Why won't they give me cheaper life-saving drug?

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Friday, July 03, 2009
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This is Staffordshire

A MOTHER-OF-TWO has been told she cannot have a drug which could save her life on the NHS – even though it is cheaper than her current medication.

Law student Bernice Sowter, aged 44, pictured, was diagnosed with chronic myeloid leukaemia in September last year.

She was told her prospects were good because of the new 'miracle drug' Imatinib. But after six months of treatment with the drug, it is having no effect on her illness.

Instead, her consultant at the University Hospital of North Staffordshire has told her she must switch to Dasatinib, a similar drug. Tests have confirmed that it is likely to work for her.

But, against the advice of her oncologist, NHS North Staffordshire has told her it will not fund her treatment with the new drug – even though it would work out cheaper to give her Dasatinib.

Mrs Sowter, a former pupil of Clayton Grammer School, said: "They can manage my condition, as long as it does not accelerate to the next phase.

"Imatinib is a new wonder drug which should do that, but I am one of 20 per cent of people that it doesn't work for. I might as well be untreated.

"If I took Dasatinib instead I would be on a lower dose and that would work out cheaper."

At present, Mrs Sowter is on 600mg of Imatinib, which costs the NHS £104.27 per day. If she was switched to Dasatinib, below, she would need 100mg-a-day, which would cost £83.49.

Mrs Sowter will have leukaemia for life, but if her condition is managed with Dasatinib she could lead a virtually normal life. Untreated, her leukaemia will progress to its next phase and it will likely kill her.

Although Dasatinib has yet to be approved by the National Institute for Clinical Excellence (Nice), it has been approved for use in Scotland and has been funded in parts of the UK, without Nice approval.

Mrs Sowter, who lives in Balterley, near Betley, with husband Jeremy and her two children, aged 10 and 11, was half way through a law degree at Staffordshire University, studying to become a solicitor, when she discovered she had leukaemia.

She said: "It was devastating. But at the hospital they were very optimistic. They said 10-years ago my prospects would be very bleak, but because of this new drug I had a very good chance.

"Then to find out it wasn't working was very upsetting.

"The leukaemia makes me feel very tired, so it has been a very difficult year with my studies. Then I find it difficult to do things with the children because I am too tired."

Mr Sowter, aged 53, said: "It has been very stressful for her, but she's coping very well and she has done so well to get through her law exams.

"Bernice is still young, she's got a good chance. But only if she gets this new drug.

"We know there are people in other parts of the country who get it. It is a postcode lottery."

A spokesman for NHS North Staffordshire said: "Dasatinib has not been approved by Nice for the treatment of this form of cancer and policy is to not routinely fund treatments until they are approved, unless there are exceptional clinical reasons for doing so.

"Appeals can be made against the process followed in making the decision but not against the decision itself.

"Applications that are unsuccessful can be resubmitted at any time if further evidence of exceptionality can be provided by the patient and/or their clinician."

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7 Comments

  • Profile image for This is Staffordshire

    by Rustinho, Silverdale

    Saturday, July 04 2009, 12:45AM

    “Gertrude Windsor, Trentham - Dasatinib was approved for use in the UK in June 2006 by the MHRA (Medicines and Healthcare Regulatory Agency - the UK equivalent of the FDA). NICE are a government body which recommends drugs for use by the NHS according to a cost benefit analysis and not according to drug efficacy.

    Basically, the MHRA (and the FDA as it happens) say the drug is safe to use and will work. NICE are effectively saying that this woman's life isn't worth paying the money to save.

    A licence granted by the MHRA (formerly called the MCA or Medicines Control Agency until it merged with the MDA - Medical Devices Agency - in April 2003) is valid throughout the UK (including England, Scotland, Wales, Northern Ireland, without researching I suspect probably the Channel Islands, Isle of Man, etc, too) and if the pharmaceutical company in question follows a particular regulatory path it can be used as the basis for a licence throughout the rest of the European Union too (via the European Medicines Evaluation Agency or the EMEA).

    I hope this clears up your obvious misunderstanding about the drug approval process in the UK.”

  • Profile image for This is Staffordshire

    by helen, Warrington

    Friday, July 03 2009, 10:08PM

    “If not on compassionate grounds that every person in the country deserves the same treatment, then surely the NHS could be persuaded on financial grounds to fund the cheaper treatment. Lets re-Unite the United Kingdom's health policies, we are all part of one great country - Scottish or English, equal treatment for us all is what is needed. This young lady deserves a chance with these life saving drugs - what price can you put on a person's health and life?”

  • Profile image for This is Staffordshire

    by Gertrude Windsor, Trentham

    Friday, July 03 2009, 3:26PM

    “The thing is, it's not about the money. It's because it hasn't been approved for use in England. The UK needs a drug approval body like the FDA in the United States where drugs are approved for all states by one body. Otherwise we have what is effectively a postcode lottery, particularly when some local health authorities pick and choose which *unapproved* drugs to treat patients with, while others refuse due to insurance and litigation concerns.

    Also, I cannot believe the journalist misspelled the word Grammar. Of all the words to misspell!”

  • Profile image for This is Staffordshire

    by Pete, Packmoor

    Friday, July 03 2009, 2:07PM

    “.... and compare these modest costs to what our gravy train MP's have been getting away with for years.”

  • Profile image for This is Staffordshire

    by debbie, Chell Heath

    Friday, July 03 2009, 2:05PM

    “Well said Bewildered, UK Itotally agree with you”

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