17th October 2-4pm, Meeting Grimond Room Portcullis House
Mesothelioma sufferers and their families will lobby Parliament on the 17th October 2-4pm at the Grimond Room, Portcullis House, to demand funding for treatment with the chemotherapy drug, Alimta (pemetrexed disodium).
Alimta was provided by its manufacturers for free through the NHS to mesothelioma sufferers during extensive clinical trials. Alimta was found to be clinically effective and has therefore been licensed for use in mesothelioma. Alimta is the only licensed treatment for mesothelioma.
NICE (the National Institute for Clinical Excellence) in their final appraisal of Alimta, has independently found that Alimta is effective for the treatment of mesothelioma, but that it is too expensive. As a result the PCTs (Primary Care Trusts) that pay for most NHS treatment will probably cease to fund treatment with Alimta.
Even now the current limited availability of Alimta means that mesothelioma patients are subjected to one of the worst forms of ‘post code lottery.
Mesothelioma sufferers, their doctors, nurses and asbestos victims support groups are demanding that all mesothelioma sufferers have the option of treatment with Alimta.
If the NICE decision is not overturned then some but not all mesothelioma sufferers will be able to claim the cost of treatment with Alimta in compensation claims (See the case of Dahele v Thomas Bates and Son Limited). However, most will not be able to afford private treatment before their case is settled In this way clinical treatment and the length and quality of life depends more upon the uncertainties of litigation than upon clinical needs.
Dr Jeremy Steele of St Bartholomew’s Hospital says:
"Alimta with Cisplatin is the only licensed treatment for mesothelioma. It is available throughout the EU. It seems quite wrong that UK patients are denied it. It is not a cure but can improve the quality and length of life. This treatment has been tested in a very large research trial. NICE is wrong to say that Alimta needs further testing before it can be funded. Testing will delay availability for years with obvious consequences for those affected."
An appeal of the NICE decision will be heard at 10am on the 27th October at NICE’s offices in London.
Lobby of Parliament
A lobby of Parliament has been called by the Forum of Asbestos Victims Support Groups, and is supported by the All Party Asbestos Sub-Committee (Chair, Michael Clapham MP). For information about the lobby of Parliament on the 17th October contact Andrew Morgan.
Notes:
- Alimta received a license for the treatment of mesothelioma at the end of 2004. Alimta (administered with cisplatin) is the only licensed drug for the treatment of mesothelioma. NICE accepts that it is effective in prolonging life on average by 3 months, and can in some cases prolong life by a year or more. NICE also accepts that it is effective in palliating symptoms and improving quality of life.
- NICE uses a formula to determine the cost effectiveness of drugs and says that according to the formula Alimta is too expensive. But clinicians say that the figures used by NICE are inaccurate and important factors are not taken into account. Only about 50% of mesothelioma patients are recommended for treatment with Alimta. On average, patients have 5 cycles of treatment rather than the full complement of 6, so that the average cost is only about £6,800 per patient.