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How to Add an MPN Expert to Your Medical Team

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Published on June 1, 2020

Key Takeaways

  • With an MPN diagnosis, it’s important to develop a long-term relationship with a medical team you trust.
  • The COVID era has ushered in many treatment advances, some of which may become permanent, benefiting MPN patients.
  • A care partner can often be a great advocate for seeking out additional expert advice if the patient is uncomfortable taking that role. 

Patient Power Co-Founder Esther Schorr is joined by MPN patient advocate Julia Olff, and MPN expert Dr. Gail J. Roboz, for an in-depth conversation about how telemedicine, patient health portals and Internet resources are making it easier than ever to add a super-specialized MPN expert to your medical team. It is no longer necessary to choose between the community oncologist you love and the far away MPN expert in another city. You can have both. 

This program is sponsored by Incyte. These organizations have no editorial control, and Patient Power is solely responsible for program content.

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Transcript | How to Add an MPN Expert to Your Medical Team

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.

Esther Schorr:

Well, good morning, good afternoon, good evening to all of you. This is Esther Schorr from Patient Power, and I am very excited to be able to moderate our program today, that is the first in a series of MPN Patient Bridge programs sponsored by Incyte. Our sponsors have no control over the content, but we always thank them for their support toward educating patients and their loved ones.     

The discussion today centers on the value of, and the possible approach to pairing a local oncologist with an MPN specialist early in a patient's MPN journey. As with most rare conditions, a lot of local oncologists may not have encountered and treated patients diagnosed with PV, ET or myelofibrosis. So, patients really need to be careful to consider how to get the very best treatment available. This may mean bringing in an additional medical specialist. Our two guests are very well-equipped to discuss this and share how this can be done.

I want to welcome our two guests. First, Dr. Gail Roboz. Hi, Dr. Roboz. Good to see you. Dr. Roboz is the Director, Clinical and Translational Leukemia Programs, Professor of Medicine at the Weil Cornell Medicine New York Presbyterian Hospital. That is a mouthful. Did I get that right?

Dr. Roboz:

You did.

Esther Schorr:

Our other guest that we're glad to have is Julia Olff. Julia has been living with myelofibrosis since 2008 and progressed from essential thrombocythemia. Julia is a health educator, a wonderful patient advocate and a former hospital administrator at Memorial Sloan Kettering Cancer Center. Julia also knew that having a rare disease meant she needed to find a physician with substantial experience with the disease. While she had a lovely local oncologist, that oncologist had never treated a patient with myelofibrosis. That's what led Julia to search for a specialist, who ended up being Dr. Roboz. Welcome to you, Julia, welcome to you, Dr. Roboz.          

What I want to do is start with you, Julia. How about a quick background on your journey to MF? I know that it's been more than a decade of a journey. What happened when you were first diagnosed? Just tell us a little bit about how you ended up meeting with Dr. Roboz.

Julia Olff:

Well, thank you. I'll tell you the short version. Since I was diagnosed really relatively long ago, so much has changed in terms of the diseases and what physicians know about them—2007, 2008 was a very different time. As you mentioned, my background is in healthcare, and I was working in healthcare communications. At the time that I went from having an ET to an MF diagnosis, my boss who was an oncology social worker happened to be at ASH. I was literally on the phone with her telling her, "Gee, now it's myelofibrosis." Long story short, she, like I would have done, chatted with doctors in the room and got me in touch with Dr. Verstovsek. He at the time was leaving the New York area. I lived at the time in suburban New Jersey, and I still live in New Jersey. Long story short, Dr. Verstovsek recommended Dr. Roboz.        

I knew from the work that I had done—I apologize for the cats in the background making noise, that myelofibrosis was a rare condition that my oncologist, who I'd seen, who diagnosed me, didn't have a lot of experience at it. It was more theoretical or from past training, and that I needed someone who had a depth of knowledge. It was really important for me to find a specialist. I love Dr. Roboz and don't plan on ever leaving her, as we discussed.

Esther Schorr:

So, Julia, you had kind of a shortcut to finding Dr. Roboz, because you were at a medical convention, you were talking with Dr. Verstovsek. How does a patient who isn't in that mode of being that well-connected, how can they go about that kind of research to find a resource like Dr. Roboz?

Julia Olff:

I think thankfully now there are more organizations like Patient Power and other MPN-specific advocacy organizations that can provide that support. I actually am also a volunteer for The Leukemia & Lymphoma Society, and I talk to people who are newly diagnosed with an MPN and almost always end up talking with them about, in a delicate way, who are they seeing, have they considered reaching out to an MPN expert and that whether it's Patient Power's website, MPN Advocacy, MPN Research Foundation, The Leukemia & Lymphoma Society can all help them find, if not very close to them, can find an MPN expert in their region, who at least they can consult with to both get a really accurate diagnosis, but also set their treatment plan.

Esther Schorr:

Okay. There are a lot now of online resources that you can turn to if you really feel like that kind of relationship would be helpful. Dr. Roboz, is it reasonable for patients to reach out to you or other super specialists for second opinions like that, or to guide treatment, get into clinical trials and any of that? Is that a normal course of events for you?

Dr. Roboz:

It's so interesting. I live and practice in the weird planet of Manhattan, which I have to say these days is a particularly weird planet. I see it all. I have patients who come in with 3,000 pages from the Internet. They know what day I got married, which is useful, because they remind me sometimes of my anniversary which I forget. They know where my kids are in school, they know where I went to school, they know every single clinical trial that I've ever worked on, but I also have patients who have no background like that, who wander in because they were referred or they come into the emergency room.          

Again, I work in a large hospital where people will wander into the emergency room with a symptom and end up with this diagnosis. Whether or not a patient has a broad educational background and is doing a lot of research, and obviously Julia is in the know and is in the business, and she helps other people get to the right person. But you don't need to have that background. I think that there is an increasing realization among patients that it is totally fine, appropriate, market, not rude, not offensive to ask a doctor, "Hey, do you have other people like me? Is this a rare disease? Is this weird? Should I go to somebody or ask somebody who's treated a lot of this?" 

I can tell you that especially among older patients, there's often this worry that they're going to offend their doctor, or they're going to upset the doctor. I think helping patients understand that medicine is complicated, and that ultra-subspecialty is so much more common than it used to be. That it's totally reasonable to say to your doctor, "I love working with you. This is totally great, but this is such a rare disease. Do you think I could branch out to somebody, make sure there isn't something new or different that I need to know?" That is often a good step to ask the original doctor that question.

Esther Schorr:

How does a consultation like that work? Not just with the patient, but how does the threesome, let’s say, work? The connection between you, patient Julia or a patient X, and the local oncologists? Can you walk through what that looks like?

Dr. Roboz:

Absolutely. I've seen lots of different ways for this to work out, and they are all the paths work. Sometimes a patient will look online, look in a chat room, look for a name and just call or email. I get that all the time that somebody will call my office and say, "Hey, I saw one of your videos, or I saw you in an education program, or you got recommended by my friend’s boyfriend’s dog’s cat." That works. I say, "Fine, let me look at your records. Let me make sure that you're coming to the right doctor, because sometimes patients are quite confused about their diagnosis, and I don't want them to come in to me if they've got something I don't treat." That's one way in. Sometimes the treating physician will call me and say, "Hey, can I run a case by you?"          

I've got to tell you, I'm on speed dial with tons and tons of friends and colleagues all over the place, and they'll shoot me a note saying, "Listen, here's what I've got. Do you want to tell me what to do, and I can convey it to the patient? Should I have the patient come in?" Then depending on the circumstances, we work out a plan. Sometimes a patient might be hospitalized elsewhere. It may not be feasible for that travel to take place. So I can listen to the case, look at some records, make some recommendations and then if the patient gets better and wants to come in, they come in. One thing that I'll bring up right now, that's been very different, COVID hasn't brought us much good news. But, one thing that it did bring is stat telemedicine. From Tuesday to Wednesday, telemedicine consults became reasonable and feasible. 

They're glitchy sometimes, and especially for older patients, I got to tell you, it can take 40 minutes to figure out how to work on the video. But just being on a call, whether it's with or without video has become so reasonable and so doable, that I will absolutely say that from now through the future, it is going to be completely possible in a much easier manner, to get telephone and video consultations, which I think for patients across the country is going to be so useful, because you'll realize in that initial consultation by video or by phone, do I actually need to travel? Or maybe just this call can set things up with my local physician that we can work as a team that I get the medication I need, the treatment I need, and maybe I don't actually need to get on a plane.

Esther Schorr:

That sounds like that could have application too, if a patient say, is on a clinical trial, or they need to adjust their medication or get their medication, because we hear a lot of questions about—oh, my God, especially with the coronavirus—"Well, I'm in a clinical trial, but I don't feel comfortable traveling.” So am I making a leap of faith, that with telemedicine, some of those things can be worked out even long distance?"

Dr. Roboz:

It's a great point. As a leukemia and marrow failure doctor, I have to have a lot of optimism, so I'm always looking for that silver lining. I will tell you that one of the things that COVID brought was again, stat urgent changes in what is allowed and what isn't on clinical trials. Actually, I've been working very hard with major companies to retain some of the features that were permitted during the pandemic. For example, shipping of an oral drug or having a local doctor visit count as an investigational study visit, because it wasn't safe for the patient to travel.           

The patient would go into the regular doctor's office that might be down the road, and then I do a visit based on that visit. It was okay for a clinical trial. We've been able to have patients participate in their trials and continue getting the medications that we're helping them, whereas normally the answer to all of that would be, "No. You have to come in, you have to have a visit, you have to have the drug here." I don't want to overpromise and say, "Don't worry about it. You can do everything from the comfort of your living room," but it is absolutely the case, that the world has become much tighter. We can do those consults, we can see patients virtually, we can give advice without necessitating the travel, and we can facilitate clinical trials for patients even when travel is difficult.

I think that especially for the MPN community where there are many patients with complex diagnoses who do require additional opinions, they may require subspecialty opinions. Many of those patients have abnormal blood clots or other issues where we bring in additional specialists. We can connect a lot of that virtually and still have the patient not have to be fearful about traveling or deal with the potential expense and hassle of traveling, which is a major barrier.

Esther Schorr:

That may be the one and only silver lining to having a pandemic. It's very exciting. I'd like to get a little bit of your perspective, Julia, because you're like our test case for being able to make this kind of connection and create a triad that works. How has the local oncologist and super specialist relationship worked for you? Can you shed a little light on how that's worked for you in your situation?

Julia Olff:

Sure. I'll go back to the earlier phases of that. But just to piggyback on what Dr. Roboz was saying. I think that that's going to be so helpful, even if there's not a great distance. If you're not feeling well, although I'm sure clinically there are then reasons to be seen, but if you just have heavier fatigue than usual, I've had over the years symptoms that made it harder to get on the subway. So the thought of being able to have a telehealth visit, and I suspect my next visit coming up next month will be a telehealth visit with you. There are positives to that. But if I go back to when I started this two doctor relationship, I was living in suburban New Jersey, near New York, but yet it could be a two-hour drive at rush hour or a two-hour multi-train ride.

There was a lot to be said for getting treatment or blood counts in my local area. It was oftentimes I would see the local oncologists, they have blood work either routinely or for—something was changing. In those days, I would share my counts and experience with Dr. Roboz, and then she would dictate, "Yes, I think you should have phlebotomies. Yes, I think you need an ultrasound," and the local oncologist would arrange that. And this way, I'm driving 15 minutes, at the time, from my home, getting it done in a frankly, in some ways easier suburban environment, and that worked out well. While I have moved now to another part of New Jersey that's just across the river from New York, I will more likely see Dr. Roboz when things are safer to do so. That's been incredibly helpful for getting some of the treatments that don't need an expert to do. I didn't need an expert center to have the phlebotomy. I didn't need an expert center to necessarily have some basic blood work, that kind of thing.

Esther Schorr:

Okay. But if someone is say recently diagnosed, or there's a change in their situation where they feel like another opinion is needed, it sounds like the sooner that relationship is made with a sub-specialist, the better. I’m happy to have either of you comment on this, what would you advise other patients who feel like they need that expertise? When should they do it? Any suggestion about how to broach it with their local doctor?

Dr. Roboz:

I think it’s very important out of the gate to—you never want to be in a situation as a patient where you super trust one person, but you want them to just run the show and tell another doctor what to do. If you really don't have confidence or don't have a good relationship or don't have a good rapport with your treating physician, the dynamic of having an “expert call and tell somebody what to do,” that's tough. What you want to try to do is have confidence and some bonding with the treating physician, but with the understanding that there are certain sub-specialty areas that would be managed by the experts. I want to discourage people from having a situation where they feel that, for example, I or somebody else will manage everything. I will take care of everything, and I'm just going into this other office as a technician. That's not a valuable relationship, and I think it sets up problems.      

For that reason, out of the gate, I would say, have a sense of the person that you're dealing with. If that person seems like they would be very resistant to working within a team type of environment or working with someone else, or you don't really like how you're getting along, that's not going to get better when you introduce another person, honestly. I think we just have to be respectful that not everybody is as amenable to suggestions as other people, right?

Esther Schorr:

Does that mean then thinking about changing your local doctor. It sounds like a trust radar you have to have up to say, "I want to bring in this—I want to have a second wife."

Dr. Roboz:

Julia can comment on this, I feel like being open about it and saying to someone, "Look, I love working with you, I love your office, I want to come here, but I have a complicated thing. I read about this other doctor working on things. Can we all work together?" If the body language of the other doctor or the feeling of the patient is that it's awkward and not going to work, the patient's probably right. It's awkward and not going to work.         

I think that to your point of when do you get started on all of this, earlier is probably better, because then you're getting a plan in motion from the beginning. I have this new diagnosis, I've got tons of information, I'm trying to figure out what to do. That said, there are patients who will be in the middle of their care, who are 10 years in, who now have a problem and need a change. Well, that's okay. If there's a problem and you need a change, you've got to call somebody else in to potentially help. But the bonding and the managing of the sensitivities, you never want to treat somebody else that, "Well, you're just the—I'm treating you like the doc in the box," because nobody likes that.

I think it doesn't set things up therapeutically in a way that's going to be helpful for the patient. Julia, you tell me, what's your take on that?

Julia Olff:

Well, I appreciate your clarification. I don't think I was treating my physician that way in New Jersey, but I absolutely get where you're going with that. It was a very different time, because that's already 12, 13 years ago. I think the challenge though if you're a new patient, is figuring out—there's the bond in a relationship. I always talk about that and wanted to say that you need to have—you and I talk about—t's a long-term relationship. You have to be comfortable with your physician. That can vary from MPN expert to expert. I've met many of them, and I can tell style-wise they wouldn't be right for me. It's not that their knowledge isn't wonderful, but there's the rapport aspect and the trust aspect of it and the sense of caring.

But I think it's hard initially to figure out that relationship. In truth for me, a lot of it was based on those acute events that you mentioned. If all of a sudden I have to go to the hospital, which is what happened, I went to my local hospital—at a different time when health portals were just beginning, and it was challenging for the local hematologist-oncologist to know what was going on or the people in the ER. I would bring my health notebook with my labs Scotch-taped into it, so that I learned to tell the ER, doctor, "No, no, no, my white count is always high. I don't need antibiotics." That was an evolution. I guess today the positive is with the Internet, with portals, with signing when patients allow other physicians to see what is happening for you, that might make it easier to bridge that local doctor and MPN expert. I don't know that I have an absolute answer for that, I think it's a case-by-case basis.

Esther Schorr:

I'd like to also put in a plug for care partners if I may, that I can imagine this scenario where there is a patient who really realizes that they need this other expertise, but it's kind of like needing a good cop/bad cop. If the patient isn't comfortable introducing the prospect of a specialist that perhaps a spouse, a loved one, a concerned adult child could be the foil that says to the local doctor as the voice of the patient, "I'm concerned. I know you're taking great care of my loved one, but I'm listening to all of this, and it might be a good thing to get another opinion or another voice in this. Dr. Roboz, maybe that's really directed. Have you seen that work as another way to introduce this triad idea?

Dr. Roboz:

Again, I'm an optimist. Most doctors are curious, they're interested, most of us inherently don't love doing things that we're not super expert in. We like being experts in things, we like to know what we're doing, and we like to partner with people. I can tell you, I have absolutely no problem. I pick up the phone 50 times a day. What do you think of this? What do you think of this? So I think much of that in medicine is built in. I definitely think first and foremost, you've got to make sure in MPNs, that you really do have that expert advice, because it's complicated, the disease is complicated, there are shifts between diagnostic categories that are very important. So the first thing is not about necessarily having a new best friend, the first thing is, "I have a rare disease, rare diseases need expertise. I want to make sure that we are checking in with someone who has many, many patients with this." And I think that's going to work.

Then there's the next part though, that what about the ongoing aspect? Julia and I are totally bonded for all of these years. She can email me that her kids are driving her crazy. That's what we like, right? We like that. I think she and I are very much—I tend to be very close with patients. I love the long-term. I want to be involved. I want you to call me if there's a problem. And I think it's wonderful and that should be the goal, but I think patients have to almost divide that first, make sure that we know what's going on diagnostically. Are you getting the absolutely best medicine, best care? Are you on the right track? Then, if it really looks like, "Hey, not only did I like his or her advice, the MPN specialist, but I liked him or her, and I would like that person to be involved, then you create that involvement with the team, with the local physician. I do this all the time, and it works great.

A lot of times, it's a great opportunity for us, because we have a contact then with another doctor who might have other patients in the area. We want to make patients’ lives easier. It can all work, but you can separate it out into the, "I’ve got to get my diagnosis. I’ve got to get my treatment plan. I’ve got to figure out if I'm on the right track," and then, "Oh, do I want this doctor to actually be in on it for the future, and how do I negotiate that relationship?" That does have to be ongoing, because none of us wants a situation where we talk to someone and then four months later, without any communication at all, we get a, "What do you suggest about this?" It's hard to do that. We try, but if the sense is that there should be an ongoing relationship, we'll then make sure that we get some notes and make sure we can get to the portal. Let's have that telemedicine or other visit intermittently so that you can catch me up on what's going on, so that if there's a problem, we don't have to all of a sudden re-create history. I already know what's happening.

Esther Schorr:

Well, you're really talking about creating a long-term team, and they don't necessarily all work in the same office, and they don't necessarily all have the same expertise. That's what I'm taking from this. So, I just wanted to address one other thing in all of this. I could imagine that a patient who is looking to build this team, might have the concern about cost of bringing in a specialist. We've talked about telemedicine helping with distance or travel, but insurance issues. Can either of you talk about—somebody thinks that that's a barrier to establishing this other relationship. How would they approach this? What are resources that they can get answers to that from? Do they go to their local doctor? Do they talk to the specialists?

Dr. Roboz:

I can preach to it a little bit. I'm not, by far, an insurance expert, but I can say that people do have the sense that if you jump on the phone or if you jump on FaceTime type of thing, that there wouldn't be any cost associated with that. That's actually not reasonable, because from a medical consult point of view, all of the documentation and all of the recommendations and so forth have to be in line. There's nothing casual about this, right? We're chatting on the phone instead of in the office, but this is still an official medical consultation. Now in the COVID era, there have been massive, massive changes in what's permitted across different insurances for telehealth and for telephone consultations. For example, there had previously been very strict rules that you had to be in the same state with the doctor.      

Much of that was actually completely eased in order to allow doctors to jump in and help in the most needed areas. It's not completely clear what is going to be here for the future, but certainly all of the large medical establishments are under the impression that telemedicine is absolutely here to stay. What I would tell the patient is that they're going to get a prior authorization, and they're going to go through their insurance the exact same way. They should not be expecting necessarily that the cost would be different, because that telemedicine visit for many insurances is the same.        

It's considered the same as going into the office. So, I would definitely ask that question, and whatever financial barriers are related to co-pays for regular visit could apply to a telehealth visit. There are also charitable organizations that are trying really hard to help patients with those types of coverages. They can be reached out to whether it's LLS or some of the MPN foundations as well, but in the same way as if you had a copay for a consult. Normally, if you have a copay for a telehealth consult, they might be able to help you.

Esther Schorr:

So you just have to be able to ask the questions and find out what the resources are. Maybe just to wrap up all of what we've talked about, Julia, what are the steps that a patient should take? What's the general thing that they should do to engage with an MPN specialist and connect them with a local doctor? What are the key things that they should be doing?

Julia Olff:

When we met, we talked about finding an MPN specialist. That can be reaching out to an organization, many of which were just mentioned, and I know you'll share them on your website. That's something that you can do. Then there are also a little bit less reliable, but there are places, Facebook groups where patients may share the MPN expert that they're going to. That's readily available online. You may need to then, as Dr. Roboz was talking about, get records together and find out if you do schedule an appointment with an MPN expert, what they will require.

Esther Schorr:

Then, there's the conversation with your local doctor.

Julia Olff:

Right. When we were chatting about having this conversation the other day, Dr. Roboz, you mentioned super specialists are more typical these days. I was thinking about the car analogy, that you want to go to the auto mechanic who's really familiar with the make and model that you have, and so it should be, not that it is, but it should be comfortable to say, "I also want to see an MPN expert," or "I want to see another physician who has a lot of expertise in this area, or sees more patients in this area." That was why I sought out Dr. Roboz. I knew she had a collective volume of MPN patients even 12 years ago. Over the years, Dr. Roboz is able to say to me, "Oh, I have other patients who said that," or "here's what I do with patients who have a similar experience to you." Then the other—this is a little bit off your question, but I wanted to make sure I said that one of the amazing things about seeing an MPN expert, is they know other MPN experts.

So, Dr. Roboz has consulted with other doctors who she can just readily access very quickly at a key point in my treatment experience. That's another reason. When you see that doctor, they are also attending meetings. They are engaged in the research and know other MPN experts who they can consult with on your case.

Esther Schorr:

Well, I actually think, at least from my experience being a care partner to somebody who is an MPN patient and worked with local doctor versus the sub-specialist, that there's an exchange of learning too. If you have a local physician who wants to be brought up to speed, should they be seeing more patients, that's the kind of rapport and teamwork that you're both talking about.

Dr. Roboz:

It's very successful too. Most of the time, honestly, it's win-win. Everybody is happier and benefiting. You get a new contact, you get a new colleague. I just got a call the other day from a colleague who knew somebody else who knew me about a question. That's how relationships are really successfully built. I think that the initial glitchy feeling of how do I broach this, that should hopefully be a two second thing. I think that if patients want to use a line like, "Oh, I saw the name of this doctor on a chat room or on," it's okay. That's totally reasonable now to say, "A friend of mine goes to this doctor, and I heard that she knows a lot about this." I think Julia's point is exactly right. The MPN community is not huge. There aren't billions. Sometimes we can actually be—you're calling me, but you live over there, but I might know somebody who's much closer to where you are, who can help you. That type of interconnection is really helpful too.

Esther Schorr:

Well, this conversation has been instructive for me, and I'm hoping that it's going to be very instructive for the MPN patients and their families who will be listening to this program. I just want to thank both of you, Julia Olff and Dr. Gail Roboz, for your insights. Having both the patient perspective and the specialist perspective on how to build a really active, vibrant, on-target team to manage one's care is so important, and you really have helped. I think this will educate a lot of people who are watching this and looking to do that for themselves and be essentially an active consumer, because when it comes down to it, it's your life, it's your health, it's your treatment.       

By stepping up and trying to engage the right team, you want to get the best treatment possible. So thank you to both of you. I want to let our audience know to look for additional programs in this series over the coming weeks and months, and I want to thank our sponsor, Incyte, for sponsoring this series. Again, we can't do these kinds of in-depth discussions without those sponsorships. This is Esther Schorr telling you that knowledge can be the best medicine of all.

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.

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