Financial Times (KC) 15-Aug-08

From Kidney Cancer Resource

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Private care providers plug gap in state cancer treatment

By Alice Ross

Published: August 15 2008 18:45

The need to make private provision for the unexpected costs of a life-threatening illness was underscored this week with more evidence of erratic gaps in NHS funding for cancer drugs.

Each year, an estimated 280,000 men, women and children in the UK face up to the emotional and physical hardships of a cancer diagnosis.

For many, the strain of coping with their illness is compounded by the financial impact of an often sudden diagnosis, including loss of income after stopping work and having to pay for ongoing hospital visits and prescriptions.

But research shows that a “postcode lottery” still determines how far they are pushed into the red if they need expensive treatments for rare conditions, or to halt their cancer’s advance.

Currently, state funding for cancer drugs in England and Wales is determined by the National Institute for Clinical Excellence (Nice), which bases its decisions on whether there is enough clinical benefit to justify the expense.

Patients can appeal against Nice decisions at the local level, under the “exceptional case” provisions. But the chances of winning at this stage will often come down to where the patient lives.

A survey by the Rarer Cancers Forum (RCF) found “huge variations” in the way Primary Care Trusts decide on “exceptional cases”, with some approving all requests and others denying all.

Those patients who are not fortunate enough to win an appeal – or who don’t live in Scotland where many more cancer drugs are state-funded – must then find tens of thousands of pounds, often at short notice, if they are not insured. Some have even cashed in their pensions, to get treatments to keep them alive.

The RCF study found 5,000 patients were “forced” to demonstrate “exceptionality” in the past 20 months. Of this figure, 1,300 were rejected.

“Having cancer should not cost you your home, but as many as 45,000 people each year are struggling to keep a roof over their heads and 15,000 have lost their homes,” said Macmillan, the cancer support group.

The RCF survey came on the heels of an interim decision last week by Nice to reject funding for four drugs proven to help with advanced kidney cancer, including Avastin, Nexavar, Sutent and Temsirolimus.

In deciding whether these drugs were value for money, Nice took into account the length of time the drug could extend patients’ lives set against funding treatments for other patients.

Sutent costs about £3,000 for a six-week cycle, or £32,000 a year. So with the drug able to potentially extend the life of a severely ill renal cancer patient by up to six months, it was not deemed cost-effective for the public purse.

Patient groups hoping for a more generous approach from Nice have been buoyed by its recent decision to make Herceptin, for early stage breast cancer, state-funded.

However, for many, particularly those in a high-risk group, private cover offers the only peace of mind. In response, insurers have sought to plug the gap in NHS provision with new “drugs only” policies for those forced to top up their state care. Other providers have fortified standard private medical insurance (PMI) plans by widening the range of cancer drugs paid for.

Millions of individuals who do not have personal provision are also falling back on their employers’ healthcare schemes, which cover cancer.

But even those who have private provision should not assume it is watertight, just because they are insured.

A survey of PMI providers by Mercer, the healthcare consultants, and Macmillan found big differences in what is offered for cancer cover. The survey noted that many policies lacked clarity and used ambiguous terminology which could result in nasty shocks for the private patient if funding for treatment was unexpectedly cut off.

“Eligibility rules for chronic conditions, for example, can sometimes mean cancer treatments will effectively be excluded or cut short,” said the report. “Transparency and clarity must be improved.”

The report “Covering Cancer” also found differences in how much insurers were prepared to pay for high-cost novel treatments for many common cancers.

The report said only three corporate PMI providers met Mercer’s and Macmillan’s “gold standard” – a plan offering the best safety net for cancer, a disease that progresses haphazardly.

Those forced to pay for their own cancer drugs, or “top up” on public care, face another pressing consequence, in that they could be locked out of further NHS care for their disease. This means more expensive bills for ongoing treatment, such as radiotherapy.

In the interim, WPA, the health insurer, has pledged to fund a legal challenge for any of its policyholders who are denied NHS care if they “top up”, having obtained a QC’s opinion that this policy is unlawful.

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