Patients with rare diseases face “challenges in accessing medication because the State struggles to meet pharmaceutical companies’ price demands”, The Oireachtas Health Committee was told.
According to the Irish Times, HSE national director of acute operations Liam Woods said: “We have processes in place to assess the effectiveness of drugs, clinically and for patients. The processes have delivered significant savings.”
Examples given for 2021 were 29 new medicines approved by the HSE, 21 new uses of existing medicines and two extensions of medicines. The cost following negotiations was €398m less than the original offer for the next five years quoted by the pharmaceutical companies involved. However, assistant national director of the Primary Care Reimbursement Service Shaun Flanagan, who outlined the savings, also said: “There is no doubt the area is challenging. Pharmaceutical companies are private corporations, they have responsibility to their shareholders.”
When quizzed by People Before Profit TD Gino Kenny and Fianna Fáil TD Cathal Crowe why families with young children are facing delays currently in accessing a drug for cystic fibrosis, Mr Woods said that is “under negotiation.”
Mr Woods told Fine Gael TD Colm Burke it takes at least 12 months to recruit genetic consultants to work with families, as this profession is relatively new. He agreed a shortage highlighted in a 2019 report still continues to impact on families’ access to diagnosis.
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