As NHS watchdog NICE announces its decision not to fund a life-prolonging cancer drug for blood cancer sufferers, we take a closer look at some of the signs and symptoms of the incurable condition
Hundreds of patients battling an incurable blood cancer known as myeloma have been dealt a devastating blow this week after an NHS watchdog withdrew a life-extending medication used to treat the disease due to cost issues. The drug, IsaPD, had shown to improve remission rates by over 12 months and was being taken by around 1500 patients when the decision was made to withdraw it over its price.
This hybrid medication, composed of three different drugs – isatuximab, pomalidomide and dexamethasone, was first introduced in 2020 through the Cancer Drugs Fund. It was initially targeted at patients experiencing relapsed and refractory multiple myeloma whose cancer has returned three times.
The highly effective treatment was found to extend remission rates by more than 12 months, offering precious time for patients to spend with their loved ones.
However, changes to the way it is funded have thrown access into disarray, as the medication has since been withdrawn from the fund meaning no one is available to pay for it, reports Gloucestershire Live.
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Originally, the Cancer Drugs Fund was established 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 deemed cost-effective for provision 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, as reported by I News. The NHS is legally obliged to fund medicines recommended by the watchdog.
However, IsaPD didn’t make the cut according to NICE’s affordability criteria, leading to a decision that deemed it too costly for NHS provision, despite its availability on the NHS in Scotland since 2021.
This marks a first in myeloma treatment history, with a drug approved via the Cancer Drugs Fund being turned down by Nice for routine NHS usea move Myeloma UK claims could set a ‘dangerous precedent’.
Shelagh McKinlay, Director of Research and Advocacy at Myeloma UK, expressed disappointment: “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.”
So what exactly is Myeloma?
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?
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?
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
