Lung disease patients get access to ‘life-changing’ drug extended

Irish patients with severe lung disease have had their access to a “life-changing” drug extended to the middle of next year after the manufacturer agreed to provide it as part of a compassionate use programme.

The manufacturer of Respreeza, CSL Behring, recently said it was ending access under the scheme at the end of September.

Some of the patients, who have genetic emphysema, have been on the drug for up to a decade.

The Alpha One Foundation, which runs a HSE-funded screening programme for the condition in Beaumont Hospital welcomed confirmation from CSL Behring that it will continue to provide it to 21 patients with severe Alpha-1 (genetic emphysema) until mid-2018.

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The organisation said that although the pharmaceutical company had said it would supply the drug, clarification was needed on who would cover the cost of administering it to patients, which up until now had been covered by the company.

HSE director general Tony O'Brien told an Oireachtas health committee in February that an evaluation of Respreeza had been completed and, based on "the clear recommendation from the national drugs committee, it is not recommended for reimbursement on clinical grounds".

The pharma company will continue to provide the therapy to the 21 patients pending the start of a new clinical trial for the same therapy but with a higher dosage.