More Multiple Sclerosis Centers Are Needed To Overcome Challenges

Joseph Berger, MD, a professor of neurology at the Hospital of the University of Pennsylvania and the chief of the Multiple Sclerosis Division at the Perelman School of Medicine

Joseph Berger, MD

In multiple sclerosis (MS), there are a number of challenges faced by neurologists. Often, it seems, treating the disease is as complex as the disease itself, with a vast number of high-efficacy options and a need for more individualized treatment plans. On top of this, there remains an ongoing struggle for MS specialists as they are vastly outnumbered by the patients they treat.

For Joseph Berger, MD, a professor of neurology at the Hospital of the University of Pennsylvania and the chief of the Multiple Sclerosis Division at the Perelman School of Medicine, these all ring true. As he carries many years of experience treating the disease, Berger shared some of his insight into the challenges he’s seen emerge as the landscape of MS treatment has changed.

In an interview with NeurologyLive at the Americas Committee for Treatment and Research in MS (ACTRIMS) Forum in Dallas, Texas, Berger spoke to the need for resources for MS specialists and the importance of developing MS centers at institutions across the country.

What’s a challenge that you’ve experienced or observed in the MS space?

Joseph Berger, MD: MS is a very complex field and there are a limited number of people who really have the expertise to deal with the patient that has multiple sclerosis and deal with the drugs that we're now administering because these drugs, now, are increasingly complex. They carry a significant risk, many of them, and they require very significant monitoring and because of that MS is under-resourced, at least in the United States.

If you look at the American Academy of Neurology website and try to identify how many people are predominantly MS specialists, it's a little over 500 people in the United States. Perhaps there are another 1000 to 1200 neurologists that say, “I treat MS, but I also do other things,” and as a consequence, we don't have a sufficient number of MS specialists nor is the distribution appropriate for the care of the number of people that we have in our country. It is now estimated that there are close to a million individuals with MS in the United States, and the amount of time that's required in caring for these people—who you will often see 2, 3, or 4 times per year—is simply insufficient. Therefore, it cannot be done alone, and it can't be done by individuals that are dabblers in the field.

There was a time that that could happen. There was a time when it was simply a matter of diagnosis. We would be very reluctant to tell people in the ‘50s and ‘60s, and even in the early ‘70s—times when I began my practice—that they had MS because we had nothing to offer them. We'd say you'd have an inflammatory disease, and these symptoms that you have are likely to go away. We’d treat them with steroids, but there were really no effective therapies until the availability of interferon beta (Betaseron, Bayer) in the early 1990s. The panoply of drugs that we now have has really changed how we manage MS, and these people, as I mentioned earlier, have a lot of comorbidities and as a consequence, they are very time consuming and very resource intensive.

Is there anything that can be done to help address that challenge?

Among my beliefs is that we need to develop teams for the treatment of patients with MS. When I say teams, I'm talking about MS centers that are highly experienced in managing patients. That means you have to have neurologists with the expertise in knowing how to diagnose these patients, knowing how to administer the treatments, knowing what to monitor with respect to the treatments, and knowing when to change the treatments. Working with them, you have nurses and nurse practitioners because it's very difficult to do on your own; you have to have social workers—who among our patients doesn't have problems? Family problems and other issues such as obtaining health care insurance, maintaining a job, obtaining disability. It's very important that you’re integrated with a social work team and with physical therapy and occupational therapy, and with the pharmacy. Because of the nature of these drugs, there are often insurance hurdles to get patients started on them and it's very helpful to have individuals that can deal with the insurance company serve as the interface with the insurance companies in the appeals and getting people on the drugs quickly.

One of the things we learned at the University of Pennsylvania was that prior to having a specialty pharmacy associated with our MS clinic, sometimes it would take months after you wrote a prescription for the patient to get on a drug. It was through no fault of ours—it was simply the way the system worked. We had a specialty pharmacy, but when we integrated it into the MS clinic, we found that even in those individuals whose drugs were not being provided by our specialty pharmacy, the speed with which they got their drugs improved significantly. That helps enormously. Therefore, you really have to have a team. In order to have a team, you have to be adequately resourced, and this is an issue.