Hi I'm 42 live in Arkansas and trying to find assistance to help with Copaxone. I have Medicare so I'm not sure why there is a problem. I am a Registered Nurse disabled from an inflammatory muscle disease called Dermatomyositis or DM for short, MS, Hashimoto, and Fibromyalgia I take Imuran for the DM so I'm a little concerned how the two immunosuppressant will work against my body I would love to talk to anyone especially those that have taken Copaxone. I have taken Imuran for 5 years for the My is it is but I think that caused the MS to flare. I first started having symptoms related to MS around 2003 and the DM when I was 16 but they are so close with how they make you feel its hard to say if they haven't been overlapping since I was 16. I was dx'd by muscle biopsy and elevated Aldolase levels and MRI and spinal tap for MS I feel comfortable with a dual dx bc they each have their on unique but yet similar symptoms.
Newly dx'd. : Hi I'm 42 live in Arkansas... - My MSAA Community
Newly dx'd.
There is a law that prevents drug companies from giving financial support to Medicare patients. Try looking at PAN. There are other organizations that provide grants for meds. You can also check with MS society.
Are you sure about that? Seems to me that drug companies will help you out if you are qualified even if on medicare. Maybe I'm wrong about that. I have never applied but I never saw or read anything that says being on medicare was a contraindication to getting help especially if you won't take the medication b/c you cannot afford to.
Hello, Itisara. Please click on the link below to go to and sign a petition which will allow those of us on Medicare Part D to get help from the drug manufacturers! Thanks.
change.org/p/united-states-...
I did sign the petition. I read somewhere about the possibility that doctors will now have to report MS patients so a better number of how many people in this country really have MS. I don't know if that is a reality yet but it seems like there are probably more than what is usually reported and may not be such a "rare" disease as some think. I have an advantage plan so my pharmaceutical company is part of that plan, so regardless from what I read here medicare costs are not negotiable. However I do know that the pharmcies make their own deals for what they charge even under medicare. When the new Copaxone regime 3x/week was released, Teva said it was released at a lower price to encourage sales. My insurance company at the time said they make their own deals which was quite a bit higher than the price Teva mentioned. That was one of their excuses at first for denying me the medication, however as I have said they soon rethought that through. I see that price two years later is still what they said they negotiated for and is pretty high. I pay about $280 something a month after February. The first two months I pay maybe over $4000 something. Now I am suddently on a three month schedule so my first payment may be even higher until I reach something like $4600. I don't qualify for a help I am pretty sure so I don't even bother looking into it.
Hi, @itasara, and thanks for supporting the petition. Yes, you are correct about Medicare contracting for pricing for drugs, but it's like anything else the government gets involved with; remember the Pentagon paying thousands of dollars for hammers you could buy at Walmart for a few dollars? That's what happens when you put the government in charge of healthcare. If the Advantage plan works for you, that's great. However, none of my doctors are ever on the networks. I already had a good (not great, but at least all my healthcare providers took it) HIPAA conversion healthcare policy when the Affordable Health Care Act was enacted. I had planned to use that policy as my Medigap policy, as it was good enough and covered all of MS meds for a $50 co-pay. But when the ACA was enacted, I lost that policy and had to get one from the exchange; worse coverage for a lot more money and none of my MS drugs were covered so I qualified for help from the drug companies because it was commercial insurance. But you can't use an ACA policy as Medigap, and when I became Medicare-eligible I lost that and had to go to Part D. I, too, think that the 400,000 number of MS patients in the US is low; I talked to someone at the National MS Society and she thinks it's at least double that. The problem is that so many countries that buy these medications have socialized medicine, one of the only places left where the drug companies can make a profit (and should, because we are a capitalist society and the do run a business) so US patients basically support all of the research and development, which will come to an abrupt halt if medicine here is ever socialized. It would be inappropriate, not to mention probably unconstitutional, to put a ceiling on drug company profits, but I am at least glad to see that they do have these programs whereby they assist patients with the costs. I am just angry about the fact that the Congress has made a whole segment of MS patients, especially those of us who are disabled and have no choice but to be on Medicare, ineligible for those programs. There's really no reason for it; direct financial assistance to patients isn't going to result in a prescriber getting a "kickback," and therefore the prescriber isn't more likely to prescribe one drug over the other. And it doesn't tap into taxpayer dollars, just gives more access to patients to manufacturer-funded programs. So I just think the whole thing is crazy.
Thanks for your reply. It is all pretty sad when I think about it. Essentially medicare is a socialist enterprise. It isn't that I mind contributing to those who don't have the money for these expensive drugs, but that is what I think am contributing to by paying what it cost me in copay (without the benefit of using it as a tax deduction. That and all the people involved in the drug delivery system.) At the same time, this medication costs us a lot considering my husband is part time and nearing retirement and we are still supporting some of our adult children. The government needs to get out of or cut back on the health care industry. I don't know what the answer is but competition would probably be a better idea. I do think the pharmaceutical companies make more than they should and I doubt it all goes to research. They get away with it because they can! When I switched to Copaxone 40 from 20, My deliveries were smaller, the amount of medication I received was/is less per week and yet the deals made were a lot more money! I guess I don't get it. And I believe those taking the pills which probably are less to manufacture pay as much as the other MS medications. When I first started on Copaxone there was no such thing as a "specialty pharmacy." Then all of a sudden I had to have a "special" pharmacy to get my medication and the price was higher I am pretty sure. Of course there are more middle people to pay with this system. I wonder if showing there are more MS patients if MS would stop being a "rare" condition. By making all the MS drugs about the same, it does cut out the element of competition. But then I still think some should cost less than other and it doesn't mean I would switch since not all medications work on all patients.
laurarogersclark , Those on Medicare or Medicaid are prohibited by a sentence in law disallowing kickbacks from drug companies that has been interpreted to mean that persons with government supplied insurance are ineligible. Foundations like the Patient Access Network (PAN) have helped provide copay assistance but I personally have found that to be very inconsistent. For example if you applied and were able to get your meds covered for November and December, because the Medicare Plan year resets every January, your coverage would likely be lost and have to be applied for again and by that time available monies may not be there to cover. I've been on that roller coaster now for about three years since I let Medicare become my prime insurance.
Immuran is often given to people with MS as a boost to their disease modifying therapies (DMTs) (as are steroids, methotrexate and cytoxan) when the DMT alone may not be fully covering the inflammatory responses. Copaxone may well have been the choice of your neurologist because there are so many problems in the picture. It has less of a tendency to interact adversely with other medications than the other DMTs.
Hello, Cherie. Have you signed the petition on change.org which requests Congress to amend the anti-kickback provision of the SSA to allow those of us on Part D to get help from the drug companies? It will also help if you publicize it to all of your social media friends! Thanks.
change.org/p/united-states-...
Yes,
Thanks so much! The other problem with these charities like The Assistance Fund, et al is that some only support certain medications and as you said, they run out of funding so quickly! Every time one opens up there is such high demand they run out of funds in weeks! So every month is a new fight, and since stress is such a big factor in MS, it realy gets to be a drag. I just checked on a new Part D policy that covers Tecfidera as a Tier 5 drug, so my initial outlay would be $5400 (the insurer's discounted price) which would then put me right into catastrophic and then it would be $900 per month. That doesn't include the co-pays for all my other meds! Who can afford that?
Rebif was 2300/month for the first two months then 896 the third month then 750 every month thereafter. It's just too much!
Hi, I live in AR too. I will start praying for you, that you can find help with all the you have. It's always good to find another Arkansaser!!
Shared Solutions were a life saver for me. I had a zero copay for my copaxone. Just talk to them
I am on Copaxone and have Medicare. I get extra help from my state and also get help from Shared Solutions' program called ACS (Advanced Care Scripts). In the beginning of the year, I have a small copay ($10 - $12/month) before meeting my deductible and then the rest of the year I pay nothing for any of my prescriptions. The phone number to ACS is: (866) 681-7131 or (877) 985-6337
My daughter received her med when she was on it (right now she was told by her neuro she can come off it!) via her state. But then again she felt she could not make too much money or she would be off it and she most likely cannot make enough at the moment to even afford these meds on her own. So in a way it takes away incentive for younger people especially excell to the point of then making enough and getting private insurance. That is what government does.. it helps but at the same time it restricts!
Except shared solutions cannot provide med for people who are on Medicare or Medicaid nor can any of the drug company programs.
I agree Shared Solutions is awesome and should be able to guide you.
There number is (800) 887-8100
Hi there,
On some of my Meds all the doctor has to do is override that I need that Med. and usually it will get over ridden and Medicare will ok it.
Can't help you anymore sorry, you take care!
Lakiee
Hugssss!!!
Hi! And I thought just having MS wae bad enough. Wow! Well, I have been on copaxone about twelve years ago for about two years. I think it worked for a while, but the disease still progressed.
Hello Laura, my name is Angie, I am newly diagnosed MS on copaxone. I live in Lake Village, Arkansas.
I am not yet on Part D Medicare for my drugs, I have private Blue Cross until July. But I have been checking out Part D. Have you talked with Shared Solutions? From what I can figure out, Shared Solutions can help on private insurance deductibles & copay but when you go to Part D there are income issues that come into play.
For example, my deductibles were already met as were part of my copay when I started. So I am getting my copaxone for my insurance and $5 per month copay, because insurance allows shared solutions to offset cost (no income issues). However, I am told Medicare does not allow this so you are left with income questions to meet eligibility for copays is what I understand.
My Blue Cross report indicated copaxone $11,353.40 (month), blue cross discount $5,132.72, blue cross paid 3,592.00, leaving $1,539.82 that shared solutions helps pay, I pay $5.00.
But when I go on Part D, I'm looking at 20% of $5,132.00 (Medicare may have lower discounted rate but it will likely be in neighood). So by Part D, I go into their donut hole in first month. So for first 2-3 months, I will find my self paying significant $ before I get to 20%. And 20% is high not to mention donut hole.
That said, Shared Solutions can find help for this but it's income based, which I might not qualify for due to my husbands income (not mine, mine is only disability Medicare). Husbands taxable $ is not income but interest and from sell of company. So if they look at only my $, they can find a solution but if I have to include his $, I could be looking at huge $ .
Any charity set up to help you with the co-pay (since the rug manufacturer can't help you because you are on Part D) does look at total household income, so you'll likely be as screwed as I am. I had to pay $6500 this year toward my relapse medicine! I hate to be a nag about this, but please check out my petition on change.org so we on government-assisted health plans (as if we had a choice) can get access to the drug companies' financial assistance programs! Thanks. The link is on the above-posts....if the one below doesn't work!
change.org/p/united-states-...
Unfortunately medicare will look at HOUSEHOLD income only. If they looked at mine, I'd have no problem. Funny when he worked full time his policy (with BC) covered us both; I don't think I paid anything for my copaxone. Now with medicare we each have to have our own policy and yet my medication costs are based on both of us, and I hardly make any money at all in a small very part time position I have as a singer. My advantage plan is with BCBS and so far it has worked out. We both subscribe separately to it. All my docs are in the plan as are my husbands and so far any meds are covered (and I really have three other Rx meds, two of them being topical for dermitological reasons.)
I too am an Arkansan, northwest corner. I am currently mid-process of diagnosis. I just finished 3 days IV solumedrol,currently on a prolonged prednisone taper.
There's an organization that does grants for people with disabilities that might be able to help you with your copay. S.P.I.N. SPECIAL PEOPLE IN NEED.
Depending on your income, you might qualify for Medicaid to cover your copay. Local DHS office is probably the best place to start looking into options.
Good luck. Prayers!
I would suggest you talk to shared solutions. I just talked to them yesterday. It I'd correct that they can not give directly, but they find grants to cover the co pays. So, they use a company to look for these grants for those on Medicare.
Hi, and welcome to this great group of supporters. I'm sorry it's due to your recent MS diagnosis, though. I'm afraid I can't help you with your question. I've never taken copaxone. However, I have a question for you. I also have MS, Hashimoto's, and more recently, was diagnosed with autoimmune liver disease (autoimmune hepatitis). My neurologist and rheumatologist are recommending Imuran, hoping it will help with both the liver disease and MS. (I'm now SPMS.). Anyway, I am currently on Plaquenil (immunosuppressant for Lupus as they suspect Lupus to be the cause of the liver disease). That means that I also will be on two immunosuppressants when Imuran is added. You thought Imuran might have made your MS worse? Any bad side effects? Thanks. And I do hope someone is able to answer your question. Wishing you the best.
Hello, Laurarogersclark. If you are on Medicare Part D, then the manufacturer, Teva, cannot help you with the cost of the drug. I have found that many Part D plans do provide coverage for Copaxone, but the co-insurance or co-pay is ridiculous. Private insurance usually covers it for a nominal co-pay. If your Part D doesn't over it at all, Teva should be able to help. If you are concerned about your co-0ppay or co-insurance, you might try one of charities, but if you don't qualify, you are stuck. Please click on the link below to go to a petition to end this Medicare RX snake pit and help our segment of the population get help from the drug companies for our lifesaving medication!
I'm new here..Newly diagnosed with MS
If I had known then, how would I have lived my life differently?
Better days!
Newly Diagnosed
