Time running out for baby as the Tories stay silent on lifeline drug
CROSS-BORDER MEDICINE WRANGLE Health minister rapped over ill girl
Tory health minister Matt Hancock has refused to respond to an invitation to work with the Scottish Government to save a seriously ill baby’s life.
Seven- month- old Maryam Malji, whose family are from London, has the rare genetic disorder type 1 spinal muscular atrophy (SMA).
The condition has already killed her brother, and her parents Zainab and Shakil are desperate to get access to Spinraza – a costly new treatment which is available on the NHS in Scotland but not in England.
Labour’s Edinburgh South MP Ian Murray has wr it ten to Hancock and Scottish public health minister Joe FitzPatrick, urging them to work together to provide access to the “wonder drug”.
Correspondence seen by the Sunday Ma i l reveals that in response , FitzPatrick has invited Hancock’s department to make a proposal for cross- border drug sharing.
But his Wes tmi ns t e r counterpart has refused to engage with the Scottish G ov e r nment despite Maryam’s race against time, and insisted on awaiting a final decision on Spinraza from authorities in England.
In Scotland, decisions on which drugs are approved for NHS use are made by the Scott ish Medicines Consortium (SMC). In England, the corresponding body is the National Institute for Health and Care Excellence (NICE).
Spinraza costs £75,000 a dose and was deemed too expensive by NICE last year, though that is now under review.
The drug has been cleared for use in more than 20 European countries, including Scotland.
FitzPatrick said: “I was deeply sorry to hear about the difficulty that Maryam and her family are going through.
“As outlined in my correspondence with Mr Murray, although there are no existing cross-border arrangements for the provision of Spinraza, NHS Scotland would carefully consider any proposals from NHS authorities in England for a reciprocal protocol that would allow for people residing in England to receive treatment in Scotland.
“We remain open to discussing this with the UK Government, should they bring this forward.”
A spokesman for the Department of Health and Social Care in London said Hancock would wait for NICE to issue “final guidance” on Spinraza before deciding the “next steps”. He added: “We’re committed to making sure all patients have access to the best medicines at a price the NHS can afford.
“NICE’s robust and internationally respected independent system balances cost with their proven clinical benefits to ensure the NHS pays a fair price for the most innovative treatments.”
Murray urged NHS authorities on both sides of the Border to take action before it is too late.
He said: “It seems there is buckpassing going on here, and I would urge ministers both in Scotland and England to remember that a young life is at stake.
“I would hope that they can work together to find a way to get Maryam the treatment she desperately needs as soon as possible.”