The Price of Multiple Sclerosis Treatment

MS medications cost, on average, $60,000 per year.

Photo credit: ZaldyImg, CC BY 2.0.

By Anonymous

In the summer before my last year of college, I found myself suddenly unable to hold a pen. I tried to describe the sensation to my boyfriend and then to my friends: as my fingers fumbled to grip the object, I was struck, I said, by what felt like mental nausea. Not pain, really, but wrongness and weirdness, the normally imperceptible gap between will and movement now left disquietingly unbridged. Within weeks, I had been diagnosed with multiple sclerosis (MS), and this uncanny feeling was only the beginning of a more serious attack.

I learned later that I was lucky to have been diagnosed so quickly; it can often take doctors months, if not years, to identify the cause of such symptoms. The neurological effects of that first attack were less severe than the psychological ones. My motor impairment resolved in about six months, but it took me years to manage the anxiety and depression produced by my condition. Since for me the physical symptoms of the disease have been unusually mild, the worst effects over the long term have been on my work life and my finances. Concerns about healthcare coverage and costs limit my choices with regard to employment and set bounds to where I can reasonably live, making it difficult to move abroad and determining to a large extent where I am able to settle in the United States.

The National MS Society estimates that there are about 2.3 million people worldwide living with the disease. Accurate counts are elusive because neither the U.S. nor other countries require reporting of new cases. There are efforts underway currently to encourage reporting and provide more data for researchers, with the goal of improving time to diagnosis and disease outcomes. I am certainly not the only person with MS who has deep anxieties about the disease’s financial impact. NPR reported on the issue in 2015, following a study from Oregon State University and the Oregon Health and Science University on the costs of medication.

Multiple Sclerosis Patients Stressed Out By Soaring Drug Costs

I was initially shielded from the enormous expense of the disease by very good university health insurance and family resources. But, as I began to manage my own insurance and health care, I came to see the real price tag of MS. I only left student health insurance for the first time after receiving my PhD in 2013. My insurance ended in May, and I had a job lined up for September. I had to determine whether it would be more cost effective to extend or “bridge” my university health insurance with Cobra, or to try to get a cheaper plan through Massachusetts state insurance or the Health Connector. I ended up paying about $800 a month for Cobra because I could not find any readily available information on what my out-of-pocket expenses would be on another plan — and I knew from years of “explanation-of-benefits” forms (EOBs) that my treatment before out-of-pocket expenses was around $12,000 per month.

The first targeted MS medications were approved in the 1990s, with the interferon drug Avonex appearing in 1993. I have been treated over the course of the past decade with two of the later generation treatments — first the injectable Rebif, and now the once-monthly IV “infusion”-delivered Tysabri (both made by Biogen). The study that NPR cited, which was also published in Neurology, demonstrates that the cost of MS medications have risen steeply since 1993, with average costs now around $60,000 a year.

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This is in addition to semiannual or annual MRIs, which add thousands more, as well as the cost of regular medical care. (You don’t get to stop going to the OB-GYN if you get MS, unfortunately.) Despite the age of the first-generation drugs (which are still used by many patients) and the appearance of several new drugs, the costs of all drugs have risen. The study’s authors write that, while causes of this are “uncertain,”

the simplest explanation is that pharmaceutical companies raise prices of new and old MS DMTs [treatments] in the United States to increase profits and our health care system puts no limits on these increases. Unlike most industrialized countries, the United States lacks a national health care system to negotiate prices directly with the pharmaceutical industry. The US Medicare program, the largest single-payer health care system in the United States, is legally prohibited from negotiating drug prices directly with the pharmaceutical industry.

The NPR reporters came to a similar conclusion: costs of the drugs are high because biomedical prices are unregulated and Medicare, the government-administered insurance, cannot negotiate. (The government has repeatedly asked whether Medicare could become a drug negotiator—but, as The New York Times explains, permitting Medicare to negotiate without other major changes would make very little difference overall.)

In countries with nationalized healthcare, such as Canada and the UK, MS treatments are much less expensive. American pharmaceutical companies are making a lot of money. It is telling that every pharmaceutical company that sells an MS drug also has a financial aid program — but these programs cover medication, not treatment costs or MRIs. This is significant, because the costs for treatment aside from the prescription costs are also huge — and hospital and physician conglomerates are profiting too. Partners Healthcare has grown exponentially over the past twenty years and is now the largest private employer in Massachusetts.

Partners is one of the major players in my story. I received treatment for years at the Partners MS Center in Brookline, MA, only switching providers when I took a job in New York City. My new insurance, which I receive through a major university, is pretty good: the copays are high, but my out-of-pocket yearly limit is only $2,000, which is apparently not bad, and I have a flexible spending account. These costs were a shock after paying nothing for anything but the occasional inexpensive antibiotic prescription on my old insurance. I watched my EOBs carefully my first few months at my new job, and I verified that all my providers were in my network (my out-of-network limit is $8,000). After herniating a disc in my back, I had some anxiety about the cost of an MRI, but I just had to pay my deductible ($400). Things were going pretty well, and I learned to talk to the insurance company, find out about “negotiated rates,” read my EOBs, and predict my bills.

The next summer, I was living in Boston and determined that Partners MS Center was in my network. Naturally, I decided to receive treatment there, not wanting to spend half a day on a bus to NYC and the other half hooked up to an IV.

As I was (again) in a new situation, I carefully watched my EOBs and statements through the online insurance portal, until one day I saw a $640 bill show up. Presumably, this was the remainder of my out-of-pocket for the year, but I couldn’t understand why the bill was so large and called my insurance company. Get ready for some numbers:

  • As it turns out, the cost of the single Tysabri treatment at Partners MS Center (affiliated with Brigham and Women’s) billed at $25,320.89 (although insurance negotiates the rate to $17,000). This includes the medication cost of about $11,000. The cost of the exact same treatment in NYC, at the Judith Jaffe MS Center (affiliated with Weill Cornell), is billed at $497.01(insurance negotiates to $359.81), not including the price of medication, which is paid by my prescription plan (I do not know how much is billed).
  • Due to negotiated rates with the hospital and the pharmacy, as well as differences in medical coding (whether the IV infusion is considered outpatient treatment or chemotherapy or something else), there is a $14,000 difference in what the treatment costs in the two cities.
  • I also had my MRIs at Shields in Boston, the cheapest option — and insurance paid $3,327.37 in negotiated rates. For MS patients, MRIs are (at minimum) a yearly cost.
  • Most terrifying, I had 93 insurance claims in 2016: each MS treatment can produce two or three separate claims and I had extensive physical therapy for back and knee issues. The total amount paid by my insurance in 2016, after discounts, came to $71,643.47.

Without insurance, I would become responsible for these bills — or even higher ones, since I would not benefit from insurance discounts or negotiated rates. I would also be responsible for the medication costs, which I do not pay under my current insurance. It is not likely that I would have to go without any insurance at all, but if unemployed, I would need good ACA coverage (the kind available in Massachusetts) or pay huge Cobra bills. In other words: an MS patient, whether they’re receiving medication created nearly 30 years ago or medication currently in testing, must have “good” health insurance. Otherwise, that patient may fall into unbelievable debt just to get the treatment they need to stay functional.

I am currently seeking steady long-term employment, and interviewed recently for a job in a state that participates only nominally in the ACA. I met with HR to go through the benefits package, and saw that the out-of-pocket expenses for a single person were $5,000. These costs rose to $10,000 if a spouse were added. The treatments might be cheaper, or at least billed differently, on that insurance and in that region of the country — but I will need to find out, a sometimes daunting task, as such information is in no way readily available. (In many states, insurance providers and healthcare providers are not required to disclose negotiated rates.) On top of that, I will have to determine how much lower my net salary will be after accounting for the cost of my treatments, which could easily blow through that $10,000 in a month. Finally, if there are still ACA options when I am hired (if I am hired), available plans are so expensive that it would likely not make sense for my partner to use them.

The cost of MS treatments illustrates the nefarious interaction of pharmaceutical companies, healthcare corporations, and health insurance. Political squabbles over policy have hobbled health insurance companies from negotiating better prices and the government has failed (or refused) to regulate drug or treatment prices. One argument, which I find spurious, is that large financial resources and incentives are required to support medical research. But money earned is not being spent just on research, as pharmaceutical companies spend tons on marketing and make enormous profits — and especially on MS drugs: Reuters reported in October 2016 that Biogen posted “[s]ales of the biotechnology company’s market-leading oral MS drug Tecfidera of $1.03 billion,” which topped “analysts’ estimates of $1 billion,” driving up Biogen’s stock price.

Biogen profit tops expectations; focus on CEO search, new drugs

Excessive power in hospitals and medical centers create the same problems. Partners Healthcare was the subject of a Boston Globe Spotlight investigation in 2008, which sought to determine the effects of a huge monopoly on treatment in Massachusetts. Predictably, the effects included higher prices at Partners, even while negotiated rates for many less powerful or prestigious medical centers fail to keep up with their costs, leaving deficits instead of profits (although the treatment industry is still profitable overall). One major question, which has so far been especially intractable, is why the cost of treatment has risen so dramatically in general.

It does not seem that people’s health should be the matter of profit — it is a perverse system that makes the possibility of death or the realities of chronic illness the ground for making money. But the expense of health treatment does not just directly support business profits (and capital). When workers (labor) cannot be uninsured, even for a moment, they cannot easily switch jobs and are de-incentivized from seeking other work. “Good benefits” also come to stand in for good wages, when the two things should be uncoupled, and increases in health costs to employers prevent employers from giving raises, or at least gives them an excuse not to do so. Case in point: if I want to develop any retirement savings while continuing the treatment that slows the development of mental and physical impairment over the course of my life, I can never be unemployed—except, perhaps, in Massachusetts — and consistency is the most important feature of preventing disease progression in MS. I definitely can’t adjunct for work. The choices for the unemployed with chronic illnesses seem cruelly Dickensian: perpetual and inescapable debt or ever-increasing debilitation.

The U.S. government has failed both to limit or negotiate with healthcare and medication providers and either to nationalize or enact nation-wide reform that would distribute costs among the young and old, healthy and sick (and a nationwide solution is the only viable one) — and these failures double disease. They add a financial handicap to those already struggling with chronic illness in particular, even those people who are working or providing family care full-time. One reason for initially weakening and now gutting the ACA is supposedly to give Americans a choice — but it shows the preference for consumer “choice” over real choices about work and quality of life. For so many people, not having decent health insurance takes away not one, but many choices.

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