Thursday August 24 2017 10:35 AM
How do you make your decisions? We all know how being better informed means better decision-making but we don't always get the information we need. This week from the MS & Me archive series Joan Jordan talks about the importance of being well informed about MS drug treatments and medications.
It might sound crazy what I’m about to say but I’m going to say it out loud anyway because it’s something I feel really strongly about. “Why can’t I see what MS Medications are available to me and compare them according to what I want from a drug?” There you go. Better out than in! All over the land- people are telling me this can’t happen but I say “Why not?”
This is what I want: When I go to the supermarket to buy a loaf of bread, I can see what is available to me on the shelf. If I want to, I can compare Brennans with Pat the Baker by looking at the amount of calories, fat, saturates, sugar and salt per portion. The traffic light system means that I know that green is good for me, red is bad and orange is somewhere in the middle. I can also see the price of each pan and compare per unit. Based on this information, I can make an informed decision on which bread to buy on a particular day.
Now, the things I look for in a medication are:
- Efficacy- for my type of MS, will I have less relapses if I take it?
- Safety- does it come from a reputable source?
- Quality- do I trust it?
- Benefit-risk- will it do me more good than harm?
Why can’t I compare these requirements in a simple way when I am considering which MS drug to take? I’m sure that neurologists are sick to the back teeth of being told by patients that they have read about a wonder drug on the internet when the drug is not suitable for prescription in their case. An equal frustration for patients is when a new, suitable drug is not yet available to them as the approval process has not yet been completed (or may never be). The BBC Panorama programme “Can You Stop My Multiple Sclerosis?” on Stem Cell transplants in the U.K springs to mind here.
I know that everyone has personal preferences when it comes to choosing a medication. For me- side effects are really important as I have kids and want to be as well as I can for their shenanigans. Cost doesn’t come into it so much in Ireland because of the Long Term Illness Scheme but I can see how it would be a major issue if I had to pay for my medication myself. I am eternally grateful to the Irish Government for this legislation! In her blog on Medication and MS my friend Niamh Mc Carron suggested a second consultation and I think that would be a really good start to help me make a more informed decision.
Sin é! Short blog but it’s something I wanted to say.
- Do you find you get confused when comparing MS therapies?
- Do you wonder why you did or didn’t get offered a particular drug?
- Are you waiting for a suitable one to be approved?
- What would you LIKE to see to help you come to your best choice?
I would love to hear from you! Thanks for listening.