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Myeloma Awareness Week

written by

Leukaemia Care, Charity

  • Deborah and rogelio

From the 21st – 28th June it’s Myeloma Awareness Week, a week dedicated to raising awareness of myeloma, what it is, what it’s like to live with and what support is available to myeloma patients and their families.

What is myeloma?

Myeloma is a blood cancer that affects the plasma cells, a type of white blood cell which is made in the bone marrow (the spongy tissue found inside bones). Usually, new plasma cells are created to replace older cells in a controlled, orderly way. They produce antibodies to help fight infection. When someone has myeloma, this process gets out of control and irregular amounts of plasma cells are produced releasing only one type of antibody (known as paraprotein) which is unable to fight infection properly.

Myeloma affects multiple places in the body where bone marrow is normally active in an adult (which is why it is sometimes called multiple myeloma). The bones of the spine, skull, pelvis, the rib cage and the areas around the shoulders and hips are usually affected. The most common symptoms of myeloma include bone pain, anaemia, frequent infections, fatigue, kidney problems, unexplained weight loss, unusual bruising and loss of appetite.

Most people have never heard of myeloma but there are over 5,400 patients diagnosed with the blood cancer each year – making it the 17th most common cancer in the UK. Myeloma is more common in African-Caribbean people than in Caucasian people. Most people diagnosed are over 60 and although it is rare in people under 40, it can affect anyone.

Usually, myeloma is treated with chemotherapy, steroids and biological therapies but at present, myeloma is not curable, only treatable. Myeloma is a relapsing and remitting type of cancer which means that patients will go through periods of remission following treatment (no longer showing signs of the myeloma) but will need more treatment again if they relapse.  It is therefore important that new, effective treatment for myeloma is readily available to all patients as and when they require it.

Access to blood cancer drugs

Recent policy changes that have affected the way that drugs are appraised and funded for routine use in England could see many NHS patients in England with a rarer cancer (like myeloma) miss out on life-extending treatment. We have launched our Cancer Lottery campaign to challenge the way that drugs are assessed for patients in England and to encourage a fairer system so that patients have the drugs that they need, when they need them.

Previously there has been a separate pot of money to fund clinically effective drugs (that could not be recommended by NICE) via the Cancer Drugs Fund but these recent policy changes mean that this will no longer be an option.   

All cancer drugs are appraised through NICE’s standard appraisal method. Because of this, many drugs developed to treat rarer cancers (like myeloma and other blood cancers) will fail to show that they are clinically and cost effective enough to be a good use of the NHS budget. This is largely because the existing methodology used by NICE to assess drugs is limited when dealing with drugs for small patient populations (because there is often not enough clinical trial data available). 

In 2011, the Cancer Drugs Fund (CDF) was created to help remedy this unequal process, funding clinically, life-extending drugs that had not been successfully recommended during the NICE appraisal process. Having benefitted over 84,000 patients since it was introduced, by 2015 the CDF had overspent. Many drugs were taken off the CDF list in an attempt to help rectify the situation. Two myeloma drugs, lenalidomide and pomalidomide, were among those to have their funding stopped (for new myeloma patients). 

Following a further review and a consultation period it was decided that from July 1st 2016 the CDF process will be moved to the beginning of the NICE appraisal process to temporarily fund drugs whilst more data is being collected to confirm their clinical effectiveness. The drugs will be funded for up to two years (in the main) and there will now be clear exit criteria (to prevent drugs from being funded this way indefinitely).

Other rare cancer drugs that remained on the original CDF list are to be reviewed and appraised over the next eighteen months through the new system (which retained the old methodology). They will either be recommended (and funded by NHS England) or they will not be funded at all (for future patients). Bortezomib is one of the drugs due to reconsidered. Bortezomib is a type of biological therapy called a proteasome inhibitor and is currently on the CDF for relapsed myeloma patients who had not utilised the drug before – the upcoming review could mean it would no longer be available to patients who relapse in the future.

Although patients who are already receiving treatment affected by these policy changes will continue to do so, the changes could affect their future treatment options (should their current one stop working and they need a new line of treatment) as well as new patients that have yet to be diagnosed.

Join our campaign Leukaemia CARE believes that every blood cancer patient has a right to fair and equal access to the most effective treatments available. To help ensure blood cancer patients in the UK can access the life-saving drugs they need and end this “Cancer Lottery”, we are encouraging people to get involved by signing our petition and sharing the campaign on social media.