Wednesday May 28 2014 10:00 AM
When I was first diagnosed with MS, I was given information on a number of drugs. At the time I felt that being diagnosed in my early twenties would have to work to my advantage as I would get on treatment faster and have it working in my system for a long time. As my MS was extremely active in the beginning, I felt the faster I could get on treatment the better. I looked through pages of booklets on treatments and read though clinical trials that were offered to me. One looked very appealing, but I felt that at that time I needed to be on something solid that had been tried and tested. After much research and reading, I decided to try Tysabri and went to my MS nurse with this decision. It seemed to me to be the gold star drug available for MS.
There was an issue with this! My postal address was outside the hospitals catchment area and so there was an issue around funding. From what I remember, because I lived outside the hospital's catchment area I was not able to receive this treatment under their funding, and as my local hospital doesn't have a neurologist they could not budget the cost from their funding either. There was no possibility I could pay for the treatment myself as it costs about €1,636.85 every four weeks. I couldn't believe it, after making this huge decision there was this wall up, barring me access to the treatment I had chosen. I considered renting in the catchment area of the hospital, so that I would meet the criteria, but this would be very expensive. I was a student who was already renting while at college in the south of the country so I couldn't afford to rent somewhere else purely for the postal address. At the time I had only months to go until finishing college, so I ended up settling for an interferon. I had the MS diagnosis and I wanted Tysabri, but I had been working towards a degree for four years and I had to put that first at the time. I settled on interferon and knew that in the future I would like to switch to Tysabri if possible. In the end this treatment was not effective for me, so after a long chat with my neurologist, I did start on Tysabri with no further complications.
The issue of the postal address wasn't important then. Even now I felt that I should have had this treatment earlier. I should have fought harder in the beginning and not settled for the interferon. I still think to myself that awarding treatment on grounds of postal address is surely wrong? Surely there is some legal issues surrounding that, but at the time I was too tired to fight. I felt like I needed to be on something and waiting to see if I was going to be allowed Tysabri just made me feel so defeated and I was only early into my diagnosis. It was the first major hurdle I had to overcome and I am delighted to be the other side of it.
According to stats that I was given during the conference in Barcelona 76% of the countries which took part in the Atlas of MS have their treatments either partially or fully funded by their governments. On the MS Barometer, Ireland scored 42 out of a possible 70 in the area of access to treatments and therapies, coming in 12th on the list. I can see why! If certain drugs are not covered by community drug schemes then it is the decision of the hospital to allow patients access to the drug.
But this just seems so wrong, how can you deny access to a treatment based on a patient's postal address? Is access to treatment not a basic human right? In the end I was granted access to the treatment, and I am still happily hooking up to my IV Tysabri every 4 weeks!