Cancer patient in Northampton launches campaign after funding is cut for drug to treat rare condition

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A cancer patient in Northampton is campaigning against moves to withdraw funding from a drug that could treat his condition.

Richard Bassett, who lives in the town with his partner Victoria Janes, suffers from a rare cancer known as Wildtype GIST (Gastronintestinal Stromal Tumour).

Following the publication by the Government of the lastest Cancer Drugs Funding (CDF) list, the drug regorafenib was removed meaning it will no longer be available to NHS patients.

Ms Janes said the changes would have a devastating impact.

“GIST is a rare type of cancer (a sarcoma) found in the digestive system. Regorafenib is used to treat GIST cancer that has become unresponsive to the existing drugs Imatinib and Sunitinib. It has proved very successful in this situation, stopping the disease growing or causing significant shrinkage,” she said.

“Wildtype GIST, a rare form of GIST often found in younger patients and children, has been shown to respond particularly well to Regorafenib.

“The withdrawal of this drug from the fund means that patients whose GIST cancer is inoperable or has spread widely and is not being contained by the first and second line treatments licensed in the UK will have no other treatment options, and will die sooner than might have been the case when their cancer grows out of control,” she added.

The couple have set up an e-petition to call on the Government to rethink the decision.

“However, we are struggling to gain wide publicity of the issue as larger national cancer charities, such as Macmillan Cancer Support, are unable to promote the issue due to the Lobbying Act 2014. This gagging law prevents third sector organisations, such as charities from campaigning against political parties within one year of a general election.

“Therefore all these charities, regardless of the significant and devastating effects these changes will have, are sworn to silence by law,” Ms Janes added.

“The withdrawal of this drug has far reaching ramifications for rare cancer sufferers; three of the 25 drugs removed from the CDF list are for the treatment of sarcomas.

“Removal of funding for such drugs will lead to a lack of research within this area and very limited progress, if any, in the treatment of these diseases. Furthermore, due to the rarity of these cancers the economic savings made by removing funding will be minimal,” she said.

To sign the couple’s e-petition visit http://epetitions.direct.gov.uk/petitions/73911