« Back

Access to Treatments

Fitted

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!

Did you have a similar experience?? Please share...

Author: Aoife Kirwan

Tags: access, worldmsday, treatments, ms

Comments

Declan

Wednesday May 28 2014 17:38

Discrimination because of postal address in any aspect of life but especially in medical treatments.

JILLIAN KEOGH

Friday May 30 2014 17:18

Oh goodness, this is absolutely disgusting, i'm almost as disgusted by this as i was at the news of Fampyra and people having to pay for it themselves. It's disgraceful, i think we need to protest more about paying for medication like this. i am actually considering moving to somewhere in the UK if it will mean there is more access to treatment

Willeke

Friday May 30 2014 18:23

That is indeed shocking Aoife! I never knew that it depends on your postal address, something which not only sounds ridiculous but goes against human logic. I hope you got your degree in the the end!

Fair play for standing up for your rights though, and demanding something else. People just diagnosed have their minds full of fear and not knowing what to expect medication-wise. Thank god a lot more info is online now about different treatments, but next time I will definitely stand up for my own right on medication. I was on Rebif for 18 months and on Copaxone since 2007. It was only at my last checkup that a new neurologist said that perhaps I should go on different medication... "hallelujah," I thought, but then he said "hhmm, perhaps just stay on Copaxone for now..." Argh...

patricia mccarthy

Tuesday June 10 2014 13:05

Well done Aoife for getting what you want in the end. How disguising you had to go through all of that. I am seen my Neurologist tomorrow and I am praying that he can change my treatment, as I have been on Avonex for ten years and it not working anymore and I am in the middle of a bad relapse. So here's hoping I will have good news.

Sandra Mullany

Thursday December 18 2014 22:04

My husband and I are considering a move to Ireland in the near future, and I have been on Tysabri here in the states since 2009. The infusions are working great for me, and I'm curious about access to the drug in Ireland.

MS Ireland

Friday December 19 2014 08:13

To Sandra,

Our MS Information Line provides professional and confidential support to everyone living with Multiple Sclerosis.

Please call 1850 233 233 (Mon-Fri from 10am -2pm).

Hazel Robson

Monday February 02 2015 21:15

Ah this does not sound good. I am currently living in Jersey in the Channel Islands and was diagnosed in 2012 where my MS nurse got me straight onto Tysabri. It's been amazing for me and I never want to change, unless a miracle comes on the market. I have lately been having thoughts of moving back to Ireland after living here for almost 10 years. after reading the above it's made me very worried that I won't be eligible for the Tysabri treatment. Guess I will have to make sure my post code is sufficient for hospital funding.. what a load of Cr*p. Can't even move home!

Add a comment

Your email address will not be published and will only be used by MS Ireland to contact you should there be an issue with your comment.

Please read our policy on making comments. Basically, respect other people’s view, use appropriate language and be nice! Comments are published between 9am and 5pm, Monday to Friday.

We ask this question to ensure that you are a real person, and not a computer adding information automatically.

By commenting, you are adhering to our Terms of use / Privacy

Latest News

More news

What's hot

Mm_what_hot

Women's Mini Marathon

Join our MS Squad for the Vhi Women's Mini Marathon on June 2nd and help us raise essential funds for our support services across Ireland. Sign up early to make sure you’re in!

Find out more

Events Calendar

» Our next Event

22 April 2019: Physiotherapy Classes for people living with MS in Galway. There are three classes and people are assigned accordi...

View all events

eNEWS SIGNUP

If you'd like to receive e-news updates from The Society please enter your email address below. If you want to know more about how we manage personal data then please see our privacy policy.

My local MSI

Map of MS Ireland's service areas South Mid West West Midlands South East North East North West North Dublin City and Fingal South West Dublin and Kildare South East Dublin and Wicklow