Rising MS Medication Costs Mean Some Patients Are Skipping Doses

Rising MS Medication Costs Mean Some Patients Are Skipping Doses
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Forced by medication costs to choose between regularly taking their medications or buying groceries, some people with multiple sclerosis are choosing the groceries. Some are skipping doses and others have stopped taking their disease-modifying therapies (DMTs) entirely.

This troubling news is reported in a survey by the National Multiple Sclerosis Society (NMSS). The results show that about 40 percent of those surveyed have skipped or stopped taking their DMTs because they couldn’t afford it. More than half of the 578 respondents are worried that over the next few years, they may have to join those who have cut back on their MS meds.

Others squeezed by the high cost of DMTs have altered their lifestyles in other ways: 25 percent have spent less on themselves, 16 percent have reduced their savings for retirement or college tuition, 9 percent have put off paying bills, 4 percent have postponed retirement plans, and 2 percent have taken a second job.

The financial burden of MS meds would likely fall on many more shoulders were it not for financial assistance programs, most of which are provided by the pharmaceutical companies who make the DMTs. More than 70 percent of the people in the NMSS survey say they’ve received financial assistance for the DMT they are currently using. More than 80 percent say they would have some or extreme financial burden if they didn’t receive assistance.

DMT prices soar

This survey comes at about the same time as a study published in an online issue of the journal Neurology reporting that the cost of MS medications nearly tripled between 2011 and 2017. Looking at the database of the U.S. Medicaid system, researchers found that spending on 15 DMTs rose from $453 million to $1.32 billion over those seven years. This increase happened despite the introduction of generic versions of some of these DMTs.

The report uses glatiramer acetate (also sold under the trade name Copaxone) as an example. The generic version of glatiramer acetate was introduced in the U.S. in 2015. Yet when that happened, the price of Copaxone immediately rose by $441 per prescription.

Here’s why, according to study author Daniel Hartung, PharmD, MPH, of Oregon State University: “Before the introduction of the generic drug, the maker of the brand name drug worked to push its market share from the 20 mg dose to the 40 mg dose, which was not interchangeable with the new generic.”

Hartung added, “The low market share for the generic drug was also because the generic drug was only 15 percent less expensive than the brand name drug at 20 mg [and] approximately the same cost as the 40 mg dose when it launched. Of course, some doctors and patients may also be reluctant to switch to a generic drug for clinical reasons.”

The cost driver may not be what you think

In a study published last November by the online journal Neurology, four executives directly involved in the marketing or price-setting of DMTs for MS were interviewed about how prices are set for those medications. Their answers were not the usual “we have to recover our research costs” explanation that we usually hear from pharmaceutical companies.

“Participants consistently stated that initial price decisions were dictated by the price of existing competitors in the market,” the study’s authors said. “Revenue maximization and corporate growth were drivers of price escalations in the absence of continued market penetration,” they added, emphasis mine.

“Although decisions to raise prices were motivated by the need to attract investment for future innovation, recouping drug-specific research and development costs as a justification was not strongly endorsed as having a significant influence on pricing decisions,” the study’s authors said.

Ouch! Well, at least these execs appear to be honest about what’s happening. But if this information is correct, what in the world can we do about it? I mean, people are choosing between MS medications (and other meds, I suspect) and food! Any ideas?

You’re invited to visit 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.

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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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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7 comments

  1. Alan says:

    I am continually surprised that people with MS want medication prices to drop. It is precisely the high profit potential that drives research that is going to improve medicine and find a cure.

    Doesn’t this mean a hardship for patients? Not actually. Consider if the price of a drug went from $80,000 to $40,000 per year. Will we pay less? Will our deductibles or copayments go down? No. We don’t pay more or less, unless we are buying out of pocket and that has to be very, very few people.

    • Elizabeth White says:

      They are NOT going to find a cure why should they all those people at the MS society would be out of a job……. They will find disease management drugs instead that will make all those pharmaceutical companies happy and sassy with all the money 💰 we will pay!

  2. Terry says:

    Well Ed, I was fortunate to be covered under my husband’s insurance rather than Medicare for quite a few years, be it UHC, Cigna or Aetna. The co-pay for a 90 day supply of my Avonex, Rebif, Copaxone and Tecfidera usually ended up being zero dollars due to co-pay assistance. It was a huge help.

    Then he retired early due to his own health issues. I had to go on Medicare Part D. While many of the plans covered Tecfidera, a cost of $2800-$3100 per month after insurance was out of the question. There is no co-pay assistance once one goes on a government program. My Neuro helped me apply for grant money which was approved…to the tune of $6000…for the year. I opted out. Two months of medication would only put me back where I started. Someone else maybe could benefit more. Who knows?

    So I stopped the DMTs. I’m 63 yrs old. When I was diagnosed in 1988, they didn’t even have DMTs. All I know is the DMT’s are ridiculously expensive and don’t need to be. I also know there is a heck of a lot of jaw flapping in Washington about allowing Medicare to negotiate drug prices. And it’s not happening. Too many pharmaceutical lobbyist’s making some people on The Hill richer by the day. Not that I mind success…just don’t screw over those who are ill.

    • Ed Tobias says:

      Hi Terry,

      I ran into the Medicare Part D problem when I retired. I was using Aubagio, which was effective and which presented no side effects. So, the pharma company wasn’t allowed to offset the co-pay and I couldn’t find a grant. So, I switched to Lemtrada. Because it’s an infusion it was covered by Medicare B and what the 20% Medicare didn’t cover was covered by my AARP/UHC medigap insurance. Lemtrada, I’m happy to say, has worked well for me and, though it’s MUCH more expensive than Aubagio (in the short run, anyway) it hasn’t cost me a cent.

      (No DMTs, either, when I was DXed in 1980).

      Hell of a way to run a railroad.

      Ed

  3. LINDA Fitch says:

    I’m one of the many skipping here and there on part D Medicare. I was fine while my husband worked and I was covered on his insurance. But he retired early, and I had to go on Medicare early-my state of VA won’t sell me a supplemental policy because I’m to young, and I’m not income qualified for medicaid. So I’m disabled and stuck with out of pocket, that are out of this world! My husband was able to purchase a “secondary” policy from his former employer that has caused me more stress and endless hours on the phone with people and machines who, I’m convinced want me to give up or have a break down.

  4. Isabel says:

    That is really sad to hear that patients are skipping dosages just to make ends meet! I understand that pharmaceutical companies need to stay profitable and recoup R&D costs, but patients are the ones who are paying for this dearly in the end.

  5. Melissa Vemi says:

    if it wasn’t for my parents I would not have a Medicare supplement and I would not be on a disease-modifying therapy. Due to the high cost! Thank God for my parents being able to help. They are using up my medical trust fund but that’s what the money is for to help me out. It’s just a little soon nor than I thought I would need it. I was hoping not to touch it till after they both passed but they are still alive and well and thankful to be able to help me. God bless us all 🙏😇❤️

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