Saturday 22 October 2016

'The cystic fibrosis drug deemed too 'expensive' for the HSE completely transformed my life' - CF sufferer's plea

Eilish O'Regan and Geraldine Gittens

Published 02/06/2016 | 02:30

Jillian McNulty has taken Orkambi for the past three years.
Jillian McNulty has taken Orkambi for the past three years.
Health Minister Simon Harris Photo: Tom Burke

Around 500 people with cystic fibrosis have suffered a setback in their efforts to secure state funding for an expensive new breakthrough drug after experts said the price demanded for the medicine made it too costly.

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The drug Orkambi would cost around €159,000 per patient and could not be funded at this price, as submitted by the manufacturers, the National Centre for Pharmacoeconomics said.

Cystic Fibrosis Ireland said it was dismayed at the ruling but added that it opened the door for more negotiations in order to reduce the cost.

Its chief, Philip Watt, said the Government needed to urgently clarify if it would enter into further talks with the pharmaceutical company Vertex.

Jillian McNulty, who has been taking the drug for three years as part of a trial, told RTE's Morning Ireland that she has no doubt that the drug is life saving for some people, and without it she may not be here.

She said the drug had transformed her life and reduced her hospital admissions.

Ms McNulty said Orkambi allows people with cystic fibrosis who take it to "live a normal life, or as near a normal life, as possible".

"My lung functions had dropped from 59pc to 39pc the day that I started taking Okambi."

She said she had to be admitted to hospital every four to five weeks, staying for a minimum of six weeks, and her hospital stay could extend to as far as three months.

"My life revolved around hospitals. I started Orkambi and within about six to eight months things started to change... I started to feel better."

"Orkambi completely transformed my life... if it weren't for Okambi I might not even be here."

Meanwhile, the HSE drug group has recommended that Pembrolizumab - known as Pembro - should be covered under the drug scheme for the treatment of melanoma.

The recommendation will be sent to HSE executives and passed on to Health Minister Simon Harris.

It is still unclear how it will be funded. It will cost around €63m over five years.


Some 130 patients would benefit from the drug, which costs around €70,000 per patient a year under the price demanded by the maker MSD.

The group deferred a decision on a second new cancer drug, Nivolumab, which treats melanoma and lung cancer.

It is expected to be re-examined in relation to its use in the treatment of other cancers,

The manufacturer of this drug, Bristol-Myers Squibb, is not disclosing its price. The previous cost was estimated at €134,000 a year per patient.

The company announced yesterday that it would continue to provide the drug to a group of patients who are getting the medicine under a compassionate access programme.

This has been extended for another month for patients with advanced lung cancer.

Several more expensive new blockbuster drugs are coming on stream at the cost of around €300m.

The ultimate decision on funding falls to the minister for health.

Irish Independent

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