25 Sept 2022

VIDEO: Longford mother and CF campaigner sends emotional message to Health Minister Simon Harris - All we want for Christmas is Orkambi

Longford mother of three and Cystic Fibrosis (CF) campaigner Hazel Robinson has made an emotional appeal to Minister for Health Simon Harris TD from her daughter’s bedside at Our Lady’s Children’s Hospital, Crumlin.

For the past four years, CF sufferer Gypsy has spent Christmas in Crumlin hospital and this year alone, she has spent eight months in hospital.

Mum Hazel firmly believes if her 14-year-old daughter could gain access to the drug Orkambi that it would be life changing.
At the moment Orkambi would cost in the region of €159,000 per patient per year to administer.

Hazel, with Gypsy by her side, decided to make the video, yesterday, inviting Minister Harris to the hospital and give them the opportunity to present to him a petition containing 40,000 signatures calling for the approval of the drug Orkambi.

“It is extremely hard to put yourself out there for everyone to see. But we feel like we are running out of options. I'm really hoping that the Minister will respond and show that he cares and is behind us 100% #YesOrkambi,” remarked Gypsy.

Last Monday night, on the Claire Byrne Live TV show, another Longford CF sufferer and campaigner Jillian McNulty pleaded with Vertex Pharmaceuticals, the manufacturers of Orkambi, and said, “I don’t want to die. I don’t want to be without this drug.”

On Wednesday last, December 7, Jillian took her campaign, on behalf of 550 CF patients in the country, to Dáil Eireann, where she and her supporters staged a protest.

The following day, Vertex, released a statement saying it ‘welcomes the opportunity to meet with decision-makers at the HSE in an effort to reach an agreement so people with cystic fibrosis (CF) in Ireland can access Orkambi, and to end the uncertainty and anxiety the Orkambi reimbursement process has caused for the CF community.”

The statement adds, “Over the past year, as we have been working toward an agreement with the HSE, we have come to know many of these people with CF. With each passing day, they are progressively getting sicker and losing lung function. We share their sense of urgency to join the thousands of people around the world who already have access to Orkambi.”

The statement concluded, “Vertex is acutely aware of the anxiety and disappointment this lengthy process is causing and is committed to a speedy resolution.”

Also read: Longford mother and CF campaigner highlights family's challenges

Also read: Longford woman to fight the good fight over Orkambi

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