CANCER PATIENTS DEALT CRUEL BLOW AFTER LIFE-EXTENDING TREATMENT KNOCKED BACK BY NICE

CANCER PATIENTS DEALT CRUEL BLOW AFTER LIFE-EXTENDING TREATMENT KNOCKED BACK BY NICE 

A new treatment that could improve survival and boost remission by two years for blood cancer patients has been knocked back by NICE. 

The National Institute for Health and Care Excellence (NICE) has turned down the use of daratumumab (Darzalex®) in combination with lenalidomide (Revlimid®) and dexamethasone (DRD) for the treatment of newly-diagnosed myeloma patients who are not eligible for a stem cell transplant. 

Yet, DRD has been shown to improve life expectancy and increase average remission times by two years compared to lenalidomide and dexamethasone alone and is already available in other countries. 

Around two thirds of newly-diagnosed myeloma patients are ineligible for a transplant.  

DRD would have allowed over 3,000 patients to access daratumumab at first line (that is in their first round of treatment) for the very first time.  

Although NICE acknowledged that DRD was effective, its appraisal committee felt it could not accurately assess whether the treatment was cost-effective for the NHS.

NICE said it would review its decision pending further data.

Dr Sophie Castell, chief executive at Myeloma UK, said: “We’re extremely disappointed by NICE’s decision. Approximately two thirds of newly-diagnosed myeloma patients are not eligible for a stem cell transplant, yet they’re being denied a game-changing treatment that has been shown to increase remission times by two years and is already available in other countries. They deserve better. 

“As it stands, only those young or fit enough for a stem cell transplant have access to daratumumab at first line. It’s not acceptable that older and frailer patients are disadvantaged in this way.  

“While this is not a final no and the decision will be reviewed, we can’t ignore the fact that thousands of newly-diagnosed patients will have missed out on DRD and the chance at a longer and deeper remission.  

“We will keep fighting to ensure no patient is left behind. We remain hopeful that an agreement will soon be reached and that DRD will finally be made available to those who need it.” 

Myeloma is an incurable blood cancer which affects 24,000 people in the UK.

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

Around 5,800 people are diagnosed with myeloma in the UK each year.

Half of myeloma patients survive their disease for five years or more.

Only around a third of myeloma patients survive for ten years or more.

Daratumumab has proven a real step change to myeloma treatment. 

Over the past few years, the drug has been introduced earlier and earlier in patients’ treatment pathway with promising results. 

Daratumumab has been available at first line for newly-diagnosed patients eligible for a stem cell transplant across the UK since December 2021. 

Prof Gordon Cook, Consultant Haematologist at Leeds Teaching Hospitals NHS Trust, said: “Daratumumab in combination with lenalidomide and dexamethasone is a ‘game-changer’ treatment in myeloma which prolongs disease control and improves survivorship. I hope that we can have access to this treatment combination in the imminent future for all patients ineligible for a transplant so that as many patients as possible will benefit.” 

WHAT IS MYELOMA?

• Myeloma is an incurable blood cancer that occurs in the bone marrow and currently affects more than 24,000 people in the UK
• On average 16 people are diagnosed with myeloma every day in the UK
• Despite being the third most common type of blood cancer, myeloma is especially difficult to detect as symptoms, chief among them pain, easily broken bones, fatigue and recurring infection, are often linked to general ageing or minor conditions
• While it is incurable, myeloma is treatable in the majority of cases
• Treatment aims to control the disease, relieve the complications and symptoms it causes, increase patients’ life expectancy and improve their quality of life. It generally leads to periods of remission, but patients inevitably relapse requiring further treatment
• Myeloma is the 19th most common type of cancer
• Myeloma mostly affects people aged 65 and over but it has been diagnosed in people as young as 20

10 KEY STATISTICS

• Around 5,800 people are diagnosed with myeloma every year
• Eight people die from myeloma every day
• More than 3,000 people die from myeloma every year
• 74% of people diagnosed with myeloma every year are over 65
• Half of all myeloma patients will survive their disease for five years or more
• Around one third of myeloma patients will survive their disease for ten years or more
• Half of patients face a wait of over five months to receive the right diagnosis and around a third are diagnosed through an emergency route
• A third of myeloma patients visit their GP at least three times before getting a diagnosis
• Myeloma is the third most common type of blood cancer
• Myeloma makes up 2% of all new cancer cases diagnosed ever year

10 MYELOMA RED-FLAG SYMPTOMS

• Persistent or unexplained pain for more than 4–6 weeks, particularly in the back or ribs
• Spontaneous fractures, including osteoporotic vertebral fractures
• Hypercalcaemia (high calcium levels in the blood)
• Reduction in kidney function
• Recurrent or persistent infections
• Unexplained anaemia
• Nosebleeds or unexplained bleeding
• Unexplained breathlessness
• Feeling generally unwell – fatigue, weight loss, suspicion of underlying cancer
• Unexplained peripheral neuropathy, that is damage to the nerves that make up the peripheral nervous system. In myeloma the nerves that are most commonly affected are those of the hands and feet

ABOUT MYELOMA UK

• Myeloma UK is the only organisation in the UK exclusively dedicated to myeloma and related conditions
• We receive no core Government funding and rely almost entirely on voluntary donations and fundraising
• Our ultimate goal is to find a cure and make myeloma history. Until then, our mission is to help every patient live well with myeloma for as long as possible
• We are committed to diagnosing myeloma earlier, discovering and sharing knowledge, transforming the patient experience and influencing positive change in care
• We provide a range of crucial information and support services for patients, their family and friends
• Our free Myeloma Infoline is available on 0800 980 3332, Monday-Friday 9am-5pm (closed weekends and some public holidays)
• To find out more about myeloma and the work of Myeloma UK, visit www.myeloma.org.uk or follow us on Twitter @MyelomaUK and Facebook, facebook.com/myelomauk/