Online systems, including telehealth, are imperative to maintaining optimal care for patients with multiple sclerosis (MS) during the coronavirus disease 2019 (COVID-19) pandemic, said June Halper, MSN, APN-C, MSCN, FAAN, chief executive officer, Consortium of Multiple Sclerosis Centers, in an interview with The American Journal of Managed Care® (AJMC®).
Online systems, including telehealth, are imperative to maintaining optimal care for patients with multiple sclerosis (MS) during the coronavirus disease 2019 (COVID-19) pandemic, said June Halper, MSN, APN-C, MSCN, FAAN, chief executive officer, Consortium of Multiple Sclerosis Centers in an interview with The American Journal of Managed Care® (AJMC®). Here, Halper answers some questions individuals with the disease might have about COVID-19. The interview has been lightly edited for clarity.
AJMC®: Can you tell me a little bit about your work?
Halper: I'm a nurse practitioner but I have been working in MS since 1978. Now I'm the CEO of The Consortium of MS Centers, which is an organization of MS centers all over North America. Our mantra represents a team approach to MS. The neurologist, the nurse, the pharmacist, the counselor, we have specialists, and of course patients and families are the center of the whole model. We provide education, advocacy, and training to the young generation of new professionals coming into the field. Of course, right now, we're pretty heavily impacted by this virus because we're dealing with patients who have a chronic illness, on top of which are living with the risk of pretty-serious, life threatening infection.
Halper: I think we hit over 100 patients. It's a clinician-driven registry. If you go to the site you can see the latest counts... We hope out of all this terrible terror that we might learn a lot about MS when it's confronted with another infection. MS is not life threatening. Looking at the data, we have a total of 107 [cases reported] which is not bad in terms of data collecting...We're getting some pretty interesting data. Those are summary data though. We're going to probably, hopefully, do some more research and be able to drill down a little bit on those numbers. If you want to go to COViMS.org, you can see the data as it's changing.
AJMC®: Have there been any significant disruptions in the supply chain of commonly used medications for MS?
Halper: As far as I know, I've heard no problems with the disease-modifying therapies. What I have heard is that patients are having problems picking up their other drugs. People with MS, many of them are on polypharmacy drugs that control symptoms, maybe treat depression, bladder problems, and those sometimes have to be picked up at a pharmacy. Now with the restrictions with masks and social distancing, that means at pharmacies like CVS, you might have to wait on line, and that's not a great idea. I think more in-person delivery has become a challenge because of the social distancing, etc. But, as far as I know, the specialty pharmacies are delivering as they normally would, unless patients go into a pharmacy. In other words, if specialty pharmacies are sending it to the local pharmacy, there may be some interruption as well. At my pharmacy, for example, you can't go in there, you have to call ahead and they'll bring what you want out to you. I'm sure that there are interruptions, there's no question in my mind.
AJMC®: Have you heard from any clinicians about other challenges in trying to deliver care to individuals since the outbreak beagn?
Halper: Most of outpatient MS centers in fact, across the board —I just had a call last night with about 15 other nurses—they're not seeing patients unless they are real, real emergencies. Most care now is being given by telehealth, over the phone, or via Skype. As a matter of fact, I had an earache last week and I had my iPhone. I called the doctor's office. He called me back on my iPhone and we Facetimed. Most MS centers are not seeing patients live unless it's an absolute emergency. Telehealth is now becoming much more valuable. But you can't examine a patient as thoroughly as you would in an office. On the other hand, do you want to? Telehealth has proven to be extremely valuable. Last year at our annual meeting, we actually had a session on telehealth. Dr. Gabriel Pardo gave us a session and in a way, we were sort of prepared because a number of centers now are doing things remotely. You don't want to bring patients into a hospital or an emergency room in this time of year with what's going on.
AJMC®: Individuals with MS who do take disease-modifying therapies may become immunocompromised, which puts them at a greater risk of experiencing complications from COVID-19. What would you tell patients who may be concerned?
Halper: No, not necessarily. There are only certain drugs, for instance Copaxone [glatirmer acetate]; the earlier drugs do not immunocompromise patients. There are only several drugs that may have some problems, [if they] deplete B cells. B cells are the ones that carry antibodies. I know in a couple of cases [providers have] delayed it. The drugs I'm referring to are Ocrevus [ocerlizumab], and natalizumab or Tysabri, Those are given by infusion. I know for a fact that a lot of neurologists are delaying the follow-up, which normally you do it every 4 weeks for Tysabri and every 6 months for Ocrevus. Many of the practices are delaying the infusions. The daily pills do not seem to be affected and I don't think anybody is stopping them. But again, this is a clinician-driven decision. It's based on the patient's history and disease course. I think that's something that's not dictated by a normal recipe, each clinician has to make their own decisions. Really, most of the drugs that the patients are taking do not compromise their immune systems. It's called disease-modifying therapy because it's modifying the immune system. This is not the same as cancer, where a patient's immune system is severely affected because of cancer. This is a different circumstance. Again, it has to be individually determined by the patient, the patient's course, and the clinician's decision making.
AJMC®: Depression and anxiety are common in patients with MS and fatigue is also a dominant symptom. How have patients with MS fared under new social distancing guidelines?
Halper: Again, online systems have absolutely taken on the role of wellness and wellness care. I have a friend of mine, Megan Weigal, who actually runs a weekly yoga program for MS called oMS Yoga. I can't tell you how many websites, how many podcasts have been coming out, not just for MS but of course in general. A lot of people have taken on all kinds of online acAlso, sounds ltivities. Television has turned out to be amazing because it keeps people up to date. The MS Society has done a lot of things, we've done weekly lectures with the Society. All the organizations have come through, to try to keep people with MS involved and informed. As of now, obviously, it's hard today to reach into everyone's home, but there's a huge effort out there to keep people's morale up, and to keep them in touch. I think people understand the importance of social isolation at this point and yet they're looking to reassure and educate, and that is quite available online.
AJMC®: Is there anything else that you'd like to share or any final thoughts you have?
Halper: The only thing I'd like to share is, thank God for researchers, thank God for people like Governor Cuomo and Governor Murphy who are taking every precaution to keep us all safe and I just hope this will be over with sooner than later. People with MS are facing significant additional challenges and we're doing the best we can to try to help them remain active and informed and well.