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New decisions about you, without you

PhilHunt01.jpegPhil Hunt on the human impact of the government’s changed policy towards rare cancer sufferers

Brought in by the Coalition to get round NICE’s rejection of many cancer drugs, the Cancer Drugs Fund (CDF) is now in serious trouble. A budget over-run last year has caused a panicked response by NHS England - including a very crude process to save money by de-listing drugs the CDF had previously approved. Patients currently getting these drugs will continue to have them funded by the NHS, but it will be denied to others with devastating consequences.

One glaring example is the drug Regorafenib, which was approved only last year as the third line treatment for patients with advanced Gastrointestinal Stromal Tumour (GIST) – a rare type of cancer found in the digestive system. It has successfully proved its value, particularly for younger people with a rare form of ‘Wildtype’ GIST, where existing drugs are unresponsive in stopping disease growth or causing significant shrinkage. It is also better tolerated by patients.

This makes a mockery of the pledge made by NHS England that no drug would be removed where it is the only systematic therapy for the indication in question. Regorafenib’s withdrawal from the CDF means patients whose GIST is inoperable, or has spread widely and is not contained by alternatives, have no other available options for treatment and may die sooner than they would have. 

Of the other drugs deleted from the CDF, two identified by Sarcoma UK show how flawed the process is. Pazopanib: for the treatment of advanced soft tissue sarcoma. And, Pegylated Liposomal Doxorubicin: for first and second line treatment of angiosarcoma, and first line treatment of sarcoma of the heart and great vessels. The clinicians of patients who need these drugs are are appalled that recognised lifelines are being cut. Lindsey Bennister, Chief Executive of Sarcoma UK, has said:

“This is a huge backwards step for sarcoma patients who already face limited treatment options, poor survival rates, and one of the lowest patient experience of any types of cancer. It is a major blow for patients and for their clinicians who now have even fewer options available with which to treat their patients.”

An appeals process is currently taking place but it is paper based with no oral hearings, and will shockingly not allow patients affected by the decisions to make their case directly. Appeals have to be in by next week but can only be made by the pharmaceutical company whose drug has been excluded from the CDF approved list. Equally worrying, the complaints system to deal with issues not covered by the review process also excludes the public. 

It’s extraordinary that patients, their families and patient groups are wholly barred from making a complaint or asking for a review. Yet, it will be them who suffer most from the exclusion of these and other drugs. A far cry indeed from the “No decision about me, without me” mantra parroted regularly by Ministers in the early years of this government.

Labour is pledged to create a new annual Cancer Treatments Fund, to improve access to not just the latest drugs but also the latest forms of radiotherapy and surgery that are too often not available for thousands of people with cancer. In the meantime, NHS England should call a halt to the CDF process and ensure patients have a clear opportunity to ask for decisions to be overturned.

Lord Phil Hunt of Kings Health is Shadow Health Minister in the House of Lords. He tweets @LordPhilofBrum

Published 3rd February 2015

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commented 2015-03-24 16:50:50 +0000
Just hope labour stick to there word if they get in government and support us with family and friends who have rare cancers and sort this despicable situation out
commented 2015-02-05 21:35:16 +0000
Only today the news stated over half of us will get cancer. Anyone facing this unenviable journey will need hope, don’t take that away.

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