Looking to the future
The last 18 months have been a time of profound challenge, change and opportunity for the cystic fibrosis (CF) community.
Living with a life-limiting condition during the COVID-19 crisis has brought unprecedented anxiety and uncertainty for many. We have seen new and increasing demands for our support services, and an emphasis on the importance of our role as an advocate for everyone with CF.
The change has come after landmark agreements that made Kaftrio available across the UK, following campaigning by the CF community. Over the last year, thousands of people have started to take the drug - and that number will continue to rise as licensing is extended to younger people in the months ahead.
We must not forget that these drugs don’t work for everyone, nor do they repair the damage that a life with CF has caused, but they are a significant step for many and have the potential to create and support new opportunities. And we won’t stop until everyone with CF is able to live a long and full life.
The future of our community
The recent past makes us cautious about making firm predictions; however, we feel there are some things we can now say with confidence.
Over the next few years:
- there will be more people living with CF in the UK than ever before
- on average people with CF will live longer and potentially healthier lives
- for many, the childhood experience of CF may change profoundly. Access to therapies in early years may significantly delay the accumulation of structural lung damage, and may also remove the need for some treatments that are part of the current basic daily routine
- more young people and adults with CF will complete their education and enter the workforce with the prospect of many years of employment.
We can also predict that these positive changes will be accompanied by new challenges:
- some people with CF currently don’t have the imminent prospect of new life changing drug treatments
- as people age, they are likely to be impacted by new conditions, which in turn will require health, social care and welfare support
- COVID-19’s direct and indirect consequences will linger - which is likely to impact on the health and wealth of the whole country, limiting opportunities and the resources available for care, research and support.
Many will be faced with opportunities and life choices that they never thought they would experience.
Overall, we believe we are looking to a future where the community’s health, treatment and support needs will become more diverse and complex.
Our vision and goals
As the only UK-wide organisation dedicated to supporting and advocating for people with CF, the Trust has a vital role to play in driving forward positive change.
We have a vision that every person with cystic fibrosis can live a long and full life.
At a time of such profound change, we’ve been listening to our CF community and their priorities for the years ahead, so we can make this a reality.
This has helped us to set three ambitious goals that everyone with cystic fibrosis is:
United for a Life Unlimited™
Together we are a united, strong and unstoppable force.
Over the coming years we will use data and evidence as drivers for positive change and to measure progress. We will continue to build effective partnerships, relationships, and collaborations with all of those who can help.
We know that working collectively and with our CF community, we will make a difference and will see tangible results. We all have our part to play to see the impact that we know is possible. We know our goals are ambitious, but we know that working together as a united, motivated, and passionate force we will do all we can to make them a reality.
We won’t stop until everyone has a life unlimited by CF - and every person with cystic fibrosis can live a long and full life.
Cystic fibrosis (CF) is a genetic condition which causes sticky mucus to build up in the lungs and digestive system. It affects more than 10,600 people in the UK. One in 25 of us carries the faulty gene that causes it, usually without knowing.
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