Paying Patients Test British Health Care System
Britain’s National Health Service would not let Debbie Hirst, who has breast cancer, pay privately for extra cancer drugs that she needed without paying privately for all of her treatment.
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.
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.”
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