Patients condemned to die – by NHS ban on leukaemia lifeline
...as one healthy survivor asks: Why don’t they think people like me are worth fighting for?
PATIENTS suffering a leukaemia relapse have been ‘handed a death sentence’ by an NHS decision to deny funding for a second lifesaving stem cell transplant if their first one fails.
In a joint letter to the Department of Health, some of the leading names in British medicine – and the world-famous Anthony Nolan Trust – have rallied against the new guidance, issued this month.
They claim that 20 people each year, and at least 22 current patients who have survived a first transplant before experiencing a relapse of their disease after at least 12 months, will succumb to cancer without access to a treatment that could cure them.
‘Without a second transplant, the small percentage of patients considered suitable for one will die of their underlying disease,’ said Professor David Marks, former president of the British Society of Bone Marrow Transplantation and one of 18,000 signatories, including dozens of specialists in blood disease, to a letter handed last week to Health Secretary Jeremy Hunt.
The treatment, which offers the best chance of survival, is given routinely in the US and Europe, and Professor Marks, director of the Bristol Bone Marrow Transplant Unit, says: ‘I know of no other firstworld country where people with a 30 per cent chance of a cure are denied a transplant.’
Before 2013, patients in the UK eligible for a second transplant got one, but in that year NHS England (NHSE) began evaluating if repeat transplants should still be funded. For the past three years, doctors have had to submit individual funding requests. Some have been turned down and NHSE has since declared second transplants ‘not currently affordable’.
HENNY Braund, chief executive officer of transplant charity the Anthony Nolan Trust, which co-ordinated the petition and is asking the public to write to their MPs, said: ‘This is a step backwards for patients. A transplant costs between £50,000 and £120,000, but the cost of caring for one patient refused a transplant in the past few years was £130,000 for the year they survived, and for another patient who survived three years it was £160,000.
‘Of those who do get a second transplant, one in three survive at least five years, and many are young people leading fulfilling lives and making a contribution to society. Denying those patients a chance of life amounts to a death sentence.’
One of those presenting the protest petition last week was acute myeloid leukaemia sufferer Emily Wellfare, who was told in December she would die if she did not get a second transplant: She said: ‘My consultant at the Royal Marsden Hospital told me it would be the only thing that could save my life. He mentioned he would have to apply for funding, and it never occurred to me it could be refused.’
In February the 25-year-old from Eastbourne was told the application had been refused. ‘My doctors said the hospital was going to give me the transplant anyway. I am so grateful they fought so hard for me, but I want to know why the NHS thought my life wasn’t worth fighting for,’ added Emily.
She was in the second year of a law degree course when she started suffering from incessant coughs and colds in early 2012. In April that year she was diagnosed with acute myeloid leukaemia. After chemotherapy, Emily spent a year in remission before discovering at her routine one-year check-up that her leukaemia had returned. She was told she would need a transplant of stem cells.
Emily had her first transplant in February 2014, following three more rounds of chemotherapy. After nearly two years in remission, it was discovered at the end of last year that her cancer had returned.
Since having her second transplant on March 14, she has been well but has to take various drugs and immuno-suppressants.
Emily was luckier than another patient, a 21-year-old from Nottingham, who was rejected for a second transplant. Dr Jenny Byrne, honorary consultant haematologist at the city’s university hospital trust, said: ‘It was extremely disappointing and frustrating, given that we have plenty of patients in Nottingham who have had second transplants and are long-term survivors.’
A spokesman for NHS England said: ‘The procedure isn’t being funded this year because its low clinical benefit and high cost meant that it compared poorly with other new treatments.’
He added that individual funding requests would be considered where exceptional need and benefit could be provided, and the policy would be reconsidered in 2017.
But Dr Byrne said: ‘It is not true to say individual funding requests for transplants are getting consideration as they are routinely screened out by administrators who claim the cases are not sufficiently unique. It is impossible to demonstrate the level of exceptionality called for.’
A Department of Health spokesperson said: ‘Funding decisions around treatments such as these are rightly for NHS England. We have referred the decision to them.’
In Scotland, the NHS said the change did not directly affect patients. But as a result of the decision in England, the Scottish policy is to be reviewed.
A spokesman said: ‘Given NHS England’s recent policy change, NHS National Services Scotland is reviewing its approach. This would not affect patients that are currently under consideration for a second transplant.’