LeVar Burton Gives ‘Voice and Visibility’ to Patients with MPNs Through Storytelling and Advocacy

When storytelling becomes a part of one’s identity, it can benefit a wide group of people — such as the MPN community — to share a potentially lifesaving message, according to LeVar Burton.

LeVar Burton, known for his roles on “Reading Rainbow,” “Star Trek” and many other shows, is taking on a new role — health advocate — to educate patients with myeloproliferative neoplasms (MPNs) on the importance of self-advocacy and being seen by other people in the MPN community and beyond.

Advocating for oneself, especially for patients with MPNs, is critical since it is a progressive and chronic disease that requires regular doctor’s visits. Burton is using his platforms to inform patients on going to doctor’s appointments to maintain their health, especially during a pandemic. In connection with Incyte, Burton is sharing the message “You Have to Go to Know Because Your MPN Isn’t Waiting” via a campaign, where he met with patients with MPNs to learn more about why time is critical for these patients.

CURE® spoke with Burton to learn more about what drew him towards the MPN community, how patients can reprioritize their health and how storytelling can help patients in so many ways.

CURE®: Why did you find it so important to use your storytelling skills to inspire people living with MPNs to prioritize their health and go to doctor's appointments they may have procrastinated on during the COVID-19 pandemic?

Burton: Storytelling is what I do. It's what I am. And when I was approached with an opportunity to give some voice and visibility to MPNs, the progressive nature and tie it to personal experience of my mom and seeing how, in her last months, not going to the doctor as often as she needed to (and) the impact that it had on her life. But then being in the middle of a situation where I knew I wasn't seeing my doctors with the regularity that I should have been. It just it felt like an opportunity that I couldn't pass up. It just made a lot of sense to me.

Since you have taken on this role, you have met with several patients with MPNs to learn about the challenges they have faced. What are some of the important points that you have learned from those encounters?

My big takeaways from my conversations with people from the MPN community is the various levels of challenge that they experienced based on the particular MPN that they have and how, in their interactions with others, those symptoms can present as so many other things that the awareness for what an MPN is and how it impacts the patient, there's not a lot of awareness out there for that. Without the awareness, it's very difficult to have a dynamic of compassion present. So that's been, I think, my biggest takeaway, the biggest impact that my experience with these patients have had on me is that they basically suffer in silence without a lot of support. And we can do better than that. No one should have to suffer in silence and without a sense of support. We are herd animals. And to not have a herd to support you through something as potentially traumatic, devastating, frightening, mysterious as a rare, chronic blood cancer, everybody needs somebody to understand what they're going through.

You mentioned your mother and the health challenges she faced as she aged. Can you go into a little bit more detail about that?

I don't feel like I want to tell tales out of school on my mom. That just doesn't feel right. But suffice to say that she could have done better, and I understand the limitations that she feels that she was working with. Her death is now a part of my living experience, my lived experience. And if I can derive some value and benefit from that — and I believe that I have in terms of my awareness through this pandemic of how important it is for me to do a better job of taking care of myself — I think that's the gift that Erma gave me, was the information through her example that I can, should and need to do a better job.

Can you tell us why you got involved in the MPN space?

I've never heard of MPNs. I couldn't even pronounce myeloproliferative neoplasms at the beginning. Now it rolls trippingly off the tongue. I guess I've always been drawn to the underdog. That's just a part of my character, my nature. And sufferers of MPN, it's a big group of underdogs. That’s why I said yes. I saw an opportunity to help and perhaps make a difference. And by all accounts, I think we're having a bit of an impact. Our plan is working out. It's working.

Self-advocacy is an important factor in MPNs. How do you think patients with MPNs and their caregivers should advocate for themselves to put their health first?

We all need to advocate. It's not just if you're suffering from a rare blood cancer. We all need to advocate for ourselves and do a better job. I think we can all step up our game a little bit, just based on the reaction that I get from people who have been exposed to the campaign. For me, the most satisfying response has been from within the MPN community itself, that they feel that my presence in this conversation has made a difference in their lives about how they feel about their struggle. And that's worth a whole bunch to me.

How do you think patients can reprioritize their health, especially during the COVID-19 pandemic, when screenings and doctor's visits may not have been top priority?

The main point of the message is you have to go to know. And on top of that, because of the pandemic and because we've all been lax and unable to get in to see doctors, we have really taught ourselves that there are some alternatives that can be an effective part of the process. As hospital space has been rare, in some instances, and it's been not just inconvenient, but in fact, impossible for patients who aren't dealing with COVID to get into a hospital space. Having the ability to have Zoom calls and video calls with doctors and still get eyes on and still have the conversations that patients and caregivers need to have, that's been a real positive. We are working it out to the best of our ability. We are discovering, (and) have discovered other ways to get some things done. Some things have to be done in person, blood work, you've got to go someplace or have someone come to you. But there are things that we have been able to do to mitigate the inability to have face-to-face meetings in doctor’s offices and hospital settings.

We have a section on our website and publication called Share Your Story, where patients, their caregivers and their family members can discuss their experiences, lessons learned and other topics. Since you have made a lifelong career of being a storyteller, why is it so important to share these stories?

We all want to be seen in life. It's part of the human condition. And telling our story is the right tool for the job in terms of communicating who we are, what's important to us and how the events as they have unfolded in our lives have helped shaped the people that we are. That's a skill that's valuable in every aspect of our lives, most notably, in terms of seeing a health care professional and being able to successfully give them your story, your medical story, so that they might be best equipped to help you take care of yourself. Storytelling is an absolutely innate part of being human, and there's a reason for that; so much information contained in stories about the experience of being human is contained and most successfully communicated via story.

Many of our readers have noted that they read a lot while undergoing cancer treatment. Do you have any books suggestions?

My sister was a dialysis patient, and three times a week, she went to dialysis. She was already an avid reader. Her reading habits were really shaped in her later years by her dialysis schedule.

I'm a science fiction, speculative fiction fan. When I'm reading for enjoyment, I gravitate to that genre. I have a podcast now where I read a short story on every episode.

For a lot of people, reading isn’t the best way to be exposed to story, which is why I consider audiobooks and podcasts reading. There's so much entertainment and informational value in the podcast universe. Here's how I feel. If you can't find something to read that moves you, that excites you, that fills you up, and if you can't find a podcast to address your passions, then you're not trying hard enough. We live in a miraculous age, in my estimation, in that we have access to so many stories and the value and benefit of them in an unprecedented manner. Just look at all the selections on Netflix that are in different languages. We have never, ever, ever, ever had this kind of access to global storytelling in the history of humanity. I carry a library around on my laptop, on my iPad. Come on, don't get me started. If you can find something to enhance your life in the field of audio literature or picking up a book and taking a look, then I don't know what to do with you.

What other thoughts would you like to share with patients with MPNs?

I want them to know that it is my fondest wish that you feel seen, that you do not, under any circumstance, feel like you are alone in this because you aren't. I want you to know that we see you.

This interview has been edited for clarity and conciseness.

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