Minister supports goal of access to medicines by 2020
Access to life-changing precision medicines for people with cystic fibrosis was debated by MPs from across the political spectrum in parliament today, raising vital awareness of the Trust's fight for a future where people with cystic fibrosis live longer and healthier lives.
Ian Austin MP, who raised the Debate on behalf of the Cystic Fibrosis Trust, said “we have once in a generation opportunity to beat cystic fibrosis” and called for the Government to consider the opportunity cystic fibrosis treatments provide for testing new ways of appraising medicines, particularly in light of the rich data captured in the Trust’s UK CF Registry.
In preparation for the debate, the Trust held a Digital Discussion allowing the CF community to share their views on precision medicines with Ian on Twitter, providing him with first-hand accounts to add weight to the debate.
During the debate, MPs paid tribute to the people that grapple daily with cystic fibrosis and George Freeman, Minister for Life Sciences recognised the Trust’s Stopping the Clock campaign, saying “I wholeheartedly support the cystic fibrosis campaign’s central aim of ensuring that as many people with CF as possible will have access to personalised medicines by 2020. That sets an inspiring and clear goal and I relish the attempt to deliver it.”
The Government has now agreed to meet with the Trust to discuss the proposals it has developed on the back of its recent survey, which saw 1,400 people explain what precision medicines mean to them.
Darren O’Keefe, Public Affairs Manager at the Trust, said: “This unique debate made the government directly accountable to the CF community.
“The powerful stories have shown the government the reality of life for people waiting for access to potentially life-changing precision medicines. This makes sure people with cystic fibrosis remain centre stage as the government decides how to tackle this vital issue.”
“By facilitating opportunities like this for the CF community to raise their voices and be heard at the highest levels by the country’s decision makers, we are making a strong case for the Government’s help in our fight for a life unlimited by cystic fibrosis.”
This news item was originally featured on our old website, dated 8/12/2015, and may have been edited since.