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Motor_Neurone_Disease_Ballynahinch_man_wants_wider_access_for_new_drug.txt
My time is jugar loteria primitivaprecious - new MND drug could give me more with my family5 days agoShareSaveKeiron TourishBBC News NIShareSaveBBCConaire Quinn wants as many people has possible to have access to a ground-breaking drug A County Down man hopes a new treatment for a rare form of Motor Neurone Disease (MND) can give him more quality time with his family.Conaire Quinn, 38, who has a nine-year-old daughter Autumn, said time is not on his side.Mr Quinn, from Ballynahinch, wants the ground-breaking drug, Tofersen, made freely available to as many people as possible. The Department of Health said Tofersen is not currently commissioned in the UK but it is being appraised by NICE (the National Institute for Health and Care Excellence). Conaire QuinnConaire Quinn, pictured here with his daughter AutumnHe received his first treatment through a lumbar puncture procedure at Altnagelvin Hospital in mid-August.He first noticed something was wrong "around Covid time when I felt my foot dropping". He said when he was walking he was stumbling slightly and after the pandemic he could not get upstairs and suffered with abdominal pains and cramps.The final straw that made Mr Quinn visit the doctor was when he was at a Manchester United match and had to be pulled up from the terrace."They said straight away that this was a neurological thing," he said."I came out thinking it was a sports injury but I ended up having a crutch and I've had it ever since."Mr Quinn said he had a family history of MND on his mother's side."It sounds silly but I was wanting the diagnosis because it was getting played down. It was making me feel like it wasn't what it was," he said.Dr Gavin McCluskey says it's an exciting time to see new treatments being opened up for peopleWhat is Tofersen?Tofersen has the ability to slow or halt symptoms for those with a rare form of MND, which is caused by a variation in the SOD1 gene. Altnagelvin Hospital consultant Gavin McCluskey said there are about 50 new cases of MND in Northern Ireland every year. Access to the drug will only apply to one person every one to two years."This is the first new treatment that's been available for MND for 30 years," he said."It's a new class of treatment that works to act on reducing the effect of the abnormal gene which then, hopefully, would reduce the damage that's done to nerves and slow down the rate of progression. "So it's a very exciting time with this new avenue of treatments being opened up."Dr McCluskey believes it "changes the narrative" in the story of MND, with new treatments which "can affect the disease progression and lead to a reduction in new symptoms".'Breakthrough' treatment Mr Quinn said he hopes it will prolong his independence.He said he's felt dramatic differences with regard to his fingers, hands, arm strength and leg strength. "This (new treatment) will help me have time with my family and my daughter because I'll want to go on holidays and go to the park whereas if it keeps progressing quickly it'll make me unable to do those things," he said.Mr Quinn said the new drug is a "breakthrough" not only for him but also possibly his family and others. "If I'm trailblazing it and getting the treatment, they'll know what is to come and how they can get the treatment and get access to it."Conaire QuinnConaire has had to use a crutch and mobility devices since his diagnosis 'You don't get time back'The MND Association is currently leading a UK-wide campaign to make Tofersen more readily available and to ensure there are enough specialist staff to administer it.During the summer, the charity unveiled a melting ice sculpture in Parliament Square, London, of a person with motor neurone disease to symbolise the condition. A petition with 21,000 signatures was given to MP Karin Smyth calling on the government to urgently provide the drug to those who need it.The MND Association said more than 30 patients are currently taking Tofersen through an early access programme, which is being offered free by its developer Biogen.However, the charity said about 20 patients cannot receive the drug because there is no local service to administer it.For Mr Quinn, it is all about access to the new treatment."Time is very precious. And over the last couple of years that's the most important message. You don't get time back."The Department of Health said while it was not yet clear when NICE will publish a decision, typically treatments recommended for routine use in England are also available in Northern Ireland and that the department will seek to "make the treatment available" if so. It added that when a request for treatment falls out of this arrangement, it will "consider requests from trusts to fund treatment on an individual patient basis".More on this storyMan walks more than 1,200 miles for MND awarenessHusband's death from MND inspires widow to publish bookMedicineMotor neurone diseaseNI HealthNorthern Ireland
