Victory as ‘lifeline’ treatment approved on the NHS in NICE U-turn

The myeloma community has claimed a hard-fought victory after a life-changing treatment was finally approved today – more than two years after Myeloma UK appealed against the unfair decision to withdraw it.

Around 800 people will now have access to IsaPD each year in England and Wales, a treatment which has been shown to keep myeloma at bay for nearly 12 months.

IsaPD was initially rolled out in 2020 through the Cancer Drugs Fund – a pot of money which provides cancer patients in England with faster access to the most promising new medicines pending full approval from drug-approval body NICE.

But it was unexpectedly withdrawn by NICE in June 2024 following a change to the way it assesses treatments. The change meant that IsaPD no longer met the cost-effectiveness threshold to be approved permanently on the NHS.

This was the first time a myeloma treatment approved through the Cancer Drugs Fund had been rejected by NICE for permanent use on the NHS.

Meanwhile, IsaPD was approved by the Scottish Medicines Consortium for use on the NHS in Scotland in 2021.

Myeloma UK immediately appealed the decision.

Five months later, in November 2024, an independent panel upheld the appeal, agreeing that NICE’s process was unfair.

After a nearly two-year campaign by Myeloma UK, NICE’s appraisal committee has now backtracked on its initial rejection and approved IsaPD on the NHS.

Myeloma UK’s appeal against NICE’s decision meant that patients were able to continue receiving IsaPD over the last two years. This is because NICE cannot pull a treatment or prevent new patients from accessing it on the NHS while an appeal is ongoing.

Caroline Donoghue, Access Manager at blood cancer charity Myeloma UK, said:

“The decision has been a long time coming but we didn’t give up. For more than 26 months we fought alongside clinicians and people with myeloma and we’re so pleased that NICE has now done right by patients. It shouldn’t have taken that long.

Myeloma becomes resistant to treatment so people need new drugs that can attack their cancer in a different way each time it comes back. For people with myeloma these delays aren’t just frustrating, they cause increased anxiety about whether the next treatment will be available when their cancer returns.

The good news is that NICE has shown flexibility, truly listened to patients about what they need and we hope that this is a sign of things for the future. As a result of us fighting for IsaPD to be made available, nearly 2,000 people have been able to access this treatment.

Every day counts when you’re living with myeloma and people deserve the best, most effective treatments now. Until we have a cure it is absolutely vital that people get as many options as possible to keep their cancer at bay.”

IsaPD is a combination of isatuximab (Sarclisa®), pomalidomide (Imnovid®) and dexamethasone and aimed at people whose cancer has returned three times.

When IsaPD was first rolled out through the Cancer Drugs Fund, NICE used what is known as an ‘end-of-life modifier’ to weigh up whether a treatment is cost-effective. But in 2022, the ‘end-of-life modifier’ was replaced by a ‘severity modifier’.

Under the new system, IsaPD failed to meet NICE’s affordability threshold for use on the NHS in England and Wales.

Myeloma is an incurable blood cancer which currently affects over 35,000 people in the UK. 

It is a relapsing-remitting cancer, meaning that although many people will experience periods of remission following treatment, the disease will inevitably return.  

Mira Mohideen, from Stanmore, was 58 when she was diagnosed with myeloma in 2018.

She is among the patients who would have missed out on IsaPD had Myeloma UK not appealed against NICE’s decision to withdraw it.

By the time she started IsaPD in May 2025, her cancer had come back three times and she was fast running out of treatment options.

Over a year on, the mother-of-two is still in remission and has hailed IsaPD as a “lifeline”.

“It’s been a lifeline,”

said Mira, now 66.

“It’s one of my best remissions so far. I feel like I’ve been given a chance. This approval feels like a huge win and I’m glad people will benefit from it the way I have. This treatment has really worked for me, it’s been easy to take, and I’ve had limited side effects, which is really important.

I feel very grateful and lucky: without the appeal it would not have been an option for me.”

Mira’s cancer was picked up by chance in summer 2018 after a routine blood test flagged high iron levels. Within days she was referred to a haematologist and formally diagnosed with smouldering myeloma. It later progressed to active myeloma.

By the time she was diagnosed, the cancer had started eating away at her bones and she had two holes, known as lesions, in her right hip bone and left thigh.

“It came as a shock,”

said the charity worker.

“I had never heard of myeloma. The scans revealed there were two lesions attacking my bones. They weren’t sure but they thought I could have had it for a year. I asked what my life expectancy was and they said five years, which really upset me because it’s an average and a lot of people are diagnosed with myeloma in their 80s. I remember telling my husband, ‘I will never see grandchildren’. It was a difficulty for my family. My two daughters were at university and in the middle of exams. The hospital gave me Myeloma UK booklets with information about myeloma and my first treatment, which was really helpful.

I used to be very scared,” added Mira, whose daughters are now 28 and 31. “I thought, ‘I’m going to die’. I used to wake up thinking about it and going to sleep thinking about it. But now I don’t. I take it in my stride and get on with it.”

In January 2019, she enrolled in a clinical trial at University College Hospital and began treatment. A year later she received a stem cell transplant.

Over the next six years she whizzed through treatments, but none managed to keep her in remission for very long.

When her cancer came back for the third time in May 2025, she was offered IsaPD. Since then, she has experienced one of her “best remissions” to date.

Mira is now determined to make the most of the time she’s been given and create memories with her daughters and husband.

“I’m hoping that my myeloma doesn’t flare up, that this treatment keeps it under control and that I get to live a normal life,”

she went on.

“I used to be a bit scared to plan holidays but now I’m not. I feel very lucky in lots of ways. It’s been very difficult emotionally but I’ve become very strong and I have a very supportive family. I’m still working. I’ve been able to travel. We recently went to Vietnam and Cambodia. So many new treatments have become available just in the last year – it’s fabulous. I’ve met people who have had myeloma 15 years, 20 years and it gives me a lot of hope.”

What about patients in Scotland, Wales and Northern Ireland?

In Scotland, the Scottish Medicines Consortium makes decisions about which treatments to fund through the NHS. The SMC approved IsaPD for use through NHS Scotland in April 2021.

In Wales, the All-Wales Medicines Strategy Group (AWMSG) makes decisions about which treatments to fund through the NHS. It usually follows NICE decisions.

In Northern Ireland, the Department for Health makes decisions on which treatments to fund through the NHS. It can follow guidance issued by either NICE or the SMC but usually follows the guidance issued by NICE.

What is the Cancer Drugs Fund?

The Cancer Drugs Fund (CDF) is a pot of money which helps cancer patients in England get faster access to promising new drugs.

NICE can approve a treatment through the CDF when it shows promising results in trials but there isn’t enough evidence to permanently recommend it.

After a period of two years, NICE reconsiders the medicine and makes a final decision whether to recommend it or not.