Drug gives CF patients ‘their lives back’

A mother who went into politics in a bid to improve the life of her young child got the news she desperately wanted yesterday — that a cystic fibrosis wonder drug will be available to patients in Ireland from next month.

Drug gives CF patients ‘their lives back’

Fine Gael TD Áine Collins was one of a number of people who openly wept when Health Minister James Reilly announced that Kalydeco, a groundbreaking new medicine for the treatment of CF, will be available from Mar 1 for patients with a specific strain of the disease. Ms Collins previously said she was considering emigrating to the US to avail of treatment for her daughter Lily, 4, who has CF, because the services here were so poor.

Yesterday, she said “as a parent, all my hopes and dreams have come true” and that the new drug would “literally change her [Lily’s] life”.

The announcement by Dr Reilly, who was opening the new Mercy Urgent Care Centre in Cork, was welcomed by a number of campaigners who attended the event.

There was genuine surprise given that the Government’s own national pharmacoeconomics advisory group said this month that the cost of the drug — €230,000 per patient per annum — was prohibitive and it could not recommend reimbursing patients, despite the drug’s effectiveness.

Dr Reilly said there had been negotiations around the price of Kalydeco.

“It’s a substantial figure but nonetheless, how do you value the life of a child?” he said.

It is estimated that the drug will benefit about 120 patients.

Even though the HSE normally decides on whether to reimburse drugs, Dr Reilly said on this occasion, the HSE came to him seeking direction “because of the nature and scale of the money involved here [c€28m], but also because of the broader societal issue”. Following a conversation with Taoiseach Enda Kenny yesterday morning, the drug was given the green light.

Through her tears, CF patient Pamela O’Connor, 29, from Hollyhill, Cork, said she felt she had been given her life back.

Pamela, whose brother Jason also has CF, said she now has a chance of seeing her son Scott grow up. Scott celebrated his 10th birthday yesterday.

Kerryman Joe Browne, whose son Pádraig has CF, and who has fund-raised tirelessly through his Build4Life charity, for a new CF unit at Cork University Hospital, was in tears. So too was Linda Coleman, from Blackrock, Cork, whose 7-year-old son Pierce has CF.

“Since I heard about this drug in 2009, I’ve been waiting and hoping and praying. Truthfully, this is the best day ever. It will hand him his life back,” said Linda.

Ireland has the highest rate of CF in the world, and one of the lowest life-expectancy rates.

Access denied

- More than 200 seriously ill people with haemophilia and hepatitis C are being blocked from accessing new life-saving drugs because of chronic HSE staffing gaps.

The Irish Haemophilia Society confirmed the situation last night as the cystic fibrosis medication breakthrough was revealed.

Haemophilia is a potentially lethal blood condition that prevents a person from developing blood clots, meaning even a small cut can see them bleed out if it goes untreated.

Two new drugs can effectively cure sufferers of the condition who also have hepatitis C — a dual medical problem affecting more than 200 Irish people.

The IHS said these patients have been barred from accessing the treatment in seven HSE-designated hospital pharmacies due to a lack of staff.

The drugs were licensed for use in Ireland last year, with IHS chief executive Brian O’Mahony describing the delay as “reprehensible and indefensible”. The HSE said it was attempting to recruit more hospital pharmacists to ensure the treatment was available “in a timely manner”.

— Fiachra Ó Cionnaith

Picture: Kathleen Lynch, the minister for mental health, right, with CF patient Pamela O’Connor, Linda Coleman, whose son has CF, and Joe Browne, who also has a son with the condition, after Health Minister James Reilly announced some CF patients would receive a new wonder drug. Picture: Denis Minihane

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