The All-Party Parliamentary Group (APPG) on Cystic Fibrosis was officially launched this Tuesday in the United Kingdom’s House of Commons, with support from politicians and policy makers across the entire political spectrum in the UK in endorsing the Cystic Fibrosis Trust as an effective advocate for fighting the disease in Great Britain.
The APPG gathers MPs and peers from across the political divide with the purpose of advocating for issues concerning patients suffering from cystic fibrosis (CF), such as standards of care, access to medication and transplantation. Jason McCartney, MP, the Cystic Fibrosis Trust’s Ed Owen, and the public affairs officer at the Trust, Emma Lake, all attended the official presentation. The speech was mainly focused on the challenges of living with the disease, as well as the future of caring for CF patients and the plans from the Cystic Fibrosis Trust.
“I am very excited about the All Party Parliamentary Group on Cystic Fibrosis, from which we have a chance to secure a great legacy: to beat cystic fibrosis for good,” said Jason McCartney MP about the group, which gathered for the first time on 15 July, 2014. “Great progress has been made since the Trust was founded 50 years ago and I look forward to working with the cystic fibrosis community, clinicians and politicians to build on this success.”
“It is predicted that within five years, 90% of people with cystic fibrosis could benefit from drugs that tackle the underlying genetic defect. Needless to say, it is important that patients have access to these medicines as soon as possible,” McCartney added. In addition, attendees also had the chance to meet not only the families of CF patients at the reception, but also Trustees of the Cystic Fibrosis Trust, donors, and health sector professionals, who were there to tell their stories and share their hopes about the future of CF.
In addition to the chair Jason McCartney MP from the Conservative Party, George Howarth MP from the Labour Party is serving as co-chair of the group. The APPG on Cystic Fibrosis also comprises eight members from the Labour Party, seven from the Conservatives, one Liberal Democrat member, one Independent, and one from DUP.