the label of designer baby on these kids and dismiss this work as the province of couples who want to create babies to glorify their egos. The Nash’s situation, and many that have come since Adam was born eight years ago, show that this science can save lives and lead to loving families.”

Lisa Nash commented, “Today when I hear the designer baby label, I laugh. Adam was designed to save his sister’s life, but that’s where it ended. Professional sports teams will have to look elsewhere. He’s our special boy, but he’s just a kid.”

Lisa is emphatic about the parameters the couple set when working with Dr. Schoolcraft. “We decided Adam’s cord blood would be used to attempt to save Molly’s life, but that would be it. He would not be used for his blood, marrow or organs after he was born.”

Today all the Nash children are thriving. Adam’s cord blood succeeded in curing Molly’s leukemia. While she still lives with health issues like diabetes, and understands the potential for many types of cancers, Molly is in most ways a typical 14-year-old who loves text messaging her friends and performing in the theater. “Molly lets me do the worrying. She knows what happened with her was a miracle, but she’s now focused on being a teenager,” her mom said.

 Sotomayor was diagnosed with Type 1 diabetes when she was 8 years old. People with the condition have shorter life spans — seven to 10 years shorter, according to the Juvenile Diabetes Research Foundation. Sotomayor will be 55 next month.

Before the appointment, some in the blogosphere raised her health as an issue, noting that Supreme Court justices may serve for life — often several decades. But diabetes experts say that not all diabetics live shorter lives.

“To automatically jump to the conclusion that it’s going to shorten her life span, of course, is not at all fair,” says University of Washington endocrinologist Paul Robertson.

He says the shorter life span happens when some people with diabetes don’t take care of themselves. With proper treatment, Sotomayor and others can live long lives.

“I think the pertinent question is how is she dealing with it, how’s she taking care of it? Is she doing a good job?” says Robertson. “Those kinds of questions make sense because you’d ask the same questions of somebody with a chronic disease like heart disease or cancer or leukemia.”

Robertson, the president for medicine and science for the American Diabetes Association, says treatment now is advanced and easy. “You can handle diabetes. It’s just basically, you need to do the right things. You need to check your blood glucose, make rational decisions about how much insulin to give yourself and do it. So it’s not rocket science these days.”

The White House noted that Sotomayor has lived with her diabetes for decades and that she has successfully kept it under control with insulin injections.

Political scientist David Atkinson says the fact that Sotomayor’s been open about her diabetes is something new when it comes to the Supreme Court.

Atkinson, a professor at the University of Missouri, Kansas City, who has written about the health of Supreme Court justices, says even recent and current members of the high court have kept their medical issues hidden.

“Chief Justice Rehnquist was very reluctant to disclose his health difficulties,” he says of Rehnquist’s battle with thyroid cancer. “And Ruth Bader Ginsburg did not initially disclose her cancer difficulty. But subject to a certain amount of media pressure, she began to do so.” (Ginsburg was reluctant to disclose her colon cancer in 1999. But earlier this year, she was quick to go public when she was diagnosed with a pancreatic tumor.)

Atkinson says Sotomayor’s health problems are mild compared to those of other justices. “The consensus seems to be this is not a disqualifying kind of ailment,” he says. “You know, after all, John Paul Stevens was put on the court by President Ford after he had open heart surgery. And Justice Stevens has served for a very long time on the Supreme Court.”

Chai Feldblum, a professor at the Georgetown University Law Center who has a specialty in disability civil rights law, says Sotomayor’s example could reduce the stigma that exists around diabetes.

“It matters that a nominee for the Supreme Court is someone who acknowledges she has diabetes and that forms an aspect of her life,” says Feldblum. Disability civil rights groups noted that, at a time when other judges had limited the scope of the Americans with Disabilities Act, Sotomayor ruled in favor of disabled plaintiffs, including a woman with learning disabilities who’d gotten extra time on tests during law school but then was denied the same accommodation when she tried to take the bar exam.

Still, people with diabetes say they often have reason to hide their condition: Sometimes they face discrimination.

Just last week, a federal jury found the FBI had discriminated when it refused to hire police officer Jeff Kapche to be a special agent because he managed his Type 1 diabetes with insulin injections. One diabetes blog said the Sotomayor nomination showed that people with diabetes now can break the glass ceiling for chronic illnesses.

-Joseph Shapiro

Carrying someone else’s baby is a practice as old as the world itself. But for the last twenty years or so, the techniques of in-vitro fertilisation and artificial insemination have made possible gestational surrogacy, the act of carrying a child conceived outside of a sexual union, with the ovocytes of another woman.

Illegal in France, this practice is authorised abroad. The Mennesson couple, whose twin girls were carried by a Californian woman in 2000 and who still do not have a civil status in France, are moving their fight from the field of media to the political field.

Their call for the legalisation of gestational surrogacy launched at the end of March has collected 300 signatures, including that of many prominent people (politicians, legal practitioners, psychoanalysts, doctors…).

Opposing them, the « anti » group, made up of Catholics, feminists or doctors, is rallied around the philosopher Sylviane Agacinski who has just published a virulent book, Corps en miettes (Body in Bits) (Flammarion).

Who is concerned ?

Couples with fertility problems do not always have recourse to gestational surrogacy. Far from it. It is for those couples among whom the woman has no uterus and for whom it is the only solution (apart from adoption, the difficulties of which are well known) to have a child. At least this is the case in all the countries in which GS is authorised, as illegal practices are developing notably in India where it is possible to « have a baby made » for 10,000€.

The surrogate mother is implanted with an embryo from the genitors (the oocytes of the natural mother, or of an anonymous donor if the mother does not have any, which have been fertilised in vitro by the father’s sperm) and only « lends » her uterus for the duration of the pregnancy (or rents it out in the worst case scenario).

In France, it is estimated that 30 000 couples resort to medically assisted procreation each year. But only around a hundred reportedly turn to gestational surrogacy. Experts routinely estimate at a thousand the number of children in France born as a result of this technique.

What happens abroad ?

While the majority of countries have not legislated explicitly on this practice, illegal in Germany, Spain, Switzerland, Finland and Italy, more and more are authorising it.

Gestational surrogacy has been explicitly legalised by some states within the US, in Canada, New Zealand, Brazil, South Africa, India, some Australian states, Israel, Ukraine, Argentina, Russia, Georgia…

Closer to home, Holland and Belgium have not outlawed it. England and Greece have legalised gestational surrogacy – to better oversee it.

What does French law say ?

Since 1994, article 16-7 of the civil code has stipulated that « any convention related to procreation or gestation for another is null and void ». The surrogate mother alone is recognised as the biological mother. This is what happened to the Mennesson parents, who have been trying for almost ten years to have the filiation of their children recognised, by case law and by legislation.

What does the judge say ?

The judiciary odyssey of the Mennesson parents reveals the uneasiness within society on this matter. As Sylvie Mennesson says :

Since our return from the Unites States, we have been treated like criminals. Brought to Criminal Court, we won at first instance : in October 2007, our children’s filiation was recognised.

The Public Prosecutor appealed and the Court of Cassation (the highest court in the French judiciary) rejected this appeal in December. We are to go back to the court of appeals for a judicial decision on the issue itself. The ball is now in the court of the legislator.

The judges have evoked « the importance of the children’s interests » at times to recognise their filiation, at others the « disruption of international public order » which would constitute the quashing of the former. In the final analysis, they have passed the buck and may be caught out by a change in the law.

Why is the debate resurfacing now ?

The laws on bioethics having been rendered null and void by evolution in science, the Senate began working last year on the subject of « maternity for others’. Michèle André, a Socialist Party Senator and rapporteur on the text says this :

« Most parliamentarians of all political persuasions felt it was necessary to legalise gestational surrogacy so as to control it and avoid any abuse. The doctors and judges we have spoken to are telling the legislator to get working’.

 

On the basis of this report, Michèle André is putting the finishing touches to her bill and is waiting for an opportune moment to introduce it. “If we continue to outlaw it, women will continue to travel and I find that very sad. Other European countries have had the courage to consider the question’, says the Senator.

What do French people think ?

If the last survey carried out by Ipsos for the magazine Top Santé in January is to be believed, 61% of French people are in favour of the authorisation of surrogate mothers and 33% are opposed to it.

When the question concerns them directly, the women surveyed are less in favour : 55% say they would not be prepared to use a surrogate mother if they could not have children.

And only 17% of women questioned would be prepared to carry a child for someone they do not know (the percentage climbs to 39% when it is for ‘someone very close, like a sister or a friend’).

What do the medical experts say ?

The Biomedicine Agency (created in 2004) launched a general consultation on bioethics which will end in June with the presentation of a report to the President. Everyone can have their say on the site created especially for this purpose. As for the National Academy of Medicine, consulted as a medical authority’, it emitted a very cautious report, claiming,

By the nature of the problems it engenders, gestational surrogacy engages first and foremost society and comes under legislative decision’.

What do those who are for legalisation say ?

The Secretary of State for Family, Nadine Morano, stands out in her party and has outraged Christine Boutin and the Catholic fringe of the UMP. Overtly in favour of legalisation for some time, Nadine Morano has declared that she would carry a child for her daughter.

On RTL last week, she insisted on her preference for the term surrogate woman’ :

« The woman carries the couple’s embryo for the couple ; she gives nothing of her genetic capital, she only carries. The surrogate mother is the genitor, the surrogate woman is just the gestator. »

 

Rue 89 interviewed three of the most eminent signatories of the call for the legalisation of gestational surrogacy in France, launched by the association Clara, and has transcribed their arguments.

Elisabeth Roudinesco, a historian and psychoanalyst : no apocalypse’

« We should never be afraid of changing laws corresponding to changes which have come about in society and science. Gestational surrogacy is the continuation of all medically assisted procreation.

Since the end of the 19th Century, any change related to the family sends society into a panic : when divorce, the equality of rights of parents who had limited paternal access, then abortion were authorised… We are always being told an apocalypse is about to happen, and it never does !

Apocalypse would be a humanity that didn’t want children. »

 

Serge Hefez, psychiatrist and psychoanalyst : ‘a gift’

« This act needs to be reconsidered as a gift, the “gift of engendering” (the sociologist Irène Théry’s term) that creates solidarity. Giving something of yourself that others do not have is not that common in our individualistic societies !

Remember that in traditional societies a child belongs less to his/her parents, than to the whole society. For a child, the knowledge that two mothers » love was necessary for his/her birth is rather affirming. »

 

François Olivennes, obstetrician-gynecologist : ‘indispensable’

« The legalisation of surrogate women is indispensable to avoid the difficulties and the financial extortion to which women who use this technique are exposed.

It is also important, although this point needs to be tackled separately, to regularise the status of children already conceived this way. In my opinion French society is ready and the majority of French people are in favour of it. »

 

The psychoanalyst Geneviève Delaisi de Parseval, in a piece written for the ondation Terra Nova thinks that :

« Gestational surrogacy offers an approach to modern parental ties, where the desire of people intent on becoming parents and the contribution of the creative forces of a third party are woven together, against a background of parental planning, willingness and educational responsibility. »

 

What do the opponents say ?

In her book Corps en miettes, Sylvie Agacinski does not mince her words when it comes to denouncing what she sees as a ‘barbarity’ which makes women a ‘living tool’.

Extracts :

« The rendering available of the female uterus is an indispensable part of the overall plan to manufacture children in laboratories ».

 

The philosopher, Lionel Jospin’s wife, fears that once it is legalised, this practice will become a new job which one can work at part time from home. A godsend for unemployed women, in sum.’

She fears a ‘vicious circle’, engendered by legalisation :

« On the one hand, the possibility of having babies “differently” makes sterility more intolerable than ever and sends through the roof the “demand for children’. On the other, this demand drives doctors to create babies and stimulates a procreative market which is more and more prosperous.

The term gestation conveniently occults labour and delivery, the moment of childbirth in the strictest sense, a crucial event for the child since it is his/her birth, and a moment of danger for the mother.

This use alone of the womb goes against dignity, even if it isn’t a transaction, because it makes the very existence of human beings become a service dependent on another. »

 

What are the controversial points ?

Gestational surrogacy is likely to be legalised this year, but only for heterosexual couples among whom the woman cannot carry children and provided one of the two parents at least is the genitor.

But many quite sensitive issues still need to be resolved :

Gestation or maternity ? On the face of it, the law will probably outlaw the use of genes belonging to the surrogate mother who would only ‘lend her uterus’ for the duration of the pregnancy.

But could the surrogate mother, in spite of everything, claim maternity ? The Senate’s report has made provisions for the gestator to become the legal mother of the child if she so desires, up to three days after the birth. What happens in that case to the ‘intended parents’ ?

What remuneration ? The act of carrying a child for another should be compensated, but how would the rate be fixed ? Can the cost of nine months of pregnancy and maternity leave, and the health risks associated with childbirth, be evaluated reasonably’ ?

Control ? Who would be qualified to carry a child for someone else and within what framework ? The Senate has provided that the surrogate mother should have a child already and that she would not be authorised to carry a child for another person more than once.

Couples and surrogate mothers could be put into contact through associations accredited by the Biomedicine Agency. Will they have the means to ensure that everything goes smoothly between both parties, and for how long ? The psychological consequences for the surrogate mother and for the child born his way are also unknown.

Translation by Fiona McCann, Par Sophie Verney-Caillat | Rue89 | 24/04/2009 | 15H55

The case was brought on behalf of a 13-year-old girl with fragile X syndrome, a common inherited form of mental retardation.

While the judge dismissed several claims, he allowed others to move forward; the WSJ’s Law Blog hashes out the legal details.

One interesting legal/medical issue is the way state laws differ — the law in New York, where the sperm bank is located, state law provides companies that traffic in human tissue and the like less protection than a similar law in Pennsylvania, where the girl was conceived.

A case report on the girl was published last year in the American Journal of Genetics Part A.

“We suggest fragile X DNA screening in gamete donor candidates to decrease the chance of fragile X involvement in their offspring,” the authors wrote.

Want a daughter with blond hair, green eyes and pale skin?  A Los Angeles clinic says it will soon help couples select both gender and physical traits in a baby when they undergo a form of fertility treatment. The clinic, Fertility Institutes, says it has received “half a dozen” requests for the service, which is based on a procedure called pre-implantation genetic diagnosis, or PGD.