Our campaign successes

In 2015, we launched a travel insurance campaign in response to concerns around travel insurance and oxygen on flights.

Our community told us about the shocking extent of premiums and restrictions that are often imposed by the travel insurance industry on those affected by cystic fibrosis.

What we achieved

We met with a number of specialist travel insurance companies to discuss CF treatments and care, and help insurance companies better understand the condition and manage the risks of providing cover for those with CF. 

We highlighted and informed companies of developments in CF that might otherwise affect premiums. This included updating them on changes in medications, such as access to new modulator therapies, educating companies on complications like CF-related diabetes (CFRD), explaining the difference between planned and emergency intravenous antibiotics, and most recently, highlighting the impact of the COVID-19 pandemic on the CF community.

This information has been key in helping to create improved and affordable access to travel insurance for people with CF and their families.

As a direct result of our meetings with specialist insurance providers, there has been a notable cost reduction for those seeking cover for their condition, and the user experience when taking out a policy has been improved and simplified.

Insurance list

The Trust’s Helpline provides a list of up-to-date travel insurance companies that may offer CF cover.

This list can only be accessed on request via the Helpline and includes companies we have worked with previously, and recommendations from the CF community where they have had a positive experience.

The Trust does not recommend any specific travel insurance company.

Read our information on going on holiday with CF

A campaign around the delayed development of a much-needed new CF ward at King's College Adult CF Centre.

Fighting for fairer access to life-saving medicines for everyone with cystic fibrosis. After a sustained fight by the CF community and the Trust, Orkambi and Kaftrio were made available for people with CF aged 6 and years and over. 

Around 30 MPs from across all parties were invited to find out more about CF care and hear about the key issues affecting people with cystic fibrosis.

Fighting the closure of specialist heart units and highlighting the implications of the closure for CF services.