Cystic Fibrosis sufferers showed what it was like to live with the life-shortening disease and be waiting on the transplant list to the Shadow Health Secretary last week.
Andy Burnham, MP for Leigh, met with representatives of the Cystic Fibrosis Trust and families affected by the genetic condition at the event on Tuesday June 25.
Mr Burnham was among MP’s and other key parliamentary decision-makers to learn about the life-shortening disease and the problems associated with the transplant process.
Mr Burnham said: “I was delighted to attend this event and learn first-hand some of the issues that affect my constituents living with cystic fibrosis.
“I was also able to learn about the work of the Cystic Fibrosis Trust and find out more about their open consultation looking at the issues affecting the number of lung transplants for people with cystic fibrosis.”
The focus for CF Week 2013 has been on the transplant process. Alarmingly, one in three cystic fibrosis sufferers on the list for a lung transplant will die waiting. The disease directly affects around 10,000 people in the UK.
Ed Owen, Chief Executive for the Cystic Fibrosis Trust, said: “Too many people with cystic fibrosis are waiting for lungs that will never arrive and they will die on the waiting list.”
Despite improvements in clinical care helping sufferers to live longer, the sad truth is that only half will live to celebrate their 40th birthday. Many reach a point where their only hope of survival is a double lung transplant.
“We are pleased that MPs are showing interest in this issue and we have launched a national consultation during CF Week to look at how transplant rates can be improved for people with cystic fibrosis,” he added.
Since the first heart transplant was successfully carried out by Christiaan Barnard in 1967, organ transplants have been regarded as one of the main medical advancements of the 20th century.
Lung transplant has been available to cystic fibrosis sufferers for almost 30 years and although survival rates are improving, the sad fact remains that deaths do occur.
Once placed on a waiting list, it can take many months or even years before suitable donor organs become available. Here in the North West, waiting lists are among the longest in the country.
Kate Green, MP for Stretford and Urmston, demanded a debate in Parliament last Thursday regarding the selection and allocation policies for donated organs.
Kate learned that one of her constituents, Natalie McCusker, 18, has been waiting for more than 18 months for a lung transplant.
Kate said: “I’m concerned about Natalie’s situation and hundreds like her. I’ve called for a debate, which I hope will take place during National Transplant Week next month.”
CF Week 2013 took place from June 24 – 30. For more information on fundraising activities please visit the CF Week website here or call the national helpline on 0300 373 1000.
National Transplant Week takes place from July 8 – 14. For more information please visit the website here.