• Center on Health Equity and Access
  • Clinical
  • Health Care Cost
  • Health Care Delivery
  • Insurance
  • Policy
  • Technology
  • Value-Based Care

Patient Journey in MS


Thomas Leist, MD describes the epidemiology of MS and the journey of patients as the disease progresses.

Neil Minkoff, MD: Dr Leist, you run a major comprehensive multiple sclerosis [MS] center in a major medical center in a major urban area. You’re dealing with a number of payers, but also a very large and diverse patient population. How do you take a look at this? In your practice, you have a certain patient journey. How do you interact with some of these different pressures around guiding a patient through their journey?

Thomas Leist, MD: It’s important to keep in mind that our view of multiple sclerosis over the years has changed and significantly affected how we would like to guide a patient’s journey once the patient has been identified with the condition of multiple sclerosis. I often refer to this as the window of opportunity, so that they start the patient early in their condition. Keep in mind that 75% of the patients are women. The patient has a window of opportunity, where if we intervene most effectively, they can probably have a manageable disease. You and Dr Lopes made very important points. Both of you made the point that MS is heterogeneous. There are patients with less involved disease presentation and patients who present with very significantly involved disease at initial clinical presentation. Dr Okuda is obviously also keenly aware that there is a prodromal phase of multiple sclerosis, where the patient has the condition, but it’s not yet apparent clinically.

When these patients come to the attention of a neurologist, it is important that there is risk apportion, and patients with very minimal disease may be treated differently and have the choice of a different mode of action than a patient who already presents with markers of significant likelihood for disease progression at initial interaction with an MS doctor or a neurologist. Thirdly, we want to reach toward the highest efficacy medications we can give the patient to keep them stable, while for somebody else with optic neuritis, or 1 or 2 lesions on the brain MRI, there are potentially other considerations we are bringing into the fray. It is also important to note that while we traditionally thought of multiple sclerosis as a condition that affects individuals of northern European extraction, it has become absolutely clear that women of African American descent probably share a higher risk of having multiple sclerosis than Caucasian women. It’s very important to note that in minorities or individuals of mixed ethnic origin, the disease is very often more aggressive.

Where this becomes important is the social determinants of health, because very often these individuals are put into plans that are a little more restrictive. They may also be on Medicaid plans. I always find it interesting that the likelihood of a patient on Medicaid being continuously treated with MS medication for 5 years is about 20%. If you keep these numbers in mind—worse disease, less likely to be continuously on medication—you also start to see opportunities where both the neurological provider and the plans can potentially affect the outcome of the patients very significantly.

Something we haven’t mentioned is that the typical patient with multiple sclerosis in the United States is in her mid-50s and on her fourth medication. The great majority of patients are much older than we think about. That’s where things Dr Okuda mentioned come in. Is there ever a time for deescalating the disease? Is there a time for evaluating what we are doing with this particular patient? But we are focusing on the first time. We are focusing on the 10,000 to 20,000 patients who are diagnosed with MS per year. I gave you a large variance—10,000 to 20,000 newly diagnosed patients—because we don’t have a national census. Our typical patient is somebody who’s had MS for quite some time. Aging is also very important in the consideration of somebody with MS. Aging plus MS has other factors that need to be considered. If you think about patients who have a chronic disease condition, they’re already burdened by their chronic disease. They may no longer go to an internist, or go less frequently, so their diabetes is less well managed, for example. Diabetes less well managed means MS is less well managed because they affect each other. We need to look at the long-term management of these chronic diseases through a different lens.

Transcript edited for clarity.

Related Videos
video 10  - "Developing Practical Solutions to Improve Cardiovascular Care"
video 10  - "Developing Practical Solutions to Improve Cardiovascular Care"
dr mitzi joi williams
dr krystyn van vliet
video 10  - "Developing Practical Solutions to Improve Cardiovascular Care"
Video 9 - "Impact of Novel Medications and Out-Of-Pocket Costs in Managing Cardiovascular Disease"
Patrick Vermersch, MD, PhD
Video 6 - "Community Partnership: Increasing Public Awareness of CVD"
Video 6 - "Community Partnership: Increasing Public Awareness of CVD"
Related Content
© 2024 MJH Life Sciences
All rights reserved.