Fianna Fáil TD for Cork North-Central, Padraig O'Sullivan, has called for additional funding for Rare Disease Therapies in Budget 2023.
Deputy O'Sullivan is hopeful that his Bill, the Orphan Drugs and the Health (Pricing and Supply of Medical Goods) (Amendment) Bill 2021 will soon proceed to Committee Stage.
This will establish a new structure for Irish health authorities to assess, approve and reimburse what are known as orphan drugs for rare diseases.
The local Fianna Fáil TD said, "The current process is not fit for purpose as the Irish system does not distinguish between orphan drugs and other drugs when assessing their pharmacoeconomic value, resulting in lengthy delays for their approval. My Bill would create a separate process for assessing orphan drugs, allowing them to be streamlined and to be assessed on their individual merit, not on the same criteria as drugs for more common conditions.
"That aside, quite simply more funding is required. While Budget 2022 provided €30 million for new medicines, more is needed, as without the necessary investment and reimbursement of rare disease medicines, Ireland will continue to lag behind our EU counterparts.
"I continue to be contacted by distressed families trying to access medicines for loved ones suffering from a rare disease. There are currently 35 children in Ireland with Cystic Fibrosis aged between 6- 11 that are caught in the middle of a pricing dispute that deprives them of access to the drug Kaftio, a drug that is already available in Ireland to all other eligible adults and children with CF. This is unacceptable.
"The reimbursement process needs reform to avoid such pricing disputes and I believe my Bill will go some way towards achieving that."
Deputy O'Sullivan, along with his Fianna Fáil colleague, John Lahart, will establish an all part Oireachtas Committee on rare diseases to help highlight the issues and blockages patients in Ireland face trying to access orphan drugs.