Let’s knock heads together and get drug to patients
Neil calls for urgent action over medicine
A FORMER SNP health secretary said it’s time to “knock heads together” and get a life-extending drug to cystic fibrosis patients.
Alex Neil said there has not been enough progress over Orkambi, which can halt the painful progress of the condition.
Speaking in a Tory-led Holyrood debate yesterday, Neil said pharmaceutical firm Vertex and the body responsible for procurement should make the drug available now – and strike a deal later.
Neil said: “Sometimes it’s necessary for government to knock heads together.
“The stage we’re at just now, particularly with Orkambi, we need the Government to knock the heads together of manufacturers Vertex, the Scottish Medicine Consortium and National Services Scotland, who are responsible for the procurement on behalf of the Scottish Government.”
Tory MSP Maurice Corry, who secured yesterday’s debate, raised the case of a family in his area who have an 18-month-old son with CF.
Reading from their letter, he said: “It’s not just about Orkambi, it’s about what comes after it. That’s why it’s so important that an approach can be agreed that allows access to the pipeline of future life.”
Labour MSP Claudia Beamish broke down in tears as she told parliament about Robert Barker, who lives in her South Scotland region.
In 2016, he spent nearly 100 days in hospital and was hooked up to oxygen at home.
He couldn’t look after his wife and six-year-old daughter and was given the drug on compassionate grounds in January last year. After nearly four months on Orkambi, his lung function had increased so much he was able to return to work. By summer, he was able to take his family on holiday.
One year on, there are no more hospital stays. Beamish said: “Robert’s story is heart-rending and filled with hope. It may be expensive but the price of a drug should not prevent it being available on the NHS.”