Few things are more painful to watch than a child in distress.
For a parent, not knowing whether your son or daughter will live and thrive through an illness can bring overwhelming anxiety and pain few of us will experience or fully understand.
I’ve been trying to help a constituent, whose beautiful six-month-old daughter, Maryam, has been diagnosed with a terrible condition called spinal muscular atrophy, type 1.
Untreated, SMA1 causes muscles to waste away before they develop properly. It reduces, and then takes away, the ability to do unassisted basic things, like walking, crawling, sitting, eating, drinking and breathing. It is devastating.
International drug company, Biogen, has developed a new, effective treatment: Spinraza.
Biogen conducted UK clinical trials for Spinraza in 2016, proving beyond doubt it is a safe and effective drug that can prolong life and lessen suffering.
It’s already available on the NHS in Scotland and in 23 other European countries.
It is a safe drug, but not available to Maryam, because Biogen and The National Institute for Health and Care Excellence, (NICE), which makes decisions on NHS drugs, can’t agree on a price.
I’ve met Matt Hancock, the Secretary of State for Health and called out Theresa May in PMQs. So far, 320,000 people have signed a petition to make Spinraza available.
Last Wednesday, we held a vigil for baby Maryam outside the NICE offices, whilst they were making a decision about Spinraza.
I then learnt the cruellest thing yet. Despite a decision having been made, it could be another month before we learn what that is, leaving the family in limbo waiting, watching Maryam’s condition deteriorate.
We seem prepared to see children used as pawns in price wars. Whilst they suffer, the Government and the drug company haggle on price. I will not defend greedy drug companies, but I’m told the price NICE has been quoted is very competitive. They’ve been offered a good deal. So why do Maryam and other babies recently diagnosed have to wait even longer for a decision and for the drugs they need?
This isn’t who we are.