Silent protest at Royal Court: islanders demand access to cystic fibrosis drug
ISLANDERS will be lying down in front of the Royal Court tomorrow [Thursday 11 July] in protest at a lack of access to a drug which could extend the lives of those with cystic fibrosis.
The action will happen at 1pm on Thursday.
‘This is in support of the action being taken by hundreds of UK parents who will be lying down in Parliament Square at the same time in support of a national campaign by the Daily Express to put an end to the Cystic Fibrosis Drugs scandal,’ said president of CF Guernsey Mike Read.
The silent protest is to demonstrate over the three-year deadlock between the NHS and US drug company Vertex over the price of a life-saving drug for those suffering with cystic fibrosis, Orkambi.
Orkambi works on CF patients with a particular genetic makeup. It is said to stop the disease in its tracks, as opposed to treatment which only helps those living with the disease.
‘The drug would radically improve the lives of people with CF.
‘250 cystic fibrosis sufferers have died so far waiting for this drug [to be available with the NHS],’ Mr Read said.
‘And my daughter will die sooner rather than later without access to these drugs, as Guernsey won’t pay for it either.
‘Guernsey already lags well behind the NHS in drug and treatment provision through years of underfunding and a ‘‘White List’’ policy that limits the drugs and treatment our local clinicians are able to prescribe from.
‘[This means] that often we are denied many life-saving drugs, particularly cancer drugs, that are available to [patients] in the UK and Jersey.’
With the imminent release of the Health & Social Care committee’s drug and treatment review and policy letter, deputies will soon have the chance to debate the issue.
‘They can decide whether they want to do anything to address the imbalance. If we don’t, Bailiwick residents – including my daughter – will continue pay the price with their lives,’ he said.
Mr Read invited islanders who would like to support the protest to join them outside the Royal Court building.
Another way to show support is to wear yellow – for a brighter future.
n To find out more about the Cystic Fibrosis drugs scandal, search #LayDown4CF, #OrkambiNow and #LifeSavingDrugs4CF.