Daily Mirror (Northern Ireland)
Access to new CF drug is a life-saver
Relief as chiefs approve Orkambi
A CAMPAIGNER has spoke of her delight after access to a “lifesaving” cystic fibrosis drug was secured for her toddler and others with the condition.
Jen Banks met with health chiefs and Cystic Fibrosis Trust Ambassador Liam Mchugh as the plans to deliver Orkambi in Northern Ireland for the first time were outlined.
Parents and sufferers have been calling on the Department of Health to grant access to groundbreaking drug for years.
But until now it was refused because it hadn’t been approved by the National Institute for Health and Care Excellence which advises NHS England. Jen, from Co Down, told the Mirror: “I’m so relieved, so happy, but also so sad for all of the people that never got a chance to try this incredible drug or that it has come too late for.
“I am filled with joy and excitement about my son Lorcan’s future.
“I am so pleased Richard Pengelly is acting quickly now whilst still wishing it hadn’t come to this – four years of waiting, lives lost and irreparable damage caused but finally this day has arrived and I am overwhelmed.”
Orkambi, Symkevi and Kalydeco will soon be available to eligible patients in Northern Ireland, England and Wales following an NHS deal with maker Vertex.
The move comes a month on from Scotland’s decision to bypass their drugs advisors and offer the medicines.
Department of Health Permanent Secretary Mr Pengelly said: “This has been a very difficult and sensitive process. For patients with cystic fibrosis and their families, it has been a long and frustrating road.” Campaigner Liam
Mchugh added: “I am just over the moon. It’s like winning the lottery.”
Sinn Fein West Tyrone MP Orfhlaith Begley took to Twitter to express her joy.
She said: “Wonderful news for so many families who have campaigned tirelessly for this.”