Why Aren't We Treating with the Most Effective Medications Early On?
Last updated: February 2023
When I was first diagnosed with multiple sclerosis over 20 years ago, I started treatment as soon as I could. My original disease-modifying therapy was Avonex. Over the years, I had multiple relapses and then switched to Copaxone for a while. These are both common “starter medications” for people with MS. To this day, they are still on the front line of MS treatment, often prescribed to the newly diagnosed.
Prescribed a stronger medication after many relapses
Despite taking these medications, I still succumbed to many exacerbations - granted, not nearly as many as I might have without them. Eventually, all of those relapses added up, and I landed on disability. It was at this time, after having so many exacerbations in my past, that I was finally prescribed a stronger medication, one that, as of this writing, has halted my disease progression. As I sit at home, languishing on disability at the age of 42, I’m left to wonder: Why are we not prescribing these more effective medications sooner? Turns out, I’m not alone in that sentiment.
Highly Effective Treatments (HETs)
Not all treatments are the same. There are currently a set of medications that are far more effective than others. The medications that fall into this group, known as HETs, are:1
Safety concerns about PML
These medications generally have more success in slowing disease progression when compared to other commonly prescribed treatments. If they are so effective, why aren’t they prescribed earlier in the course of one’s disease? Many people point to concerns about PML (if you are unfamiliar with PML, you can read more here). However, in the case of Tysabri, as time has gone on and the dangers of PML have been studied, researchers have discovered that those who are JC positive have only a 1 in 10,000 chance of acquiring it (and those chances can be decreased even more by extending the interval between infusions).2
Weighing the risks
People on medications with a risk of PML are (or should be) monitored; if done properly, the risk is extremely low. While that may seem risky to some, what about the risk of further damage from MS? While it’s easy to point to PML as this boogeyman in the corner, people seldom concern themselves with the effect MS can have on life expectancy and quality of life. These newer more effective treatments are out there, but we are still prescribing older medications that have been proven less effective.
The benefits of starting early
Recent studies have shown that starting one of these Highly Effective Treatments early on can lead to less disability later in life. Quoting Dr. Robert Gross of the Rocky Mountain MS Center at the University of Colorado, it's “hard to believe we are still having this debate." There are "numerous studies, including head-to-head trials and large cohort studies, showing superiority of highly efficacious agents to older disease-modifying therapies of more limited efficacy, as well as better outcomes with early vs delayed use of high-efficacy therapy.”3
Studies looking at disability status
One such study looked at the Expanded Disability Status Scale (EDSS) and determined that the scores were significantly lower at 6 years into the disease when HETs where utilized early rather than later.4 Makes sense right? If several treatments have been identified as being more effective than others, when it comes to fighting the disease, doctors will have better results if they are utilizing one of them. The bottom line here is this: if you start with a highly effective treatment early in your disease course, you will have less disability later.
Why aren’t we doing this?
I get it. We live in a time, sadly, where people have become more afraid of medicine and science. People point to side effects and hyper-fixate on them without considering all of the benefits. In the United States, where they actually have TV commercials for medications, I can’t help but think that those ads sometimes backfire because of the part where side effects are listed off while someone is no doubt smiling or enjoying an activity. I tend to think that only increases the distrust of medications because it comes off as disingenuous. Also, early in the course of someone’s MS, they are usually suggested a medication after they’ve recovered from a relapse. Those early exacerbations may not seem that bad once they are over, meaning that greater potential side effects from treatment don’t seem worth it. I’m also left to wonder what impact insurance companies have on the matter as well.
My personal experience
I can tell you though, as someone who witnessed his grandfather pass due to complications from MS, and as someone who became disabled before he was 40 years of age because of the disease, I wish I could have opted for the most effective medication (had I been given the chance). Given what we know now, coupled with my own personal experience, I sincerely hope that more patients are given the chance to start these medications sooner. It sounds like more and more doctors are thinking that as well.
What does advocacy mean to you as someone living with multiple sclerosis? Please select all that apply: