Just seen this on face book about the denial of ponatinib by the CDF a
Ponatinib Access: Denied
by Kris Griffin
14 patients who requested ponatinib (from April 2013 to March 2015), just 2 of them were granted access to the drug and the other 12 were denied.
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Kris Griffin | April 9, 2015 at 1:34 pm | http://wp.me/p2guSN-9b
Kris is correct in pointing out the abysmal success rate of Cancer Drugs Fund Individual Funding Requests (ICDFRs), made within overall Cancer Drugs Fund (CDF) procedures, for the treatment of CML in cases where the T315i mutation is not detected in applicants.
This situation is unfortunately not unusual for ICDFRs made for any cancer drug in England. You can see the success rate of all ICDFRs here http://www.england.nhs.uk/ourwork/pe/cdf/ (scroll down the page to the quarterly figures, select a quarter and then open the ICDFR table) although figures for the number of ICDFR applications made on a drug by drug basis are only obtainable via a FOI.
For CML patients in England this is even more frustrating should they be aware of the situation in Wales where ponatinib is available to all CML patients whose doctors recommend treatment with ponatinib within the terms of its license.
With the current extension of the CDF due to expire at the end of March next year, the outcome of the Innovative Medicines and MedTech Review (whose Terms of Reference https://www.gov.uk/government/news/review-into-medical-innovation-and-te... span the much wider area of regulation, assessment, reimbursement and uptake processes for medicines) will be crucial in the development of a comprehensive architecture for a drug’s passage ‘from bench to bedside‘ over the next decade.
CMLSG via its membership of patient organisation coalitions (Cancer 52, Rarer Cancers Foundation, Rare Disease UK, Genetic Alliance and the Cancer Campaigning Group) is actively involved in attempts to influence not only the outcome of the Review but also, more specifically, the future funding of cancer drugs which of course involves the CDF.
One issue of particular interest to CML patients in England will be the publication of an algorithm for drug based treatments following an unsuccessful application made by leading clinicians last year.
http://www.england.nhs.uk/wp-content/uploads/2014/08/ncdf-summ-cml.pdf
NHS England has committed to publishing algorithms for all chemotherapy over the course of 2015/16 and we remain hopeful for an outcome that will result in access to treatments for CML being closer than currently to the consensus of expert clinical opinion across the EU (see link below).
http://www.leukemia-net.org/content/leukemias/cml/recommendations/e8078/...
As ever the key issue for drugs for CML is not their clinical effectiveness but their cost.
Placed in the context of the CDF, its worth noting that the CDF accounted for £110 million of the £149 million specialised commissioning overspend over the first 10 months of the 2014/15 financial year (see link below Section 5 & Annex A)
http://www.england.nhs.uk/wp-content/uploads/2015/03/item13-board-260315...
All chemotherapy falls within specialised commissioning which in turn is part of NHS England’s Directly Commissioned Services portfolio.
It is for this reason, and others, that CMLSG supports a more radical approach to securing a long term future for cancer drugs than simply another increase in the CDF’s budget.
