The parents of a young boy with a rare condition are hoping the HSE will reverse a decision not to fund a ‘life-changing drug’.
Anne Marie Walsh Harte, and her husband Padraig Walsh – a native of Ballinakill – say they were left “reeling” by the recent news that a new treatment for children with Duchenne muscular dystrophy will not be made available by the HSE.
Their five-year-old son Lewis has Duchenne muscular dystrophy and they say it is vital that he gets the treatment while he is still strong.
They had been waiting for approval of the drug treatment, Translarna.
“This is life-changing medicine,” Ms Walsh Harte said.
In two to three years, Lewis may not be able to walk unaided. “He could have seven to ten more years of being able to walk, if this drug is made available,” she said.
Although the family now live in Castlebar, the young boy’s plight is well-known around Ballinakill, where Lewis’s grandfather Paddy, uncles and relatives live.
“We did some fundraising in Ballinakill so people would be aware of the situation and supported us generously, as they did in Castlebar,” Ms Walsh Harte said.
She described the recent news that the treatment will not get HSE funding as “devastating”.
“To us, the news comes the same as if it were a death in the family. We are totally devastated.
“This is life-changing medicine we are talking about. Everyone is just devastated as this is life-changing medicine within the muscular dystrophy community. The fact that the drug is available in 20 other EU countries and Northern Ireland makes this decision all the tougher for us,” she said.
Ms Walsh Harte questioned how the HSE has seen something which over twenty other countries have not.
Ms Walsh Harte said that her son deserves to have access to the drug and said she is appealing to Minister for Health Simon Harris to reverse this decision.
“We are trying to shame the HSE into funding it,” she said.
“Once he loses his ability to walk he will be in a wheelchair but once this happens the entire system begins to fail. The heart, the lungs and everything. The longer he can stay on his feet the longer he can keep going,” added Ms Walsh Harte.
Statement
In a recent statement released to the Irish Times, the HSE confirmed it “has written to the manufacturer of Ataluren (Translarna) advising them that the HSE will not be funding this drug”.
“The HSE is very much aware that this decision is upsetting to patients who are affected by this condition. It will also be a disappointment to their families and the treating clinicians who support these patients. However, it is of the utmost importance to recognise that the HSE Drugs Group who reviewed the effectiveness of the drug did not consider the evidence for the clinical benefit of Ataluren (Translarna) to be sufficiently strong in the context of the proposed cost and budget impact.
“There is an onus on the HSE to ensure that any new drug is cost effective. New drugs can provide improvements in quality of life, but may not provide a cure. Nevertheless, the prices sought by drug companies for such products can run to hundreds of thousands of euro per patient per annum. The HSE must have regard to its wider obligations to the 4.7 million population it serves and needs to maintain the full range of health services to all of the other patient groups within the finite resources at its disposal,” the statement read.
However, Ms Walsh Harte said they will continue their fight. They met Sinn Féin leader Gerry Adams over the weekend who has offered his support and invited them to Leinster House in September.
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