Tuesday, March 28, 2023

Multiple Sclerosis Generations: From Diagnose & Adios to DMT to Crowdsource

Generations offer connection with those before us, with us and after us.

When age groups are categorized by generations, it’s interesting to see how birth year and world events influence life circumstances and outlooks. In the United States of America, the generally accepted generations include the Lost Generation, the Greatest Generation, the Silent Generation, the Baby Boomer Generation, Generation X, Millennials, Generation Z and Gen Alpha.  It occurred to me that people with Multiple Sclerosis could also be considered as living in other various generations depending on how old we were at first symptoms and diagnosis, the year we were diagnosed, and the understanding of MS and available treatments during early adulthood.  

I look at these differences and similarities not to segregate us, but to assess my own health, see where it can help me with my own journey, and consider how I can pay it forward for others. I see people older and diagnosed before me as farther along the MS path. I might not follow the same path, and I likely have more health care options than they had.  That said, I can see where their path seemingly led and learn from them.

I created the chart below that aligns the standard generations with three pivotal advancements in MS diagnosis, treatment and patient connection. Please don’t tune out yet, I promise to explain what it meant for me. By looking at the orange No or green Yes, it shows whether people in that generation had certain advancements available to them at age 20.  I chose age 20 to reflect when symptoms may have been present. While everyone is unique and experiences MS differently, it was a reasonable age for this purpose. 

There are many interesting MS facts in the Timeline – The History of Multiple Sclerosis. The three years and corresponding advancements I chose to include are:
  • 1981, the year MRI scans became a tool to view images of MS lesions, 
  • 1993 when the first MS disease-modifying therapy (DMT) was approved for use, and 
  • 2010 when Facebook established the option to create groups and online support communities became more commonly accessible.   
The Lost, Greatest and Silent Generations had none of the three advancements available to them when they were 20 years old.  Likely they lived in the “diagnose and adios” days when doctors might have known they had MS and told them, but they didn’t have any treatments to help them manage their MS.   Whether adios referred to goodbye or “to God” (as in you’re in God’s hands and there’s nothing they can do) is semantics. Either way, you’re on your own, and the doctor has done what they can.  Even worse were those not told they had MS, because some doctors believed a patient knowing they had an incurable disease was worse than not knowing. 

The Lost and Greatest Generations could be thought of as the “Diagnose & Adios Generation” or just the “Adios Generation” if not told they had MS. The youngest of these two generations would have been nearing 60 by the time MRIs were available to identify their lesion locations, and perhaps some of them benefited from that technology.  

I have and have had friends in the Silent Generation age group who lived with MS for many years and experienced disability by the time they were in their 50s and DMTs became available. They told me of participating in the lottery for early DMTs.  It wasn’t until I did research that I more fully understood what that meant.  

I’d known about the ABC drugs, and here’s an overview for those who might not. The three ABC drugs (Avonex®, Betaseron®, and Copaxone®) were approved between 1993-1996.  They were the first medications to help reduce the frequency and number of exacerbations a person with MS has, thereby delaying disease progression for those able to access the medication and for whom they helped.  

The first disease modifying medication was approved in 1993, and there wasn’t enough supply for all who wanted it. An article from the New York Times described the situation.  

“A computer lottery will be used to distribute a limited supply of a newly approved drug for multiple sclerosis, angering and saddening patients who might be helped by the therapy.  

“The arrangement may leave four out of five of the eligible sufferers unable to obtain treatment when the drug goes on the market in October. Doctors and ethicists called that a reasonable compromise.”

My friend was one of the lucky ones to be selected in the lottery. She began Betaseron® treatment and had positive results.  Currently 81 years old, she is of the Silent Generation. Timing for the medication’s availability benefited her and many others, and the subsequent approval of Copaxone® in 1995 and Avonex® in 1996 changed the disease course and prognosis for generations of people with MS to come. She and her peers could be thought of as the first of the “DMT Generation.” 

From MSAA’s page “Who Gets Multiple Sclerosis,” “Most people with MS experience their first symptoms and are diagnosed between the ages of 15 and 50, although individuals of any age may be diagnosed with MS.” It’s possible people in the Baby Boomer Generation may have had DMDs available at diagnosis. Those in Generation X are more likely to have had ABC medications available at time of diagnosis than any generation prior.   Please note that by saying these medications were available, I’m not saying people with MS had insurance, could afford medications, their doctor prescribed them or they chose to take them. Issues surrounding access, affordability and effectiveness are a huge conversation beyond what I’ll mention in this post. 

Millennials are more likely to only know a time when DMDs were available, and Generation Z were born into a world with DMD existence.   

I was diagnosed with MS in 2008, and at that time the prevalence of online patient communities was scarce. Patients Like Me originally started for patients with ALS in 2004, and they added a group for people with Multiple Sclerosis in 2007. I found them in 2010, and it was a terrific venue for learning, interacting and not feeling alone. Facebook groups started in 2010, and since then many groups with a myriad of MS interests have been created. I’ve found them helpful as they increase opportunities for connection, information and mutual support.  

I used to look to my elders for insight.  Then I added peers similar in age to those I sought advice and support. Now I look to the youth as well. It seems to me it can be thought of as a “Crowdsource Generation,” where we share information, learn from each other, support and apply what make sense for us.  

I look forward to ongoing medical advancements to see what the next MS Generation might be. Hopefully someday there will be a “Cured of MS Generation” and ultimately a “Post MS Eradication Generation.” I have hope.

“Multiple Sclerosis Drug to Be Dispensed by Lottery” The New York Times, September 2, 1993, Section A, Page 15, https://www.nytimes.com/1993/09/02/us/multiple-sclerosis-drug-to-be-dispensed-by-lottery.html 

“Who Gets Multiple Sclerosis.” mymsaa.org, May 31, 2022, https://mymsaa.org/ms-information/overview/who-gets-ms/ 

“PatientsLikeMe Update: May 2007.” Blog.patientslikeme.com, May 2007, https://blog.patientslikeme.com/health-conditions/als/patientslikeme-update-may-2007/ 

“Timeline – The History of Multiple Sclerosis.” mymsaa.org, Feb 18, 2016, https://mymsaa.org/publications/motivator/summer-fall12/cover-story/timeline

“A Brief History of Facebook, Its Major Milestones” by Christopher McFadden, Interesting Engineering, July 7, 2020, https://interestingengineering.com/culture/history-of-facebook