A TD whose nephew has Friedreich's Ataxia has said he is “shocked” that the HSE Drugs Group has not recommended that a new drug to treat the condition should be reimbursed for patients.
Around 200 people in Ireland have the rare genetic condition that progressively damages their spinal cord, peripheral nerves and parts of the brain.
There is no cure and the average life expectancy of someone with the condition is between 40 and 50, according to Rare Disease Advisor.
A new drug, Skyclarys, has been found to slow the progression of the disease and it has been approved for patient use by the European Medicines Agency.
However, at an annual cost of €280,000 per patient, the National Centre for Pharmacoeconomics has said there would need to be a "significant price reduction" before the health service reimburses it.
A final decision will be made by the HSE’s senior leadership team on 25th August.
On The Claire Byrne Show, TD John McGuinness said all backbench Fianna Fáil TDs have signed a letter urging the health service to reimburse the drug.
He also praised Friedreich's Ataxia patients, who he said have waged a “very constructive” campaign, all while they are “extremely ill”.
“They have put their case, they have gone through the process, which has been really terribly inefficient and caused further trauma to their lives,” he said.
“We believe that the political response now that this issue has come to the HSE executive [should be] to declare that the reimbursement has been approved.
“These young people have suffered enough.”
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The Carlow-Kilkenny TD said Fianna Fáil TDs are united in their belief that cost should not be the overriding factor when people’s lives are at stake.
“Is that not absolutely alarming that we are now putting a cost on the lives of these young people?” he said.
“They deserve the best possible chance at life; Emily Felix, David McInerney, who is my nephew, have had their lives shattered, torn asunder.
“They haven't had the chance that they should have had, the drug will at least stall over a period of time.
“If this is down to money and it seems to be the case, then the Government must indicate to the HSE that the money will be made available.”
Deputy McGuinness continued that he has seen the impact of Friedreich's Ataxia on his nephew and believes the decision by the HSE Drugs Group has left patients in an “absolutely appalling position”.
“I have seen his life go from him being an active young man in his 20s to now being in a wheelchair, having no voice and losing his voice and attempting to live life to its full,” he said.
“He works, he's a social life - but every single day he sees something different about his body.
“It's not an emotional response; it's a response based on the fact that 11 other European countries have gone through this process and have given young people in each respective country their chance.”
Public sector waste
The Government has forecast a budget surplus of €9.2 billion this year and Deputy McGuinness believes that there is also a significant amount of waste in the public sector.
“I'm shocked as a serving politician and as someone that is close to the issue, that now comes down really to cost,” he said.
“That's really what they're talking about, €280,000 a year.
“I have seen as chairman of the Public Accounts Committee and Finance Committee in the past money squandered by the State.
“This is money that can be directed towards the health and well-being of individuals that have been counted.
“There are 200 people affected by this and the least we can do for them is to ensure that the drug is made available on 25th August.”
Main image: John McGuinness TD. Picture by: Leah Farrell/RollingNews.ie
