Bernie Kennedy (seated), with Deputy Robert Troy (left) and her husband Des.

Mullingar hep c suffer given the chance of life

A Mullingar woman who is dying from hepatitis C contracted from a contaminated blood transfusion in the 1980s has been “given the chance of a life” after being selected for trials of a new drug that could cure her condition.

Bernie Kennedy told the Westmeath Examiner that she is “thrilled” to be among the first Irish hepatitis C sufferers to be given access to Sofosbuvir, a new direct acting antiviral, which has cure rates of 90%.

Mrs Kennedy, who also suffers from cirrhosis of the liver as a by-product of her condition, is one of 120 sufferers to be included in an early access programme for Sofosbuvir, which costs €50,000 for each three-month round of treatment.

Although she contracted the disease in 1987 after receiving a blood transfusion in what was then the Mullingar General Hospital, Ms Kennedy learned that she had hepatitis C in the mid-1990s when it emerged that more than 1,000 patients had been given contaminated supplies.

“It came out that anyone who had got transfusions between certain years should go [for testing],” she told the Westmeath Examiner. “I said I’d get it done and laughed about it. Never in a million years did I think I would be one.
“I got a call one day when I was at work – my doctor said that she wanted to see me and to bring down some members of my family. It was awful at the time to think that you had been given contaminated blood.”

The virus lay dormant in Ms Kennedy’s system until 2006, when she and her husband Des were then living in Australia. Since then her condition has deteriorated, as has her quality of life.

“It happened in January 2006, I’ll never forget it. I took this terrible pain and from then on, it never left. You are so tired. I’d be very sick with vomiting and other things. You catch everything, your immune system is so low, you catch everything that is going. If it isn’t one thing with me, it is another.”

She and husband Des got a glimmer of hope last year when they heard about Sofosbuvir through the support group Transfusion Positive. However, while the drug, which also reduces the risk of cirrhosis-based complications in 80% of patients, was being used to treat patients in a number of European countries including Scotland, it still hadn’t been approved in Ireland.

After meeting the Kennedys in the summer, Deputy Robert Troy agreed to raise the issue in the Dáil.

During a topical issue debate on September 24, the Fianna Fáil TD called on the minister for health “to intervene to insure that the HSE puts in place an early access programme for patients with hepatitis C to a new direct acting anti-viral drug”.

He said: “We all know that these patients were infected with hepatitis C through no fault of their own. Their infection came about as a result of negligence on the part of the state.”

Mrs Kennedy, who began her treatment on Monday last, December 8, believes that Deputy Troy’s intervention was decisive, but while he welcomed the minister’s decision to introduce the early access programme, the TD says that delays due to concerns about the cost of the drug placed hundreds of people such as Mrs Kennedy at risk.

He also noted that Mrs Kennedy’s case highlights the merits of the Irish political system.

“Some people criticise the political system saying that it is too parochial, but this goes to show the benefit of having TDs interacting closely with constituents. If I hadn’t met the Kennedys, it mightn’t have come to my attention. The floor of the Dáil and the mechanisms, such as questions to the taoiseach or ministers or topical debates, give you the opportunity to raise something that is life changing at the end of the day.”

As for Ms Kennedy, she is looking towards 2015 and beyond, with renewed hope.

“I’m thrilled,” she says, “over the moon. It’s given me a chance of life. You just start to accept that you were going to go and that was it.”