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Jayne’s Story

My Dad and my Brother live and work as farmers on their farm on the Herefordshire Powys borders. Dad’s passion is his family and his work, and these are what he lives for. He has always said how fortunate he has been to have great health and a job he loves.

In November 2007, he was diagnosed with advanced kidney cancer. Dad had been fortunate that he’d been well until this point, and never really needed the NHS till then.
He had a palliative nephrectomy in December 2007 followed by oncology care.

His Oncologist explained that there are two palliative treatments available:
2. SUNITINIB (SUTENT) privately

When I asked Dad‘s Oncologist, ‘Which drug would he choose if it was him or a member of his family with this diagnosis’, he replied, ‘ Sunitinib’, and continued to say that his job was to give the treatments available, and advised that Sunitinib is the most effective at this current time, according to the evidence, but was not available on the NHS as yet. It was awaiting NICE approval to determine if it would be available on the NHS.

The Oncologist advised that we discuss these options at home and when we’d made our decision , to phone his secretary so that treatment could start as soon as possible. Mum, Dad, my brother and myself met. We could only see that Sutent was the best choice but the financial burden was huge. We would take it one stage at a time. We didn’t know if Sutent would be effective for Dad, but we had to give it a try. We knew we couldn’t afford this drug long term, but we did not wish to waste precious time and thought it was best to get on with it, try the best drug (Sutent) first and go from there. We lived in hope that a) it was effective for Dad in reducing the metastatic disease and b) really hoped that NICE would approve it soon, as the clinical evidence was so good. It seemed unbelievable that NICE wouldn’t approve it as how could it be morally ethical to license a drug which is clinically proven to prolong lives yet deny it on the NHS due to cost alone.

Dad’s GP and Oncologist wrote to the Local Health Board (Powys) to request whether they would consider funding his treatment for his advanced renal cell carcinoma with Sutent. It was declined on the basis that it wasn’t approved by NICE. We also involved Dad’s local MP and a representative on the Welsh Assembly. In March 2008 my Mum saw Melissa Worth on Breakfast TV where she had won an appeal for a cancer patient. By coincidence, a friend of hers knew of somebody locally who Melissa Worth had worked with in trying to get a cancer drug funded. Mum decided to contact her. We wrote a letter and she agreed to help on a pro bono arrangement. We also saw Kate Spall on Breakfast TV who we emailed. She said she could also help and that inspired us to keep fighting. My Mum, my brother and myself took this on as Dad has enough to cope with.

In the meantime Melissa Worth had been approached by the Sunday Times who were running an article on co-payment. She asked Dad if he’d be willing to be participate which he did. From there, more media attention followed: local radio, regional and national news, Daily Telegraph, Daily Mail. They played a vitally key role in relaying the message re this outrageous cancer drug dispute.

Dad’s CT scan on April 3rd 2008 showed fantastic results, the metastases in the lungs had shrunk. A repeat scan in July 2008 showed that Dad was in remission, was clearly benefiting from Sutent, tolerating any side effects well, and was continuing to be able to work as a farmer. His ability to keep working has been a saviour in how he has coped with his advanced kidney cancer.

Melissa Worth and Chloe Nulty appealed to Powys LHB, with input from Kate Spall, to review their decision re Sutent funding for Dad as it was working well and the scans were evidence to prove this. They also highlighted flaws in the LHB’s previous decision making process of refusing Sutent for Dad. Undoubtedly Melissa Worth, Chloe Nulty (Halliwells Solicitors) and Kate Spall (Pamela Nortcott Fund) were the key members in this appeal. So also was our Oncologist who wrote a very individualised letter again to the LHB asking that they reconsider on the basis that Dad be treated as an exceptional case so that he could continue to work, as well as reinforcing all the clinical evidence re Sutent.

Finally on July 25th 2008 Melissa phoned up with the news: Dad had been granted funding, she had received an email from the LHB’s solicitors. They had funded it on individual circumstances: Dad’s scan results, the evidence provided by his Oncologist and the fact that it was continuing to be effective for the duration of time Dad had been on Sutent (6 months). At last Dad and Mum can get on with their lives, really enjoy their time now and not worry where the money will come from to fund this drug. It is horrific enough to live with the cancer diagnosis without all this strain and stress on top: it simply should not be.

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