Thursday, January 15, 2009 ladygraycloud, Community Member, asks

Q: What people with MS do when there is no insurance?

I get turned down for SSI, of I'm angry but dealing with, I call Shands (referred to by hospital neuro) to find out why they haven't called about an appt time only to be told they haven't called due to I haven't met my share of cost for medicaid (2000.00) doesn't anyone think if I had that kinda of money I would be asking for help!!!!!!!!

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Answers (3)
Merely Me, Health Guide
1/19/09 10:11am

Hi Ladygraycloud


May I ask...have you only applied to get SSI once?  It seems the norm to be turned down the first time.  Do appeal the decision.  My mother, who has a major mental disability, had to do this twice and this was after getting so many doctors to say that she needed it. 


Okay get your pen and paper ready because I have lots of information for you about financial assistance. 


First of all MS Health Central has a newly updated page (actually I had suggested this page be created since so many of our questions are about financial and insurance concerns) about money matters.  You can view this special Healthcare and Insurance page right here.


I am also going to give you the number and link to the National MS Society:


They have been very helpful to me and I am sure that someone there would be able to advise you.  In a recent newsletter they talk about having hired 600 financial advisors to help with giving advice on anything from employment issues, insurance, to getting financial aid for the MS meds.  Here is the link to the NMSS web site.  And here is their phone number:  1-800-344-4867


The National MS society also has a page dedicated to information about financial assistance from all the drug companies which you can find here.


And here is direct information about how to reach any of the drug companies.  They all seem to offer some form of financial assistance:


Drug NameManufacturerTelephone Number Avonex Biogen Idec 800-456-2255 Rebif Serono: MS Lifelines 877-447-3243 Betaseron Berlex Laboratories 800-788-1467 Copaxone Teva Neuroscience 800-887-8100 Novantrone Serono: MS Lifelines 877-447-3243


Need help with affording an MRI? 


There is assistance for paying for MRI's from the Multiple Sclerosis Association of America.


And if you need general telephone support or answers to questions there is

a new organization out there which gives peer to peer support by telephone 24/7 and they are called MS Friends.  Here is their link and here is their telephone number:  1-866-673-7436  You can call toll free.


I hope this information is of help to you.  MS is expensive.  It is bad enough to have this disease but then to get stuck with all the bills can be overwhelming.  Please let us know if there is anything else we can help you with.  And thank you for your question.


Gotta Laugh, Community Member
2/ 3/10 1:00pm

Hey Lady - I can relate to your frustration and anger at the system.  Being in the process for 4 months and going for my SSDI medical review next week I have learned how to seek out resources.  In addition to the excellent sources listed by merelyme I wanted to tell you to ask for help from your state rep and attorney general.  You can connect via their website and the community liaison will (repectfully) ask the SS office about your case.  


Other sources.

You can request financial aid from your town hall.  If you live in a major city it is the aid office (not welfare office) for dire situations.  I felt silly calling my town hall - but it worked. 

The electric co. has a form for refrig. medicine which your doctor can sign and send in so your electricity won't be turned off.

'Neighbor helping neighbor' in NH helps if you hit bottom with your utilities - your state may have a similar program.

I get rebiff free from mslifelines while my SSDI is pending and I don't have income.

The MS foundation can help with upto $300 - not much I know - but it adds up (plus they are a great souce for info)

I am in the process of switching locations for my MRI - it depends on price.  I've summited to a couple that have financial programs.

Free legal aid office can help you with finding a lawyer to appeal the decision - and I understand they take a % of the back payment after it is awarded.


I know you will find the resources out there - it just takes lots and lots of digging and listening.  Good Luck

azsnowriders, Community Member
10/ 6/10 1:19am

My wife was denied for ssi 3 times.  We appealed and lost over and over.  luckily one of her childhood friends had some advice for us and reffered us to "allsup".  this company acts as your attorney but for free if you do not get awarded.  If you win ( which we did) then they get paid %20 not to exceed $6000 of the back due amount.    My wife is now approved for medicare starting dec 2011 and we receive ssi income for my wife and the kids.  I hope this may give you another avenue to look into.  good luck. 

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By ladygraycloud, Community Member— Last Modified: 12/26/10, First Published: 01/15/09