This article is from the source 'bbc' and was first published or seen on . It will not be checked again for changes.
You can find the current article at its original source at http://news.bbc.co.uk/go/rss/-/1/hi/wales/south_west/6991269.stm
The article has changed 3 times. There is an RSS feed of changes available.
| Version 1 | Version 2 |
|---|---|
| Patient's fight for cancer drug | Patient's fight for cancer drug |
| (about 1 hour later) | |
| The family of a cancer sufferer have gathered 3,000 names on a petition over a refusal to fund a drug that could offer a chance of prolonging his life. | The family of a cancer sufferer have gathered 3,000 names on a petition over a refusal to fund a drug that could offer a chance of prolonging his life. |
| John Beynon, 58, who has liver cancer, applied for treatment with Sunitinib after other medications failed. | John Beynon, 58, who has liver cancer, applied for treatment with Sunitinib after other medications failed. |
| But Neath Port Talbot Local Health Board said it would not fund the drug because it had not been approved. | |
| Mr Beynon's daughter Sian Thomas, of Aberavon, said: "It's as if they're playing God. It's not fair." | |
| The family are now appealing against the decision, but fear time is running out. | |
| Without the drug, which is also known as Sutent, Mr Beynon has been given between six and 18 months to live. | |
| They are putting all these millions into funding cures for these things and then they say no, you can't have it John Beynon | They are putting all these millions into funding cures for these things and then they say no, you can't have it John Beynon |
| The father-of-three, who lives with his wife Avril, was told there was nothing doctors could do for him when he was initially told he had tumours on his liver. | The father-of-three, who lives with his wife Avril, was told there was nothing doctors could do for him when he was initially told he had tumours on his liver. |
| But he has survived for four years after being treated with the drug Glivec. | But he has survived for four years after being treated with the drug Glivec. |
| That medication is no longer working and his family say his oncologist applied for funding for treatment with Sunitinib - which, while not a cure, can prolong life. | |
| The drug was licensed for the UK last summer and is currently being reviewed by the National Institute for Health and Clinical Excellence (Nice), which oversees drugs prescribed on the NHS in terms of their effectiveness and cost. | The drug was licensed for the UK last summer and is currently being reviewed by the National Institute for Health and Clinical Excellence (Nice), which oversees drugs prescribed on the NHS in terms of their effectiveness and cost. |
| Life savings | Life savings |
| A decision on whether to approve its use is not due to be made until January 2009. | |
| In the interim, the All Wales Medicines Strategy Group (AWMSG), which advises the assembly government, has not supported the use of Sunitinib in Wales. This could change if Nice later approves the drug. | In the interim, the All Wales Medicines Strategy Group (AWMSG), which advises the assembly government, has not supported the use of Sunitinib in Wales. This could change if Nice later approves the drug. |
| For now, individual local health bodies are left to decide whether to fund individual cases. | For now, individual local health bodies are left to decide whether to fund individual cases. |
| Mr Beynon's family said he could not afford to pay for the drug privately, which costs about £22,000 for nine months. | |
| The former carpenter, who started working aged 15, has used all his life savings to adapt his house for the wheelchair he often needs to use. | The former carpenter, who started working aged 15, has used all his life savings to adapt his house for the wheelchair he often needs to use. |
| The family is appealing against the LHB's decision | The family is appealing against the LHB's decision |
| "He hasn't got anything left. The only thing he has is his house," said his daughter. | "He hasn't got anything left. The only thing he has is his house," said his daughter. |
| "My father and mother both worked and paid taxes all their lives. They shouldn't have to go through this." | "My father and mother both worked and paid taxes all their lives. They shouldn't have to go through this." |
| Mr Beynon said he wanted to live as long as possible to see his eight grandchildren grow up and is angry at the decision. | Mr Beynon said he wanted to live as long as possible to see his eight grandchildren grow up and is angry at the decision. |
| "They are putting all these millions into funding cures for these things and then they say no, you can't have it," he said. | "They are putting all these millions into funding cures for these things and then they say no, you can't have it," he said. |
| 'Outstanding' | 'Outstanding' |
| Mr Beynon's family have now started a petition against Neath Port Talbot LHB's decision and have received more than 3,000 signatures. | Mr Beynon's family have now started a petition against Neath Port Talbot LHB's decision and have received more than 3,000 signatures. |
| Mrs Thomas, 35, said: "I have had strangers ringing up. The support we have had has been outstanding." | |
| The LHB said it took the group's advice into account, but individuals had a right to appeal. | |
| "The LHB policy also allows for consideration of exceptional cases on an individual basis," said a spokesperson. | "The LHB policy also allows for consideration of exceptional cases on an individual basis," said a spokesperson. |
| "If the view of the AWMSG changes then, of course, the LHB would review cases on that basis." | "If the view of the AWMSG changes then, of course, the LHB would review cases on that basis." |
| The Welsh Assembly Government said: "The All Wales Medicines Strategy Group did not recommend the drug Sunitinib and this recommendation was accepted by the Welsh Assembly Government." |