From Kathleen Costello, MS, as told by Rachel Reiff Ellis
Drugs don’t work for people who don’t take them. It sounds oversimplified, but it’s true. And it’s not an MS-specific problem – it’s a challenge in any ongoing condition. The World Health Organization has estimated that only 50% of people with an ongoing illness continue on long-term therapy. This translates into hundreds of billions of dollars in additional healthcare costs each year.
If you don’t stick to your treatment for MS, there’s a chance the disease will continue unchecked. This means your immune system can continue to cause inflammation and damage in your central nervous system. And “Time is Brain”: if there is damage, it may be permanent – you may not get that feature back.
Research has consistently shown that disease-modifying MS drugs limit new clinical activity or flare-ups. They also slow progression and reduce the extent of new damage in the central nervous system. In short, not treating your condition can result in higher disease activity.
Studies show that the main reason people with MS don’t stick to their medication is that they simply forget to take it. There is a lot going on in life that can affect your ability to stick to your treatment.
Aside from remembering to take your medication, it’s important to believe that it will help you. A number of recent studies have shown that this buy-in is crucial. If you believe it will be effective, it motivates you to stick with it.
Other things that can affect your ability to take your medicine are side effects and costs. What is the actual out of pocket amount? Is it too much to manage? Sometimes the cost of medicines causes people to either ration their medicines or not take them at all.
You may also struggle if you don’t keep up with other types of MS treatment, such as physical or occupational therapy. These can help you get stronger and have better endurance, mobility, and flexibility. And regular physical activity can help support mental health and reduce fatigue. But if you don’t do these things consistently, you won’t reap the full benefits.
There have probably been more than 40,000 articles written on the subject of people following or not following their treatment plans. One thing we found is that proactive follow-up from vendors is helpful in getting people to start and continue with this. Results are better when providers simply check in and ask questions like, “Are you missing a dose of your medication?” or “Are you having any side effects?” If yes, which ones are they?
It’s also important that you and your provider work together. It is our job as a provider to explain the benefits of your medicine to you, as well as any side effects and risks, and to make sure you understand them. At the same time, it is important for us to understand what is important to you and what your concerns might be. Then this information can be used to make a joint decision. When we have common goals and a shared decision-making process, we have the best chance of success.
There are also practical things you can do to help you stay the course. Set reminders on your phone to let you know when it’s time for your medication. Engage loved ones to help you, but don’t nag you. Have them check in to ask if you took it. If not, what can they do to help you remember? The best way to stick to your plan is to address these things before they happen.
Most importantly, take responsibility for your health. Make sure you understand why your treatments are important. Don’t be afraid to voice your concerns before you begin. Putting you in the driver’s seat is probably the most important thing we can do as a provider to help you maintain your therapy and manage your MS.