Yahoo News Early warning signs of incurable blood cancer as NHS watchdog withdraws vital treatment
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.
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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.
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.”
So what is Myeloma?
Myeloma, sometimes also called multiple myeloma, is a type of blood cancer that affects the bone marrow and its ability to properly produce and maintain a healthy supply of blood cells.
The exact cause of the condition isn’t known, however, there is a close link between multiple myeloma and a condition called monoclonal gammopathy of unknown significance (MGUS).
MGUS is where there is an excess of protein molecules, called immunoglobulins, in your blood. This doesn't usually cause any symptoms and doesn't need treatment, but every year, around 1 in every 100 people with MGUS go on to develop multiple myeloma.
There is no known way to delay or prevent this, so people with MGUS will have regular tests to check for cancer.
Multiple myeloma is also more common 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 its early stages, myeloma often has no symptoms at all, but the first sign of the disease is usually persistent bone pain in the back, ribs or hips.
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
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 forms of cancer, myeloma doesn’t usually cause a lump or tumour, and instead damages the bones and affects the production of healthy blood cells.
How is it diagnosed?
If you are experiencing any of the symptoms of myeloma, your first point of call is usually your GP, who will examine you to check for bone tenderness, bleeding, signs of infection and any other symptoms that suggest you might have myeloma. They may also arrange blood and urine tests.
If myeloma is suspected, you’ll usually then be referred to a specialist in blood conditions called a haematologist, who will undertake further tests which may include more detailed blood tests, MRI and CT scans, and a bone marrow biopsy.
How is it treated?
Treatment can often help to control the condition for several years, but sadly, at the moment multiple myeloma can't be cured. Research is however ongoing to try to find new treatments to help eradicate the disease once and for all.
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
