Welcome to the Carnival of MS Bloggers, a monthly compendium of thoughts and experiences shared by those living with multiple sclerosis.
by Laura at MultipleSclerosis.net
Preface: this entry is about MS and mortality rates and lifespans, which some people find unsettling to think about; it is a tough topic to consider and even harder to write. Knowing this, you may choose to return to something else to read while I try to make sense of this.
Many times over, I have said Multiple Sclerosis usually will not kill us – it can make our lives miserable and set the stage for other health problems to overtake us, but for the most part MS does not kill. Complications from MS can be serious – the most likely scenarios I think of with MS is no longer being ambulatory, and eventually being bed-ridden. People who are bedridden or even those who are in wheelchairs, can develop problems with circulation. They easily can get pneumonia. Even simple bed sores from sitting or lying in one position too much can create infections that are often impossible to cure. Infections from UTI’s can go unnoticed for longer periods of time. Swallowing for some people becomes difficult and aspiration or choking could be lethal. But the MS – our autoimmune system turned onto ourselves – is not directly to blame, it is just complicit in our decline.
When first diagnosed, I read somewhere the average life span of a person with MS used to be about 7 years less than the non-MS person. I also read that the advent of Disease Modifying Therapies (DMTs) had changed that picture and now there was very little gap between the two populations. These were words of great hope and I have shared them more than once, encouraging people to strongly consider selecting a DMT with their doctor’s help, and sticking with it.
In discussion with various neurologists, I slowly began to see this picture wasn’t necessarily accurate. Many of these numbers and ideas were shaped around the patients who were actively seen by doctors and did not include those who opt out of treatment or couldn’t afford to see a doctor. Then there is another MS population – the people who end up in long-term care facilities. These people aren’t usually seen by neurologists and their care is handed over to other medical specialists. So much of the evidence to support this life span number was anecdotal and limited to a rather small population.
Now I am forced to look at those numbers and ideas again – a study released in December 2013, Survival in commercially insured multiple sclerosis patients and comparator subjects in the U.S. , Kaufman et al., concludes that people with MS who have commercial insurance, live six fewer years than others. This study came to my attention when I began seeing headlines in my newsfeeds such as ‘People with MS live Shorter Lives’ and ‘MS Life Expectancy Shorter.’
For this study the authors looked at a rather large sample population from the United States – over 30,000 MS patients, and almost 90,000 non-MS subjects, and compared death rates from 1996-2009. To be sure they were comparing apples-to-apples, they matched the study subjects by sex and the region of the country where they lived, and which insurance company provided their coverage. They used information found in the Social Security Administration Death Master File (SSA DMF) and the National Death Index, as well as the Optuminsight Research (OIR) database, which contains the records of the commercial health insurance companies in the United States. The researchers go into the fine detail as to how these cohorts were found, matched and studied and you can read the entire article online if you want those facts.
This seems to be the first large-scale look at these records in the United States and yields much the same results as similar studies done in other countries. Researchers in Europe and Canada most recently have looked at the life expectancy of people with MS being 6-8 years less, depending on which study you read, compared to the projected 6 year mark in the US. There seems to be a consensus with these studies on the difference of years between MS and non-MS populations.
In the midst of this sobering study there is encouraging news. It turns out that much older studies found a larger deficit number of years in MS vs non-MS populations. A Danish MS registry cited a 10 year mortality difference, but their study was performed between 1949-1996; the majority of those years were before DMTs were available – that didn’t begin until 1993. Over a similar span of decades many other studies also found results mirroring those of the Danish study. A study in Norway found an 8 year difference, Italian researches identified a ten year difference and another out of Austria cited 15 years for females and 11 years for males.
It has only been in the past decade or two that neurologists are able to treat MS early and aggressively with DMTs. It is easy to draw the conclusion the availability of DMTs has shortened the disadvantage of life expectancy for those of us with MS. Yes, living 6 years less is crappy news but it is a better number than 8 or 10 or 15 years.
The study raises many questions and perhaps other researchers will continue the thoughts, particularly helping us to understand the disadvantage people who don’t have commercial insurance face in life expectancy and chronic disease. The study does not look at mortality rates for people who have government insurance (Medicare or Medicaid or Tri-care) or no insurance at all.
Discussing our mortality is not simple to do, and it is even more complex when it involves acknowledging the deck is stacked against us due to having Multiple Sclerosis. The discrepancy of years should be getting smaller and smaller over the next few decades as a greater percentage of people with MS will have had DMTs as part of their treatment for the entire time of their diagnosis. Right now the numbers include people who may not have had any treatment at all, or had disease modifying therapy available only a decade or so. I hope to be around and see what the numbers look like in another decade or two, and how the wider use of DMTs affects the lifespan of us all.
Wishing you well,
This concludes the 153rd edition of the Carnival. The next Carnival of MS Bloggers will be hosted here on April 3, 2014. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, April 1, 2014.