Campaign for Government Approval of Orkambi: “They are putting a price on our child’s lives.”

15354128_10209739695242387_1360940305_o Campaigners gathered today outside the Dáil in efforts to suede the government to approve cystic fibrosis treating drug ‘Orkambi’.

The NCPE (National Centre for Pharmeconomics) has recommended the government not to approve the drug as it does not represent value for money.

Vertex, the pharmaceuticals company manufacturing the drug are currently charging €160,000 per patient annually, while the National Pharmaceutical Agency has valued the drug at €30,000 per annum.

The final decision rests with Minister for Health Simon Harris who will receive a recommendation from the HSE, but a report in the Sunday Business Post indicated that the HSE would not recommend funding the drug.

Significant impediments blocking approval of the drug are its hefty price tag and gaps in its effectiveness. Professor Michael Barry of the NCPE said Orkambi would only work on about 25% of patients.

“You’re being asked to pay a really high price for a drug which won’t work in a lot of people,” he said.

Taoiseach Enda Kenny has indicated that the government would be willing to approve the drug if Vertex were willing to come down on the initially quoted price, but it does not appear as if they are willing to do so.

Lisa McMahon from Cork was protesting outside the Dáil today in the hope that Orkambi will be approved. She has two children between the ages of five and four, who are diagnosed with a mutation of Cystic Fibrosis that will respond to the drug Orkambi.

Cystic Fibrosis is a progressive disease causing lung function deterioration as well as affecting the pancreas and other organs. There is no cure but Orkambi has proven as an effective treatment in some cases.

Lisa believes that access to the drug would result in a significant improvement in the lives of her children that would reduce hospital admissions, increase lung function and ultimately let them “lead a normal life.”

Vertex has approved the use of Orkambi for patients from the age of twelve onwards.

According to Lisa some people in Ireland diagnosed with Cystic Fibrosis are receiving Orkambi on a “compassionate” basis.

McMahon and her family as well as other sufferers of Cystic Fibrosis face a situation in which they are being denied the only hope of live saving treatment due to a dispute over money. Ireland is also the country with the highest instances per capita of Cystic Fibrosis worldwide.

“They are putting a price on our kid’s lives.”

“They are forgetting there are people in the middle, and some of these people are dying.”

However it should be acknowledged that in England and Australia funding for Orkambi was rejected for similar reasons. Vertex has indicated that it believes Germany will be the only European country to contribute to sales in 2016.