25 June 2024 , 04:24
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Hundreds of patients suffering from an incurable blood cancer called myeloma, were this week dealt a gruelling blow by an NHS watchdog after it looked set to stop funding a life-prolonging medication used to treat the disease.
The medication in question, IsaPD, has been shown to improve remission rates by over 12 months. It is currently being taken by around 1,500 patients.
However NHS watchdog, the National Institute for Health and Clinical Excellence (NICE), is now looking to withdraw the life-prolonging medication over its cost. It has now announced its final draft decision to potentially not fund the drug unless this is overturned on appeal.
The hybrid drug, which is made up of three different medications called isatuximab, pomalidomide and dexamethasone, was first rolled out in 2020 through the Cancer Drugs Fund, and was initially aimed at patients experiencing relapsed and refractory multiple myeloma whose cancer has returned three times.
The highly effective treatment was then found to improve remission rates by more than 12 months, offering valuable time to patients to spend with loved ones, reports Gloucestershire Live.
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Yet in a blow to patients taking the medication, changes to the way it is funded could throw access into chaos. Under the draft NICE decision patients suffering from multiple myeloma will potentially miss out on being given the drug which could extend their lives by more than 12 months.
Originally, the Cancer Drugs Fund was set up for NHS patients in England to provide cancer drugs that had previously been rejected by the National Institute for Health and Care Excellence (Nice) because they were not cost-effective to be provided on the NHS.
The treatment was up for review by NICE to decide whether it should be made permanently available to patients across NHS in England and Wales, reports I News. Drugs approved by NICE must be provided on the NHS for suitable patients.
However, IsaPD failed to meet NICE’s affordability threshold with the watchdog ruling that it was too expensive to be made available on the NHS, despite it already being available on the NHS in Scotland since 2021.
The drug has been found to extend life by more than 12 months (Getty)This marks the first time a myeloma treatment approved through the Cancer Drugs Fund has been rejected by NICE for permanent use on the NHS, something which charity Myeloma UK argued sets a "dangerous precedent".
Shelagh McKinlay, Director of Research and Advocacy at blood cancer charity 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 works and has significantly improved people’s quality of life and remission times since 2020. We simply should not be here; where a vital and effective treatment which has been the standard of care for years cannot be approved. The system is not delivering for patients and we mean to challenge it.
“Myeloma UK has been involved in every committee meeting about IsaPD and we believe this decision is flawed. 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.”
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So what exactly is Myeloma?
Myeloma is a form of incurable blood cancer (Getty)Myeloma, also known as multiple myeloma, is a type of blood cancer that impacts the bone marrow and its ability to produce and maintain a healthy supply of blood cells. The exact cause of the condition remains unknown, but there is a strong link between multiple myeloma and a condition called monoclonal gammopathy of unknown significance (MGUS).
MGUS is characterised by an excess of protein molecules, known as immunoglobulins, in your blood. While it typically doesn't cause any symptoms and doesn't require treatment, around 1 in every 100 people with MGUS develop multiple myeloma each year.
There is currently no known method to delay or prevent this, so individuals with MGUS undergo regular tests to check for cancer.
Multiple myeloma is also more prevalent in:
- Men
- Adults over 60 – most cases are diagnosed at around the age of 70, and cases affecting people under the age of 40 are rare
- Black people – multiple myeloma is about twice as common in black populations than white and Asian populations
- People with a family history of MGUS or multiple myeloma
What are the signs and symptoms?
The first sign of myeloma can often be persistent back pain (Getty)In the early stages, myeloma often doesn't present any symptoms. However, persistent bone pain in the back, ribs or hips is usually the first sign of the disease.
According to the NHS, this is often also accompanied by the following:
- Tiredness, weakness and shortness of breath – caused by anaemia
- High levels of calcium in the blood (hypercalcaemia) – which may cause symptoms including extreme thirst, stomach pain, needing to pee frequently, constipation or confusion
- Weight loss
- Blurred vision, dizziness or headaches – caused by thickened blood (hyperviscosity)
- repeated infections
- bruising and unusual bleeding – such as frequent nosebleeds, bleeding gums and heavy periods,
- weak bones that break (fracture) easily – if this affects the spine, it might cause symptoms such as pins and needles, numbness and weakness in the legs and feet, and problems controlling your bladder and bowels, which requires emergency investigation
- kidney problems
Unlike other cancers, myeloma doesn't typically cause a lump or tumour. Instead, it damages the bones and interferes with the production of healthy blood cells.
How is Myeloma diagnosed?
A number of tests are used to diagnose the condition, including blood tests, x-rays and sometimes bone marrow biopsies (Getty)If you're experiencing any symptoms of myeloma, your GP should be your first port of call. They will examine you for bone tenderness, bleeding, signs of infection and any other symptoms that might indicate myeloma. Blood and urine tests may also be arranged.
If myeloma is suspected, you'll likely be referred to a haematologist, a specialist in blood conditions. They will conduct further tests which could include more detailed blood tests, MRI and CT scans, and a bone marrow biopsy.
How is the condition treated?
While treatment can often control the condition for several years, unfortunately, multiple myeloma currently has no cure. However, research is ongoing to find new treatments to completely eradicate the disease.
Typical treatment for multiple myeloma usually includes:
- anti-myeloma medicines to destroy the myeloma cells or control the cancer when it comes back (relapses)
- medicines and procedures to prevent and treat problems caused by myeloma – such as bone pain, fractures and anaemia
For more information and support regarding Myeloma visit Myeloma UK or speak to your GP