Behind the News: Aoife Kirwan, MS campaigner
Aoife Kirwan, who was diagnosed with multiple sclerosis when she was 23, had to fight to get the medication she needed
Patient: Aoife Kirwan with her son, Adam, at last year’s MS Readathon. Photograph: Naoise Culhane
When Aoife Kirwan was diagnosed with multiple sclerosis, four years ago, at the age of 23, she began to investigate treatments. She decided that Tysabri was her best option. MS has no cure, but medication can slow its progression, and Tysabri – briefly withdrawn from the US market a decade ago, because of patient safety concerns, but later restored – is one of the most effective treatments for MS, although it is not without side effects.
Kirwan’s doctors agreed that it was her best option, but then she learned that she lived in the wrong area to get the drug. “I needed treatment quickly, so that I could finish off my college degree. So I settled on a different treatment – which wasn’t as effective.”
Kirwan is one of a number of people with MS who are highlighting the anomalies in treatment that can result from nothing more than where they live. They are backed up by Multiple Sclerosis Ireland, which is encouraging its members to stand up for their right to appropriate medical treatment.
The society has spoken of a “postcode lottery effect”: some hospitals apply spending caps more vigorously than others, refusing access to treatments to contain costs. MS drugs can cost the State €5,000 per patient per year.
After 12 months on her second choice of drug, Kirwan saw a specialist in New York, who also said that Tysabri (whose generic name is natalizumab) was her best option. “I came back to Ireland and made a private appointment with my hospital consultant, to avoid having to wait a few months in the public health system. I said that I wanted Tysabri because it was the most effective treatment for me. After that I got the drug,” Kirwan says.
As it turned out, Kirwan’s form of MS reacts against Tysabri in the long term, and she came off the medicine after about 18 months. “I would still say that Tysabri is the best drug available for MS. Now I am on another new treatment which I researched. It has taken me some time to adjust to the side effects, but these are minimal compared to the long-term benefits.”
Kirwan shares her experience of multiple sclerosis in MS & and Me, a blog on the MS Ireland website. “I always wanted to make positive changes for myself and not pass on the responsibility to a professional. I see patient empowerment as being hugely important. Nobody will care as much as you do about your condition.”
She says the blog is “a place people with MS can go to relate to others. Multiple sclerosis can be a very isolating condition. When you see someone has experienced something you have experienced yourself, you don’t feel as alone.”
MS Ireland’s new Access to Medicines hHandbook offers its 8,000 members (and anybody else who’d like to download a copy) a nine-step plan on how to “get loud” when campaigning for their rights. It says that when patients are refused access to drugs recommended by their neurologist they should complain first to hospital management and then to the HSE or the Department of Health.