Multiple Sclerosis Discovery -- Episode 7 with Dr. Daniel Kantor

[intro music]   Host – Dan Keller  Hello, and welcome to Episode Seven of Multiple Sclerosis Discovery, the podcast of the MS Discovery Forum. I’m your host, Dan Keller.   This week’s podcast features an interview with neurologist, Dr. Daniel Kantor. But to begin, here's a brief summary of some of the topics we’ve been covering on the MS Discovery Forum at msdiscovery.org.   At MSDF, we publish short, medium, and long articles. The longest News Synthesis articles cover an entire area of MS research. In one recent News Synthesis, science journalist Cynthia McKelvey, provided a primer on epigenetics. Epigenetic modifications are defined as any change to gene expression that happens without altering the  DNA sequence, and they could be the key to understanding heterogeneity in MS. Though the literature on the role of epigenetics in MS is growing, the field remains in its infancy and is not very well understood by many MS researchers and clinicians.   The medium-length articles we call New Findings, and they focus on either a single study or a small group of closely related studies along with comments from experts not directly involved in the studies. An excellent example by Science journalist, Mitch Leslie, explores an iPad app that may become a more convenient alternative to the much maligned Expanded Disability Status Scale, the EDSS. The app mimics four tests in the Multiple Sclerosis Functional Composite test. In an initial study, the app was sensitive enough to discern people with MS from healthy controls. If future trials are successful, it could allow patients to test themselves at home. It could also streamline data collection making the app useful to researchers as well. Our article includes a video demonstrating the app in action.   Then there are the News Briefs—short, meaty, and easy to digest summaries of noteworthy studies. For example, we reported on a large international survey that recorded a high statistical correlation between physical activity and health-related quality of life in MS patients. Another news brief looked at a study showing that evaluating a patient’s treatment preferences may play a key role in how long he or she will stick with a disease modifying treatment. We also reported on a study that described differences in overall brain atrophy between MS patients with oligoclonal bands and those lacking them.   Now for the interview. Dr. Daniel Kantor is a neurologist based at the Neurologique Foundation in Florida who is concerned with MS patients’ access to care. Dr. Kantor met with MSDF editor, Bob Finn, to discuss this issue.   Interviewer – Bob Finn Dr. Kantor, welcome   Interviewee – Daniel Kantor Thank you.   MSDF  In a recent article in MS Focus, you wrote that there are three types of access to care. What are they?   Dr. Kantor  Access to care means many things. Sometimes people think access to care just means access to medications. But access to care actually means access to physicians, access to medications, and then access to all the other diagnostics and other types of testing.   MSDF And how would you grade the US healthcare system on each of those as it relates to MS patients on each of those factors?   Dr. Kantor 2014 has been an important year with the Affordable Care Act as well as with other federal legislation as well as state legislation that's happened. Access to care for some patients has gotten better. People who maybe couldn't get insurance have been able to get it. For a lot of people, though, their access to care has either remained the same or actually their access has come down. What I mean by that is somebody who could see the physician of their choice in the past now, in 2014, has found it increasingly difficult to have access to physicians who are familiar with their care, familiar with their disease state, and familiar with the treatments that are out there.    MSDF You mentioned the Affordable Care Act. How is that specifically affecting access to treatments, access to physicians, access to diagnostics?   Dr. Kantor The Affordable Care Act did several things. One of the things that happened in the Affordable Care Act was the creation of these exchanges or the marketplace. So in states that either ran their own marketplace or that go with the federal marketplace, there are plans that are really "stripped down" insurance plans. And that means that there's more restricted networks – meaning the patient has less choice when it comes to who to see about their disease state – and there's also sometimes more restrictive choices in terms of the medications. So you have less physicians to offer them care, maybe not physicians who specialize in multiple sclerosis, and then that physician also has less choices of what to use. So as you can imagine, those things get compounded, and a patient may have a lot less access to care than they would have had otherwise. A simple example is a patient who did not have insurance and now has insurance. So a patient who didn't have insurance before they've gained access because now they carry a plastic insurance card. But while they may have been paying a reasonable sum to a physician to see them with a cash pay, now that physician is not offered on their health insurance plan. While they may have been part of a patient assistance program with many of the pharmaceutical manufacturers, they may or may not still be eligible for those same patient assistance programs. Meaning that a drug that may have been free to them – or very low priced – may be even more expensive to them now.    MSDF At MSDF, we recently ran an article about a study; it was a survey of neurologists. And the survey was looking at a number of different things. But the neurologists were saying that their patients were happy with fingolimod but not happy with their insurance companies giving them access to fingolimod. What other sorts of issues like that are arising in MS?   Dr. Kantor I think it's a perfect example. Prior to 1993, we had no disease-modifying therapies that were FDA approved. Since 1993, we now have 10 separate branded products. That's an amazing leap forward. Not many fields in medicine have seen that kind of increase and certainly not in the world of neurology. For many patients with other neurological conditions – like Huntington’s disease, amyotrophic lateral sclerosis or Lou Gehrig’s disease, even stroke – they look at MS, and they're jealous. They have seen such an increase in the amount of research. At the same time, however, we see a decrease in the practice. We see it being harder and harder to actually practice good MS clinical care. And so, while patients may have access in some ways to medications that have even more efficacy than our traditional medications, if a patient can't get their medication or has to go through many, many insurance hoops to get there, then that's not good for them.   MSDF What's the solution?   Dr. Kantor The solution really is the neurology, physician, nurse practitioner, and physician assistant and community working alongside the patient community together and engaging our colleagues in the managed care world. Like it or not, in America, healthcare is usually paid by somebody else. Most people do not walk into a hospital or walk into a doctor's office and write the payment themselves. They are either part of an employer group – where the employer is frankly handling much of the payment – or now they're part of exchanges, or they may even be part of a federal program like Medicare or a state program like Medicaid. So the client for the doctor is not really the patient. Our patients are our patient; and we have a Hippocratic Oath; and we have a long, long time of tradition of what we do for that physician/patient relationship. But it's not really a client relationship. That might be good/that might be bad, but it's the fact. In fact, for most practicing physicians, most practicing clinicians, our client is actually the insurance company. And so that means that there's some disconnect between what a patient might think they want and even what the physician might think they want for the patient and what the patient actually gets. So what we need to do, though, is engage these managed care organizations better in terms of recognizing that things like step edits, like prior authorizations those are here to stay. Sometimes some neurologists see them as so unethical that the real prior authorization should be the doctor's prescription. The fact is that that's not the case. And it's going to be very hard to change that system (9:26) unless the person who's actually paying is the actual patient. And so recognizing that managed care organizations are there to manage their medical costs we need to work better at giving them the tools they need. We think that there's no guidelines for treatment of MS; there actually are; there are many guidelines. Each state – if you look at the major insurance company in that state – their prior authorization and utilization management criteria that is the most commonly used guideline for multiple sclerosis in that state. So while we may think, as physicians, it doesn't exist, it does exist; it's just not being written by us. These are being written by pharmacists at either pharmacy benefit management companies or pharmacists at insurance companies, and they're deciding the fate of our patients. We need to take a more proactive stance and work together at developing guidelines that can make sense and that have also "outs". What I mean by that is even if you say that we have a treatment algorithm that works for most patients there's always going to be patients who for some reason or other you don't want to put them through that algorithm. An example may be if you're going to start a medicine that has a potentially high chance for a certain side effect – and you think from past experience that that patient may have that side effect because they've been on similar medications with a similar side effect – then you may not want to put them through that algorithm. You may want to say well they haven't failed the medicine yet, they haven't had an intolerable side effect from this medicine, but they've had from a similar medication. And that becomes a big issue, for example, in the use of one of the oral medication, dimethyl fumarate – also called BG-12 or by the brand name of Tecfidera – where we do see significant GI side effects. For a lot of people, we don't; for most people they tolerate it well. But if you have a patient who has already shown you on multiple other medications for different symptoms that they have sensitive stomach, then even without a diagnosis of Crohn’s disease or celiac, you still would probably want to avoid using that medication. So that's an example where it's not a contraindication listed on the label, it's not an absolute contraindication – and it may not even be considered a relative contraindication – but in the physicians' opinion that patient would have a negative outcome because of that medication that's where they shouldn't go through that algorithm in the same way.   MSDF How successful are you at convincing insurance companies of that?   Dr. Kantor I think we're getting increasingly successful. In 2009, we started a group which was at first called the SouthEastern MS Consortium, or seMSc, sort of like the SEC in football. And then Texas A&M entered the SEC in football so we expanded to the Southern MS Consortium. And we go from Texas east and Delaware south; we take the most liberal definition of the South. Now there are members from California, Minnesota, Pennsylvania, and we're actually about to relaunch and rebrand as the Medical Partnership for MS. And the idea was that prior to this MS neurologists, as well as nurse practitioners, physician assistants, speech therapists, physical and occupational therapists, case managers, social works didn't feel like they had a voice when it came to advocacy for their patients. They felt like the existing organizations didn't always reflect what they're going through and what their patients are going through with taking a proactive stance on some difficult issues but by engaging in a collegial way with the insurance companies. Instead of taking in a stance that every medication should be available for every single patient, we've taken a more reasoned approach of while that may be in an ideal world that's not the world we live in. And so, let's look at the different utilization criteria, utilization management criteria, of the different insurance companies and work with them on a one-by-one basis. So we have constant conversations with insurers throughout this country.   MSDF  Dr. Kantor, I thank you very much.   Dr. Kantor Thank you for having me.   [transition music]   Thank you for listening to Episode Seven of Multiple Sclerosis Discovery. This podcast was produced by the MS Discovery Forum, MSDF, the premier source of independent news and information on MS research. MSDF’s executive editor is Robert Finn. Msdiscovery.org is part of the non-profit Accelerated Cure Project for Multiple Sclerosis. Robert McBurney is our President and CEO, and Hollie Schmidt is vice president of scientific operations.    Msdiscovery.org aims to focus attention on what is known and not yet known about the causes of MS and related conditions, their pathological mechanisms, and potential ways to intervene. By communicating this information in a way that builds bridges among different disciplines, we hope to open new routes toward significant clinical advances.   We’re interested in your opinions. Please join the discussion on one of our online forums or send comments, criticisms, and suggestions to [email protected].   [outro music]