Updated: 12/04/17 : 06:09:17
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Mac Sharry calls for clarity on Orkambi deal

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 Cystic Fibrosis 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.

The minister stated in Dáil Eireann yesterday, Tuesday, "I am pleased to inform the House, but most particularly CF patients, their families and friends, that the HSE and Vertex have today confirmed that an agreement has been reached in principle on the commercial terms for the supply to Irish patients of Orkambi (for patients aged 12 years and older) and for Kalydeco (for patients aged 2-5) from next month."

"I am pleased that we are now in a position to reassure people we are now in the concluding stages of an agreement as I outlined earlier and expect the further work in the coming days will bring this matter to finality," he concluded.

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.

Deputy Mac Sharry said, “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 publicly 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”, the Sligo-based TD said.

    Deputy Marc Mac Sharry with Terri and Aisling Golden from Sligo outside Dáil Eireann. The posters feature Terri's other daughter Grainne who succumbed to Cystic Fibrosis in 2016. Photo: Twitter

“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,” concluded Deputy Mac Sharry.