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
“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.”
Watch a recording of the debate online or read the transcript to find out more.
news item was originally featured on our old website, dated 8/12/2015, and may have
been edited since.