Fund set up to aid campaigner Orla Tinsley with transplant costs

‘My time is running out’: Cystic Fibrosis campaigner needs double lung transplant

A fundraising drive has begun to assist Cystic Fibrosis campaigner Orla Tinsley who is in need of a double lung transplant.

Ms Tinsley has spent years campaigning for better treatment for Cystic Fibrosis (CF) patients, and has written extensively about the condition for The Irish Times since 2005.

CF is an inherited chronic disease that affects the lungs and digestive system of about 1,200 children and adults in Ireland.

Her friend and fellow writer Belinda McKeon has now set up a GoFundMe page to cover the costs associated with a double lung transplant, which Ms Tinsley now needs after going into respiratory failure last year.


The page has a goal of raising $50,000, and at the time of writing it had already raised over $17,000.

Ms Tinsley’s activism drew national attention to the shortcomings in the level of care for CF patients in Ireland and led to the opening of a dedicated CF unit at St Vincent’s Hospital in Dublin in 2012.

In 2015 she wrote about the effect which the drug Orkambi had on her, calling on the Government to make it available to patients here.

“I realised I no longer lived from month to month, beneath the weight of constant intense medical monitoring and painful evaluation of every single action I took and how that might affect my energy and health for the day.

“I lived in this explosion of the now... This was a miracle for me.”

The drug Orkambi was approved for funding by the Minister for Health this year after an extensive campaign by patients and their families.

She currently lives in New York after taking up a scholarship at Columbia University in 2014 and is now on a waiting list for a transplant at Columbia New York Presbyterian Hospital.

'My time is running out'

Writing on the fundraising page, Ms McKeon said: “There’s no way of sugar-coating this: Orla needs this transplant, it’s obviously a very serious surgery, and while her health insurance will thankfully cover the transplant, there are aspects of care and recovery (including copays, mediation, transport, oxygen and much more) which are not covered by insurance.

“After-care is crucial, and it’s expensive. That’s where we can help.”

“Orla’s transplant team have advised that she should have a large contingency fund in place which can be put towards these costs.”

Writing on the page herself, Ms Tinsley said “I am older now and my time is running out. Unless I get a life saving lung transplant I will die.

“Transplant is about recovery and hard work afterward where I will have to rehabilitate and live with my new lungs. Hard work afterwards is what make the difference in survival.

“I need to stay close to the hospital for one year until I recover and work hard at rehabilitation and take on all the other challenges post transplant life bring. I am ready for this.

“But I need your help. I am so grateful to Belinda for being so supportive and taking the pressure off me at this time.”

The GoFundMe page can be found at this link.

Niamh Towey

Niamh Towey

Niamh Towey is an Irish Times journalist