Comments on: Multiple Sclerosis: Sustaining Care, Seeking a Cure

By: Lauren

Lauren — Fri, 21 Jan 2011 13:11:07 +0000

I have had ms for 30 years. I live in Cape Town, South Africa. I had moved into secondary progressive multiple sclerosis before I could even try some of the tracks that are now available. I can no longer walk, have a suprapubic catheter and feel that I have MS everyday. Sometimes I feel annoyed that those people who have access to drugs to help them, just don’t use them. I cannot judge them as they go on their journey.

By: Multiple Sclerosis

Multiple Sclerosis — Sat, 15 Jan 2011 03:29:05 +0000

Thank you for sharing this information. Since MS is a condition that’s difficult to diagnose, most patients start their life long fight with this condition with very few information, which is always scary. Your initiative should be appreciated by all MS sufferers, their families and friends. God Bless!

By: Multiple Sclerosis

Multiple Sclerosis — Wed, 06 Oct 2010 17:28:06 +0000

Blogs like these prove to be a valuable source of information for MS sufferers all around the world.

As you are diagnosed with MS it helps to share you feelings and thoughts and experiences, and the way you cope with your MS with the world. You get to see how other people do it, and you help other people at the same time, which is a win win situation.

By: Multiple Sclerosis

Multiple Sclerosis — Fri, 10 Sep 2010 18:16:52 +0000

I applaud your initiative. So many people with MS have nowhere to turn, and can’t find enough information about their disease from their doctor. Information about MS should be free and people should be able to benefit from it instantly. Once again, congratulations!

By: Paul Wicks

Paul Wicks — Wed, 04 Aug 2010 20:39:22 +0000

Hi Laura,

Thanks for checking out the treatment database! You’re right, so far we’ve got about 1/3 of our MS members sharing data about their disease-modifying therapies. We know from other work that a larger proportion have taken at least one DMT in the past but of course not everyone in our system has entered all their treatments yet.

The idea behind this particular project was to look at barriers to adherence among people currently taking a DMT; many people with financial difficulties or problems with insurance aren’t currently on any DMT so we may not have heard from them as much in this survey. We did hear anecdotally, however, about some folks being “non-adherent” because their insurance coverage had changed or they couldn’t afford the co-pay, and we’ll be investigating that further in the future. In the meantime, we are collecting data in our treatment reports (such as this one about Copaxone) about patients’ out of pocket expenses for their treatments. In the future we’ll be collecting information about their insurance type so we can start cross-referencing this information more systematically.

Also, if you check out our forums you’ll see many discussions around the best way to apply for access programs put on by some of the manufacturers, as well as other routes to getting access to disease modifying therapies in MS.

Thanks for your input!

Paul Wicks

By: Laura Charron

Laura Charron — Wed, 04 Aug 2010 08:07:24 +0000

In checking out your treatment database, as you suggested, I found that only 36.4% of members were on the drug therapies.

In your questionnaire you mention side effects and coping strategies, but no mention of financial considerations. This is a very real issue for US citizens with MS.

thank you for a very informative website.