Financial Burden for Patients Diagnosed with MS


An expert panel discusses cost burden associated with the treatment of MS.

Ryan Haumschild, PharmD, MS, MBA: We talked about quality of life, and we want to anchor on that, but there’s also direct cost that always comes into play. From a managed care perspective, Dana, I think you’re going to be our resident expert because you have a lot of experience here. When we’re quantifying treatment, there’s obviously the pharmacy benefit and the medication costs that are involved, but there’s also medical cost, health care resource utilization, and a lot of indirect costs that complement that. Could you characterize for us what the financial impact on patients with multiple sclerosis [MS] has on the health care system, from the direct cost standpoint and even indirect cost as well?

Dana McCormick, RPh: If you think about patients who get diagnosed, with the uncertainty they have with what their prognosis is going to be and how their life is going to be, and then add the expense of care, the direct and indirect costs associated with the disease, it’s a pretty high burden on those patients. There is a fair amount of data that have been published about the indirect and direct costs of MS. Last year there was a great publication that had some recent data and suggests that across the United States, the total cost for MS is about $85 million. You can break that into about $65 million in direct costs in $23 million in indirect costs. Indirect costs are those things like the cost of decreased mobility, forced retirement, and changing a home structure so that a person living with MS can still reside in their home. Those types of things, absenteeism and presenteeism, are the things we think about for indirect costs. But then if you take that down to a patient and their caregiver or their family cost, it’s about $88,000 a year, and about $65,000 of that is direct cost. It’s great that a majority of that is spent on outpatient medications that are providing great relief and delaying progression for patients.

The other 2 bigger buckets are the medical-infused clinic types of products and then physician office visits, whether it is to their neurologist who’s helping them maintain their MS, or whether it be other physicians who are helping maintain concomitant issues as well. Then the rest of that…broken out is about $65,000 for direct and about $23,000 for indirect costs. Those 2 buckets ended up being the loss of wages due to early death. That’s pretty significant if you think about that. Then the rest was a lot of absentee and presenteeism as well. This study also suggested that by 2039 there would be about $103 billion in costs to the United States for the treatment and care of MS, which is pretty significant.

Ryan Haumschild, PharmD, MS, MBA: You did a great job characterizing that total cost of care because I think there are so many different aspects to consider. Even sometimes from the managed care perspective, we might see pharmacy benefit and medical benefit in separate buckets, not connecting the two, but they are drawn together in addition to the impact on the patient of their quality of life, their caregiver support, and lost wages. Thank you for that input.

Mitzi Joi Williams, MD FAAN: Can I add one thing to speak to that cost to the patient? I will never forget one of my patients who was diagnosed. They came to see me sometime after and said when they got diagnosed, the first thing they said to themselves was, “I cannot afford to have this disease. I just can’t afford it.” It led that person to get lost out of the system because they were like, “I can’t pay for the MRIs, the medication, and the visits.” Unfortunately, they had disability related to that because they were just like, “I can’t afford it so I’m just going to ignore it until I absolutely have to.”

Dana McCormick, RPh: The $88,000 at the patient and caregiver level is dependent on the disease severity and their type of insurance. Other factors play into that, $88,000 is just an average. For people who have more severe disease, it could be and probably is even higher.

Ryan Haumschild, PharmD, MS, MBA: When we’re evaluating patients, I think we also want to look at comorbidities and mental well-being. One of the validated scales I know clinicians are utilizing is the PHQ-9 [Patient Health Questionnaire-9 items], which focuses on mental well-being as a whole. Dr Williams, can you describe to us how you’re evaluating different comorbidities, and specifically, how you’re using the PHQ-9 scale with your patients?

Mitzi Joi Williams, MD FAAN: Absolutely. Comorbidities have become extremely important because we know some things can affect the course of MS, such as obesity, as well as smoking, and other diseases can potentially worsen the course of disease. Depression is one that is extremely important for us to diagnose because often the symptoms overlap with symptoms of multiple sclerosis. When we’re trying to make decisions about treatment or how to best approach MS, we have to make sure we are accounting for comorbidities such as depression, which can overlap or worsen some of those symptoms. PHQ-9 is a scale that I have used in clinical practice along with cognitive testing to help determine if depression may be playing a role in some of the symptomatology we’re seeing in patients. And it’s been very helpful because, again, it is an objective scale, and sometimes people may be resistant to having a diagnosis or a label of depression. Seeing that scale can help them to conceptualize that they are having some issues that need to be addressed and can also open the conversation for us to talk about seeking mental health services, or even taking medications if that is something that’s warranted.

Ryan Haumschild, PharmD, MS, MBA: Excellent. Thank you.

Transcript edited for clarity.

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