For Immediate Release: Lung Fibrosis Affordability Crisis

LUNG FIBROSIS PATIENTS HIT BY INCREASED COST OF LIVING AND FACING FINANCIAL HARDSHIP

Irish Lung Fibrosis Association calls for medical cards for all lung fibrosis patients in Budget 2027 as many struggle with the growing cost of living

Dublin, 23 September 2026 — People living with lung fibrosis are facing significant financial hardship as the costs of managing their condition continue to rise, according to the Irish Lung Fibrosis Association (ILFA).

In a survey to members carried out last month by ILFA on the financial impact of living with lung fibrosis, almost six in ten (59%) reported moderate or severe increases in their cost of living because of their condition.

ILFA is calling on the Government to award medical cards to all lung fibrosis patients in the forthcoming budget.

“Our patients are gravely ill. Many are too sick to work, but despite that still do not qualify for a medical card. It’s heartbreaking that they’re having to spend their life savings on medical costs, which for lung fibrosis patients can be upwards of €5,000 a year,” said Maureen O’Donnell, ILFA CEO. “Our patients need and deserve medical cards. It won’t eliminate the financial burden, but it would certainly help.”

Cost of having lung fibrosis

The survey of nearly 160 lung fibrosis patients reported increased costs for travel to medical appointments, medications, and in-home supports. Respondents also noted that electricity bills for those on supplemental oxygen had increased significantly. These increased costs had a severe impact, where one in five said they were delaying medical care, not attending appointments, or rationing medication because they couldn’t make ends meet.

The increased costs are compounded by patients being too ill to work, and family members having to cut back on work to care for their loved one.   Nearly seven in ten respondents said the disease had affected either their own ability to work or that of a family member. And as a result, one in three patients said their family had experienced financial difficulty in the previous 12 months because of their disease.

For some families, the consequences are stark.

“We are missing out on my salary and cutting back on mortgage payments and food.”

Another respondent said:

“I had no choice but to give up working.”

Living with lung fibrosis can bring a range of additional expenses, including travel to medical appointments, private medical care like pulmonary rehabilitation which isn’t available through the public system to all patients, medications, and increased electricity costs associated with oxygen use.

An ILFA example illustrates the potential annual burden. Costs including medications, consultant visits, scans, GP appointments, blood tests and increased electricity costs for supplemental oxygen users can amount to approximately €5,040 per year.

Ms O’Donnell said, “€5,040 per year is a lot for anyone to have to pay, but for patients relying on the State Pension who are spending a third of their income on medical costs, it’s completely unfair.”

One patient described the longer-term impact:

“My life savings are now almost zero.”

ILFA is warning that without targeted support, patients may be forced to make impossible choices between essential healthcare, household bills and basic living costs.

As one respondent put it:

“If no medical card is provided we’re in serious trouble.”

ILFA calls for action in Budget 2027

Ahead of Budget 2027, ILFA is calling for a package of measures to reduce the financial burden on people living with lung fibrosis.

Its asks include:

• €315,000 to continue funding ILFA programmes.
• €180,000 to lead the National ILD Framework implementation.
• €87,100 to run an ILD Registry pilot.
• €7.7 million for patient affordability measures.
  • Medical cards for all lung fibrosis patients.
  • Grants and rebates to reduce utility and travel costs.

ILFA is urging policymakers to recognise that the cost of lung fibrosis extends far beyond the medical treatment of the disease itself. For patients and families already facing reduced earning capacity, the additional costs of managing the condition can create a serious and sustained financial burden.

One patient summed up the urgency of the situation:

“Time is not on my side. It’s now I need the help. Next year could be too late.”

ENDS

About the Irish Lung Fibrosis Association

The Irish Lung Fibrosis Association (ILFA) supports people living with lung fibrosis and works to improve awareness, care and outcomes for people affected by interstitial lung disease in Ireland.

About Lung Fibrosis

Lung (or pulmonary) fibrosis is a progressive, life-limiting disease affecting approximately 5000-7000 people in Ireland. It is part of a larger group of Interstitial Lung Diseases (ILDs). Lung fibrosis is diagnosed primarily in people over the age of 50 and is generally caused by environmental conditions (less than 20% of cases are believed to be genetic). There is no cure, treatment focuses on slowing disease progression and symptom relief. Lung transplantation is a treatment option when all other treatments have failed.