A senior NHS consultant, a former gynaecologist and a mother of three who all suffer from a rare blood cancer have been denied life-saving stem cell transplant operations because the NHS may be forced to pay for a drug that protects healthy people against HIV.
The three have undergone months of gruelling chemotherapy to prepare their immune systems for the operations but have now been told that the procedures will not go ahead.
NHS England decided to reassess their treatments after the High Court ruled last month that it must consider paying for the HIV drug.
It will cost an estimated £10m-£20m a year to pay for the HIV treatment, which is known as pre-exposure prophylaxis (Prep). This is a prevention strategy that involves people who are HIV-negative but at a high risk of infection taking a daily pill.
Although the HIV treatment has been hailed as a “game-changer” in the battle against the disease, some argue that priority should be given to those who are already ill rather than those who might become sick.
NHS England, which last week went to the Court of Appeal in an attempt to overturn the decision, argues that local authorities should foot the bill.
A ruling on the appeal is expected within weeks, but will come too late to prevent the anguish being suffered by the three patients, who fear that not having the treatment will shorten their lives.
Sandra Redshaw, 51, who has three sons aged seven, 13 and 14, was diagnosed with a rare blood cancer, Waldenström’s macroglobulinaemia (WM), which affects about 4,000 people in Britain, when she was pregnant with her second child.
She was wrongly told that the condition, which develops when a type of white blood cells becomes abnormal and grows out of control, would remain dormant but it resurfaced in 2010.
After unsuccessful drug treatment Redshaw, from Hartley, in Kent, underwent an operation to harvest her stem cells in June before she and her family travelled to France on holiday ahead of the operation.
“When I came back I was told the transplant was on hold,” she said.
“I haven’t asked how long I’ve got. I’m a head in the sand kind of person, but no one would put themselves through this kind of stress voluntarily. It is very emotional and very difficult.”
Harriet Scorer, 56, a single mother from Henley-on-Thames, Oxfordshire, who works as a pharmacy consultant and was previously a gynaecologist, said: “I was told point blank that because the NHS would probably have to fund Prep, they could not now put me through stem cell treatment.
“I am self-employed. I have taken time off work, which I can’t afford, and the only reason I have gone through this aggressive treatment, which has made me very sick, is to get me to transplant stage.
“Because I’m a doctor I know that the long-term consequences of this chemotherapy are an increased risk of secondary malignancies.
“I was told I would be fully fit by Christmas. Now I may just get two years’ survival.”
The NHS consultant, who has three children aged five, 10 and 13 and who asked not to be named, said: “I have endured six months of chemotherapy. I have worked for the NHS for 19 years, I could work for it for another 19 years if I was able.
“It saddens me that I can’t access the recommended treatment for me. The psychological impact on me and my wife has been considerable.”
The case illustrates a growing problem of patients being pitted against each other as the NHS wrestles over how to spend its dwindling pot of money.
Ben Bradshaw, the Labour MP and former health minister, said: “If it is true that patients are being told this, that is cruel and totally unacceptable behaviour on the part of those telling them and on the part of NHS England for trying to play one group of patients off against another.
“We know that the government is not providing the NHS with enough resources but funding decisions should always be based on clinical need and the effectiveness and overall benefit of the treatment concerned.”
After an annual review NHS England said in July that it would fund 18 treatments pending the High Court decision about Prep. These included stem cell transplants for WM patients, which had been in use since 2006 and which costs about £25,000 for specialist nursing.
After it lost the case, however, it said the nine treatments in the bottom two of four levels, including the stem cell transplants, a drug that helps children with cystic fibrosis to breathe and prosthetics for lower limb loss, would be reassessed next month with a final decision announced in November.
“Given the ruling, NHS England cannot now confirm funding for those treatments and services in levels three and four,” it said.
“This is to ensure that sufficient funding remains available for Prep should it be prioritised in the event that the Court of Appeal upholds the judge’s decision.”
The case against NHS England was brought by the National Aids Trust, which argues that Prep should be considered for use by the NHS as with any other treatment.
HIV charities and some healthcare campaigners are angry at the way funding for Prep has been portrayed as a threat to other treatments.
“It is deeply misleading and disrespectful to all patients,” said Michael Brady, medical director of the Terrence Higgins Trust, the Aids and HIV charity.
Jeremy Taylor of National Voices, a coalition of 160 health charities, said the case illustrated the need to improve the system that NHS England uses to choose which treatments to provide.
“The NHS has to raise its game. It needs a prioritisation process built on a sound ethical policy and to conduct that process and communicate outcomes in a mature, respectful manner,” he said.
In a recent letter about the suspension of the treatments, a number of charities, including Waldenström’s Macroglobulinaemia UK, said: “In suspending access to these treatments due to the legal ruling, NHS England is pitting one population of patients against another, which is hugely unfair to patients on all sides.”
University College Hospital in London, which is believed to be treating all three patients, confirmed that stem cell transplants for WM patients were currently unavailable.
A spokesman said the hospital was seeking to negotiate individual funding requests, but Redshaw and Scorer have been told that theirs have been rejected.
NHS England said: “Given the NHS has never had unlimited funding, it’s always been necessary to decide which are the best new treatments to fund and that’s what happening here.
“In the real world there’s no escaping the fact that if an extra £20m is spent on one particular new drug, it won’t be available for other treatments. That’s why there is a sensible, transparent process where doctors and patient representatives weigh the evidence about where best to invest the NHS’ growing budget.”