Dear (name of MP)
I would like to raise an issue with you about the availability of new drugs. I (or eg my partner) have had multiple myeloma for ….. years now. I have had (list the treatments you/my partner etc have had eg how many different drugs, SCT, allo etc).This has been very wearing both physically and mentally. MM is incurable, but is increasingly treated as a chronic disease. However, there are quite large numbers of us who are very reliant on new procedures and drugs coming out to keep us alive. Many of us have more intractable or rare forms of disease, are too old to have certain treatments, such as transplants, or find that certain types of drug treatments do not work well.
(Explain a bit about your current situation eg on or off a drug, experiencing side effects, levels rising, drug not working etc). Most of us come to a point when all the existing treatments have been tried and have failed, resulting in a relapse.
A new drug called Daratumumab (Darzalex®) might help us. However NICE has issued draft negative guidance on it. It is already in use in the US, various other countries like Japan and was given an accelerated licence by the EU (2016) which demonstrates the importance other licensing bodies have attached to it. Very recently Scotland has licensed it. As it is a new and different type of drug from the ones currently in use, it has proved very effective in people who are now resistant to other types. This is how the granting of the EU licence was described by Myeloma UK:
‘The licence application is based on the Phase II Sirius trial, which looked at single agent daratumumab in 90 myeloma patients. The trial results found that, when used on its own, daratumumab had a very beneficial effect on myeloma patients in terms of both response level and the length of remission (i.e. the length of time patients have without their myeloma returning). It has been shown to be particularly effective in multiply relapsed patients.’
Myeloma UK was very disappointed with the NICE decision, which I think appears to be basing its evidence on early and limited data. I am afraid that our suspicion is that NICE is effectively rationing the drug and that will basically lead to the early deaths of many of us, for whom there is little alternative.
Dr Graham Collins a consultant haematologist at Oxford University Hospitals wrote in a recent article on blood cancers in the Daily Mail ‘… with other types of blood cancer, like myeloma, there is still a long way to go.
‘And while new drugs don’t always mean better drugs, the UK falls behind the U.S. and the rest of the world when it comes to accessing new (and often expensive) chemotherapy drugs for these patients.
‘We are not currently giving myeloma patients the best possible treatment. It is very frustrating and people are dying needlessly early because of this.’
His views are shared by many consultants, who are desperate for access to this drug for their patients.
I would be very grateful if you could petition the Dept of Health on behalf of myself and others (probably several hundred at the very least and maybe many more) who are in great need of this important new drug and to consider licensing other new drugs and treatments as they become available.