No reprieve for Respreeza patients

The decision not to reimburse people for a drug shown to slow the progress of genetic emphysema has been formally communicated by the HSE to the foundation representing patients affected.

The Alpha-One Foundation has called on Health Minister Simon Harris to reconsider the decision which it describes as a “devastating blow” to the estimated 60 patients who could, or, already have, benefited from Respreeza.

The notice to the foundation of the State’s refusal to reimburse the cost came on the same day that Mr Harris issued a statement in which he said it was “vital that we ensure patients have access to a sustainable supply of safe and effective medicines”.

His comment relates to the opening of a public consultation process on ‘biosimilar’ medicines which are typically less expensive to produce than more widely-used biological medicines and have no clinically meaningful differences.

Up to now, 21 patients have been able to access Respreeza under a ‘compassionate-use’ scheme operated by the drug manufacturer, CSL Behring, due mainly to their participation in a clinical trial for the past decade.

However, the future is uncertain for both these patients and 40 other diagnosed with Alpha-One antitrypsin deficiency.

“The HSE has said it would cost the State €37m over five years to fund the drug and has questioned its efficacy. Prof Gerry McElvaney, consultant respiratory physician involved in the clinical trial of Respreeza in Ireland, and chair of the foundation, said the trial was the only study he had ever seen in 30 years which slowed down the progress of emphysema. He said his patient were in dread of what might happen if the drug is withdrawn.

“We do not know what happens when you suddenly stop taking if after 10 years,” Prof McElvaney said.

He said the “really sad thing” was that patients in other European countries now have the drug available to them as a result of the trial, for which Ireland was the major centre.

Foundation chief executive Geraldine Kelly it was not too lat” for the health minister to reconsider the decision. “We ask them [minister and HSE] to take into account the cost savings through reductions in hospitalisations and spending on other less effective medicines.

“Equally, we urge CSL Behring to put forward a cost that is realistic [a figure of c€80,000 per patient per annum has been mentioned].

“These patients have been selfless in taking part in the clinical trial here, which has been of huge benefit to the company in demonstrating the efficacy of this therapy and their service should be recognised.

“Such a gesture would no doubt be noted by clinicians and future prospective patients when considering whether to support clinical trials,” Ms Kelly said.

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