A REVIEW of prescribing processes that mean hundreds of life-saving or life-changing drugs are restricted for use in Scotland has been ordered by the Scottish Government.
The move comes as critics claim a cross-border divide in availability of medication has been created, particularly for treatment of rare diseases.
Patient groups welcomed the move. They have been lobbying the Scottish Government for a rethink over criteria for provision of hundreds of new and established drugs not recommended for use in NHS Scotland by the medications advisory group the Scottish Medicines Consortium.
The SMC refuses to recommended some drugs considered too expensive, leaving patients having to plead exceptional circumstances to get them.
The review has emerged after pensioner Joyce Juszczak was refused the drug eculizumab for the life-threatening blood condition paroxysmal nocturnal haemoglobinuria (PNH).
It was revealed yesterday that Robert Calderwood, chief executive of NHS Greater Glasgow and Clyde, admitted in response to her family's complaints that unclear Scottish Government criteria in provision of certain drugs had created a cross-border split in getting some medication.
Retired barmaid Mrs Juszczak, 65, from Gourock, was only given eculizumab when she suffered a potentially fatal blood clot. She went seven months without the treatment after a failed Individual Patient Treatment Request (IPTR) and subsequent appeals.
Now it has emerged that in a response to an appeal for a review by campaigners, Scotland's Chief Medical Officer, Sir Harry Burns and the Chief Pharmaceutical Officer, Professor Bill Scott, have been asked to "review extant processes".
"This is an amazing step forward," said Lesley Loeliger, founder and chairman of the new pressure group PNH Scotland. "All we can ask is that the Government look at this. This will provide a lot of hope."
Rare Disease UK said it was "encouraged" by the Scottish Government's response.
Clinicians making an "exceptionality" case as with Mrs Juszczak have to demonstrate the patient is significantly different from most people with the condition in question and that they are likely to gain significantly more benefit.
The response to campaigners says: "The Scottish Government has agreed to give consideration to the extant arrangements for appraisal of medicines to treat rare diseases and advised that the Chief Medical Officer and Chief Pharmaceutical Officer have been asked to review processes with a focus on ensuring timeous consideration of SMC-accepted medicines across all NHS Boards in Scotland [and] any associated wider board governance procedures, including the IPTR arrangements.
"Whilst the Scottish Government has sought to improve access to newly licensed medicines, it is important to recognise the potential for further refinements to the processes which underpin the introduction and availability of newly licensed medicines in Scotland."
Angela Timoney, the SMC chairman said: "SMC considers the clinical and cost-effectiveness of all new prescription medicines, regardless of severity or whether the condition they treat is common or rare.
"Difficult decisions have to be made in order to spend available resources wisely and this is increasingly important in the current fiscal climate. If money is spent on medicines that do not offer good value, it means that this money is not available to be spent for other treatments that could provide benefits to patients."
Mrs Juszczak's family and other patient rights campaigners are also concerned that different NHS boards in Scotland are interpreting Scottish Government guidance on IPTRs differently. One NHS Borders policy document admits that exceptionality is "difficult to define" and that "pragmatism and flexibility are necessary".
Patient groups say the Scottish system is failing more than 350,000 people affected by rare diseases with just less than half of all treatments being rejected for full use on the NHS.
Rare Disease UK, which supports 3.5 million people in Britain, says medication is failing to reach patients because it is considered too expensive for use in Scotland – even though the same drug is accepted in England and Wales. Of 59 rare disease medicines appraised by the SMC, nearly half were not recommended and just 15% were accepted, with 42% allowed for restricted use.
The Rare Cancer Foundation says there are now more than 20 cancer medicines not routinely available in Scotland, but which are funded through the Cancer Drugs Fund south of the Border.
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