Need Help Paying for Your MS Drug?

Need Help Paying for Your MS Drug?

MS_Wire_Ed_Tobias
With last month’s approval of the multiple sclerosis drug Ocrevus, I’ve again heard the plea “But how can I afford it?” Ocrevus carries a price tag of about $65,000 a year. That’s not high compared to some other MS drugs, but it still can mean a higher co-pay than some patients with insurance can afford. And it can appear to be totally unaffordable for those without coverage — unless you know how to get help paying for those drug costs.

About six months ago I wrote about the programs that various drug companies and foundations have to assist MS patients in paying for their drug. With lots of folks looking for that help, I thought it would be a good idea to review some of what’s out there.

Payment help from MS drug manufacturers

In the U.S., many drug companies have programs to provide their high-cost MS drugs to patients at a deep discount, or in some cases for free. For Ocrevus, drug manufacturer Genentech has a number of options. For other MS drugs, the National Multiple Sclerosis Society has an excellent, drug-by-drug list of  programs on its website. I recommend it as a first stop in your search for help.

But there are rules regulating this practice in the U.S. and they don’t make a lot of sense from a patient’s viewpoint. Here’s how they work. If you have prescription drug insurance, either through your employer or as an individual, a drug company is allowed to reduce the amount of your co-pay for their drug. When I was still working full-time, I was prescribed the drug Ampyra. At that time, the average wholesale price for a 90-day supply of Ampyra was about $1,000 a month. My insurance covered about 50% of that, so I was left with an unaffordable co-pay of about $500 a month for a drug that was really helping me walk. Fortunately, I was able to take advantage of Acorda’s patient assistance program to limit my co-pay to no more than $40 a month, and I was able to continue on that drug.

Then I retired and moved from my employer’s drug insurance plan to Medicare Part D (the section of Medicare that pays for prescription drugs). But, under the Medicare rules, drug companies aren’t allowed to pay-down the co-pay, as they do with private insurance. They must either provide the drug free of charge to a patient, or they can’t provide any assistance at all. And, to receive that no-cost benefit, the patient’s income must be under a certain limit. My retirement income was too high to get the drug for free, but I still couldn’t afford the big jump from a $40 co-pay to $500 a month, so I had to go off the drug.

But, there’s another way …

Help from foundations

A foundation is the good place to turn when you have private insurance or Medicare, and you’re still stuck with a high co-pay, and the drug company is unable to help. It takes patience and good timing to obtain help from these non-profits, but it can be worth the effort. If you qualify for the help (there’s still an income ceiling but it’s usually fairly high), a foundation will approve a monetary grant for you. The grant will cover your co-pays and be paid directly to the pharmacy that’s providing your drugs for a specific amount of time, usually a year.

At one time I was receiving a grant of $6,000 a year from a foundation, which covered all of my co-pays for Aubagio for that year; it was a significant out-of-pocket savings. Some of these foundations limit their grants to people on Medicare, while others also include patients with private insurance. A list of some foundations that are paying for MS drugs can be found at the bottom of the National MS Society webpage that I mentioned earlier.

You’ll need patience and good timing to travel this route. The foundations help patients with many different diseases and they can run out of money quickly for a specific disease until new donations are received. The problem is the foundations don’t announce when their coffers are replenished. So, you’ll need to check their websites, or call them, as frequently as possible to see if they have new money, and then apply quickly when they do.

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(Read more of the MS Wire on my personal blog: www.themswire.com)

Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to multiple sclerosis.

36 comments

  1. Larry Williams says:

    Great, unless on Medicare, then no drug company assistance, and if you have invested and saved well, you have sufficient funds for retirement, but not enough for $60K per year drugs with no Medicare assistance, a real shame, same on the government and shame on the drug industry!

    • Ed Tobias says:

      Hi Larry,

      Unlike oral meds, which fall under Medicare Part D, Ocrevus is administered as an infusion. So, it falls under Medicare B. Part B should pick up 80-percent of all costs. If you have secondary (Medigap) insurance, it should pick up some, or all, of the remaining 20-percent, depending on the plan you have chosen.

      Though drug companies are prohibited from providing assistance to people on Medicare there are several assistance funds that have money to help pay for MS drugs. I provided a link to those, which are listed on the National MS Society’s web site, in my column.

      Ed

      • Carolyn A Jorgensen says:

        how can I get coverage for Ocrevus. I currently have private health ins. but I’m being forced into Medicare as I have been on disability for 24 months now. My next infusion is June of 2019 by then I will have no coverage. Any suggestions.

        • Ed Tobias says:

          Carolyn,

          I don’t have experience with Ocrevus. I can tell you, however, that Medicare Part B covers 80 percent of my Lemtrada infusions. The other 20 percent is covered by secondary insurance that I’ve purchased. As I wrote, federal law prohibits the drug companies from covering out-of-pocket costs for people on Medicare or Medicade.

          I also wrote about some private foundations that will help cover those costs and I included some contact information about them. I’d also suggest that you contact the Ocrevus support number and speak with them about this: 844-OCREVUS (627-3887).

          I hope you find the help that you need.

          Ed

    • Marlene says:

      So true.I have been o. Aubagio for quite a few years and now on Medicare and now can’t get help.My co- payment is almost $800. Per month…so no medicine.unfair..worked all my life

      • Ed Tobias says:

        Hi Marlene,

        Mylan pharmaceuticals has just released a generic version of Ampyra in the U.S. I’m trying to determine its cost. Since I’m also in that Medicare bind so I’m hoping that the co-pay will be affordable, allowing me to return to using that med.

        Ed

  2. Marina says:

    I have PPMS & am doing everything that can be done to get ready for the Ocrevus infusion. I have Medicare as my primary insurance with AARP United Health Care as my secondary. I am getting the blood tests & MRI that is needed next week. How can I find out when Medicare will be in loop on this new medication, do you know? I went from your page onto reading more on your other pages & got the info for the contact with the drug company for financial aid questions. My PPMS is going at a pretty fast rate now & want to get everything I can.
    Marina

    • Ed Tobias says:

      Hi Marina,

      I also have Medicare and one of the AARP/UHC secondary plans. Though I’m not using Ocrevus I am getting Lemtrada treatments. My neurologist’s office, which also has an infusion center, handled all of the insurance-related work and I was okayed in just a few days.

      If your neurologist can’t answer your question I think the Ocrevus people are your best bet. Also, you might try posting your question to current Ocrevus patients on an unofficial Facebook group: https://www.facebook.com/groups/653313891487070/

      Good luck!

      Ed

  3. Ernie says:

    Unfortunately, I get no assistance. As a retired military member on tricare, no support agencies, including the maker of Ocrevus, and medicare will help. Why?! Because I use tricare. And tricare doesn’t cover that drug! What kind of sick game is this?!

    • Ed Tobias says:

      That’s very unfortunate, Ernie.

      Is Medicare your primary insurance with Tricare secondary, or is it the other way around? And, is Medicare D covering your drugs or are you signed up with Medicare C (Medicare Advantage) for hospital, doctors and drugs all in the same plan? I know that under Medicare D you can choose from a number of drug plans, some cover some drugs and others cover others. You can find use this link to find one, if there is one, that will cover Ocrevus: https://www.medicare.gov/find-a-plan/questions/home.aspx

      I’m sorry if I’m repeating something you already know but I want to make sure that you have this info.

      Ed

    • Phil Church says:

      Ernie I’m a 100% disabled veteran with multiple sclerosis (22yrs) and with being straight VA no Tricare I receive three boxes of Avonex every three months no charge so you might want to look into dropping Tricare and getting full va coverage .

  4. J Hartman says:

    My wife has been suffering MS for 30 years now. With excellent insurance, it still has been a major struggle to get insurance companies to pay. I have actually had to commence suit against the insurance companies on many occassions, just to compel them to pay for the meds as required under their plans. So I have absolutely no confidence that any medicare/medigap insurance will ever provide for my wife. So we basically have decided I will have to work until I die! Fortunately, I am employable but I am also getting pretty tired!

    • Ann says:

      there is a patient assistance program for them. i just stopped taking it because it was not working for me any more. Sorry I deleted their number when I had to switch medicines. Now I take nothing because I can not afford ocreavus. I was approved for $20,000.00 to go towards the price of the medicne which is $65,000.00 but that does not include the price of everything else that goes along with getting an iv infusion. I can not take the stress of this anymore. I believe I am just going to let nature takes it’s course at this point.I live in constant panic over this crap and I refuse to do it any longer.

      • Jacque says:

        Ann, I am sick & tired of this too..The stress of worinost of you life & isioowho so work get free everything! I stopped taking anything bc I couldn’t afford it either…I went back to Copaxone..it at least keeps me ‘stable ‘ a way on people w/ms understand. Here’s the plan..have Neuro write a “letter of medical necessity” and either an “Exception “ to either the “Tiering Exception” or a “Formulary Exception” or both. Your insurance (Part D or Advantage) should know which isn’t covering it.Ok Ann? If you don’t want to do that..take something for Inflammation.Ive found Fresh ginger cut tiny & turmeric work well. You can get turmeric in capsules ( ones w/black pepper work best) or loose. Please do something dear( sorry it comes natural for me say ‘dear’ bc I’m crying as I say this bc I’ve been agonizing of the same thing for months) I will be Ok,ok?!? Deep breaths. And know you’re not a lot out here!!!

  5. Kevin Porreco says:

    I am on the drug Ampyra and soon when I run out, I will stop the drug even though it helps me. There is no way I can afford it anymore. I was on the Acorda therapeutics patient assistance program and received the drug for free for many years. In December they sent a letter saying the drug would go generic. It didn’t because they’re in a lawsuit over patent protection according to their CEO and founder Dr. Ron Cohen. He personally called me and explain the situation. Unfortunately, that didn’t help me at all. I have Medicare part D and AARP/ UHC my co pay is $900 a month. I cannot believe this happens in a country like the USA. Thank you big Pharma In their politically corrupt politicians. I can be reached at [email protected]. Cheers, Kevin

    • Ed Tobias says:

      Hi Kevin,

      I feel your pain. Something similar happened to me with Ampyra after I went on Medicare Part D. I was able to find help, however, from one of the various foundations that help pay for medications. My help came from The Assistance Fund: https://tafcares.org/. I hope they can also help you.

      Ed

  6. Nancy Kuzma says:

    My daughter-in-law was diagnosed a few months ago with progressive MS. She needs Ocrevus. Because my son makes a little over 150K a year she does not qualify for the Genentech copay assistance. They have two small children and cannot afford a 30K out of pocket cost for this drug every six months. I have looked at the list of medical assistance foundations and none of them look feasible either. Does anyone have any suggestions? These costs are totally insane. Are their only choices to ruin themselves financially or use a less effective treatment?

    • Ed Tobias says:

      Hi Nancy,

      I’m sorry to hear about your daughter-in-law’s situation.

      Several years ago I had success with The Assistance Fund, which helped me with the cost of my Aubagio. Their funding for MS starts and stops, so you really have to keep calling them to see if funds are available. Also, the Genentech patient assistance people may be able to suggest other funds that their patients have had success with.

      Why don’t you also post your question on our new, Forums page. (Use the Paying for Your Treatment) subject and see if anyone there has suggestions. https://multiplesclerosisnewstoday.com/forums/

      There’s also an Ocrevus Facebook group where you’ll find a lot of patients who might be able to help.

      Good luck,

      Ed

  7. Tom says:

    Just found out.. I was getting assistance from a fund for Betaseron, for many many years, I’m on medicare. But they cut their assistance to 1/2 year at a time (now it is unpredictable), so I applied to the manufacturer directly and got 3 months worth for free. That’s great, but now when the medicare donut comes, rather than jumping thru it quickly with assistance from the foundation, and then paying 5% for my regular meds (the ones that don’t cost $6K a month), I’ll have to pay larger amounts for regular medicines because I have not gone thru the donut hole and arrived at a 5% copay. Still OK, but not the deal I once had.
    My general advice to some of you (I’ve been doing this since 1996) is that while some of the drugs have side effects that are uncomfortable, they are not as uncomfortable as being bed ridden. So work diligently to find help or another drug. It’s not good enough to say, like some have, that it is too tough and they already know they are going to find no help. You have MS also, life HAS changed, you need to suck it up, and if the medicine is rough, but it works, go with it. What choice is there? This is not a fever that goes away with Advill.
    Finally, I am trying to switch to Ocrevus myself, and it does look like there will be many hoops. Don’t know if I want to pay thousands to have the convenience of no “every-other day” injections. Family income is $50K. How much of that do I want to give up?
    Bla Bla Bla… Good Luck Everyone.

    • Ed Tobias says:

      Hi Tom,

      Thanks for all of your information. I agree with you that those of us with MS have a responsibility, to ourselves and our families, to seek out the best treatment that we can afford.

      I don’t know whether you’re on regular Medicare or Medicare Advantage. If you’re on regular Medicare Betaseron would have been paid for under Part D, because it’s self-administered. Ocrevus, on the other hand, is an infusion. Since its administered in an infusion center or a hospital it’s paid for under Part A and/or Part B. That should cover 80% of it’s cost. If you have secondary insurance it should cover the rest. That’s the way it is for my Lemtrada treatments. I’ve had no out of pocket costs.

      Good luck,

      Ed

      I don’t know

  8. Salvatore Bucca says:

    I was just informed today 10/22/18 that my funding was ending. I have MS for the last
    18 years . I was being funded for the last several years to use Copaczone. I was doing very well with the treatments, an injection, three times per week. I was able to move around pretty well and try to do as many normal things as possible. I was going for Physical Therapy twice a week at my own cost. I am hopeful that I will be able to find a Sponsor who can help me with Funding and getting back on to taking Copaczone.
    I pray that someone will hear my Plee and Help me. Thank You, Salvatore Bucca
    [email protected] (609) 915-3544 (610) 829-0130

  9. Brent Crispen says:

    We have a Part C MAPD tru Humana & have the option of Branded @ 156.00 mo or generic @ 100.00 mo.The generic was our option. We’re still looking for assistance because I also use Copaxone

  10. Tilly Marlman says:

    With Ampyra and Dalfampridine being unaffordable, has anyone gone to 4-Aminopyradine? I’ve read that it has to be carefully dosed, but can be an alternative medication.

  11. Lisa King says:

    I love 4 Aminopyradine! I would be a puddle of goo without it. I’ve taken it since I was 1st diagnosed in 2006, before it was approved as Ampyra. I get it compounded from the pharmacy at Shepherd Center in Atlanta, where I see my MS neurologist. I pay out of pocket because Tricare quit covering it. Total price for 3 months, including shipping, is $110.

    • Jazz says:

      Wow I’ll tell my neurologist about it. I have been taking Glatopa for 3 years, I use to take Copaxone(I was doing real good on it too) but Kaiser no longer prescribes it. So I have to take Glatopa, I have gain 30 pounds and get aggitated with it. A side effect of it, so I was like dealing with it. It has gone from 40 to 90 and now 150 dollars a month. I told my Neurologist , to find something else.. I will suggest this to her,hopefully it’s cheap like that.

  12. Monica A Ramos says:

    Diagnosed with relapsing remitting ms in 2008. I have Medicare/United Healthcare Replacement. I received copay assistance of $6000 which really only covered 2 months of treatment with Aubagio. Without copay assistance I’d have to pay $ 2900 a month for a 28 day supply. I can’t afford that.

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