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.