Anger as blood cancer patients dealt huge blow over new treatment
Isatuximab plus pomalidomide and dexamethasone has been given to certain patients with myeloma
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Your support makes all the difference.Patients with incurable blood cancer have been dealt a huge blow after a treatment was not recommended for use on the NHS in England.
Isatuximab plus pomalidomide and dexamethasone – also known as IsaPD – has been given to certain patients with myeloma, which develops in the bone marrow, since 2020.
It was available on the NHS through the Cancer Drugs Fund, which funds cancer medicines in England while they await approval from the National Institute for Health and Care Excellence (Nice).
However, Nice has now issued final draft guidance on IsaPD, saying the cost of the drug is “considerably higher” than what it “considers an acceptable use of NHS resources”.
According to Myeloma UK, about 1,500 patients have benefited IsaPD since it was made available.
Shelagh McKinlay, director of research and advocacy at Myeloma UK, said: “This decision is a huge blow and many patients will rightly feel like the rug has been pulled from under their feet.
“It sets a dangerous precedent, not only for people with myeloma but also for other conditions because Nice has suddenly moved the goalposts.
“Every day counts when you’re living with myeloma because only one thing is certain: myeloma will always come back. This means patients need the best, most effective treatments now.”
IsaPD was recommended for patients who had had at least two other therapies and had shown progression since their last treatment.
It is administered as an infusion, with a 100mg/5ml solution costing £506.94 per vial and a 500mg/25ml solution costing more than £2,534.69 per vial.
The manufacturer had a commercial agreement, which would have been applied if the drug had been recommended.
The decision by Nice will not affect patients on IsaPD treatment that was funded before the draft guidance was published.
Ms McKinlay added that it “significantly improved people’s quality of life and remission times since 2020″.
“Myeloma UK has been involved in every committee meeting about IsaPD and we believe this decision is flawed,” she added.
“We will be submitting an appeal, and we won’t rest until IsaPD is available to everyone who needs it, no matter where they live.”
One patient, Nigel Spencer, was diagnosed with myeloma in 2018 when he was 59.
He has been on IsaPD since 2021.
“When you are diagnosed with myeloma your perception of the future changes forever, which is a traumatic experience,” Mr Spencer said.
“My attempts to frame the situation in a positive way have been based on a knowledge that there are a range of treatment paths available. However, moving through the treatment lines can see hope turn to anxiety.
“Therefore, any removal of access to an effective treatment option inevitably affects the psychological wellbeing of all myeloma patients at all stages of treatment and directly leads to a substantial reduction in their quality of life.”
According to Myeloma UK, the disease currently affects more than 24,000 people in the UK with about 5,900 people diagnosed every year.
It mostly affects people over the age of 65, with symptoms including persistent bone pain, tiredness, shortness of breath, repeated infections and high levels of calcium in the blood.
Nice has given a number of treatments for myeloma the green light this year.
In May, it recommended selinexor with dexamethasone and selinexor with bortezomib and dexamethasone for patients who had undergone previous treatments.
Earlier this month Nice also issued final draft guidance recommending Elranatamab for myeloma after three or more treatments had failed.