I was diagnosed with Multiple Sclerosis (MS) nearly 17 years ago, at the age of 35, but I experienced symptoms of what we now know to have been multiple sclerosis as long as 15 years prior to that. When diagnosed, I was right about in the middle of the average age range for diagnosis; there were three FDA-approved disease modifying drugs in the United States and four in Europe (Rebif was approved by the European Medicines Agency for marketing in 1998 but not in the U.S. until 2002); and a new effort was beginning to better educate primary care physicians as to the first symptoms of the disease.
Very much has changed in the intervening years.
Now there are 16 FDA-approved disease modifying therapies for MS. The age range for typical diagnosis of MS is a decade lower than in 2001. There is even a network of pediatric MS centers as diagnosis of MS extends into the younger years.
Many in the MS community foresee difficulties for patient advocacy organizations around the globe in coming years as the struggle to offer services to people diagnosed with MS in their middle years meets the challenge of developing (and funding) new programs and services for younger members of our community and their families.
(I mention families, but I especially mean parents.)
When a person is diagnosed with MS in their mid- to late-thirties, they are already well on their way in life’s journey. While one may still be close to one’s parents at that age, the active role of parenting is over. By that age, many newly diagnosed people are parenting their own children. Parents of 30-somethings might be seen as potential donors to and strong advocates for our cause.
When a young person is diagnosed in college years and younger, the needs of both patient and parent are a whole different tangle of string.
As charitable organizations have tightened their belts amid ever-changing economic forces, our cause is now seeing new needs added to already tightly stretched resources. In 2017, the estimated number of people in the U.S. living with MS was revised up from 400,000 to one million. Substantive changes to worldwide MS prevalence estimates are likely needed, as well.
Without significant increases in funding, how will patient advocacy organizations, upon which many with MS rely, keep up? They must not only continue with high-cost services for the aging MS population, but also develop and expand support and services to a growing populace at the other end of the MS timeline. It is a time of introspection for MS organizations around the globe. But it must be quick and effectual introspection.
There are, of course, overlaps in needs of the two communities. There are efficiencies to be obtained in delivery of information. There are, as well, striking contrasts in specifics of content which must be developed, understood, and conveyed throughout these organizations.
Time is short, demand is imminent, costs are high, and resources are limited.
Please don’t take my writings as the angry rantings of an old man on his porch maligning the young ones for treading on the MS lawn.
The energy and passion of younger MS patients is a welcome counter to some of the dreary sentiment one sees in our community from time to time. Their use and savvy in matters technical are helping to improve the lives of many "laggards" (like myself) on the tech-adoption scale. Their enthusiasm at fundraising events for our cause which I have attended has changed the atmosphere into a celebration of potential. They’re turning dreams into drive, hopes into happenings.
There are, however, differences in how we can (and choose to) access services.
Smart phone apps which help many track their MS are of little use to someone with limited fine motor skills or impacted eyesight. Impromptu meet-up groups may be ideal for on-the-go young professionals, but not for those who must plan withdrawals from their energy budget with ledger-like accuracy. And sound advice about living life fully with MS isn’t just a different chapter, it’s a separate volume if you're newly diagnosed at 21 or at 41.
There is a burgeoning generation gap in the MS community. I remember when that term came into the sociological consciousness back in the 1960s. I’d like to think that we’ve learned a few things in the decades since and can find a way to bridge that gap and get everyone with MS what they need, when they need it, and at a price we can all afford.