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Drug fight patient demands shake-up of system

A PENSIONER who received treatment for a life-threatening blood condition only after she suffered a potentially fatal blood clot has called on ministers to ensure the blunders in her case are not repeated.

BATTLE: How The Herald reported Mrs Juszczak's plight. WARNING: Joyce Juszczak was only prescribed a potentially life-saving drug after she suffered a near-fatal blood clot. Picture: Colin Mearns
BATTLE: How The Herald reported Mrs Juszczak's plight. WARNING: Joyce Juszczak was only prescribed a potentially life-saving drug after she suffered a near-fatal blood clot. Picture: Colin Mearns

Joyce Juszczak, 66, admits she would not be alive today if she had not finally been prescribed eculizumab for the rare condition paroxysmal nocturnal haemoglobinuria (PNH). It destroys red blood cells and leaves victims at risk of kidney failure and potentially fatal blood clots.

The clot destroyed one-third of her kidney and Mrs Juszczak is still angry it took that to happen before NHS Greater Glasgow and Clyde health board reversed its decision not to give her the potentially life-saving drug eculizumab in December 2011.

One year on from winning her fight, Mrs Juszczak, who pressed for patients to be given more access to the drug at the Scottish Parliament, has called for the system to be revamped to prevent a repeat of her case.

She admitted her fight is no further forward despite her appearance before MSPs and the intervention of the then Health Secretary Nicola Sturgeon.

Experts said eculizumab prevents the need for regular blood transfusions in two-thirds of patients and virtually abolishes the risk of clotting.

The Scottish Medicines Consortium (SMC), which decides which newly licensed drugs represent good value, ruled against eculizumab.

Mrs Juszczak, who can now go shopping and has returned to her hobby of bowling in her home town of Gourock, Inverclyde, believes the kidney damage she suffered as a result of the earlier refusal to prescribe the drug may be hindering her progress.

Campaigners have complained that drugs for diseases such as cancer are available in other parts of the UK and Europe but are not routinely offered to patients in Scotland on the NHS. Patients like Mrs Juszczak must apply for drugs not approved for widespread use by the SMC on a case-by-case basis by submitting an Individual Patient Treatment Request (IPTR).

The Scottish Government ordered an initial review nearly a year ago following Mrs Juszczak's case as critics claimed a cross-border divide in availability of new medications had been created.

Scotland's Chief Medical Officer, Sir Harry Burns, and the Chief Pharmaceutical Officer, Professor Bill Scott, decided to allow IPTR to bed in before a further review.

Nearly a year later, the Government announced there would be an independent review of processes that mean hundreds of life-saving or life-changing drugs are restricted for use in Scotland.

Professor Philip Routledge, of Cardiff University, is reviewing current new medicines assessment processes against those of similar organisations elsewhere, to see if there are any areas that Scotland could learn from.

However, Mrs Juszczak said it was long since time for change, to ensure that people receive the treatment they need and prevent a repeat of what happened to her.

"I would never put anybody, or any family, through what I went through," she said. "If they know there is a drug that can help you it should be given automatically.

"To be told unless you take a blood clot or a stroke you won't get the drug, put my life in danger.

"The attitude has to change."

Mrs Juszczak spent two weeks in hospital in December, 2011, after suffering a potentially fatal blood clot. She said: "It was a terrible time for my husband and family, especially when they were told how dangerous it would be if I took another blood clot.

"I didn't know they told my family that if it went to the brain I was a goner, more or less.

"I feel now that if I didn't get the drug I wouldn't be here.

"Before I couldn't do any bowling at all and rarely went out.

"I used to go bowling three or four times a week. I would say at the moment it's three or four times a year.

"I am certainly getting out a great deal more.

"The best thing is that I am alive. I am just thankful to be here."

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