‘Managing Cystic Fibrosis is difficult enough, without the added worry of diabetes’

The plight of cystic fibrosis (CF) patients with diabetes who are no longer entitled to glucose monitors was raised at last week's meeting of Meath County Council.

Councillors agreed to a motion by Cllr Sarah Reilly calling on the Minister for Health and the HSE to reinstate funding for continuous glucose monitoring (CGM) systems for people with cystic fibrosis-related diabetes.

The call came as one local patient has moved to highlight the situation which threatens the health of CF patients with diabetes.

Kells man, Paul Murphy, explains that while Type One diabetics are entitled to the monitors, either on medical cards or though the Primary Care Reimbursement Service (PCRS), CF patients with diabetes are not.

"Diabetes is a complication of cystic fibrosis. Growing up we are encouraged to try to maintain our weight, eating high calorie food, but that can lead to diabetes. We need monitoring, use insulin and our blood sugars can rise and fall sharply. It is a life shortening condition.

"It is a huge worry. Managing CF is difficult enough, without the added worry of diabetes. The monitors help manage blood sugar levels, without it, you can have very high or very low blood sugar levels for long periods, causing a lot of problems," he said.

At last week's meeting, Cllr Reilly said the monitors play a vital role in managing health, preventing complications, and improving quality of life.

"They allow for real-time tracking of blood glucose levels, helping to prevent dangerous highs and lows and enabling better long-term health outcomes. For people with CF, maintaining stable glucose levels is essential, as elevated blood sugars can significantly impact lung function, weight maintenance, and overall disease progression.

"Until recently, the Primary Care Reimbursement Service (PCRS) provided funding for CGMs to all patients with CF-related diabetes on insulin. However, this funding was unexpectedly discontinued for new patients in January 2024, leaving many without access to this essential technology. This change has placed a significant burden on patients and families, both financially and medically, and many are now struggling to manage their condition effectively without proper tools.

"CGMs are not a luxury — they are a proven, cost-effective means of reducing hospital admissions, improving quality of life, and enabling patients to manage their health with greater independence."

Paul, who will be 50 next year, developed insulin dependent diabetes around 10 years ago. "It is a huge worry. I have to have retinal screening because it can affect eyesight and it also affects circulation. Diabetics without CF can usually feel when their sugars are rising or falling, but we don't seem to get that," he said.

Paul's prognosis as a CF patient was very poor when he was born, with a life expectancy at that time in just single digits.

He worked hard to keep fit, took multiple medications to keep his lung function up and chest infections away, but by 2020, CF was getting the upper hand and he was looking at a lung transplant, but a new wonder drug called, Kaftrio, saved his life.

"I was down to 30 percent of normal lung function; struggled to breathe at all and spent nights constantly coughing. Getting out of bed was the most challenging job of the day as my lungs would close more during the night. I’d spend hours in the morning on a nebuliser machine, inhaling Ventolin and antibiotics before I’d even make it to the shower to start my day.

“Thankfully though, my fight to stay alive until proper treatments were found, did pay off, with a new wonder drug called Kaftrio finally getting EU approval around the same time. This, and other new drugs mean people with Cystic fibrosis can now breathe, and live without fear, an incredible sensation that people without CF or lung problems take for granted.

“I was one of the lucky ones. It's not a cure, but I’m flying now compared to the past; if this drug hadn’t arrived until six months later, I probably wouldn’t be here now, it saved my life."

Paul, whose dad, Joe was a former county footballer was a keen footballer himself winning several underage national tournaments with Kells, and county titles at every grade up to and including U-21 and he had a long senior career with Gael Colmcille, where he’s now involved in coaching.