Why We Don't Want "Free" Medical Care

In the NY Times:

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.
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Jonathan Player for The New York Times

Debbie Hirst with her husband, Ian, on the beach at Carbis Bay in
Cornwall, England.

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.”