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Mapping Myelofibrosis
Navigating A Rare Blood Cancer

GSK presents
Mapping Myelofibrosis
Advocacy in Focus

Nicole Weidner, Host

NICOLE WEIDNER:
"Hello, I'm Nicole Weidner, Director of Patient Advocacy and Engagement and Oncology here at GSK. And I'm happy to present this second episode of Mapping Myelofibrosis. This podcast series features conversation, information and perspectives with leaders in the myelofibrosis community."

"Today we will be speaking with Kapila Viges, the Chief Executive Officer of the MPN Research Foundation, a Chicago-based organization that has been advocating for myelofibrosis patients for more than two decades."

"Kapila, thank you for taking the time to speak with us today."

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Kapila Viges, Chief Executive Officer of the MPN Research Foundation

KAPILA VIGES:
"Nicole, thank you for having me. We're delighted to be here. I'm proud to represent the MPN Research Foundation."

NICOLE WEIDNER:
"Wonderful."

"For people joining us today that may not be familiar with myelofibrosis, it is a complex blood disorder that is part of a family of diseases called MPNs or myeloproliferative neoplasms."

"So, Kapila, could you tell us a little bit more about the MPN Research Foundation's mission. And I'd love to understand a little bit more about what compelled you to join the MPN Research Foundation. What led you to this organization, and give us maybe some background there."

KAPILA VIGES:
"I think the answer lies in our roots as to when we were founded in back in 1999. Our founder, Robert Rosen, and some of the founders that he started the organization with recognized that very little actually at the time was being done. There was very little awareness and frankly, very little research being done around these types of diseases, polycythemia vera, essential thrombocythemia and of course myelofibrosis."

"And so was born the MPN Research Foundation. And so we've stuck really close to those roots of focusing very specifically on research. We have been steadfast over the past two decades plus on that research mission."

"For me, I don't have a direct connection to MPNs. I think sadly we all have some connection to blood cancers and cancer in some way."

NICOLE WEIDNER:
"Yeah."

KAPILA VIGES:
"I'm an engineer by training and I'm drawn into complex problems. As I started learning more about the MPN diseases and specifically about patient experiences…"

NICOLE WEIDNER:
"Hmm"

KAPILA VIGES:
"I started learning more and more about how frustrating the experience is for patients and how complex and nuanced the MPN disease area is. And it just continually drew me in to say this area needs a lot more attention as to better understanding how and why this family of blood cancers originates and importantly, how they progress throughout the patient journey. "

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Advocacy Perspectives

Advocacy Perspectives are those of MPN Research Foundation.

NICOLE WEIDNER:
"So Kapila, could you tell us a little bit more about how you're really pushing forward those advancements in research?"

KAPILA VIGES:
"First, we stay very close to the research and clinical community, and we try to understand where the barriers and opportunities are for us to be investing in research."

"The other piece that we are doing to bring all this together is bringing that patient voice into research and bringing our industry leaders and industry colleagues into the conversation as well, so that all three stakeholder groups that are really part of this complex puzzle and bringing new therapies to light can solve together in an aligned way and hopefully in a more effective and efficient way."

"And so we have a number of programs and ways in which we fund and we kind of have a portfolio approach to identifying areas of unmet need."

NICOLE WEIDNER:
"So Kapila, you just mentioned unmet needs. I'd love to dive in a little bit deeper there. Can you talk to us a little bit more about what are the unmet needs of the myelofibrosis patient community?"

KAPILA VIGES:
"So coming back to this idea, first of progression. I think that continues to be top of mind for patients and clinicians as well to really better understand who might progress and when."

"So from an unmet need perspective, I think we really are trying to advance programs and invest in research and initiatives that will help us uncover some of those answers and give patients a little bit of comfort and a little bit of understanding, give clinicians some evidence and some backing around which to treat and understand through this long treatment journey how to best help their patients through it."

"I think as we look to the future, we want to understand a little bit more about earlier detection and earlier diagnosis. We are starting to uncover that perhaps we can detect when the driver mutations or the gene mutations that are behind myeloproliferative neoplasms can be detected."

NICOLE WEIDNER:
"Wow, wow. And so it sounds like you and the organization have done a lot investing in the work needed in the research needed for this patient community."

"I'm wondering if you could highlight maybe some of the things that your organization has achieved in the past few years and really why patients are so critical to your mission."

KAPILA VIGES:
"Yeah. I think some of that goes, again, back to our origins, and one of the very first projects that MPN Research Foundation funded was in fact this research to uncover what were the genetic drivers and genetic causes of these myeloproliferative diseases."

"And that really unlocked a whole body of research over the past two decades around the discovery of the JAK2 mutation, which has progressed on to be the root of many of the therapeutics that we have available today for patients."

"It led to also the uncovering of the mipple or the MPL mutation."

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The Importance of Continued Advocacy

NICOLE WEIDNER:
"I'm wondering as we kind of think on into the next couple of questions and where I want to understand more from you is a little about maybe what you've heard from the patient community, the clinician community around the continued gaps that still remain for patients today."

"Maybe you can help talk a little bit about what the MPN Research Foundation is doing to identify and uncover those gaps and really close those."

KAPILA VIGES:
"Yeah. So I would say the number one concern that we hear from patients has to do with disease awareness."

"And so I think one of the things that we are striving to do is increase that awareness in some way through our research efforts and being able to spread the word a little bit more about what signs and symptoms to be looking for. And so as a patient presents to their care team with these types of symptoms, hopefully we can get a proper diagnosis earlier and do a better job of watching and monitoring and hopefully treating the diseases earlier and more effectively."

"You know, another component of this is that we are trying to expand our reach into the healthcare professional world and maybe expand a bit beyond the academic medical centers and learn more about treatment in the community."

"And so we will start a dialogue between MPN Research Foundation and the community for them to share with us what they're experiencing, and what resources, tools and support they might need from the larger MPN community to be able to identify and manage these patients."

"Another concern that we have, or we hear from the MPN community often is needing to increase awareness of clinical trials. And what we try to do and what we aim to do at MPN Research Foundation is make sure that our patients are aware that there are clinical trials out there that might be right for them."

NICOLE WEIDNER:
"I really do thank you, Kapila."

"The MPN Research Foundation is doing such an amazing job and the role you're really playing to help conquer this disease is just remarkable. So thank you for all you're doing in trying to seek treatment options and bring forward that into the world today."

KAPILA VIGES:
"Well, thank you for that. And thank you for having me today. We're all part of this long journey together. and so we're just grateful to have industry leaders like GSK along with us."

"Thank you."

NICOLE WEIDNER:
"Absolutely. Oh no, it's my pleasure Kapila."

"On behalf of GSK, thank you to our audience for tuning into the second episode of our Mapping Myelofibrosis podcast series. Stay tuned for additional episodes as we continue to shine a light on the important aspects of life with MPNS like myelofibrosis."

"It's these types of conversations and insights we receive from the myelofibrosis community that will help us get ahead together."

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PMUS-AOUCOCO230015 April 2024 
Produced in USA.

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