MS specialist Thomas Leist, MD provides insights into the challenges of evaluating and monitoring patients with MS.
Neil Minkoff, MD: Some of us who aren’t MS [multiple sclerosis] specialists but have, by necessity, some level of education started with relapse rate and annualized relapse rate and then moved to lesions, brain volume, and NEDA [no evidence of disease activity]. How are you using those in the clinic as opposed to how we might be using them to evaluate clinical literature and coverage determinations? That’s open to everybody, but that’s something that I’ve felt challenged by, trying to keep up with what the right outcome is for me to be looking at.
Thomas Leist, MD: Maybe I can jump in and mention 1 of the challenges that I agree exists. It’s the fact that we don’t really have markers by which we can characterize or group the patients when they come to us. It’s the clinical picture that’s there. I mentioned a young woman with 2 brain lesions and then optic neuritis, but an otherwise normal exam with good recovery vs a 25-year-old African American with many lesions on the brain MRI and spinal cord involvement. These are 2 completely different patients, and they require a different approach.
I also take into account what Maria Lopes said. Very often, patients can’t come to a neurologist, are not seen, or are seen by a general neurologist. At this point, neurology is probably at the same stage that internal medicine or oncology were 25, 30, or 40 years ago. My colleagues in an academic department don’t feel comfortable treating patients with MS because of the plethora of new medications that have become available. If I have a certain hesitancy within an academic department. You can imagine that this is not a negative statement. It’s just a challenge for a community neurologist who’s not exposed to this every week to keep up with all this.
We also need to recognize that the diagnosis of multiple sclerosis—why we have the diagnostic criteria—often represents a challenge for a practitioner. Sometimes the patient comes in with many different symptoms, but it isn’t MS, yet they’re ultimately diagnosed with multiple sclerosis. The initial encounter should be by a neurologist at the minimum, or the diagnosis should be by a neurologist—preferably by an MS specialist or a person with an MS specialty.
We need to recognize that this world has become more complex. The community neurologists who see perhaps 5, 10, or 15 patients with MS in their practice will not be familiar with all MS medications. They will have 1 or 2 that they like, and if the patient is beyond these 1 or 2, they will then be handed to an MS center or need to go somewhere else. What’s lost in that approach is the window of opportunity, because the patient may be on a medication that they shouldn’t be on for too long. What’s also lost in this approach is the certainty that the patient actually has multiple sclerosis. It’s not infrequent in my practice that I see somebody who has been treated for multiple sclerosis for many years, maybe even off the board of the major NGO [nongovernmental organization] on the route they were placed with such an indolent course of MS. Everything is true, except that the person has MS.
I understand that there’s an imbalance between skilled practitioners and the group of patients and the access, but that’s certainly something to focus on. If you’re already going to pay for a medication that’s very expensive, it may be important to have the patient evaluated. Once a patient has been diagnosed with MS, it’s very difficult to shake that diagnosis. It goes deep into a person’s experience. I agree with Maria, and that might not be such a popular statement. We have classes of medications, and you really need to look at what the individual medications bring, in addition to others in the same class, to see whether there’s at least some element of equivalency.
My biggest concern is that as the players change from year to year, it’s not necessarily upon the patient to have to change medications every year. When I’m starting a patient on new therapy, my goal is to choose the right medication that this patient can stay on for an extended period of time. I will then—with clinical exam, MRI, and history—evaluate this patient regularly. We have frequent contact. That’s also the place for physician extenders, nurse practitioners, and physician assistants. It’s good to bring them in so we can have frequent contact with the patients, not just once or twice a year. When we start a medication, contact them after 6 or 7 weeks to make sure they tolerate the medication and don’t have adverse effects, and help them be compliant with the medication.
One needs to keep in mind that once disability is established in a patient, we’re on the other side of the of the game. We have lost opportunity in that particular patient. I look, for example, at Pennsylvania, where insurers are now also covering the nursing home and home health benefits. The name of the insurance is the same as the 1 that covers medical benefits. Previously, somebody with progressive or worsening disability would have been handed to a government plan. Very often, the same insurer set as the medical insurance are now with Medicare and Medicaid, and also cover the nursing home and home health benefits. When we look at a population like patients with MS, you need to also keep in mind that keeping a patient away from disability is a long-term goal. With the changing characteristics of the payers, what they’re covering also becomes business decisions that may make sense.
I have a brief remark on MRIs. We now have recommendations from the AAN [American Academy of Neurology] and the National Multiple Sclerosis Society to do MRIs annually on patients. We have no recommendation for what the minimal quality standards are on MRIs. Very often, the lowest bidder gets the MRI scans done for a certain plan. Unfortunately, some of these MRI scans are closer to a Rorschach test than an actual tool that we can look at. We’ll probably need to work together on both the payer and provider sides to get quantitative analysis of MRIs to a level where the technical characteristics are such that we can compare MRIs, identify who’s stable, and identify who needs to be changing medications based on the MRIs so that we have more information in our office.
Transcript edited for clarity.