Our March Media Round-Up
Cystic Fibrosis Trust delivers over 1000 signatures to number 10 Downing Street asking for free prescriptions for all with CF
The month got off to a busy start of key campaign activity, with Cystic Fibrosis Trust, armed with over 1,000 signatures, delivering a petition to 10 Downing Street campaigning for free prescription charges for those living with CF.
The prescription charges exemption list hasn’t been updated since the 1960s, when people with cystic fibrosis were not expected to live past childhood. With positive changes to the care and treatment of those living with cystic fibrosis, it is no longer seen as childhood illness, but the current prescription charges exemption list does not reflect this. This oversight has meant that many individuals living with CF have had to use their disability benefits to cover the current prescription costs of £9.35 per item. The Trust is calling for the government to re-review their, now outdated, exemptions list.
Make-A-Wish Foundation removes CF from automatic wish list
Make-A-Wish Foundation announced that instead of automatic qualification for a wish, children with cystic fibrosis will be treated on a case-by-case basis. They clarify that this is due to the advancement of treatment options coupled with the increasing life expectancy of those with CF. The non-profit organisation grants wishes to children who have been diagnosed with critical or chronic life-changing conditions. Make-A-Wish stated that this decision is ‘consistent with our approach to other critical illnesses that do not automatically qualify for wishes because the course of the condition varies from person to person’.
You can read more here.
Kaftrio approved in Ireland for children aged 6-11
The life-changing drug Kaftrio has been approved for children in Ireland. Previously only available to those aged 12 and up, Kaftrio has now been made accessible for use by children aged between 6 and 11. The new access to this therapy will help to improve outcomes for children with CF, having a transformative impact on peoples' lives.
You can read more here.
James Dunmore speaks about 
his connection to CF
Made in Chelsea’s James Dunmore opened up about his connection to cystic fibrosis in our latest CF Life Magazine. James speaks about his two sisters, Lucinda and Jodi, who both died from cystic fibrosis and about his amazing fundraising and challenges he’s taken part in, in their legacy.
You can read the full interview in CF Life here.
You can watch our Media Round-up video on any of our social media pages, or by clicking this link: March Media Round-up Video.