Patients missing out on medicines as State haggles with pharma firms

The HSE has delivered “significant savings” in negotiations with pharmaceutical companies, including €398m in price reductions last year. Picture: Pexels

Patients with rare diseases face challenges in accessing medication because the State struggles to meet pharmaceutical companies' price demands, the Oireachtas health committee has heard.

The HSE has delivered “significant savings” in negotiations with pharmaceutical companies in efforts to make sure as many medications as possible are bought.

This included €398m in price reductions last year, though benefits for patients are also taken into account and cost is not the only factor, the committee heard.

A discussion on drugs and medication for rare diseases focused on access, and the role international agreements can play in giving Irish patients access to better deals.

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.

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.” 

He agreed with People Before Profit TD Gino Kenny and Fianna Fáil TD Cathal Crowe that families with young children are facing delays currently in accessing a drug for cystic fibrosis, and 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.

The committee also heard from a former Belgian minister for health who said 9,000 life years were saved through a fast-tracking pact with the pharmaceutical industry there.

Former minister of social affairs and public health for Belgium Maggie de Block said it launched two initiatives in 2014, one local and one under the the BeNeLuxA agreement.

She said Belgium as a small country faces the same challenges as Ireland.

The latest data available to her showed patients directly benefiting from improved access to immunotherapy drugs, including an estimated 9,000 life years saved, with some individual patients living as long as 10 years extra.

“We had people who are now in remission for years and years,” she said.  

In relation to cost, she said: “In the first year of the pharma-pact in 2015, the National Institute for Health and Disability Insurance calculated that the patient already saved €23m. In structural terms by the end of the pact, the objective was €50m.” 

She agreed with Fine Gael TD Bernard Durkan there is value in small countries working together on medication deals.