September 10, 2008

Writing an Open Letter to the Health Minister Seemed the Only Way to Get Our Point Across ; Cancer Patient’s Daughter Explains Dad’s Drug Plight

By Martin Shipton

A DAUGHTER whose father suffers from cancer has today appealed directly to Health Minister Edwina Hart for those in his position to be given the drugs that could prolong their lives.

Anna Wolfenden's open letter to Ms Hart calls for a swift decision to be made about the availability of drugs such as Sunitinib that are widely available for patients with kidney cancer in the United States and other countries but have failed to secure the recommendation of NHS bodies in the UK amid concerns they are too expensive.

Sunitinib costs around pounds 13,500 a month.

Ms Wolfenden's letter, published below, also calls into question the morality of denying access to NHS treatment for patients driven by desperation to pay for drugs themselves.

Her father, John Jones, 62, was diagnosed with kidney and lung cancer earlier this year and has recently been undergoing radiotherapy after the disease spread to his brain.

Mr Jones' consultant at Ysbyty Gwynedd, Bangor, is expected to apply to the Gwynedd local health board for permission to prescribe Sunitinib.

However, the National Institute of Health and Clinical Excellence (Nice) issued a draft ruling last month that Sunitinib is not cost effective, though a full report has yet to be published.

Mr Jones, from Menai Bridge, runs a family kitchen and bathroom business in Bangor with his wife Mair. His daughter, from Porthaethwy, Anglesey, also works for the business.

Ms Wolfenden said: "We have been so shocked by the way deserving patients have been denied access to drugs that are readily available elsewhere that writing an open letter to the Health Minister seemed the only way to get our point across.

"Obviously I would like my father to be prescribed the drug, but the family realises that there are many other people in a similar position.

"It can't be right to deprive people of drugs when the doctors caring for them believe they would benefit.

"What is really scandalous is the statement made by the Minister that patients could be denied NHS treatment if, out of desperation, they paid for drugs themselves. So far as we are concerned that is totally unacceptable.

"I really hope that putting the position in such stark terms will help persuade those in a position to make crucial decisions that life-prolonging drugs should not be denied to patients when they could benefit from them."

Last month, the 'Western Mail reported how former Brecon mayor Chris Lewis, who has been diagnosed with terminal kidney cancer, was planning to refuse the drug even if he is prescribed it in protest at the Government's refusal to allow it to be given to all NHS patients whose consultants say they would benefit from it.

Drugs that are not deemed clinically effective or cost effective are not recommended for use on the NHS.

However, if a clinician feels there are extenuating circumstances, they can request that their local health board considers providing the drug.

Responding to Ms Wolfenden's open letter, an Assembly Government spokesman said: "Although we cannot comment on individual cases, until Nice publishes its final guidance the availability of drugs such as Sunitinib is a matter for local determination based on the needs of individual patients and the advice of local clinicians.

"The chief executive of the NHS in Wales wrote to trusts earlier this year to clarify that where treatment is not available from the NHS, a patient may choose to access it privately.

"The exercise of this choice should not jeopardise the patient from returning to NHS care, provided that care is within a different episode of care.

"As the Health Minister has previously said, she is already considering the broader issues surrounding the availability of drugs on the NHS and will carefully consider what additional guidance might be needed."

Anna Wolfenden's letter to Welsh Assembly Health Minister Edwina Hart

Dear Minister

I had not intended to write to you in such a public way and I apologise for doing so.

However, I feel I have no choice but to air my views in this way as I fear that further delays may contribute to my father's medical demise.

My father is suffering from kidney cancer which the doctors say is inoperable. Worse, he has secondary cancer to the lungs and recently we were given the devastating news that the cancer had spread to the brain.

Dad is only 61 years of age and our family has been truly traumatised by the discovery that this dreadful disease has taken such a toll in such a short space of time. All this has happened in the space of six months.

He has recently undergone radiotherapy treatment for the tumours to his brain and seems to be responding well and the last scans showed that the kidney and lung tumours had not grown.

In the next two weeks his consultant will, hopefully, begin the process of applying to the local health board for the kidney cancer drug Sunitinib.

We appreciate that this process, in part, is governed by complicated medical calculations by the drug regulator NICE, but there is confusion in our minds as to what might happen if he is denied the drug, now widely regarded by the medical profession as being beneficial to certain patients.

In our opinion this drug should be given freely to my father and other cancer sufferers throughout Wales. To deny them these drugs is cruel in itself, but we now learn that we may face further obstacles if, having been denied the drug on the NHS, we decided to try to raise the money to pay for it ourselves.

I understand that you have stated that sufferers who opt to top up their care with private drugs are not able to receive NHS treatment for the same episode of care. What exactly does that mean?

This seems to us to be undermining the very principles of the NHS. Every time we turn a corner in our efforts to help my father we are faced with obstacles, and in our desperation to do something we turn to you and implore you to act.

To deny a patient these drugs is cruel, but to deny them the right to pay for a recognised private drug without being penalised and denied further necessary care is nothing short of scandalous and a cause for shame in a civilised society.

For 35 years my dear father has guided and supported me and made me the strong independent woman that I am today, but now he needs my help.

More importantly, Minister, he - and many like him - needs your help and guidance.

Enough is Enough! Digon yw Digon! Please Act Now.

Anna Meleri Wolfenden Porthaethwy Ynys Mon

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