Max and Keira’s Law came into effect on the 20th of May this year, seeing the law in England change to an ‘opt out’ system for organ donation.

This means that all adults will be considered to have agreed to be an organ donor when they die, unless they have recorded the decision not to donate or they fall into one of the excluded groups. Families will still be consulted, and faith, beliefs and culture will still be respected.

There were nearly 4,000 transplants in 2018/2019, although this is an incredible number, last year over 400 people died while waiting for a transplant. With 6,000 people currently on the UK Transplant waiting list, the change in law will mean that many more people will get a second change of life with organ transplantation.

What does this mean for patients with cystic fibrosis?

There may come a point when the treatments for cystic fibrosis aren’t working well enough, and the person with CF becomes very unwell needing a higher level of care and support.

At this point, their CF team may decide that an organ transplant is necessary. As CF can inflict damage on the whole body, organs such as lungs, liver or pancreas may need to be transplanted.

A double lung transplant is commonly needed for people with CF. While some people may wait a matter of weeks for donor lungs to be found, others may wait years, and sadly some people will never receive their life saving transplant.

1/3 of people with cystic fibrosis die while waiting for a lung transplant.

As a genetic condition organ donation will not cure CF, however, it does give people with CF a chance at a new life when their symptoms become severe and life threatening.

Max and Keira’s Law means there will be an increased availability of organs, for a patient with CF on the waiting list -often being the difference between life and death.

Pippa Kent, one of our superstar hero fundraisers recently celebrated her 3rd lung anniversary by cycling 100km and raising almost £9,000 for Royal Papworth Hospital and the Royal Bromptom and Harefield Trust. In honor of her donor and their family, who gave her a second chance at life, Pippa planned to cycle between the two hospitals and raise vital funds for both.

Undeterred by the challenges coronavirus created Pippa chose to complete the challenge in her garden. Using clever technology she completed the route, hills and all, in 5 hours and 3 minutes. This was an incredibly impressive feat especially considering she was on oxygen 24 hours a day before her transplant.