Lung disease patients devastated as 'life-changing' drug programme ends
A group of patients with severe lung disease say they are devastated after a drug company which was providing them with “life-changing” therapy has ended its compassionate access programme.
The programme, which provides them with the drug Respreeza free of charge, is to end for 21 patients with severe Alpha-1, or genetic emphysema.
They have called on Health Minister Simon Harris to intervene as the access programme will stop at the end of the month.
The therapy has been provided up until now as part of a compassionate-use programme by the drug company, CSL Behring.
However, patients were today informed at a meeting with clinicians from Beaumont Hospital, Dublin, that the company has advised that it will no longer provide access to the therapy free of charge from September 30.
A spokesman said: ”The hugely upsetting and disappointing decision was communicated by the company to medical staff at Beaumont Hospital who have had ongoing responsibility for the treatment and care of the patients concerned.
“The development follows the decision of the Health Service Executive on August 10 not to fund the therapy. Many of the patients involved have been on the therapy for more than ten years and have no other therapy option."
Clinical trial results published in The Lancet in 2015, and in The Lancet Respiratory Medicine in 2016 showed a slowing down in the progression of emphysema by 34pc in patients with severe Alpha-1.
An Alpha One Foundation patient survey has also shown a decrease in the frequency and severity of chest infections and associated hospital admissions.
Alpha One Foundation chief executive Geraldine Kelly said:
"For months now, we have been campaigning for the approval of the life-changing therapy Respreeza in Ireland. It is the only approved therapy to slow progression of emphysema in these patients and, if approved, would we believe benefit up to 60 people with severe Alpha-1 in Ireland. Of that group of patients, 21 have been fortunate to have already been able to access the therapy ̶ some for over ten years ̶ and it has been a life-changer for them.”