Patients demand kidney drugs (From The Northern Echo)

Patients demand kidney drugs

7:43am Thursday 28th August 2008 in End NHS Injustice

DOZENS of kidney cancer sufferers and their families protested yesterday over the refusal to allow patients treatments on the NHS.

Protestors gathered outside the headquarters of the National Institute for Health and Clinical Excellence (Nice) in Holborn, central London, waving placards insisting they “deserved the right to life”.

Nice issued draft guidance earlier this month on the drugs Sutent (sunitinib), Avastin (bevacizumab), Nexavar (sorafenib) and Torisel (temsirolimus).

The draft guidance, which is subject to appeal, rejects the drugs, saying they are not cost-effective for patients with advanced and/or metastatic kidney cancer.

Although the medicines do not cure the cancer, they do extend a person’s life by a matter of months.

While Nice considers its final ruling, local primary care trusts can still allow patients to be given the drugs on the NHS – but most are reluctant to do so.

Yesterday, patients and their families handed letters to the organisation calling for a rethink of the guidance.

Broadcaster James Whale, who lost a kidney to cancer in 2000, was among the protestors.

He said: “I want the chairman of Nice to come down and speak to these people. I want him to look into the eyes of the people whose lives he would cut short.”

Jean Murphy, 63, from Salford, was diagnosed with kidney cancer in July 2007. She started taking Sutent three weeks ago after an anonymous donor gave her £10,000.

She said: “It has made me feel more like my old self and I’ve only been on it for three weeks.

“Last week, I went shopping for the first time in eight months, that’s how well I’m feeling. I am here to support all these people. I feel very angry about what Nice is doing.

“My professor and other professors have said how good this drug is.

“Lots of people have worked hard and put money into the country and now they can’t get it. I never thought I would see the day when this country would do that.”

Her daughter, Cathy Ostasz, said she felt as if a price had been put on her mother’s life.

“In my letter to Nice, I said they were condemning kidney cancer patients to an early death.”

Yesterday’s protest came after 26 leading UK cancer experts wrote to a newspaper to say they were “dismayed”

at the guidance.

Last year, The Northern Echo launched its End NHS Injustice campaign to support the efforts of North- East kidney cancer patients trying to get access to Sutent on the NHS.

Kathleen Devonport, 65, from Chilton, County Durham, won her battle after health bosses agreed to pay for the £30,000-a-year drug.

It has helped her lead a near-normal life and given her the energy to enjoy her six grandchildren.

After a series of articles about Sutent in The Northern Echo the North-East NHS became the first area in England to agree to pay for patients to be treated with the drug for the time being.

However, just across the county border in North Yorkshire, Barbara Selby, from Richmond, has not been successful in persuading her primary care trust to fund her treatment with Sutent.