HSE approves funding for Skyclarys after Biogen submits improved offer

The HSE has approved funding for the drug Skyclarys, which is used to treat patients suffering from Friedrich’s ataxia, following a substantially improved financial offer by Biogen.

In a statement, the HSE decided to “approve reimbursement for Skyclarys based on the new commercial offering.”

The Echo understands that his offering was described as very different “to that which the HSE Drugs Group considered.”

Friedreich’s ataxia is a rare degenerative disease that affects approximately 200 people in Ireland and causes progressive damage to the spinal cord, peripheral nerves and the cerebellum part of the brain.

The pharmaceutical company Biogen develop this treatment, which is the only prescription medicine on the market that is designed to slow disease progression.

Earlier this month, a HSE group was met with criticism from government officials and activists following its recommendation to refuse funding for the life-enhancing drug.

Minister Catherine Ardagh was one of 48 government officials who signed a letter to HSE leadership criticising the system that is used in Ireland for approving funding for new drugs, which is known as reimbursement.

Councillor Vicki Casserly, who has worked closely with people diagnosed with Friedrich’s ataxia and their families, commented on the news that broke on Tuesday.

“I’m glad that the pharma company have agreed on something attainable because finance shouldn’t be a barrier to keeping life like that either.

“It’s such a positive day for the community, and I’m so glad it gives them the hope and the quality of life they want to maintain for the foreseeable as well.”

The good news comes days after a demonstration was held in Dublin City by hundreds of campaigners who marched from the Garden of Remembrance to Custom House Quay.

The goal of this demonstration was to convey to the HSE that time is of the essence for those living with Friedrich’s ataxia and a decision must be made sooner rather than later.

This decision was made just two days after the demonstration was held, which brought great relief to campaigners and their families.

Skyclarys is not a cure for Friedreich’s ataxia, but it can drastically change the quality of life for those living with it by slowing the progression of the disease and allowing individuals to live independently for longer.

“If somebody was now diagnosed and has access to this drug from early intervention, it would completely change the landscape of life for that person.

“It could mean that their life will inevitably change because although it’s not a cure, it maintains their function for longer and gives them greater dignity and independence,” Cllr Casserly explained.

Funded by the Local Democracy Reporting Scheme