11 Nov 2009 Government Health System Penalized Woman for Supporting Her Own Cancer Treatment
Summary: The British National Health Service refused to provide the advanced cancer drug Avastin to Colette Mills, who was willing to pay for it herself. Mills was told that if she paid for the drug the NHS didn’t cover because if its cost, the NHS would stop paying for her cancer treatment altogether.
Colette Mills of North Yorkshire, England was up against a rigid National Health Service policy that at the time would have taken away her taxpayer-provided health care if she purchased a life-extending cancer drug beyond the dosage the government provided for her.
Mills fought breast cancer for over a quarter century. Though the last roughly 20 years were “blissfully” clear of cancer, she says, it returned in 2003 and spread throughout her body. The 58-year-old former NHS nurse was given Taxol, a chemotherapy drug, as part of her publicly-financed health care. But, following the advice of her hospital specialist, Mills decided to spend her own money to boost her treatment with the so-called wonder drug, Avastin.
Drug trials show Taxol is perhaps twice as effective when combined with Avastin, and, when coupled, the drugs could slow advanced breast cancer.
Mills believed that combining the drugs “would probably give me a longer life and a better quality of life.” She added, “Avastin may only increase your lifespan by six weeks or six months but, believe me, when it’s your life, you’re not picky.”
The rub at the time was even if Mills paid out-of-pocket to supplement her care, the NHS would begin to bill her for the entire cost of treatment because she would be considered a private patient.
“If a patient chooses to go private for certain drugs they elect to become a private patient for the course of their treatment for that condition. That is trust policy,” said a statement by South Tees Hospitals NHS Trust, Mills’ local health care provider.
Though Avastin was publicly available elsewhere in the UK, South Tees Hospitals NHS Trust would not fund Avastin because of its high cost. In Britain, the wide disparity of drugs and services made available depending on locality is informally termed the NHS ‘postcode lottery.’
Mills was willing to pay the estimated £4,000 a month to get the expensive drug and have it administered – but she did not want to be stuck with the tab for her entire treatment. “The costs would increase from £4,000 a month to about £10,000 to £15,000 for all my care. I would need to pay charges for seeing the consultant, for the nurses’ time, for blood tests and scans,” Mills explained.
Thus, by doing what she thought necessary to improve her chances of survival, Mills would be responsible for paying some £15,000 (~$24,400) to the government. “The policy of my local NHS trust is that I must be an NHS patient or a private patient,” said Mills. “If I want to pay for Avastin, I must pay for everything. It’s immoral that the drugs are out there and freely available to certain people, yet they say I cannot have it.”
The rationale for the bizarre policy that restricted how citizens spent their own money for health care was rooted in the NHS’s belief that care should be equal and not based on a patient’s ability to pay. “The Government is committed to a publicly funded NHS, free at the point of use and available to all regardless of income,” explained a spokesman for Britain’s Department of Health. “Co-payments would risk creating a two-tier health service and be in direct contravention with the principles and values of the NHS.”
The health care provider, therefore, rejected Mills’ request because it considered her buying an extra drug to be an “add on” to her existing NHS treatment. Mills’ pleas to the NHS health trust were rejected, and she and husband, Eric, abandoned their challenge.
“I can’t go private…” said Mills. “This decision is totally unjust… this drug would prolong my life.”
Mills recognized there naturally may be cost prohibitions for some care. But, she argued, “The whole concept of the NHS is that it’s free at the point of need. Why should that stop because I want to pay for something?” She also pointed out the NHS’s apparent double standard. “It is already a two-tier NHS,” said Mills. “I’d had a scan privately when there was a two-week wait on the NHS… If I go to the dentist I can mix my NHS and private treatment.”
Professor Karol Sikora, a medical expert who advises the World Health Organization, sided with Mills. “For health bosses to say Mrs. Mills cannot top up her NHS treatment is ideology gone mad. It is medical communism and utterly immoral,” she charged. “This is unfair to taxpayers who are entitled to NHS care. If this patient wishes to pay for another drug, that should be her choice.”
After considerable public disapproval and an official Department of Health Review, the NHS reversed its supplemental treatment policy in November 2008. Alan Johnson, the then-Health Secretary, announced new guidelines that purchasing private treatment will not mean that patients forfeit their entitlement to NHS services.
Reacting to the policy change, Mills said, “This move by the Government is exactly what I’ve been fighting for – but it has been a long time coming.”
Although the government’s change of policy was welcome news for patients like Mills, it came too late for Mills herself – four months after her unsuccessful effort to purchase Avastin herself, her cancer spread to such an extent that it will no longer respond to the treatment.
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