Can't afford meds... no flare, but progressing.

[jensequitur]

I'm not sure if this is a question or just a grump session...

I haven't been able to afford my medication since the end of August.  It's only $75, but it's $75 I don't have - on top of all the other bills, I just can't afford it.  So I've been concerned about disease progression.  I haven't had a bad flare, but I seem to be progressing.  Hard to say whether I'm progressing faster on Copaxone than off it!  My legs are getting worse, my hearing is hit-or-miss, I'm getting double vision constantly, and my face is cold all the time.

So I guess this is a question - should I be worried about disease progression?  My face started with the cold thing in August, when I started my new pack of Copaxone, and it hasn't let up.

[LoveMyBostons]

I'm totally at their mercy though. My company doesn't offer health insurance and all of the BCBS plans have the same prescription coverage. So I'm shelling out $225/mo for it which is not easy to come up with. I suppose I should thankful for it though now that I've seen the statements of benefit for my MRI and spinal tap. Those are insanely expensive. Hopefully I will qualify for the NORD program though.

[jensequitur]

I may try again with the needs-based application.  When I tried a couple of years ago, I was in the gray area where I couldn't afford the medication, but I made too much to qualify for financial aid.  

LoveMyBostons, I have heard so many horror stories about BCBS that I'm not surprised to hear of your problems with medication.  As far as I can tell, you might as well not have insurance as have coverage from BCBS.

[goofysmom1]

I am sorry to hear this - have you checked into the National MS society?  I think they have some resources for financial help.

Hugs to you,
Chrisy

[HVAC]

Is it the Copaxone you cannot afford? I did the needs based application  with Teva and was accepted now I only pay ten dollars every three months. I faxed my application in.

If you need assistance do it well in advance. Teva does not reimburse for previously filled prescriptions.

My husband and I got sick when we found out the eeg I had to have is costing us $700 out of pocket. I told the Neurologist I could not afford the test, which was negative. We live pay check to pay check.

Now I am cutting all my doses of medicines except Copaxone. None of them are  for MS. I am not going to the doctor when I need to. Heck I am not even calling them when things go wrong like my saliva gland thing. If I ever have an MS attack GOD Help me.

I get yearly exam with my plan and I only have to see the MS Specialist twice a year and he just watches me walk, etc.

This is why I am out there at every health care reform rally in my area. I saw Wendell Potter speak and he says we have " Wall Street Run Health Care".

Alex

[LoveMyBostons]

I hear you. I found out yesterday that my individual BCBS plan won't cover Copaxone. My yearly maximum prescription benefit is $2500 and this will cost "somewhere between $1700 and $2200 per month." Apparently they do not consider it a medical necessity -- like I would choose to inject myself daily just for fun! So I have to wait now and find out how to apply for NORD assistance. I'm not comfortable signing up for some online program for fear it'll be a scam. It's so frustrating because I just want to start the meds and move on with my life, you know?

[Bliarg]

That really *****.  I feel angry and upset for you.  At these times, who DOES have $75 to 'spare'?  

You need to find a way to get your medicine.  I don't know in America where you would go for that help.  I'm in Australia, and there have been times when I've had to go cap-in-hand-abegging for help getting meds.  Not nice to do, but needs must as the devil drives.  Here in Oz, the Salvation Army, St Vincent de Paul and other emergency relief organisations will buy medication for people with low income.  There must be somewhere you can get help - start by asking emergency relief orgs and they might be able to put you intouch with people who can help even if they can't buy your meds for you themselves.

You can't leave your MS untreated.  It's terrible that you've been in that position for so long.  Good luck with sorting that out.  Best wishes

[Lulu54]

on or off my copaxone, I always worry about disease progression.  I think that is just normal.

Is there any way you can apply for some of the financial assistance programs to get you back on a dmd?  Hearing everyone's woes with the cost of the drugs and having to make these tough choices makes me very sad. We should be treating our people in this country so much better.

Lets hope that your relapse here is over soon and that you return to your *normal* state.

wish I had $$$$ - I would buy everyone a round or two of DMD's.  

my best,
Lulu