WEBVTT
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It's August 11th, and we have a lot to talk about.
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If you Google the term shared decision-making, you'll find it defined as a collaborative
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process where patients and clinicians work together to select tests,
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treatments, and care plans
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based on clinical evidence and the patient's personal values and goals.
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It relies on two main participants, the clinician who provides medical expertise
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while explaining risks and benefits, and the patient who shares their lifestyle
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preferences, values, and unique needs.
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But for some people living with MS, appointments with their neurologist are
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actually quite different because more than a few doctors still cling to an outdated
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model of healthcare delivery and patient care
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that puts the doctor on some sort of a pedestal,
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prescribing medications and issuing treatment plans as if they're edicts arriving
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with an accompanying lightning bolt from Mount Olympus.
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With access to information just a mouse click away, and Dr. ChatGPT answering
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more than 40,000 healthcare-related questions a day, people expect more.
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More details, more engagement, and more two-way communication from healthcare providers.
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You know, it seems logical that people are more likely to adhere to a treatment
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plan that they've helped to create.
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And patients who do participate in shared decision-making come away with this
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great feeling of empowerment as they become an active participant in their treatment
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instead of a passive receiver of that treatment.
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But shared decision-making isn't an automatic happy pill.
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It takes work, it takes discipline, and it takes a clear understanding of both
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the patient's and the clinician's roles,
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This week, Dr. Aliza Ben-Zacharia and Linda Lachman are joining me to share
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how shared decision-making has worked for them over the course of their long-time relationship.
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Dr. Ben-Zachariah is a nurse practitioner specializing in MS care in New York
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City, and Linda has lived with MS since being diagnosed in 2005.
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In a moment, we'll meet my guests, Dr. Elisa Ben-Zacharia and Linda Lackman.
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Shared decision-making occurs when a patient and their health care provider
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work together to make choices about care based on medical facts and the things
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that matter most to the patient.
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In shared decision-making, the patient is no longer a passive receiver of treatment.
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Instead, they become an active participant in their treatment,
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and that can make all the difference when it comes to adhering to that treatment
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plan and gaining a sense of empowerment when it comes to determining how you're
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going to manage living with MS.
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Joining me today are Dr. Elisa Ben-Zacharia and Linda Lachman.
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Dr. Ben-Zacharia is a nurse practitioner specializing in MS care in New York
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City, where she's also a full-time faculty member at Hunter College.
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Linda Lachman was the founder and president of Delphi Associates,
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a strategic marketing and market research firm.
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Linda's lived with MS since 2005, and Dr. Ben Zacharia has been Linda's MS
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healthcare provider for many years.
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Dr. Ben Zacharia, Linda, welcome to the podcast.
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Thank you.
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My first question is for both of you. You two have worked together for many years.
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So take us back to the early days of your clinical relationship.
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How did you first establish the baseline of trust needed for true shared decision-making?
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Dr. Ben-Zechariah, why don't we start with you?
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You're taking me so many years ago. I think it was probably immediately after,
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Linda was diagnosed, maybe early 2000, 2006. I think,
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as a nurse practitioner, I think perhaps my perspective is a bit different.
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And I think working together with a well-known team and a great team that I've learned so much from,
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I think getting to know patients, getting to know their family, listening to patients,
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having, of course, my spiel, too, as explaining the disease,
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the MS, as it was very new to Linda.
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And thinking about what is MS, what to perhaps expect from the disease,
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what is a relapse of MS. Back then, we dealt with many relapses because we didn't
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have as effective medication as we have now.
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Building that relationship, I've met Linda's husband.
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I haven't met Linda's son, but I know so much about Douglas that I think it's,
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I think it's becomes almost like a family, but I'm still the clinician.
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I'm still the person that guide the conversation.
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I'm still the person that explain about MS.
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I am the expert, but I think Linda had a lot to say, number one,
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from her point of view. What does MS mean to her?
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What do the symptoms mean to her, the sensory symptoms, the annoying right leg issues?
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So I think building that relationship, listening to each other.
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Me, again, as an expert in the field of MS, thinking about what is the best
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medication for Linda, working with her, thinking about the side effects,
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how to manage the side effects.
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And back then, of course, Linda was on an injectable on one of the platform medications.
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And I think troubleshooting the side effect, thinking about how to make life
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better, how to make quality of life good for people that we know the MS did
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not really have a cure and it's a chronic illness.
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And how can we overcome all different obstacles?
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So I think based on this relationship, each one of us, I guess, Linda, we earned trust.
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We had some very good trusting relationship, and I think that's what perhaps
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makes Linda stay in our practice and then join me in my independent private
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practice in New York City.
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So I think I can say all these, all different discussions about other issues
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too, about life, about New York City, about perhaps some politics.
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I think, but then again, going always back to the main thing,
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how can we make the life of any patients better dealing with MS,
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which is a chronic illness?
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Linda, what about you? How did you initially establish that baseline of trust
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that's needed for shared decision-making?
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Actually, not knowing I had the disease initially, when I was diagnosed,
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I went to a number of different places within the city.
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And at that time, there weren't many.
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So I was deciding based upon the doctors I met, what facilities were available,
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what they told me, basically, at which time
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I decided on Elisa Ben-Zakaria and Dr.
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Lublin, who were at Mount Sinai in New York, which was one of the premier MS centers at the time.
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And we took it from there is basically what happened. So
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it wasn't as maybe as hard a decision in that you didn't have that many to decide from 20 years ago.
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Linda, let me ask you, and maybe we should step back one step and instead of
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diving right in as we have, let me ask you, how do you define shared decision making?
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And what did Dr. Ben Zachariah do early on that signaled to you that your voice
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would be welcome in determining your care?
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Okay. I think shared decision-making in general means exchanging views,
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info, questions, et cetera, as a patient and as a provider.
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So it's the fact that the provider does not just talk and give you information,
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but you are part of the process, which up until I think very recently was not always done very often.
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And the fact that the center where Aliza was and where I initially started to
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get my care from was that way made it very important to me.
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It was also a center, a center where there were doctors, there were nurses,
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there were help in terms of nutritionists.
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There was a much larger approach to MS, not as one disease, but as a lifelong
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issue that you're going to have to make changes as life goes along, too.
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Dr. Ben Zacharia, as a nurse practitioner specializing in MS,
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you have deep clinical expertise.
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How do you mentally pivot during an appointment to ensure your specialized knowledge
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leaves room for Linda's expertise in her own body and lifestyle?
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I think that you learn it over time.
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I think in the beginning of my career, it wasn't probably intuitive because
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everyone learned the paternalistic approach. You know better. You are the expert in MS.
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You probably ought to tell patients what to do, how to do it,
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and et cetera, et cetera.
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So I think, but you learn over time that the best way is to allow a patient
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to voice and to be partner in the care because once.
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It's something that they think is appropriate and the right thing to do,
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the right choice for them is,
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they're more likely to do it. So I think you incorporate it together in the
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visit, in the follow-up visit.
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Sometimes it may be challenging. However, I think you try to start the visit
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by listening to patients because they come to see you.
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Any changes? What are your signs and symptoms? And you try to say,
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okay, let's perhaps do this. And thinking about, for example,
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if it's fatigue, which Linda often mentioned in the visit.
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So we try to see how can we manage it differently with non-pharmacological agents.
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That's something that's very important for Linda, for example.
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So I think you can do it in between. It's not that you leave room in the middle or in the end.
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It's a very good question. But I think you try to balance it out throughout the visit.
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You voice your things. You say, okay, my expertise is that we ought to do this
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and this And that perhaps includes some more exercise for the fatigue and build
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up some energy and then think about other things.
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So I think the main focus is to think about patients as partners throughout
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the visit and have some, and Linda just mentioned it, have exchange of opinion.
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Say, okay, and I think Linda respects the fact that I'm an expert in MS.
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She comes to see me because she would like to hear what I have to say.
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Same as we have done when we worked together with Dr. Lublin in the center.
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So I think patient commands to listen to us as experts, as you mentioned.
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But also would like to contribute to the discussion because they are fully partnered,
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fully active in that discussion.
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And I would say it's just, I don't know, I think it's sometimes hard to say
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how it comes to be in an action.
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It's just you say something and then the patient says something and Linda would
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say, okay, I think I ought to do this. And we come sometimes,
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You may compromise on certain things. You say, perhaps maybe wait on this medication.
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You're on so many other meds. Let's do something different.
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And I think Linda is always pro less medication rather than more.
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So I think it comes in between each moment of the visit.
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Now I think it's more intuitive to me that I think patients are my partners.
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They're almost equal partner. Although, again, I think we have the expertise,
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and I think we have to guide patients very often in the relation to the disease-modifying
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treatment for MS or symptom management of MS.
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But I think always to think that patients are an integral part of all the decisions
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that we make together in the center, hopefully to get the best outcome.
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It's gone on for so many years that, you know, you go to your doctor,
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your doctor knows what it is, and your doctor gives you their opinion.
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And I think the fact of sharing in terms of decision-making is relatively new.
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There have always been doctors, I guess, that felt that the patient had something to add.
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But there also have always been doctors who felt, you came to me,
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I'm the doctor, I'll tell you what to do.
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And I don't react well to that. So if I was in that kind of situation,
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I think I would look for another doctor.
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And I think some people do, especially since MS is a lifelong disease.
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You're going to be doing this for a long time. So you should feel comfortable
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in the situation to say what your issues are, what kinds of things you're experiencing
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that are different or that have just arisen.
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You have to feel, as I said, comfortable with your physician or your PA, whichever way.
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Linda, because MS symptoms can change and new disease-modifying therapies emerge,
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you've likely faced some treatment choices since 2005.
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Has there ever been a specific treatment or a lifestyle decision where you and
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Dr. Ben Zacharia didn't immediately see eye-to-eye?
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And if there has, how did it get resolved?
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Probably not. But I think I started with giving myself injections three times a week.
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I initially was having a problem with three times a week, and we had a discussion with Dr.
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Ben Zacharia, Dr. Lublin, et cetera, that it was too much for me to also
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be able to live my life with that much kind of medicine going in me on a weekly basis.
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And we resolved that issue and have resolved it over the years.
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But basically, I was lucky.
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They did always listen to me. They did always take my problems as well as my
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feelings about the subject into consideration, which I think is highly unusual.
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I hope it isn't unusual with a lifelong disease.
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Dr. Ben-Zacharia, I think you've actually started to answer my next question
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during our conversation.
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I'm curious, when you present treatment options to a patient who has lived with MS for over two decades,
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how do you frame the risks, the benefits, and the evidence-based data so that
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it's truly accessible and collaborative rather than simply prescriptive?
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I usually try to think about the disease-modifying treatment as categories.
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Because I think we have so many medications today, and it's exciting, although challenging.
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And I think we do have some biomarkers to fit patients into certain categories, but it's not.
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So we're not very, very close to precision medicine. But I think we're getting
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there. We have some new markers that can perhaps help us make decisions and guide patients.
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So when I presented the patient, I usually present it as categories.
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I do start with saying that there are some highly effective medications,
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and some medications have low effectiveness in MS.
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I start with the big pictures, and I try to see if patients are thinking about
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more the risks that are related to medications, disease-modifying treatment, or they are more.
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Thinking about the effectiveness, the efficacy as we talk in MS language.
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So I try to see what patients really are going towards, what their views of
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disease-modifying therapy and what their risk aversion or not aversion.
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So trying to really gauge patients.
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So first I start with the high efficacy, low efficacy, concerns that this medication
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have, trying to say the most...
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I guess, concerning side effects. I don't think at a visit you need to present
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all the side effects in the world of every medications.
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You will never find to finalize a visit if you'll do that.
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But so I do that as a first category. Then I go into the oral,
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the intravenous medications, and then I speak about the injectable.
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The injectable, I do separate between the platform that are available for many,
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many years and are fairly safe in MS. And then I separate the anti-CD20 casinta or fatumumab.
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So I try to talk to people, to patients about the categories,
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the risk associated with the categories.
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I try not to overwhelm patients.
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I sometimes do another visit to talk about it, to allow patients to think about
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it, unless there is an urgency of starting an immediately disease-modifying therapy.
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So I think it's important to give patients two pictures of what's available
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out there, some of the science and the evidence.
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I do speak briefly about the science and some of the studies that showed efficacy,
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and I give some numbers, percentage.
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I do say that some of these medications are not compared to each other, so it's hard to tell.
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Often, I start,
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any general overview, but to say honestly, if I, for example,
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think a patient will benefit from a high effectiveness of high efficacy drug,
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like an intravenous medications, I will limit the discussion perhaps,
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to two families or just to one and say this is my opinion.
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I think as an expert in MS, you ought to go on high efficacy.
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And I try to explain, this is related to the clinical presentations,
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your signs and symptoms that you came today to see me, and the findings on your films on the MRI.
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I can share with you the films if you'd like to see. I tell patients,
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most patients like to see the MRI. I explain the lesions on the MRI.
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So I will tell patients, I think you really will benefit from these medications.
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And if you'd like to hear about some others, in New York City,
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patients, to say, honestly, are very knowledgeable. They read.
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Sometimes they have misconception about the medication and the data,
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the scientific data of medication.
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So you need to just correct those misconceptions. But tell patients,
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I think you ought to go on high efficacy drug.