Being *uninsurable* and not always qualifying for public assistance, the cost of medications is one of the factors that played into my decision to enter a clinical trial for Fingolimod. At least until it goes to market I will receive the drug for free, and get MS related health care for free.
I have a feeling that, once this trial ends, I am going to miss all this close scrutiny I have become accustomed to.
Before the clinical trial I was on and off Copaxone for the previous 8 years and often times got assistance from NORD (National Organization for Rare Disorders). If approved, you receive a discount on your medication and it is shipped to you in an overnight shipment of 3 months' worth at a time.
Two different times that I had NORD's help, I didn't even have to pay the shipping costs (which were $75/3 mos. supply). They are really great people and went out of their way to help.
Great post, Lisa!
Hey Pink, good to see you!
Thank you for pointing out the option of participating in a clinical trial. I was remiss in forgetting to add that one. And you've had such success in this trial for Fingolimod. Thanks for being our guinea pig. 
mwah
With Copaxone now, you must be referred to NORD through Shared Solutions. Then if you have no insurance or have exhausted prescription coverage, NORD helps with covering the cost at 25-100%. The first year I had help from NORD, the shipping was $100/3 months. Then they changed specialty pharmacies and now the shipping is $15/3 months. If you have insurance and need help with covering the co-pay, NORD refers patients to the Chronic Disease Fund rather than handling it in-house.
Here's my story with obtaining assistance with Copaxone - How Am I Going To Pay For This?
Thanks for stopping by and for your comment. I appreciate both. Hope you have a nice weekend.
Lisa
Hi,
Newly diagnosed with MS (Dec 2009).
Unemployed and my premiums will be "astronomical" on Nov 1st.....WAAAAY out of reach for an unemployed person....
Just found out from NORD that I have to be on Meds for them to pay my premium.
What are the requirements for them to continue paying the premium once started?
Trying to financially survive with this pre-existing condition
Thanks!
Xenergetica
It is difficult to manage all of the financial challenges living with MS...and being unemployed....put in front of us. Unfortunately, I did not participate in a program in which NORD paid insurance premiums. I received Copaxone through them and the requirements ended up being an income below 200% Federal Poverty Level with limited cash resources.
I wish that I had more concrete information for you. I'm sorry. But I do hope that you are able to get insurance coverage and access to the medical care you need.
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hi there - this is a great respurce for our readers. Thanks so very much for helping gather it for them.
All the best, sue
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