John Hannan, aged 68, was returning home to Mallow by train yesterday from Dublin to break the news to his family that, three weeks from today, his access to a drug shown to slow down his genetic emphysema will be no more.
Although the HSE said last month that the State was not prepared to reimburse the cost of Respreeza, estimated at around €84,000 per patient, the 21 beneficiaries had still hoped for a breakthrough.
However, when 11 of them gathered in Beaumont Hospital yesterday to meet their consultant respiratory physician, Gerry McElvaney, it was to hear that, from September 30,the drug will no longer be available free of charge.
Until now, patients have been able to access it as part of a compassionate-use programme courtesy of drug company, CSL Behring, due mainly to their participation in a clinical trial.
However, the future looks bleak for these patients and 40 others diagnosed with Alpha-One antitrypsin deficiency (AATD).
“Words don’t describe how I feel,” John said. “I was the second patient in the world to go on Respreeza, I’ve been on it for more than 10 years and no-one, including CSL Behring, can tell us what the consequences will be when we come off it.”
John said while he appreciates CSL Behring’s compassionate use, there was a quid pro quo.
“They have been gathering information from our bodies for the past decade, so they have got something back,” said John.
In a statement, Geraldine Kelly, CEO of the Alpha One Foundation, described the HSE’s decision not to reimburse the drug and CSL Behring’s decision to withdrawn it as “unconscionable”.
“We have a therapy that works... it is wrong of the HSE and the Department of Health not to fund it,” said Ms Kelly.
“ Equally, it is wrong for a company to discontinue a therapy that works to patients who have provided it with a rich resource of research information.”
CSL Behring said in a statement: “We remain committed to AATD research to improve the quality of life of people living with the condition. Based on this commitment, we are currently in discussion with health authorities in both the US and Europe to finalise a randomised, non-placebo controlled study design which seeks to demonstrate the long-term safety and efficacy of Respreeza.
“CSL Behring is evaluating clinical sites in Ireland which may then be offered the opportunity to recruit severe AATD patients.”