MS Patients Are Getting Caught in an Insurance Deductible Snag

MS Patients Are Getting Caught in an Insurance Deductible Snag

MS medications are expensive. Many people with MS are able to afford their high prices only because their insurance covers most of the cost, and what remains as their copay is often covered by many of the pharmaceutical companies that produce those meds. The companies offer patient assistance programs or discount cards to pay the copay. Now, however, that paradigm is changing.

If a drug company pays some, or all, of the copay, some insurance companies are now refusing to apply that payment to the patient’s annual deductible. It doesn’t matter that it’s the same amount the insurance company would get if the patient wrote the check. Because the money comes from the pharmaceutical company, however, the insurer won’t count it against the patient’s deductible.

The impact this has had on one patient was highlighted in a recent article in Kaiser Health News.

Kristen Catton uses Gilenya and it’s worked well for her, following two disease-modifying therapy (DMT) failures. She’s been on the med for two years and Novartis, which makes Gilenya, has helped Catton pay her $3,800 monthly copay. That’s made the medication affordable for her.

Until recently, that copay assistance counted against Catton’s $8,800 yearly deductible, and it also contributed to reaching her out-of-pocket limit. But recently, the insurance company switched gears. The copay assistance from Novartis would no longer be credited against Catton’s deductible. So, when the copay assistance ran out a few months into the year, rather than having been wiped out, Catton’s deductible was still sitting at $8,800.

Winners and losers

This new process is known in the pharmaceutical industry as copay accumulation. There’s a detailed explanation of how the process works and who benefits on the e-letter Drug Channels. Hint: Employers and health plans save a lot. Patients, on the other hand, may be forced to limit using the DMTs that had been helping their MS in order to afford them.

According to the Kaiser article, that’s what’s happening to Kristin Catton. “I’m talking to my doctor to see if I can I take (Gilenya) every other day,” she says. “I guess I’m winging it until I can figure out what to do.”

Copay assistance programs do have their critics. They contend that such assistance can encourage the use of newer, higher-costing therapies when there are more cost-effective DMTs available. In the United Kingdom, in fact, there’s a quasi-governmental organization that recommends DMTs to the National Health Service on a cost-effective basis. I wrote about that in an earlier column and, I think, the cost-effective test can have some merit. Some.

On the other hand, KHN quotes Bari Talente of the National Multiple Sclerosis Society as making an important point: Frequently, she says, MS therapies aren’t substitutable. “Most have different mechanisms of action, different administration and different side effect profiles,” she says. So, deciding on a DMT isn’t totally a question of its efficacy.

It’s not a simple matter, but part of it should be

The issue is very complex, and I recommend reading the entire KHN story to get the full picture. There’s no easy answer. But there should be no reason for an insurance company to change the rules for a patient like Kristin Catton in the middle of a course of treatment. That’s not what she signed up for. That’s not fair. Fixing that should be easy, right?

Let’s continue this discussion in our MS Forums. You’re also invited to follow my personal blog:


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.

Ed Tobias is a retired broadcast journalist. Most of his 40+ year career was spent as a manager with the Associated Press in Washington, DC. Tobias was diagnosed with Multiple Sclerosis in 1980 but he continued to work, full-time, meeting interesting people and traveling to interesting places, until retiring at the end of 2012.
Ed Tobias is a retired broadcast journalist. Most of his 40+ year career was spent as a manager with the Associated Press in Washington, DC. Tobias was diagnosed with Multiple Sclerosis in 1980 but he continued to work, full-time, meeting interesting people and traveling to interesting places, until retiring at the end of 2012.

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  1. Lucille Fournier says:

    what do people do if they have Medicare and do not qualify for co-pay assistance my Commercial insurance will be ending in July and I can’t find any help on my MS meds.


    My heart goes out to Kristen Catton. I have not read the Kaiser article, nor am I cognizant of a similar brewing dilemma in the U.S., but your article is certainly a red flag for all of us. Regrettably, tragically, we who suffer terribly from this disease are relentlessly criminally marginalized by SOMEONE who/that persists in playing Dr. Death on both sides of the pond, whether the insurance companies, or the insurance companies as the extorting front men for some other profane establishment of heartless profiteering homicide. The BIG question, the one that casts the DARKEST light is that if our human rights are being violated in this perpetually victimizing marginalized state we’ve been corrupted into like a death-row sentence, why are our legislators of both nations — supposedly the paradigms of human rights, not campaigning with extreme prejudice in our defense? The world has gone cold, again. I regret that my day has, once again, been profoundly disturbed by axacerbating my anxiety disorder. But, the killers don’t care. Maybe, skmehow, worldwide, we as a demographic should investigate and somehow establish a financial investment instrument we can all participate in whose own profit earnings can effectively cover our co-pays. Enough is enough. Time to fight. We gotta do this ourselves. I would like to think millions of us in number, whether marginalized or not,
    can and need to be effective as unified self-advocates. Forget the pharmaceutical companies; your article, above, suggests that they may play into the evil, and evil, it is given the life-threatening consequences. Our human rights should be equal — so the rhetoric of Magna Carta and the Constitution. Yet, suffer the marginalized. It may be time to develop our own financial warrior instruments against these revolting robber-barons, WHOEVER they are, whether mystifying , or not; it doesn’t matter WHO they are. What matters is our enclave of unified self-reliance; a peace-loving self-sufficient and consensual enclave defending ourselves, and blessing us with greater independence — peace-abiding anarchy? So what. The corruption has put our lives at stake. Persisting in relying on diminishing hope for assistance from a convoluted system of criminal negligence and evil intent for profit is self-defeating and self-destructive. In the long run, it does nothing for any of us emotionally and phyyically. My anxieties only exacerbate my devastating auto-immune responses. It’s time to be unifying and proactive, self-effective in sowing world-wide financial and political clout, voice to be reckoned with, and self-sustenance. It’s time to unilaterally unify and fight. They aim to kill us for a profit, don’t you see? Time to fight. Nobody kills ME. I’ll speak for all of us, now: We should and need to accept any assistance, now, whether social, cultural, political, and economic from our blessed and compassionate advocates to accomplish this singular goal. We probably do need their assistance and expertise to organize ourselves. But organize ourselves, we must, for our djinns are out to kill us. I apologize to all of you for the length, above. But, SOMEbody had to say it. Thank you for your compelling article.

  3. Tommy says:

    Is anyone surprised? When the economy tanked in ’06, businesses closed, 50% of car dealers were shuttered, banks failed – but not one insurance company. Remember to vote.

  4. Anthony Garcia says:

    This is just off the top of my head but me and my girlfriend looked up the the statistics of who it mainly effects and if you look at the numbers, it’s a little strange tha numbers usually show up in America a little in the UK but that’s it, weird.

  5. Teresa s. says:

    I am going through this situation right now. I was on Copaxone, one of the 1st drugs for ms. When it became the first and only drug to be covered by insurance it also became unaffordable to me because I could no longer receive assistance with my copay and would have to pay over $1,000 per month out of my pocket. As of January first of this year I have been without any drug.

    On my last visit to my neurologist she gave me a pamphlet for a new drug. The maker of the drug was offering this $65,000 drug for I will be starting my infusions at an infusion center and having all my blood testing done for free.
    Let’s see, what is wrong with this picture? What is wrong with medicine in this country when Up is down and down is up and $1000 is too much and $65,000 is free?

    • Ed Tobias says:


      It’s the difference between a shot or a pill, which you administer yourself at home, and an infusion in an infusion center. As far as Medicare is concerned (and private insurance generally follows Medicare’s lead) the first treatment falls under Part-D and is covered like any other pharmacy drug….just a percentage. The second treatment is covered as if it’s a visit to a hospital or a doctor’s office. 80 to 100-ercent the cost is covered and a secondary insurance policy can cover the remainder.

      You’re right. It makes no sense at all.


  6. I think the biggest difference is the country were we live. I’m in Canada and I’m lucky enough to have the newest pill on the market for free : mavenclad (cladribine) and this medication my change everything for me because I have flare every other month and I’m really afraid of my living prospect in the future. I had begun to check in a living facility and I’m 41. With this pill I have 50% chance to stop the MS or really slowing down the process.
    I think our medication doesn’t have to be chose by our insurance provider.

    • Ed Tobias says:

      Hi Beth,

      That’s one of the benefits of universal healthcare. Though I’ve read of difficulties scheduling an appointment with MS specialists in that system, and of some government restrictions on DMTs, it must be nice not to have to worry about being under the thumb of the insurance gods.

  7. Amy Adams says:

    So this just happened with my insurance, United Healthcare. I started on Ocrevus in January with co-pay assistance. I checked my claim status today and realized my recent drug infusions were not applying to my deductible and out-of-pocket maximums. I contact UHC for an explanation and was told “It’s not fair I receive monetary assistance when other patients don’t have the same benefit. Deductibles and out-of-pocket maximums are a PATIENT’S responsibility.” Needless to say, I came unglued. NO ONE will tell me what’s fair and unfair when I am dealing with a progressive, life-long and life-limiting disease. So after pulling myself together, I set my mind to how I can best play this game. I will glady pay the drug bill and meet my out-of-pocket maximum. I will then turn that bill in for reimbursement to the drug maker. Check-mate.

    • Ed Tobias says:

      Hi Amy,

      Thanks for letting us all know about your experience getting caught in this trap. I hope that the drug company will reimburse you directly. Please come back and tell us all if they do that. Or, of course, if they don’t.


  8. Robert Infield says:

    I am on Ocrevus and Medicare. I just had my first infusion since I went on medicare. I was told that they would pay 80% and I would have to pay my medicare deductible that is $180. My secondary insurance (blue cross blue shield) will pick up the rest. I am in Minnesota and the cost for the infusion was $85,000.00. (twice a year)
    I was also on Ampyra but had to stop taking it because of the cost. ($2,500.00) a month. Insurance would help, but still would be about $8,000 a year out of pocket. With my other medications and hospital bills, this is out of reach for me. Good luck to you all……….

    • Ed Tobias says:

      That’s precisely my situation, Robert, but with Lemtrada rather than Ocrevus. Medicare does 80% and AARP’s UHC plan covers the other 20. But I had to drop Ampyra because it fell under Part D and the out-of-pocket was too high.


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