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Paying
Patients Test British Health Care System
SOURCE:
Sarah Lyall, The New York Times; February 21, 2008.
LONDON — Created 60 years
ago as a cornerstone of the British welfare state, the
National Health Service is devoted to the principle of free
medical care for everyone. But recently it has been
wrestling with a problem its founders never anticipated: how
to handle patients with complex illnesses who want to pay
for parts of their treatment while receiving the rest free
from the health service.
Although the government is
reluctant to discuss the issue, hopscotching back and forth
between private and public care has long been standard here
for those who can afford it. But a few recent cases have
exposed fundamental contradictions between policy and
practice in the system, and tested its founding philosophy
to its very limits.
One such case was Debbie
Hirst’s. Her breast cancer had metastasized, and the health
service would not provide her with Avastin, a drug that is
widely used in the United States and Europe to keep such
cancers at bay. So, with her oncologist’s support, she
decided last year to try to pay the $120,000 cost herself,
while continuing with the rest of her publicly financed
treatment.
By December, she had raised
$20,000 and was preparing to sell her house to raise more.
But then the government, which had tacitly allowed such
arrangements before, put its foot down. Mrs. Hirst heard the
news from her doctor.
“He looked at me and said:
‘I’m so sorry, Debbie. I’ve had my wrists slapped from the
people upstairs, and I can no longer offer you that
service,’ ” Mrs. Hirst said in an interview.
“I said, ‘Where does that
leave me?’ He said, ‘If you pay for Avastin, you’ll have to
pay for everything’ ” — in other words, for all her cancer
treatment, far more than she could afford.
Officials said that
allowing Mrs. Hirst and others like her to pay for extra
drugs to supplement government care would violate the
philosophy of the health service by giving richer patients
an unfair advantage over poorer ones.
Patients “cannot, in one
episode of treatment, be treated on the N.H.S. and then
allowed, as part of the same episode and the same treatment,
to pay money for more drugs,” the health secretary, Alan
Johnson, told Parliament.
“That way lies the end of
the founding principles of the N.H.S.,” Mr. Johnson said.
But Mrs. Hirst, 57, whose
cancer was diagnosed in 1999, went to the news media, and so
did other patients in similar situations. And it became
clear that theirs were not isolated cases.
In fact, patients, doctors
and officials across the health care system widely
acknowledge that patients suffering from every imaginable
complaint regularly pay for some parts of their treatment
while receiving the rest free.
“Of course it’s going on in
the N.H.S. all the time, but a lot of it is hidden — it’s
not explicit,” said Dr. Paul Charlson, a general
practitioner in Yorkshire and a member of Doctors for
Reform, a group that is highly critical of the health
service. Last year, he was a co-author of a paper laying out
examples of how patients with the initiative and the money
dip in and out of the system, in effect buying upgrades to
their basic free medical care.
“People swap from public to
private sector all the time, and they’re topping up for
virtually everything,” Dr. Charlson said in an interview.
For instance, he said, a patient put on a five-month waiting
list to see an orthopedic surgeon may pay $250 for a private
consultation, and then switch back to the health service for
the actual operation from the same doctor.
“Or they’ll buy an M.R.I.
scan because the wait is so long, and then take the results
back to the N.H.S.,” Dr. Charlson said.
In his paper, he also wrote
about a 46-year-old woman with breast cancer who paid $250
for a second opinion when the health service refused to
provide her with one; an elderly man who spent thousands of
dollars on a new hearing aid instead of enduring a yearlong
wait on the health service; and a 29-year-old woman who,
with her doctor’s blessing, bought a three-month supply of
Tarceva, a drug to treat pancreatic cancer, for more than
$6,000 on the Internet because she could not get it through
the N.H.S.
Asked why these were
different from cases like Mrs. Hirst’s, a spokeswoman for
the health service said no officials were available to
comment.
In any case, the rules
about private co-payments, as they are called, in cancer
care are contradictory and hard to understand, said Nigel
Edwards, the director of policy for the N.H.S.
Confederation, which represents hospitals and other health
care providers. “I’ve had conflicting advice from different
lawyers,” he said, “but it does seem like a violation of
natural justice to say that either you don’t get the drug
you want, or you have to pay for all your treatment.”
Karol Sikora, a professor
of cancer medicine at the Imperial College School of
Medicine and one of Dr. Charlson’s co-authors, said that
co-payments were particularly prevalent in cancer care.
Armed with information from the Internet and patients’
networks, cancer patients are increasingly likely to demand,
and pay for, cutting-edge drugs that the health service
considers too expensive to be cost-effective.
“You have a population that
is informed and consumerist about how it behaves about
health care information, and an N.H.S. that can no longer
afford to pay for everything for everybody,” he said.
Professor Sikora said
oncologists were adept at circumventing the system by, for
example, referring patients to other doctors who can provide
the private medication separately. As wrenching as it can be
to administer more sophisticated drugs to some patients than
to others, he said, “if you’re a doctor working in the
system, you should let your patients have the treatment they
want, if they can afford to pay for it.”
In any case, he said, the
health service is riddled with inequities. Some drugs are
available in some parts of the country but not in others.
Waiting lists for treatment vary wildly from place to place.
Some regions spend $280 per capita on cancer care, Professor
Sikora said, while others spend just $90.
In Mrs. Hirst’s case, the
confusion was compounded by the fact that three other
patients at her hospital were already doing what she had
been forbidden to do — buying extra drugs to supplement
their cancer care. The arrangements had “evolved without
anyone questioning whether it was right or wrong,” said
Laura Mason, a hospital spokeswoman. Because their treatment
began before the Health Department explicitly condemned the
practice, they have been allowed to continue.
The rules are confusing.
“It’s quite a fine line,” Ms. Mason said. “You can’t have a
course of N.H.S. and private treatment at the same time on
the same appointment — for instance, if a particular drug
has to be administered alongside another drug which is N.H.S.-funded.”
But, she said, the health service rules seem to allow
patients to receive the drugs during separate hospital
visits — the N.H.S. drugs during an N.H.S. appointment, the
extra drugs during a private appointment.
One of Mrs. Hirst’s
troubles came, it seems, because the Avastin she proposed to
pay for would have had to be administered at the same time
as the drug Taxol, which she was receiving free on the
health service. Because of that, she could not schedule
separate appointments.
But in a final irony, Mrs.
Hirst was told early this month that her cancer had spread
and that her condition had deteriorated so much that she
could have the Avastin after all — paid for by the health
service. In other words, a system that forbade her to buy
the medicine earlier was now saying that she was so sick she
could have it at public expense.
Mrs. Hirst is pleased, but
up to a point. Avastin is not a cure, but a way to extend
her life, perhaps only by several months, and she has missed
valuable time. “It may be too bloody late,” she said.
“I’m a person who left
school at 15 and I’ve worked all my life and I’ve paid into
the system, and I’m not going to live long enough to get my
old-age pension from this government,” she added.
She also knows that the
drug can have grave side effects. “I have campaigned for
this drug, and if it goes wrong and kills me, c’est la vie,”
she said. But, she said, speaking of the government, “If the
drug doesn’t have a fair chance because the cancer has
advanced so much, then they should be raked over the coals
for it.”
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