WE WELCOME the news today that drug company Bio Marin will resume the supply of a vital drug to young Sam Brown who suffers from the rare disease Morquio Syndrome.
Without the persistence of Sam’s family MP Greg Mulholland, the drug would probably still be denied the young boy - sentencing him to the likelihood of early death.
It is as stark as that. But the fight by Mr Mulholland reveals a shocking lack of accountability that needs addressing.
For more than nine months Mr Mulholland has been fighting to try to get Sam long-term secure access to the drugs he needs.
But the passing of the Health and Social Care Act back in 2012 effectively denied him the drugs, advising ministers which drugs should be funded by the NHS and which should not.
In short Ministers refused to intervene saying the decision was a matter for NHS England. Yet officers from the NHS failed to meet with Mr Mulholland to discuss the issue.
NHS England had decided not to fund the drug on the guidance from the National Institute of Health and Care Excellence. This just shows the mess and lack of unaccountability there is in the NHS.
Thankfully, due to the persistence of Mr Mulholland the drug company has now agreed to fund the free supply of his drug. But it relies on their benevolence and not on policy. This unholy mess needs to be sorted for what is effectively the life chances of other patients.