Resources and Partnerships to Access Better MPN Care

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How do I get the best MPN care?  Being a member of the MPN (myeloproliferative neoplasm) community goes beyond being an MPN patient.  Executive Director of MPN Research Foundation, Michelle Woehrle, and Founder of PV Reporter & MPN Cancer Connection, David Wallace, join Patient Power founder Andrew Schorr and MPN expert, Dr. Srdan Verstovsek of MD Anderson Cancer Center to discuss the various means by which patients can access better care.  From simply sharing your anecdotal experiences with other patients to being a part of the newly emerging national registry, patients can help themselves and others while taking charge of their own care.

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Transcript

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. 

Andrew Schorr:

So, Michelle, what is your advice? You get calls all of the time from people newly diagnosed, whether it’s the patient, the family member, oh my God, we looked you—we Googled you. MPN Research Foundation. How do we get the best care? And how can we help a community so that we all do better? What advice there?

Michelle Woehrle:            

Well, first of all, I think that Dr. Verstovsek hit the nail on the head with his comment that patients need to be empowered to consider themselves a part of their own care team. They should know that they have a right to ask their doctors questions, to bring them information. And beyond that, once they found a specialist that they were comfortable with, we like to challenge them to take the next step to help someone else in the community. And there are many ways to do that. They can participate in an in person support group. They can comment on the online forums. There are many forums now. 

So everyone has an opportunity to go and find something at their level via Facebook or Twitter or—or private online networks for people just with MPNs. And I think that people don’t recognize the value that even their anecdotal experience has for another patient because they can feel very isolated. So I think that, making—making them realize that they’re part of a larger community and letting them know how they can advance their own care in others is—is one of the things that we’re really trying to do.

Andrew Schorr:                  

Let me just mention that there are various social media groups. And you’ve mentioned some journals almost that come out online. There’s the MPNForum. There are various listservs. There are publications you do, Patient Power, the PV Reporter. And there are also Facebook groups. 

David, there you are in Charlotte, North Carolina.

There probably aren’t many people from Charlotte with these conditions. But you found a way to connect with people worldwide, haven’t you? And that’s been a benefit.

David Wallace:  

Yes, Andrew. Basically, I started PV Reporter about three years ago. 

I began receiving emails and phone calls from patients around the world primarily in the U.S. But I’ve been able to get kind of a pulse for some of the issues that patients are having. And you know, trying to provide sort of a patient perspective—not medical advice but just kind of sharing my own experiences and providing them resources where they should go look for further information and refer them to other specialists.

Andrew Schorr:                  

Well, you provide a wonderful service, as has Michelle and some of our Facebook leaders and the other groups I’ve mentioned.

Dr. Verstovsek, you’re trying to push research ahead. And that requires partnership with patients. If we don’t consider being in clinical trials, if we don’t talk to you about research, sometimes, if we don’t provide financial support, if we have the wherewithal to help with research, it doesn’t happen. So what do you want to say to the community about a partnership between people living with the conditions and folks like you who are trying to move the field forward?

Dr. Verstovsek: 

You see, we talked about the team effort when we focused on the individual—the individual with the disease. We have a local doctor, community doctor, we have a—we have a specialist, we have a physician assistant. We have an MPN [Research] Foundation providing education, you with your efforts. This is the team effort at the local level, I will say, the patient level. Now, we expand through the community. This is what we are doing right now. We would like to work together at the larger level where we have a registry that is being organized by MPN [Research] Foundation. We have education that goes through you, through David’s efforts.

We have education that goes through Lindsey and myself and other academicians where we provide our own website with information, our own newsletters. We provide information about the clinical studies. And on the back side, we also engage with the patients that come to us through this outlet where we collect the samples and we—we try to understand much more than we already know about the biology of the disease beyond just genetic mutations that we have already mentioned. We try to look at the other aspects of the biology, understand the transformation from benign ET and PV to myelofibrosis, so fibrotic transformation.

Trying to understand transformation from ET or PV or myelofibrosis to acute leukemia, why does this happen? So there is much, much more to learn. We are only at the beginning, I would say, at this aspect of the biology. We only, for now, are aware how to define the disease at the beginning. But we really don’t understand the whole aspect of evolution potential of the disease. So biology and understand all that to develop new education, that is the goal.

Andrew Schorr:                  

Okay. So Michelle, Dr. Verstovsek referred to registry. What is this registry? How can we participate? 

Michelle Woehrle:            

So at the very—in its very simplest terms, a patient registry is a longitudinal, natural history study of the disease or condition. These are particularly important for rare diseases like PV, ET and MF where there traditionally is a lack of data. And for a condition like MPNs, which has already been referred to in this program, and a lack of understanding of—by the patients and understanding the underlying mechanisms of why we progress to more, more serious conditions like myelofibrosis or AML. And so the MPN Research Foundation has been looking into this for a couple of years.

We’ve seen the success in other conditions like cystic fibrosis and other rare conditions. And we wanted to see the same thing realized for the MPN community. So with the help of Dr. Verstovsek, Dr. Mesa, Dr. Claire Harrison and various others in the—in the community, we have decided to partner with Genetic Alliance, and we’re going to be hopefully recruiting for the patient registry sometime in late 2016. And in the very beginning, this is just going to be patient-reported data. 

But, in the long term, we do want to make it an asset that researchers can use and use it to help treat patients and find better cures and find better ways to help patients living today and tomorrow. 

Andrew Schorr:                  

David, from the patient point of view, you’re talking to patients all over, what would you say to them about getting on board with an effort like that to try to move the field forward? Would—would you join in? I think I would. But and what would you say to other people? 

David Wallace:  

Andrew, I think it’s a good thing, because from what I’ve gathered I’ve learned a lot from being on the online forums. And I think that, if we share our own information and our own experiences that we can help further research along that, you know, we have a collective effort of maybe tens of thousands of patients, instead of a smaller group of patients that maybe the physicians would see. And I think there’s a lot of valuable data that we, as patients, discover that are now being uncovered just recently. 

Andrew Schorr:                  

Right. Well, I’m in, and I know you are, too.

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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Page last updated on September 18, 2016