The Sligo Champion

CF campigners are delighted with deal

HEALTH MINISTER HARRIS CONFIRMS DRUG ORKAMBI WILL BE MADE AVAILABLE

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FIANNA Fáil TD for Sligo- Leitrim Marc Mac Sharry has welcomed the deal struck between the Department of Health and Vertex to provide the life- saving CF drug Orkambi.

However, he has expressed concern about the “agreement in principle” referred to by Minister Harris, and is calling on him to clarify that the rollout of the drug will not be delayed.

Campaigner­s have been appealing to the Health Minister to enter negotiatio­ns with the company to provide the drug to more than 1,000 people with CF, whose lives can be radically improved by Orkambi.

“While the agreement in principle is welcome, the fact that it has taken this long to get to this point is beyond reprehensi­ble. I am seeking assurances from Minister Harris that this “agreement in principle” is not another delaying tactic and that Orkambi will be offered to CF sufferers as a matter of priority.

“Since this issue was first raised, well over 18 months ago, countless numbers of CF sufferers have seen a serious deteriorat­ion in their conditions, and unfortunat­ely in a number of cases these sufferers have lost their lives. The Minister’s reluctance to engage with Vertex is simply unacceptab­le. Despite publically promising that the matter would be brought to a close in early March, the company heard nothing from Minister Harris or the Department of Health for almost 2 months”, said Deputy Mac Sharry.

“The deal includes Orkambi, Kalidyco and a new breakthrou­gh drug Tezacaftor/ Ivacaftor, which have all proven effective in people suffering from CF and will make a huge difference to people suffering with the condition here in Ireland.

“The process for the admission of new drugs onto the Drugs Reimbursem­ent Scheme is inadequate and obscure. There are currently 31 drugs falling between the National Centre for Pharmacoec­onomics and the drugs committee of the HSE, and the only recourse that patients have is to air their grievances on Liveline or to organise public protests.

“We need a new transparen­t process that puts patients’ lives first, and which commences and concludes in a timely manner. France and Germany’s early access programme, underpinne­d by a functionin­g structure is one model we could take a lead from. I’m calling on Minister Harris to seriously consider a new approach to the current system, which is failing seriously ill patients”.

Meanwhile the family of CF patient Grainne Golden ( 21) who passed away last year say they are delighted with the news. Mother Terri and daughter, Aisling were on RTE’s Ray D’Arcy Show last Saturday night at 10pm to discuss their reaction to the good news and to tell their story.

The pair have been extremely vocal on the fight for Orkambi. It was Grainne’s dying wish that the campaign for the drug be stepped up. Both Terri and Aisling said that Grainne had been an excellent patient advocate and the fact that the deal has now been done would have made her so happy.

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