Member News
By John Leech MP - 1st November 2010
John Leech MP writes for ePolitix.com following his Westminster Hall debate on Myelodysplastic syndrome (MDS) and rarer cancers.
I immersed myself this week in the world of Health Technology Assessments and Quality Adjusted Life Years and a plethora of acronyms that could daunt even an MP or a Civil Servant on one of their few off-days. I must admit I await with some trepidation the promise by health minister Paul Burstow to send me the details of the statistical formula used to calculate the cost effectiveness of drugs in NICE evaluations as I fear it may not make light bed-time reading.
But I did so because I am adamant that patients of rarer cancers are being very poorly served by NICE appraisals and as we come to evaluate the new proposals for the NHS it is vital that as MPs we get to grips with the implications of these topics. I was also helped enormously by MDS UK's new 'Rarer Cancer MP's toolkit' which informs both MPs and constituency staff of all they might possibly need to know about NICE appraisals and the processes of gaining access to cancer drugs for their constituents.
NICE is often the scapegoat for MPs and charities all of whom accept that the NHS is not a bottomless wallet and that not every expensive treatment can be funded, but who are convinced that this particular drug must be made the exception. Yet as I found out about Azacitidine and MDS and about the unlevel playing field for rarer cancers in general, I am adamant that it is right and just to call for more to be done for this particular set of patients.
Azacitidine is normally the only treatment option for sufferers of MDS (a life-threatening blood cancer that affects the bone marrow), with the only other option being 'best supportive care' - treating the symptoms. For many patients the difference is between living a relatively normal life or suffering debilitating symptoms and it can also greatly increase life expectancy.
Drugs for very small patient groups are inevitably hugely expensive due to the high cost of development compared to the relatively few number of sales that will be made. I do accept that there has been some recognition by NICE of this problem but it is clear that the introduction of Patient Access Schemes and End of Life Criteria have not solved the problem. As the only treatment available for MDS, Azacitidine has a huge incremental value to the patient and this must be taken into account by NICE.
I am calling for three changes to be made. Firstly I want NICE to change its methodology to take account of orphan drug status. Secondly, if NICE's methodology takes time to change it is vital that the government ensures that the recently announced Cancer Drug Fund will be used to fund drugs such as Azacitidine and provide quality of life and hope to the thousands of sufferers of MDS and similarly rare conditions. Thirdly I want the government to ensure that the move to value based pricing due to come into effect in 2014 will be designed to ensure that drugs for rare cancers will be funded properly in the future.
Further information: Readers may be interested in MDS UK's brief on funding for rarer cancers and for Azaciditidine or in their rarer cancer's MP's toolkit which gives not only information but also advice to both MPs and their constituency staff on how to gain access to funding for their constituents. Both are available from MDS UK at: mds-uk@mds-foundation.org or 020 7733 7558 or via John Leech's office (Leechj@parliament.uk, 020 7219 8353). They may also be interested in the HoC Library's recent POST leaflet on Drug Pricing and the move to value based pricing, available from the library at http://www.parliament.uk/documents/post/postpn_364_Drug_Pricing.pdf
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