The well-worn notion that patients in the United States
have unfettered access to the most expensive cancer drugs while the
United Kingdom’s nationalized health care system regularly denies
access to some high-cost treatments needs rethinking, a team of
bioethicists and health policy experts says in a new report.
Delving into the question of expensive cancer drugs and who gets
them, the team, led by Ruth R. Faden, Ph.D., director of the Johns
Hopkins Berman Institute for Bioethics, found both systems are far from
perfect and both drew them into a hot-button issue of the current U.S.
health care reform debate: rationing.
Critics of the U.K. system say care there is rationed — that
patients are denied some expensive therapies so that better health care
can be provided to the nation as a whole. Critics of the U.S. system
say care is rationed here, too — that only those with the very best
insurance and those who can afford sky-high out-of-pocket expenses have
meaningful access to any and all high-priced therapies, especially at
the end of life.
The authors found that with regard to very expensive cancer drugs,
both characterizations are largely correct. "The issue is not whether
rationing is a good thing or a bad thing," Faden says. "The issue is
what we should do about extraordinarily expensive treatments, some of
which do very little to improve how well or how long people live." At
the same time, she adds, "there is no ethically defensible reason why
some Americans have access to expensive cancer drugs and some do not."
"Policy makers and our society now need to do the hard work of
developing a reasoned, evidence-based system of using health care
resources wisely, and the first step is to engage in an honest and
transparent conversation about the values that should guide these
decisions, a conversation that is informed by facts, not politics," she
Faden and her colleagues, writing in the December issue of Milbank
Quarterly, compared the costs of 11 high-priced cancer drugs. Seven of
the medications are free to all British patients, who pay no
out-of-pocket costs. The other four are not covered in the National
Health Service because policy-makers have determined the costs are not
worth the limited benefits they provide. Patients in the U.K. who still
want these drugs have to pay all the costs on their own.
By comparison, most patients in the United States who have health
insurance have some coverage for all 11 drugs, the question is how much
they must pay out of pocket even with insurance. For example, the
out-of-pocket costs for people on Medicare range from $1,200 to
$24,000, and because many cancer patients on Medicare are on more than
one drug, their out of pocket costs are often much higher. Access to
expensive cancer drugs for patients with no insurance or very limited
insurance may be completely out of reach, with costs exceeding $100,000
annually in some cases.
Even more telling, an American cancer patient faces the same
financial obstacles regardless of how much benefit the cancer drug
provides. For example, drugs like Herceptin, that can mean the
difference between life and death for some breast cancer patients, can
be no easier for American cancer patients to access than drugs like
Avastin, which studies suggest has little or no impact on patient
In comparing the two health care systems, though they wish they had
more data to work with, the researchers find that the British system is
in many ways fairer than the American system and that it is better
structured to deal with difficult decisions about expensive end-of-life
Faden says the notion that every patient should have unrestrained
access to every drug available, no matter how unlikely the drug is to
help and no matter how modest the benefit, is just not feasible. The
problem is figuring out access strategies that work best for most
people and that respect the range of values that patients facing
serious illness and death hold. "Neither system is well equipped to
think through the kind of challenges that all systems confront," she
For many people, certain drugs will only extend life for a few weeks
or months, and that time can be marked by severe side effects from the
drugs themselves, Faden notes. Still, choosing which path to pursue at
the end of life is an agonizing decision.
"We’re managing health care costs by not allowing some people to be
treated at all or forcing them to face financial ruin by getting
treatment," she says. "Who has an extra $100,000? That’s why people
sell their homes. That’s why people’s kids don’t go to college. There’s
probably no more anguishing kind of decision than what a patient and
her family face at the end of life."
The research was funded in part by the Stavros Niarchos Foundation Grant in support of the Bioethics Rapid Response Initiative.
Other authors on the paper are Hugh R. Waters and Jonathon P. Leider
of Johns Hopkins; Kalipso Chalkidou of the National Institute for
Health and Clinical Excellence in London; and John Appleby, a health
economist in London.