4 Things I’ve Learned About Paying for MS Medications

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by Ed Tobias |

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Are you having trouble paying for MS medications? If so, you’re not alone. People change or lose their insurance, and plans change the medications they cover from year to year. Your neurologist may change your medication without realizing that moving you from an injection to an oral med may radically change your out-of-pocket cost if you’re on Medicare.

Pharmaceutical companies have programs that can help cover or reduce those out-of-pocket costs but they have income limits. They’re also not available to people on Medicare or Medicaid due to a federal anti-kickback law.

Some nonprofit foundations can provide financial help, but they don’t always accept new applications and frequently don’t have money available for MS patients. Even if you manage to snag a grant, you might wind up with that assistance rug being pulled out from under you.

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Recently, a woman complained to the private Tecfidera And Multiple Sclerosis Support Group on Facebook that she received an unexpected copay bill from her pharmacy. She claims to have been informed that the grant she’d received had ended and that the foundation’s well is now dry — no more money for MS grants.

Another potential problem also is brewing. A Wall Street Journal article last fall reported that the U.S. government is investigating whether patient assistance programs, even ones that only provide advice, are legal.

What I’ve learned about paying for medications

Talk with your neurologist about cost. Very few patients do this even though I suspect most doctors don’t consider cost when deciding on an MS treatment. But just as you should consider efficacy and risk when considering a medication, your ability to afford it should be a part of the decision-making process as well. Also, your neurologist probably has patients who are receiving payment help and can share their experiences with you.

Contact the patient assistance programs at the MS pharmaceutical companies. The National Multiple Sclerosis Society has an excellent drug-by-drug list of these programs on its website. I recommend checking it early in your search for financial help.

Contacting those programs can be frustrating but worthwhile. My experience has been that some of the people who answer these calls, generally nurses, are knowledgeable and helpful. Others don’t seem to want to bother to do more than read a script. I’ve had good luck with the assistance programs at Acorda and Sanofi Genzyme. The former provided me with direct copay help for Ampyra (dalfampridine), and the latter helped me find grant assistance for Aubagio (teriflunomide).

Contact a nonprofit assistance foundation. This can also be very frustrating. Fortunately, I was able to obtain assistance from a foundation with some great help from a nurse at Sanofi Genzyme’s One to One program. I was on Medicare when I switched to Aubagio, so Genzyme’s copay program wasn’t allowed to help me. However, my One to One nurse, whom I had called about another matter, knew that a nonprofit foundation had just received new funding for MS patients. She called the foundation and then stayed with me on the phone for nearly an hour until we got through to a live person. The nurse then helped me make my case for assistance. I wound up receiving a grant of $6,000, which covered all of my Aubagio copays for a year.

Full disclosure: In 2017, I was paid by Sanofi Genzyme to participate in a one-day Lemtrada MS Digital Advisory Board meeting.

Keep calling. The foundations that distribute grants get their money from donations. They don’t know when they’ll receive new money to distribute and they won’t take a waitlist. I was lucky to have been tipped off by the One to One nurse at the right time. Your best bet is to check the websites of various foundations each day to see if they’re accepting new applications from MS patients. If they are, run — don’t walk — to the phone and apply.

The National Multiple Sclerosis Association has created a list of these foundations:

Have you found good strategies to help pay for MS medications? Let others know in the comments below.

You’re invited to follow my personal blog at www.themswire.com.

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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.

Comments

David Seffer avatar

David Seffer

Boy, I'm happy to have MS in "socialist" Europe...

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Anita avatar

Anita

Hi David. my name is Anita and I have not had a flare up for 20 years. Now my doctor wants to put me on aubagio. I am an American who lives in Spain, so could you inform me what is the availability of this drug in Europe? I cannot afford $7,000 per month for treatment/drug!thank you...not sure if I wait for your comment on this site?

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Kristin V. Johnson avatar

Kristin V. Johnson

When you go on Medicare at 65, move to an infusion if you aren't already on one. They are covered under Part B, and with a supplemental, your out of pocket will be 0.

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Ed Tobias avatar

Ed Tobias

Yep. That's precisely what I did and why I moved from Aubagio to Lemtrada.

Ed

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Lisa M avatar

Lisa M

Hi Ed. just curious how long were u on Aubagio.

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Ed Tobias avatar

Ed Tobias

I was on Aubagio for about two years. I'd probably still be on it if that large co-pay didn't exist.

Ed

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Peggy avatar

Peggy

I am using Ocrevus treatments which are IV and on AETNA Medicare plan but have out of pocket costs. What do i do that is 0

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Vicki Pomeroy avatar

Vicki Pomeroy

There is no infusion of Aubagio & Ampyra

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Amy B avatar

Amy B

I was diagnosed in 1992, and depression is a severe symptom for me. Does anyone else deal with this issue and, if so, what do you take for it? I am have been very happy since I started Viibryd five years ago. Insurance is now forcing me to fill the prescription 90 days at a time so I am no longer qualified to use the manufacturer 30 day supply coupon. My out of pocket went from $15/mo to $150/mo.

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Ed Tobias avatar

Ed Tobias

Hi Amy,

Thanks for sharing your problem with us and I hope you find someone who can help you find a way around this. I'd also suggest you raise this problem in our MS Forums section, where there may be others with the same problem.

https://multiplesclerosisnewstoday.com/forums/

Ed

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Joni avatar

Joni

This website found me, thank God! I called in for my recent refill (Feb) of Ampyra. They said they’ll be filling it with the generic; Dalfampridine, plus I’ll have to pay $150.oo copay! I said “wait, I’ve been on Ampyra (name brand) for 3years & the manufacturer gave me a financial program that was at first, $20. copay, then zero $ copay! Now you say your giving me generic for $150.? They did, I’ve used it for 1mo & I’ve fallen down 10-12 times. I Rarely Ever use assistance. I’m 98% mobile unless in a bad flare. (*sidenote, there are angels in the world. I fell in a parking lot, a man walked up to me & said “take my arm”, I said “Oh no! You won’t be able to pick me up! I’m dead weight & I’m not tiny! He insisted, so I held his arm & he pulled me up so fast, it felt like I was a 50lb child & my Dad picked me up! He must have been former military. I didn’t get a good look it was dark. He could of been 40 or 70(?). I told him I would pray for him & the sweet lady who walked me out before I dropped. He said “Thanks I could use it”! There are blessings along with this desease. Yes I’ve prayed for the “Walgreens pkg lot man”. My husband felt guilty & said “I should have been there for you!” He was a bit jealous that another man helped his wife in need & he had to listen to me say how strong he was. My loving husband has gone through throat cancer & heart issues over the past 6yrs & lost about 70lbs. I should not have told him.
Sorry for the random side story. I’m so upset about this Ampyra generic. So is my Neurologist! Their office has reported many other MS patients who were switched to generic Ampyra & are also backsliding. Any help out there? Thanks 🙏🏼

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Tracey Jackson avatar

Tracey Jackson

Hi I’m T.J. I have a 54 year old brother with ms and he also has a learning disability so it’s hard for him to navigate all the red tape of getting meds also hard for me , I am new to this . Our mom was taking care of him but she died of gastro cancer so he is with me now . I’ve been trying to help him get in a nursing home so he can have a proper care but it’s a lengthy process because of the ms medications . He ran out yesterday and now I’m scrambling to try to locate more . Any advice would be greatly appreciated

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Ed Tobias avatar

Ed Tobias

Hi Tracey,

If you're in the U.S. you might try calling your state chapter of the National MS Society to see if they can help. You can find their contact info on the www.nmss.org website.

Ed

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Labib Faris avatar

Labib Faris

Hi there,

Very informative and specific. I was diagnosed wit MS in 2010 and been on Tecfidera since then at $0 copay. Being disabled I started on Medicare on June 1st at the age of 62. Now with Medicare and Express Script my monthly copayment is $2700 the first month the $2000 every month after that. I have meds till this Wednesday with a dr appointment this Monday. Will discuss with him. This is scary

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Ed Tobias avatar

Ed Tobias

Labib,

I hope that you and your neurologist can come up with a plan. Be sure to speak with someone at Biogen's patient services to see if they're able to help with your cost.

Good luck,

Ed

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Debra Cole avatar

Debra Cole

We use Good RX for dalfampridine but it still costs around $100. Hoping to find some grant money 🙏

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Anita avatar

Anita

So there is now a Generic for Tecfidera you’d think that would be good news. Tecfidera Co-pay assistance program fully covered annual out of pocket expense. Now the Generic at over $2300 per month with no copay assistance is too expensive. Insurance won’t cover Tecfidera since generic is “available”. So now I will not be taking any DMT thanks to unreasonably priced generic coming on market. We’ll see how long I last. Guess this is natural selection that our healthcare/insurance system has built in. It’s a feature not a bug in the system. Frustrating

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Ed Tobias avatar

Ed Tobias

Hi Anita,

I've heard that "feature, not a bug" description before and I got a chuckle from your using it. Unfortunately, this isn't a laughing matter. Have you looked at your insurance companies list of approved medications (the formulary) to see a med they might approve? There are more than 20 DMTs available in the US. Hopefully you and your neuro can find one that your insurance company will okay.

Ed

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Wendy Roswadowsky avatar

Wendy Roswadowsky

I'm in the same boat Anita. Just disgusting these drug companies are murderers and theives!

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RM avatar

RM

As of January 1, 2021 Biogen has changed their $0 copay program to have a $20,000 annual cap. I called them and they are able to quickly look up exactly how much they covered last year for medication and services. For people who receive their infusions in a hospital setting this could have an impact.

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