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16 May 2022

HSE agrees to pay for drug to tackle chronic condition affecting Newbridge man

Patisiran approved

HSE agrees to pay for drug to tackle chronic condition affecting Newbridge man

Newbridge man Pat Tinsley

The life-changing amyloidosis drug, patisiran, has been approved for patients living here.

The drug is available to people with an amyloidosis diagnosis living in Europe, Britain and the North of Ireland but, until Friday last, it was not approved for use here. Well-known Newbridge photographer Pat Tinsley, is one of those living with the chronic disease and he said a previous HSE decision recommended against paying for the drug.

In February he stated the decision left him feeling “thoroughly dejected and depressed with one of the last rays of hope extinguished and the light at the end of the tunnel fading further.”

Along with 30-35 sufferers in Ireland of this rare but deadly and debilitating disease, the Kildare man stated they felt totally abandoned by the HSE.

The patisiran application and submitted representations were included on the May 2021 HSE’s drugs group agenda for consideration.

The HSE said: “Following its review, the drugs group recommended hospital pricing approval of patisiran indicated for the treatment of hereditary transthyretin-mediated amyloidosis in adult patients with stage 1 or stage 2 polyneuropathy.

“This recommendation was conditional on a managed access programme being implemented by the HSE that would support the appropriate prescribing of this medicine.”

The HSE added that as part of the National Service Plan 2021 and budgetary process, it has worked closely with the Department of Health to secure a significantly enhanced budget of €50m for new medicines in 2021. Funding of patisiran will be from this allocation

“The processes necessary to implement the managed access programme will now be developed and put in place by the HSE in order for all eligible patients with hereditary transthyretin-mediated amyloidosis with stage 1 or stage 2 polyneuropathy to access treatment with patisiran in the near future.”

James Green of the All Ireland Amyloidosis Awareness organisation, said he was “shell-shocked but absolutely delighted” by the news.

“We were not expecting to hear (a soon), so that is a completely unexpected but fantastic development.”

Sen Fiona O’Loughlin said this is very positive news for those with amyloidosis, including Pat Tinsley. “Funding will come from a €50m special budget included in budget 2021. This news will change people’s lives and I will be continuing my work to ensure that the access programme is developed as soon as possible”

Fine Gael TD and Minister of State Martin Heydon said: “Having strongly advocated on behalf of Kildare man Pat Tinsley for this drug to be made available to all Irish patients, I’m delighted for Pat and his family and also for all patients throughout Ireland who have been waiting for approval of this drug.”

The development was also welcomed by Ballymore Eustace journalist Rose Barrett O’Donoghue who was involved with Newbridge public relations expert Aileen O’Brien in a campaign calling on the HSE to fund the drug. She said: “This is great news for patients like Pat who are suffering from because it gives them hope.”

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