It is a “scandal” that one in three cystic fibrosis sufferers who are waiting for donated lungs die while on the transplant list, a charity has warned.
Only around 20% of lungs donated are actually used in transplantation in the UK, the Cystic Fibrosis Trust said.
The charity has called for an overhaul of the system to end the “transplant lottery”.
Sufferers on the transplant list wait, on average, for more than a year - 412 days, the charity said.
More than 10,000 people from across the UK suffer from the life-shortening condition which is caused by a faulty gene. It leads to a sticky mucus clogging the lungs and digestive systems which makes it hard for sufferers to breathe and eat.
In its new report, the charity says that more must be done to make the most out of lungs that are available.
The report’s authors called on NHS Blood and Transplant to develop a new “lung allocation system” that balances the needs to medical urgency and long-term outcomes.
At present when lungs become available they are offered to the closest transplant centre, when a matching recipient has been identified.
“There is concern across the cystic fibrosis community about equity in lung allocation,” the report states. “There is a perception that the likelihood of getting a lung transplant, and the time frames for this vary according to where an individual is listed. A donated organ will not currently necessarily reach the most in-need candidate anywhere in the country.”
Meanwhile transplant centres must ensure that surgeons are equipped to “downsize” lungs.
The report adds: “The primary existing barrier to adequate provision of lung re-sizing is the skill needed by the surgeon to undertake this procedure. The UK does not have a culture where lung re-sizing is routine, despite evidence to support the value of this provision from other centres, throughout the world. This needs to change.”
Ed Owen, chief executive of the Cystic Fibrosis Trust, said: “For some people with cystic fibrosis, the spiral of infection and lung damage leaves a lung transplant as the only option available to prolong life. It’s a scandal that one in three people are still dying on the lung transplant waiting list.
“That is why we’ve been working closely with transplant experts and people who have either had a transplant or are still waiting, to bring forward a series of proposals which we believe can make a real difference.
“We are calling on all bodies responsible for transplantation policy to work with us and act on our recommendations to ensure those waiting for a transplant get the organs they so desperately need and to bring new hope to their lives.”
Professor Andrew Fisher from the Institute of Transplantation, Freeman Hospital and Newcastle University, added: “Successful lung transplantation can transform the life of someone with very severe lung disease due to cystic fibrosis.
“By increasing the acceptance of donor lungs that are currently available and directing them to those most in need, we will have the chance to make sure all those with cystic fibrosis who need a lung transplant get the opportunity to benefit from it.”