Cost Effectiveness in MS Treatments


I’ve thought a lot about my treatment costs in the past few years and even have raised the question at OhioHealth, where I am treated with Tysabri, made by Biogen.  When I first went to this new location in January 2015 the cost was around $14,000 per month. This new medical provider (I followed my neurologist there when he decided to go to a different medical practice) constructed a new building and the infusion clinic was moved there. Initially I was shocked, but then angered to see the cost of my treatment, which was costly enough at $14K per month in their old building  had jumped to $22,585 per infusion in the new one, meaning my treatment cost would be billed at over $250,000 for the year.

When I checked my medical records for this story, I find my medical provider is now charging $24,908 per treatment, which is more than a 10% increase from January 2015 to April 2016.  Part of this is an increase in the drug’s cost and the remainder is their infusion clinic overhead.


When I question this, the explanation given is fairly predictable and had to do with negotiated payments and how my insurance was not going to pay that much and it would be a significantly reduced amount that was eventually paid.   For the increased bill of $24,908 the clinic provider is ‘only’ paid $12,578.    $160,000 per year is the real cost for my treatments based on today’s pricing, which is still a staggering amount to consider.


I continue to have my own mental struggle as to whether this amount of money is worth it in the big picture, considering my age and other factors.  Is it fair for my treatment costs to affect the health care dollar costs like this and take a sizeable chunk out of the available monies? How much does my treatment affect the escalating costs of health insurance? MS is a chronic disease that as of now has no known cure and I could conceivably continue on this treatment for the remainder of my life, amassing treatment costs in the millions of dollars.


Fortunately for me the entire cost of treatment is covered by my private health care insurance along with the patient assistance program for Tysabri costs.  I have paid nothing out of pocket all these years but I imagine these types of bills are part of what is driving up the cost of health insurance, for which I do pay a lot and so does everyone else.


Just when I think I am over being angry or frustrated by my MS treatment cost there is often another reminder of this escalating bill, usually in the form of a notice from my insurance telling me how much they had been billed and  actually paid.  Today’s reminder came in a different way – through the writings of Dr. Gavin Giavanonni, and Bart’s MS Blog, written by MS doctors and researchers  with   the departments of Neuroimmunology, Blizard Institute, Barts and The London School of Medicine and Dentistry, in the United Kingdom.


In this particular article they talk about NICE, the National Institute for Health and Care Excellence in the UK. One of the functions of NICE is to set pricing for healthcare treatment, including drug costs.  NICE decides on what they consider a fair price to pay for a drug and then looks at other options for treating the patient and then decides which would be most cost effective for their government health care system. The blog authors are also concerned about affordability and accessibility of drugs and how the policies of NICE affect treatment and posted this observation from a recent conference

“Another ground-shifting poster was the ORATORIO study results (ocrelizumab in PPMS). This study is the first study to show a DMT slowing the rate of disability progression in PPMS. This has to be one of the most significant things to happen in the field of MS in the last 10 years. Despite this I am concerned that NICE may not view ocrelizumab as a treatment for PPMS very favourably. NICE always assesses cost-effectiveness using an incremental cost model. For PPMS the cost-effectiveness of ocrelizumab will be compared to what is out there already, i.e. best supportive care.”


Their writing had me thinking again about my own treatment cost and now I also wonder if I could put a price on what it might cost to provide  me with supportive care compared to the money being spent on my drugs.  For now I would not need much in the way of help and all of the money could be spent on someone else.  But that picture could change very quickly if my MS progresses because I was not on treatment and I found myself dependent on health care services for my activities of daily living.  Would that amount of money take care of me if I were in a nursing facility? In 2013 the average daily cost of nursing home care was $248/day or about $90,000.  Just think of the money that would be saved if somewhere someone decided the cost effectiveness of my Tysabri showed that health care money would be better spent by putting me in a nursing home?


Reading this question in the Bart’s MS Blog makes me concerned for all of us because the cost effectiveness model might be what’s needed to control our drug costs here in the US.  In some ways our insurance companies are already doing a form of this by often denying treatment or authorizing only certain drugs for reimbursement but not all of them.


The topic of cost effectiveness is one of the core points listed in the North American Registry for Care and Research in Multiple Sclerosis (NARCRMS) project, a major initiative for the US and parts of Canada looking to link patient clinical data together.

“Health Care Economics Core

Will identify information to be collected in the database regarding disability, utilization of health care resources, and employment to help better understand whether the use of expensive therapies has been worthwhile from an economic standpoint, what are the savings from fewer hospitalizations, less disability and longer employment spans, and decreased utility of other health care resources”

Unlike the system in the UK which helps with the other costs of living such as housing, transportation  and medical care for people who are  in need due to the financial demands of living with a chronic illness, we don’t have that broad ranging assistance here in the US.  My health insurance would not pay any of these living costs – but they will pay for my drugs.


Being financially responsible leaves me little choice –  I will continue on these treatments despite the escalating costs and my lingering questions  and do my best to avoid future care needs that I would have to pay from our own resources.  In the meantime I just hope the next bill I open doesn’t cause me to require treatment from choking on the price.


be well,





Last month the PCORI group charged with looking into Multiple Sclerosis clinical effectiveness research questions  convened a meeting of  people who had various interests in the task.  I was asked to participate  because I am the lead patient representative for iConquerMS™  with the Accelerated Cure Project for the MS PCORnet.

I wrote about this meeting and asked for input from anyone who cared to share their preferences of choices  for possible research questions.  Thank you if you took the time – I did include your preferences in noting the selections i entered.

If you did not see it, you might want to back up and read my original post before you go any further with reading  this one so you understand the context of the rest of what I am going to write.

PCORI and Me and You!! – Help Prioritize Research Topics

Now the prioritized questions have been returned to us and I have those in two different forms; the first is the overall ranking of the questions and the second group is a look at how each interest group cast their preferences.  Keep in mind  there were four people with MS out of 40+ people who sat in on this discussion, and our voice did not carry the weight to match that of the other parties. The number of participants in each group were:

Clinician/Medical Professional (7)

Industry (12)

Other (5)

Patient Advocacy Organization (5)

Patient (4)

Payer (5)

Researcher (3)

PCORI will further refine these questions and then possible issue a call for proposals from researchers to do one or more of these.  The earliest that might happen would probably be August or September.

Here are the results in both forms –


# who ranked it at all
# who ranked it #1 or #2
J.  What are the comparative benefits and harms of non-pharmacological and pharmacological approaches in relation to key symptoms (e.g., emotional health, fatigue, cognition, pain) in people with MS?
F.  In people with progressive MS, what is the comparative effectiveness of different care delivery approaches (i.e., MS specialty center vs. community neurology; direct care vs. telemedicine; “specialized medical home” vs. community neurology delivery of care) in improving outcomes such as functional status, quality of life, symptoms, ER use, and hospitalization?
I.  Does an integrative model of care along with DMT in a newly diagnosed individuals affect disability progression and symptoms (physical, emotional and cognitive) compared to treatment with DMT alone?
A:  What are the comparative benefits and harms of different disease-modifying therapies in newly diagnosed relapsing, remitting multiple sclerosis on disease activity, disease progression, symptoms, and quality of life?
B.  Among MS patients receiving a DMT who experience disease activity, what are the benefits and harms of continuing the same therapy versus changing to a new medication?
C.  Is treatment escalation using DMTs as effective as starting treatment with higher efficacy treatments in early active, previously untreated patients?
E.  What is the comparative effectiveness of stopping versus continuing therapy after a period of prolonged disease stability in patient with MS?
L.  What are the benefits and harms of early vs. delayed treatment with DMTs, in terms of symptoms, function, QOL, and disease activity in treatment-naive patients recently-diagnosed patients (meeting McDonald criteria within 12 months)?
M.  In patients who recently transitioned from relapsing to progressive MS or were recently diagnosed with SPMS, what are the benefits and harms of continuing compared to discontinuing DMTs on outcomes including but not limited to symptoms, QOL, function, disease activity, disability, and/or mortality?
H.  In people with relapsing MS, what is the comparative effectiveness of physician-directed vs. allied health-directed vs. navigator-directed, vs. technological-enabled self-management tools for improving initial decision making, patient care experiences, decision regret, quality of life and adherence to therapy?
G.  In people with relapsing MS within 2 years of diagnosis, what is the comparative effectiveness of changing DMT using a NEDA strategy (no relapse, no new MRI or enhancing lesion, no change in disability) vs. not changing DMT in terms of functional status, quality of life, symptoms, ER use, and hospitalization?
K.  What are the comparative benefits and harms of specific dietary regimens in people with MS?
D.  What is the comparative effectiveness of smoking cessation efforts upon disease activity, progression, symptoms, and quality of life in MS?



This attachment is an Excel spreadsheet with all of the various stakeholder groups itemized.  I have to share this as an attachment because the file is so wide and spreads across a large number of columns and rows.

MS CER Ideas per interest group

Please be sure and tell me what you think after you have the chance to review these results. And a special thanks to everyone who  helped me in the first round to rate them on our behalf.

be well,