In November of 2006, Barbara Moss, a British schoolteacher living in Worcester, northwest of London, was dying of colorectal cancer. Chemotherapy had failed, and the 51-year-old woman was given three to five months to live when her physician suggested that she try a new cancer drug from Roche called Avastin, which prolongs the life of patients with colorectal cancer for about four months.
The catch was that the drug costs as much as $55,000 a year.
In the United States, most insurers would have paid for the drug. In the U.K., the National Health Service, which insures all Brits, said "no" to paying for the drug. It violated a maximum limit per drug of £30,000 (about $45,000) set by an independent, watchdog agency in the U.K. called NICE—the National Institute for Health and Clinical Excellence. Funded by the government, NICE reviews medical treatments for cost-effectiveness and issues “guidances” to the NHS about setting limits to what the government insurance will pay for.
How the Brits Do It
This is overt rationing of care, and it has worked to cut costs. Like most other countries, the British pay only a fraction of what we pay in the United States for health care—$2,992 per capita compared to $7,290 in the U.S. To put that in perspective, if U.S. health care costs were equal to Britain’s, we would spend about $900 billion a year on our population of 300 million Americans instead of $2.7 trillion—plus everyone would be insured. That’s a difference of $1.8 trillion—which is close to the total annual tax revenue collected from individual Americans.
These savings seem to have come with little or no impact on outcomes, which are similar in Britain to the United States and other industrialized countries, or to the quality of care and patient satisfaction. But there is a downside, which many Americans would not tolerate. Not every procedure, medication, or test is available through NHS, even to patients who require them. And although waiting to see a doctor for hours or days is common in every culture, there have been many complaints in Britain and Canada about wait times. According to a 2008 Commonwealth Fund survey, 42 percent of Canadians had to wait two months or longer to see a specialist, versus 10 percent in the U.S. and 33 percent in the U.K. Brits and other Europeans also have the option of paying extra for private health insurance—which affords more choices and allows them to jump ahead of lines.
Another big factor in the price gap between Britain and the U.S. comes from their mostly public system not having to pay the profits and the sizable overhead of America’s mostly-private health care system. Americans with private health insurance pay close to 10 percent on average for overhead, compared to about three percent for most government-run programs, including Medicare in the U.S.
Health Care Spending Limits
Britain is not alone in enacting measures to control costs without impacting outcomes and quality of care. In Germany, hospitals and local governments are given global budgets that compel them to spend frugally. In Canada, some provinces allow American-style fee-for-service for their physicians, but medical providers must do this within an annual global budget. These countries spend more than the U.K. per capita for health care, but much less than the United States.
Yet any discussion about cost has to consider Barbara Moss. She is a real person living in central England who was denied a drug she and her doctor wanted to try in a desperate attempt to save her life—a woman who in this case was still in the prime of life.
In the United States, a government refusal to pay for Avastin for Barbara Moss would trigger loud protests, and undoubtedly would elicit fresh jabs about death panels and hand-wringing from politicians who have been largely avoiding the end-of-life care controversies.
In Britain, physicians, drug companies and patient advocacy groups have complained, too—most recently about a guidance proscribing the use of Avastin for colorectal cancer, and broadly about other NHS restrictions on paying for treatments that do not pass muster for cost-effectiveness. Kate Spall of the Pamela Northcott Fund told the Daily Mail, "This is another bad day for cancer patients and another good day for accountants." Spall’s organization assists cancer patients denied new treatments.
Consultancy and Guidance
Public criticism of NICE’s stance on Avastin, however, was channeled through a political process that allows for extensive review, discussion and consultation with all interested parties before a decision becomes final. Indeed, the recent guidance was preliminary and will require months or years of public debate before it will come up for a final determination by a panel of independent experts.
The British have used this process, called "consultancy," to vet controversial new medical technologies since the 1970s with the hullabaloo raised by the first “test tube baby” that was delivered using in vitro fertilization. The consultancy process allowed a broad national dialogue that ended up with general acceptance of this procedure.
Earlier this decade, consultancy was also used to discuss the use of embryonic stem cells for research and therapies. This resulted in a national consensus over a policy that allowed the research to go forward during a time when stem cells in the U.S. became highly politicized and research was hampered by Bush administration restrictions on federal funding.
The willingness of the British to confront controversies arising from new technologies comes in part from a national character that tends to be more civil and formal where Americans tend to shout. But it also suggests a fundamental difference in attitudes towards technology—especially medical technology. Americans love it and feel they have a right to all of it no matter what the cost, while the British and most others in industrialized countries do not.
"Europeans don’t expect technology to solve all of their problems," says bioethicist Daniel Callahan. "And they are more likely to understand that there are trade-offs with some technologies that may cost a great deal but deliver little benefit."
For end-of-life care, Brits do not demand heroic, high-tech care, says Duke health policy expert Donald Taylor, who trained in the U.K. "The British expect people to die, especially the elderly," he says. "Most older people don’t expect, or want, a big fuss to be made at the end of life."
This cultural proclivity comes in part from the older generation in Britain and other countries wanting to make way for the next generation. "Some cultures, like in the U.K. and Canada, come to the system not wanting to hog resources from the young," says University of Pennsylvania bioethicist Arthur Caplan. In countries like Japan and Italy, he adds, this sensibility leads to families being expected to care for their dying—to bring them food, and, in Japan, to bathe them.
Tufts psychiatrist Nassir Ghaemi, an Iranian-American who has trained and lived in the United States, Europe and Iran, has observed that Americans are more hands off about death and dying than people in other countries. "Americans don’t have much contact with death," he says. "They rely on technology, and on professionals in nursing homes to take care of their elderly." This seems to cause a certain denial about the reality of death.
"People in Iran are more accepting of death," he says. "When my uncle was dying of metastatic cancer, he could afford medical care in a hospital, but he wanted to die at home with his family."
Religion is a key component of dying in Iran, adds Ghaemi. "Many people in Iran literally believe in an afterlife, so they aren’t scared of death. They believe they will see loved ones. I’ve seen this among Catholics in the U.S., too. It makes the idea of heroic care seem less important."
Whatever the motivation, the British public remains generally accepting of NICE, in part because the U.K. has chosen a pathway of democratic discourse. Still, in Parliament and in the courts, critics do challenge guidances and rules that limit specific procedures or therapies. One case contesting the guidance against the NHS paying for the rheumatoid arthritis drug Abatacept recently reached the British High Court, which upheld the NICE position and rejected drug-maker Bristol-Myers Squibb’s contention that the anti-Abatacept guidance was "irrational," among other charges.
In 2008, the U.K. Health Select Committee of the House of Commons investigated NICE in the wake of complaints by patient groups and others and issued a lengthy report. The committee loosened some of the criteria for NICE in rejecting treatments, but generally supported the organization’s work deploying language that no committee in the U.S. Congress would dare use:
We conclude that NICE does a vital job in difficult circumstances. The development of more and more health technologies and procedures, alongside rising patient expectations and the aging population, is going to make it even more difficult in the future. Healthcare budgets in England, as in other countries, are limited. Patients cannot expect to receive every possible treatment. Demand outstrips resources and priorities have to be determined. In other words rationing is essential…
Bypassing the System
As it turned out, Barbara Moss was able to scrape together £21,000 (about $32,000) by tapping her and her husband’s pensions, with some additional financial help from her 87-year-old mother.
What happened next makes the issue of cost-effectiveness even more excruciating – because the drug worked. It shrunk her tumor enough that surgeons could operate and remove it. This makes her a statistical anomaly, one of the few colorectal cancer patients taking Avastin whose survival was much longer than the average of 4.7 months. Though her cancer has returned, Barbara Moss has survived for over three years—and she has become a spokesperson for Bowel Cancer UK, an advocacy group for patients with colorectal cancer.
Yet the core question remains: Can we afford to pay for high-priced, high-tech treatments for everyone to save a few? And would this system ever work in America, which has a much higher level of distrust of the government making decisions about intimate personal matters? Finally, would a population that had grown accustomed to getting whatever treatments they or their doctor think they should have accept the word "no?"
Click here for the final story of this five-part series. Click here for part three (previous). Click here for part one (previous). Click here for part two of this five-part series.
David Ewing Duncan’s most recent book is "Experimental Man: What one man’s body reveals about his future, your health, and our toxic world."