The British government's U-turn on funding NHS treatment for cancer sufferers who have paid for private treatment will not help them as much as many expect, says a cancer campaigning group.
The move followed a study by Professor Mike Richards, the so-called cancer tsar, who had been asked to look into whether patients should be allowed to pay to 'top up' basic NHS treatment. The government has accepted all 14 of his recommendations, including that 'the Department of Health should make it clear that no patient should lose their entitlement to NHS care they would have otherwise received simply because they opt to purchase additional treatment for their condition'.
But campaigners point out that cancer sufferers will still end up footing large bills that most people would now expect to be covered by the NHS - costs that occur as a result of the private treatment, such as blood tests and scans.
A Department of Health spokesperson said: 'Patients will have to pay for all additional care, not routinely provided by the NHS, including - if the patient has purchased additional drugs - the cost of administering medication and blood tests. Where additional private care has predictable side effects, the cost of these will be met by the patient as well. The NHS will not subsidise private care.'
Until now, primary care trusts have decided which of the associated costs should be met by the NHS and which should be paid for privately. Where the new ruling has clarified that costs should have been met by the NHS, some trusts are now reviewing cases and reimbursing costs. However the DoH spokesperson says the government has not demanded this, so not all cancer sufferers will benefit.
Family and well-wishers had hoped that the government's change of heart on 'top-up' drugs would lighten the load for Diane Winston. The 53-year-old kidney cancer sufferer from Portsmouth was recently billed for £18,000 for her medical care. She currently pays £5,296 for a single six-week course of the drug Sorafenib, which is not available on the NHS. She is also billed by the NHS a further £2,200 for liver function tests, blood counts and scans.
'Everyone assumes, having read the press, that Diane is finally going to be helped. But the reality is that absolutely nothing has changed,' says Diane's husband Lionel, a lieutenant-commander in the navy. He recently threatened to return his MBE, awarded to recognise his military career, in protest.
The proposals are 'totally misleading in the way they have been presented', says Kate Spall, of the Pamela Northcott Fund, a group that campaigns for new drugs and treatments to be made available to kidney cancer patients.
She says this is because 'among the balloons and party poppers' the reality is that 'if a scan, consultancy or blood test is due to you being on a treatment and, if you are paying for that treatment, then the NHS isn't going to cover any of those costs'.
Health Secretary Alan Johnson has said that the National Institute for Health and Clinical Excellence (Nice) would introduce 'more flexibility in the evaluation of higher-cost treatments' and speed up its appraisal process. He said that, as a result of proposals, a 'very small minority' would wish to buy drugs not provided on the NHS.
Spall adds: 'I'm furious about the confusion over top-ups, but I hope fewer patients will have to top up at all.' Her hope is that Nice will come back with a positive recommendation for new kidney cancer drugs.
Cancer charity Macmillan is more positive about the announcement. Ciaran Devane, chief executive at Macmillan Cancer Support, says: 'The real issue was always how to make new life-extending drugs available on the NHS to cancer patients who need them.
'We are very pleased that Alan Johnson has recognised this and committed to reform Nice to make sure this happens. It is right to recognise that the proper solution is to reform the system that didn't allow these drugs in the NHS in the first place. We are delighted by the government's pledge to make more drugs available to patients on the NHS. Macmillan estimates that 10,000 patients a year will benefit from this.'
Until then, Lionel has to care for an increasingly ill wife and live with the anxiety of the rising costs. 'All this has come at a very bad time,' he says. 'If it was two years ago I could have sold the house and moved somewhere smaller, but now even the economic climate is against us.'
Insurance cover
The Association of British Insurers says the industry has 'a key role to play in helping to ensure access to the very best healthcare and drugs'.
Spokesman Jonathan French says they 'could step in and provide a product' that could be 'paid for over time and on a regular basis' rather than 'having people fork out £10,000 or £20,000' or 'having to sell the house'.
Health specialist WPA is already in the market. 'Only 12 per cent of people in the UK have medical insurance, which means that there are 88 per cent of people out there worried about what the NHS can do for them but wanting to make the most of its services,' says spokesman Charlie McEwan.
WPA's MyCancerDrugs product is specifically aimed at cancer drugs 'denied on the NHS even though they have been proven effective'. It was launched 18 months ago and, such was its novelty, that WPA commissioned its own opinion from a QC to vouch for its legality.
'Our worry was that you might find a patient having cancer and wanting to top up their NHS care and coming across a clinician who would say that they weren't going to administer that drug,' McEwan says. Unsurprisingly, the insurer believes that its stance has been vindicated by the recent announcement.
The product is relatively inexpensive. Pricing is based on age plus the 5 per cent insurance premium - so, if you are 35 years it is £35 plus £1.75. But the policy is narrowly drawn and covers only 14 drugs (including Avastin, Herceptin and Sorafenib). It will not cover you if you have had cancer (or have a direct relative who has) or if you are 65-plus, and you can't make a claim in the first 90 days. Plus, the policy won't pay out more than £50,000 in any year (the 'indicative' cost for one of the listed drugs is £10,000 a month). You can also have the cover as part of a product called Health Top Up which costs £16-£24 a year. That product covers dental and optical treatments, prescription charges, treatment while on holiday abroad and cosmetic surgery after an accident.
Dr Natalie-Jane Macdonald, managing director of Bupa UK Health Insurance, says it has 'long held the view that individuals and families who wish to supplement their NHS entitlements should be encouraged and applauded'. Bupa's own comprehensive private insurance provides cancer cover with no financial threshold.
