If I had not been given a stem cell transplant, I would be dead by now. At 22, I was diagnosed with acute lymphoblastic leukaemia, an aggressive form of blood cancer. Doctors told me a transplant of healthy stem cells from an unrelated donor was my only hope. Last month, I was thrilled to celebrate three years in remission. I hope the cancer never returns, but if it does, my only chance of survival will be another transplant. Except this time around, I might not be given that chance.
Two weeks ago, NHS England announced it would stop routinely funding second stem cell transplants for patients who have relapsed more than a year after their first transplant. NHS England, the body which oversees the budget for commissioning NHS services, has ruled that the treatment is “not currently affordable”, even though it was widely available in England before 2013, and is routinely given to patients in Europe and the US.
At a time of critical illness, the process is lengthy, bureaucratic, and extremely stressful
In a letter to The Times Anthony Nolan, the blood cancer charity and stem cell registry that coordinates all donors for UK transplants, joined forces with leading haematologists to condemn the decision, stating that “NHS England is ignoring the advice of the clinical community, thereby effectively handing [most of these] patients a death sentence”. The charity delivered an open letter with 18,000 signatures to Jeremy Hunt last Thursday, calling on him to urge NHS England to reconsider their decision.
The announcement has left me reeling. However healthy I might be right now, I know that my bone marrow is only one misstep away from needing a transplant again. If I relapse tomorrow, I won’t be able to afford private treatment, which can be between £50,000 and £120,000. My only option would be to submit an individual funding request to NHS England, arguing that my case is exceptional and that I have a high likelihood of survival, which justifies the treatment’s price tag.
— Anthony Nolan (@AnthonyNolan) July 27, 2016
Write to your MP.
Tell them that second transplants save lives – they need to be funded.https://t.co/DqtArcku2n pic.twitter.com/IxjSoRm6jk
At a time of critical illness, the process is lengthy, bureaucratic, and extremely stressful. Then comes months of waiting for a panel of expert clinicians to make a decision while their condition deteriorates. Blood cancers are fast-moving and kill quickly, so there would be gruelling cycles of chemotherapy – at great cost to the NHS – simply to keep the cancer at bay.
NHS England’s decision has been in the making for three years, and patients have had to make funding requests since 2013. But until now, with no clear consensus in place, doctors have had greater scope to argue in favour of a patient’s individual circumstances. Now that there is an official policy that the NHS does not fund second transplants, my application would most likely be rejected. I would then be offered palliative care instead – if I didn’t die during the waiting period.
Emma Paine, 29, from Peterborough had to wait four months for funding approval for a second stem cell transplant after she relapsed with myelodysplastic syndrome (bone marrow failure) last year. As a result, her recovery is not going as well as she had hoped. “There’s no doubt in my mind that my health would be better if we’d been able to start the treatment sooner,” she says. “During the waiting period I contracted four serious infections and lost all my muscle mass. I had difficulty sleeping and felt stressed about the decision. Why put a patient through all of that when they’re already ill?”
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NHS England has to make decisions on a cost-per-benefit basis. I understand they believe that patients have a lower chance of survival after relapsing once – they think there is insufficient evidence to support funding this treatment. But Paine, a statistician herself, argues: “This is total guesswork. They’re rejecting people on the grounds of low success rates, but they haven’t got the data to do that, because the numbers of people who have second stem cell transplants are small.” Only about six patients this year in England who have relapsed over a year since their first transplant will have a second one, although this number would be about 16 if they were routinely funded.
Paine points out that the NHS can only gather significant data by funding second transplants for all patients. A recent study conducted in the US, where second transplants are routine, suggested that one in three patients will reach the five-year survival milestone after given this chance.
The NHS England analysis suggests that funding second stem cell transplants could be cost-neutral. If patients do not receive transplants, they are given alternative treatments – further chemotherapy or palliative care – the costs of which are difficult to quantify as they are highly variable and depend on the patient’s circumstances. However, the policy working group of clinicians, commissioners, patients and stakeholder organisations, including Anthony Nolan, which advised NHS England on the decision, looked at examples of two patients who didn’t receive a second transplant. These patients were estimated to have incurred costs of about £130,000 over a one-year period.
A stem cell transplant is a brutal form of treatment – a last resort with side-effects similar to those experienced by nuclear warfare survivors. Waiting to find a matching donor on the register is agonising. In one of the richest countries in the world, no one should have to endure the added trauma of being denied funding for a treatment that could save their life.
Can the NHS really not afford second transplants for cancer patients like me? | Hannah Partos
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