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"A travesty" - Cystic fibrosis sufferers angry over lack of funding for potentially life-changing drug

Meanwhile, the cancer drug Pembrolizumab has been approved for reimbursement by the HSE.

Image: Shutterstock/Crystal Home

A DRUG THAT can be used in the treatment of cystic fibrosis will not be funded by the government, it has emerged.

Orkambi is a drug that can be used in the treatment of cystic fibrosis – by tackling the underlying causes that lead to the condition.

The National Centre for National Centre for Pharmacoeconomics (NCPE) ruled today that the drug, at a cost of €158,000 per patient, wasn’t cost effective.

The NCPE ruled that the drug would cost over €391,000,000 over the course of five years.

Commenting on the NCPE decision, Philip Watt, CEO of Cystic Fibrosis Ireland (CFI), said that cf patients were “dismayed” by the decision.

“CF patients in Ireland are dismayed by today’s ruling from the NCPE which recommends that the ground-breaking drug Orkambi is not funded,” Watt said.

However the organisation said that the NCPE ruled that the drug wasn’t cost-effective at “submitted cost” which opened the door for future price negotiations between them and the company offering it.

CFI called on the government to enter into further negotiations with the pharmaceutical drug offering the drug – Vertex.

It also called on Vertex to significantly drop the price of Orkambi.

“We support a fairer deal for this drug but it will be a travesty if this drug is not provided to our patients or if there is a significant delay in providing this drug,” said Philip Watt.

Fighting face

Ireland has one of the highest rates of cystic fibrosis in its population in the world.

In an interview earlier this year with TheJournal.ie, Kelsey Nolan, who suffers with CF, spoke of her fight to have the medicine green-lighted in Ireland.

“CF doesn’t just affect my life and other CF patients’ lives it affects our families, friends, our day to day life and what we can do,” Kelsey wrote in a Facebook post in December of last year.

How is it okay for people to put a price limit on another person’s life or in this case hundreds of people’s lives.

pastedimage-26453 Kelsey Nolan

Speaking to TheJournal.ie Kelsey said that people with CF “need” the drug and that receiving it would change her and other sufferers lives.

“It would change my life. It would give me my life,” she said.

And if it’s money people are thinking about, it will make sense in the long run to get me off medication and out of hospital beds which cost €1,000.

Compassionate access programme

Meanwhile, Health Minister Simon Harris today the welcomed the decision by the HSE to approve the cancer drug Pembrolizumab (or Pembro) for reimbursement.

The drug, along with another drug Nivolumab or  were called “game changers” for treating cancer patients by Professor John Crown last week – who criticised the delay by the HSE in approving the dugs.

“I welcome today’s decision by the HSE to approve Pembrolizumab for reimbursement and I am sure this news will be a great relief to the patients affected and their families,” said Harris.

The compassionate access programme for the cancer drug Nivolumab has also been extended while the approval process in ongoing.

“I am pleased that Bristol-Myers Squibb have responded positively to my call to show compassion to patients being treated with the drug Nivolumab,” Harris said.

30/5/2016. Emergency Department Taskforce Meetings Source: RollingNews.ie

The compassionate access programme has been extended for 30 days until the end of June.

“A number of drugs, including the one referred to, are currently being considered by the HSE under the national medicines pricing and reimbursement assessment process,” said Harris.

I have asked the HSE to conclude their deliberations as a matter of urgency.

Read: A teenager with a big wish: ‘I want to be able to breathe’

Read: ‘Time is running out’: John Crown says cancer patients could die over delay in accessing drug

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About the author:

Cormac Fitzgerald

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