The Nature and Cost of Multiple Sclerosis

Peter L. Salgo, MD: The diagnosis of multiple sclerosis [MS] can elicit frightening images of a terrible, challenging future with bad life-changing events. It’s important as providers that we understand all of the treatment options available for patients to inform and guide patients in making the best decisions regarding disease-modifying medications. Early and ongoing treatment with the US Food and Drug Administration, or FDA, approved therapy can make a difference for people with multiple sclerosis. This is as opposed to what I learned in medical school so many years ago.

I’m Dr Peter Salgo and today I’m joined by a panel of experts in multiple sclerosis. Dr Patricia Coyle, professor and interim chair of neurology, as well as director of the Multiple Sclerosis Comprehensive Care Center at Stony Brook University in Stony Brook, New York. Dr Thomas Leist, director of the Comprehensive Multiple Sclerosis Center at Thomas Jefferson University in Philadelphia, Pennsylvania. And Dr Maria Lopes, chief medical officer at AMC Health in New York, New York. Thanks so much everybody for being here. We’ve got a lot to discuss, so let’s launch into it. Somebody help us out and start by defining multiple sclerosis. It’s always good to get things on the table.

Patricia K. Coyle, MD, FAAN, FANA: MS is the major acquired central nervous system [CNS] disease of young adults short of trauma. It involves the CNS, the brain, the spinal cord, and the optic nerve.

Peter L. Salgo, MD: Can you stop for a second. You say the major.

Patricia K. Coyle, MD, FAAN, FANA: Yes.

Peter L. Salgo, MD: When you say “major,” you mean the most common?

Patricia K. Coyle, MD, FAAN, FANA: Yes, short of trauma.

Peter L. Salgo, MD: Because when I was in medical school, we thought this was a rare disease.

Patricia K. Coyle, MD, FAAN, FANA: No, close to a million Americans are diagnosed with MS, and several million worldwide. And remember, this is very variable disease. There are people who pathologically have the disease and are not showing clinical symptoms of it. That may account for 25% of MS.

Peter L. Salgo, MD: Many folks, a lot of folks. I had no idea it was that big initially.

Patricia K. Coyle, MD, FAAN, FANA: It is.

Peter L. Salgo, MD: You knew this, right, because you’re paying for it.

Maria Lopes, MD, MS: Well, MS indeed is a very expensive disease. When you look at it, it’s affecting primarily women, but also males, in the prime of their lives. The impact is on not only healthcare utilization but quality of life, employability, and family dynamics.

Peter L. Salgo, MD: That’s a lot of money.

Maria Lopes, MD, MS: And the uncertainty of the course the disease will take.

Peter L. Salgo, MD: All right. What is the pathophysiology here of MS?

Thomas P. Leist, MD, PhD: Multiple sclerosis is an autoimmune disease, meaning one’s own immune system is fighting against the body. And the target is the central nervous system. We have much to learn about the autoimmunity and the immune response because in recent years, we have also recognized that while in the time when you and I went to medical school….

Peter L. Salgo, MD: With the pterodactyls flying through the air back then.

Thomas P. Leist, MD, PhD: In a certain way at that time we were thinking of multiple sclerosis largely as a white matter disease. Now it’s clearly recognized that pathophysiologically, the more important part is probably also the gray matter pathology.

Peter L. Salgo, MD: Is that right? Again, what I learned is that it was a demyelinating disease in the white matter and the rest was OK. Not so?

Thomas P. Leist, MD, PhD: No. The gray matter is significantly impacted, and it appears that the impact on the gray matter is independent of white matter injury.

Peter L. Salgo, MD: Let me see if I understand the impact then. If it was white matter, I’m talking about conduction and muscle issues. But gray matter, it seems to me, might impact cognition and all sorts of other more subtle issues, yes?

Thomas P. Leist, MD, PhD: Well if you equate the gray matter with the thinking or the computing part of the brain, and the white matter is largely the transmitting part, then I think your description is correct.

Peter L. Salgo, MD: So now, this disease sounds even worse. Not that it is worse, but it was always this bad I’m assuming. But both conduction and gray matter, which is computing and associating activity, they’re all affected.

Thomas P. Leist, MD, PhD: You have to keep in mind that this is then a whole brain disease. And it affects essentially the functioning of the individual, and multiple sclerosis is not a T-shirt that says, “One size fits all.” There is high variability between individuals. You also need to keep in mind—and that’s perhaps related to what we discussed regarding how many people have MS—the number of patients with MS is going up because life expectancy of MS patients is approaching that of the normal population. And so from that point of view, there are many more individuals. In fact, in the United States the average patient with multiple sclerosis is now in their 50s.

Peter L. Salgo, MD: Can we parse this out a little bit? It was interesting to me that you say the number of people with MS is going up. But my first thought was, the incidence of the disease is going up. Is that true too? Is it holding steady in terms of the number of new cases per year?

Patricia K. Coyle, MD, FAAN, FANA: MS is increasing among women. That’s pretty well documented. So the disease is actually increasing. And I just wanted to mention, I think important components are that this is a CNS inflammatory disease, but this is a CNS neurodegenerative disease. And that’s where the gray matter in particular comes in. Axons, neurons, and synapses are damaged. And when we talk about the different phenotypes, this seems to underlie progressive MS.

Peter L. Salgo, MD: We’re going to get to that, but there’s a huge economic burden here. I alluded to it earlier. We have people who, in the more productive portions, or what should have been the more productive portions of their lives, suddenly have a neurologic injury and they have muscle disease, they have motor disease, cognition disease. What is the economic impact on the nation?

Maria Lopes, MD, MS: Well, we think of it in terms of the direct costs, which are easier perhaps to measure. The direct costs are typically what a health plan may spend in terms of disease modifying therapies, in terms of the polypharmacy. These patients are often on multiple drugs. As they lose function, their employability and productivity start to decrease. And so with that comes indirect costs. The impact on family, on dynamics. Many of these patients also move on to Medicaid.

And so back to the stress, the anxiety, the fatigue, and not only medications used for this, but also mental health, right? As we think about depression, the prevalence of depression can be quite high in this population. Many of these patients also go underdiagnosed or undiagnosed. So the impact overall is quite high. And with a growing prevalence, it’s obviously an exciting time for MS as we link this to more treatment options, but definitely a very high cost disease.

Patricia K. Coyle, MD, FAAN, FANA: The National MS Society has estimated the care of MS patients annually costs about $70,000, and in total probably $28 billion a year.

Peter L. Salgo, MD: And that’s federal money, those “B” numbers you usually hear from the government. That’s an expensive disease.