By Claire Corrigan
A local mother of a 15-year-old Mullingar girl who is suffering with Cystic Fibrosis (CF) is currently camping outside Leinster House in Dublin, in the hope that it will speed up a decision on the approval of the drug, Orkambi.
The mother-of-three has described the treatment of CF sufferers and their families as “disgusting” and “terrifying”.
Hazel Robinson who lived in Mullingar for many years and where her daughter Gypsy, was born, said she was forced into taking drastic action -after recent deaths – in a desperate attempt to highlight the urgent need for the availability of a CF wonder drug to sufferers.
Over the past year Hazel has enlisted the help of high profile personalities Brendan O’Carroll, Gavin Duffy and jockey Ruby Walsh to support the #YesOrkambi campaign.
The HSE and pharmaceutical company Vertex were due to meet on Monday, 10 April, to discuss a deal to fund the cost of Orkambi, priced at around €150,000 a year per patient and another CF drug, Kalydeco.
Hazel said she was preparing to take part in an water charges protest on Saturday, 8 April, when she decided to set up camp outside the Dáil in a small pop-up tent. “I thought if I can march the streets over water, I can definitely do something more proactive when it comes to CF patients. The Government need to be fully aware of the urgency of this and this is people’s lives.”
“Desperate times call for desperate measures- I can’t sit back any longer and watch children suffer when I know that there is something that can help them. I’m really hoping that the outcome of that meeting is a ‘yes’. I want Simon Harris to stick to his promises because he has stated that he was hoping to finalise a deal over a month ago.”
Hazel who now resides in Drumlish, Longford, also spoke to Topic about her frustration that her teenage daughter, who is currently receiving the drug, will likely need a transplant after years of Cystic Fibrosis (CF) wreaking havoc on her lungs.
COUGHING UP BLOOD
“She had been coughing up blood over Christmas and she wasn’t getting any breaks out of hospital at all. We were getting out for maybe two weeks at the most and the minute she’d leave the hospital she’d go downhill really quickly.
She was having to take antibiotics three or four weeks at a time because the IV had stopped working,” she said.
Last week, US manufacturers of Orkambi expressed frustration at delays in reaching agreement with the HSE on approving the cystic fibrosis drug for Irish patients.
Vertex Pharmaceuticals said it was “increasingly perplexed” at not hearing from the HSE since early February, having submitted a new price proposal eleven weeks ago. This is in spite of indications by Taoiseach Enda Kenny and Minister for Health Simon Harris that a deal is expected to be finalised within weeks.
Hazel told Topic that her daughter’s lung function was well below 50 per cent in January and that her health overall was declining rapidly. “Because of the constant bleeding her consultant said that they needed to speak to me seriously after Christmas about Gypsy.”
Throughout Christmas the family were ‘walking on eggshells’ with the young girl experiencing constant bleeds. “We didn’t know if we had to rush to A and E. We were expecting a massive bleed and we were terrified.”
The mother and daughter returned to Crumlin Hospital after the New Year for a meeting with the consultant where Hazel was informed that if Gypsy’s condition was not brought under control, it would be necessary to send the teenager to Newcastle to meet with a transplant team. “He said that she had deteriorated so much, that they had run out of options.”
At this point the consultant applied to Vertex Pharmaceuticals to obtain CF drug Orkambi on compassionate grounds due to the seriousness of her condition. “She was finding every day really hard at this stage and had no energy and was just very unwell. We got a phone call saying that she had been accepted on compassionate grounds which was brilliant. She started on her Orkambi about a month ago and has begun to respond much better to the IV. It’s been over a year since she has only had to have two weeks of IV instead of maybe six weeks.”
The doctors performed another pulmonary function test which showed that Gypsy’s lung function had improved significantly. “It was the highest it had been in over a year. The doctors said that they couldn’t believe it.”
The devoted mother spoke of her delight that her daughter was able to complete a full week of school recently for the first time in several years. “I couldn’t tell you the last time she was able to do a full week. Last week was the first week she was able to carry her schoolbag and stay the whole day. A full week is not much to hope for but we were absolutely over the moon. It’s a huge thing for us. It’s the first time that she has felt that she has been normal in I don’t know how long.”
Hazel says that while she is glad that her daughter is receiving Orkambi, she will continue to campaign to ensure the drug to be made available to CF sufferers. “We are so delighted that Vertex has put Gypsy on Orkambi but there are so many other people out there who are deteriorating rapidly. I started the campaign for Orkambi so that sufferers could get the drug before it got to the stage where they were facing lung transplants or death. We are still pushing for Orkambi to be approved.”
Hazel said that she feels that the Government have done little to help CF sufferers. “I feel that we’ve been given a massive run around – we have been told that negotiations are going on and then we have Vertex contacting members of the CF community to say they have heard nothing from the Government in several weeks.”
The mother-of-three said she was very upset that her daughter’s lungs have deteriorated to the point that she may need a lung transplant. “This could have been prevented if she had been given the drug when it was first approved ten months ago. In the space of that time she has been in ICU and had the Swine Flu. The damage that has been done over the last year is irreversible. I hope that the Orkambi will stablise it as much as possible.”
Hazel said the drug is taken in the form of two tablets in the morning and two in the evening. “A transplant is pretty much the worse thing that could happen. It’s terrifying and you are wondering if she will get though the surgery and then she will have to go through anti rejection treatment. The only other alternative is death. It’s the last place we wanted to be and I can’t help being angry with the Government for letting it get this far. This has been going on way too long.”
Hazel will be attending a strategy meeting this week and is due to take to the streets with CF sufferers and their families to protest outside the Dáil on 12 April. “This is the third demonstration we’ve held along with countless other campaigns. I can’t believe our country has gone to the stage where sick people are begging for their lives outside the Dáil and they just seem to be sitting on their hands.”
She said that despite her daughter receiving the drug, it has been a bittersweet experience. “I wish this was our happy ending but unfortunately it’s not. When I was driving to collect her from school on Friday, I was nearly in tears that she had finished a full week. I can see people on their Facebook pages constantly in hospital and really really sick. The last year has torn the CF community to pieces. It has emotionally wrecked us – being put between the Government and a US pharmaceutical company as a bargaining chip.”
She said that a meeting was due to take place this Wednesday between the HSE and Vertex. “We don’t know what to believe anymore because we’ve been told so many different stories. If anything good comes out of the last year apart from the actual drug being funded, it will be that the Government make sure that this never happens again. The health system needs a massive overhaul,” she concluded.
