Hundreds of people took to Dublin’s streets on Rare Disease Day in protest against the recent refusal of Spinraza access by Ireland’s Health Services Executive (HSE). The protest was organised by SMA Ireland and received strong support from the public.
Ireland’s health authorities have consistently refused to provide SMA treatment in the country. In a recent letter seen by Irish families, HSE claimed that the manufacturer demanded between €380,000 – €600,000 per annum per patient for the drug.
HSE’s claims met with disbelief, because even the list price of Spinraza is significantly lower than those numbers, at €225,000 / €450,000 per annum. The letter thus has put a huge question mark over HSE’s credibility and good intentions.
Ireland is a member of BeNeLuxA, an initiative of five EU countries to jointly appraise drugs and negotiate prices. BeNeLuxA negotiated one of the lowest Spinraza prices in Europe already back in July 2018, which allowed treatment access in Belgium and the Netherlands.
Ireland’s SMA families had all the right to express outrage at their public healthcare provider. The country lags behind most of Europe in providing access to rare disease treatments.
The Dublin protest showed the strength and determination of Irish SMA families who marched bravely through the capital’s streets on this cold winter day. Their demands received strong support from the public and the press. Several MPs spoke on Families’ behalf, and Sinn Fein published the video statement below.
As communicated to us by SMA Ireland, there are 25 children and an estimated 50 adults with SMA in the country. HSE is adamant that if introduced, the treatment will only be made available for children, and adults will not be treated.
Ireland has the second highest GDP per capita in the European Union.