Cystic Fibrosis Ireland Vows To Fight HSE On Ground-Breaking Drug

Cystic Fibrosis Ireland have vowed to fight the HSE's decision to turn down the ground-breaking CF drug Orkambi and have called for Health Minister Simon Harris to intervene. Cystic Fibrosis Ireland, Ireland's national charity supporting people with CF, have expressed their dismay and opposition to the news - leaked yesterday to a Sunday newspaper - that the Health Service Executive will not fund Orkambi, the ground-breaking drug for CF. CEO Philip Watt commented:

"We will fight this decision and we call on the Minister for Health, Simon Harris TD, to use his Ministerial powers to intervene to ensure that Orkambi is made available in Ireland for the 550 patients who stand to benefit from this life-lengthening drug. It is rare that a therapy comes along that has been shown to reduce hospitalisations by up to 40 per cent and further it significantly retards the progression of cystic fibrosis for those who stand to benefit from this drug. This drug would have resulted in other major savings to the HSE from both reduced hospitalisation and less reliance on other expensive CF drugs and reduced dependency on transplants."

With around 1,200 people with cystic fibrosis, Ireland has the highest rate of the disease per head of population in the world. We also have some of the most severe forms of cystic fibrosis. Mr. Watt explained the importance of the drug and expressed anger at the media leak:

"The long-term benefits of Orkambi have been confirmed by Professor Stuart Elborn, formerly of the City Hospital Belfast and now the lead CF clinician in the Brompton Hospital London. The data confirming the impact of Orkambi was presented at the North American CF Conference in October 2016. Cystic Fibrosis Ireland is angry at the cynical way the HSE has conveyed this information to our patients, some of whom are very ill. The decision was leaked to a Sunday newspaper even before the Minister was informed, never mind patients. It’s a disgraceful and heartless form of communication."

In a letter written to the Health Minister yesterday (November 27th), Mr. Watt states that many families are devastated by the news to refuse funding of the Orkambi drug:

"We take this opportunity to ask for a meeting with you as soon as possible to appeal this decision and to explore if there are grounds in your letter  that this is not the the end of the process. The HSE have been very disrespectful in the way that this has been conveyed to our patients through an apparently cynical leak to a Sunday newspaper at a very late hour and we have had scores of phone calls, texts and messages this morning from very upset parents and people with CF who share our sense of anger. I would request that immediate action is taken on this heartless method of communicating potentially life altering information to patients in this country, some of whom are extremely ill. We ask again that you use your powers as Minister to expedite the reimbursement of Orkambi as soon as possible as we know you have the powers to do so."

In his reply, Minister Harris said he would like to assure CF patients and their families that he "does not see this as the end of the process." Last week, Linda and Ronan Whitmarsh, parents of Finn who has CF, were featured on TV3's Pat Kenny Tonight. The programme featured an awareness video from the Yes to Orkambi campaign and also featured parents of children with CF in the audience who pleaded with the government to approve Orkambi as soon as possible. Join the conversation on Twitter @HerFamilydotie