Company told of urgent need to make life-changing drug available to Longford families
Longford TD Micheál Carrigy said he contacted Biogen, the manufacturer’s of Skyclarys, directly regarding the need for Skyclarys to become publicly accessible
A Longford TD has said ‘speed is of the essence’ in negotiations for access to a life-changing treatment for 200 patients as he said he recently contacted the company stressing the urgency to make it available.
Friedreich's ataxia (FA) is a neuromuscular disease, which causes loss of mobility, balance, and coordination.
Skyclarys is the 'game-changer' treatment at the centre of protracted price negotiations between the HSE and the marketing authorisation holder, Biogen (Idec) Ireland Limited.
The cost of the treatment is said to be approximately €280,000 per person, which is unaffordable to patients and their families and they have appealed to the Government to fund it.
Deputy Micheál Carrigy stated that both him and the affected Longford families had been in direct contact with the company.
“Following meetings with Longford families with Friedreich’s Ataxia earlier this year, I contacted Biogen, the manufacturer’s of Skyclarys, directly regarding the need for Skyclarys to become publicly accessible.
“I then made contact a number of weeks ago with Biogen to meet with them. I met with senior officials recently from Biogen and they have confirmed to me that they have sent proposals to the HSE representatives following their initial engagements in February regarding the Skyclarys drug.”
Deputy Carrigy urged that speed is of the essence in these negotiations.
“These drugs are developed to help people, and we need to help people. I don’t believe that the cost of it should be an impediment to making life changing differences in people’s lives."
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Skyclarys or omaveloxolone was first given the green light for use in the US in 2023 and Europe followed less than 12-months later.
North Longford woman Kiara Lynch (42), who was diagnosed with FA when she was just 13, is one of the prominent campaigners who has consistently called on the HSE to prioritise the lives of those impacted.
Kiara, who recently featured in a powerful video featuring seven female FA sufferers and one man, asked, "How much are our lives worth to the HSE?
The HSE has the authority to approve Skyclarys for treatment under the public system, but it has not yet done so, and the application remains under what has been described as 'active consideration'.