You Have To Go To Know: LeVar Burton on Why the Rare Blood Cancer Community Needs to Get Back to the Doctor

(BPT) - Best known for his roles in Roots and Star Trek: The Next Generation and helming Reading Rainbow, actor, director and longtime health advocate LeVar Burton strongly believes in using his voice and passion for storytelling to help others.

Recently, Burton, who has spent much of his career bringing stories to life, has taken on a new role. He has teamed up with Incyte on a timely health initiative called You Have to Go to Know, which aims to elevate the voices and stories of people living with and impacted by myeloproliferative neoplasms (MPNs), a group of rare, chronic blood cancers. Burton hopes to encourage the MPN community to put their health first by seeking the care they need.

“When I learned people have been hesitant to visit their healthcare providers during the past year and a half, I felt compelled to use my voice. In particular, I learned that people with rare blood cancers called myeloproliferative neoplasms or MPNs, may have been particularly impacted and could benefit from re-prioritizing their health and visiting their healthcare providers,” said Burton.

The three most common MPNs are polycythemia vera (PV), myelofibrosis (MF) and essential thrombocythemia (ET), which combined affect about 200,000 people in the U.S..^[i],[ii] MPNs can affect people at any age but are more common in older adults.^[i] They are progressive diseases, meaning they can change or worsen over time, and the best way to manage an MPN is through regular visits with a healthcare provider to monitor the disease to identify any changes.

Over the past year, however, many people have avoided visits to their healthcare providers due to health-related anxieties. In fact, nearly 41% of U.S. adults surveyed in 2020 indicated they didn’t feel comfortable visiting their healthcare provider in the months following the onset of the pandemic.^[iii] Delaying or avoiding medical care can lead to serious health implications, especially for people with chronic conditions like cancer.

“While I am not personally impacted by an MPN, I am reminded of my mother and her growing health challenges as she got older. She sometimes skipped her required doctors’ visits and follow up appointments, and I saw first-hand the negative impact it had on her health. My hope is that this campaign encourages the MPN community, and others with chronic conditions, to once again seek the care they need,” said Burton.

Burton is sharing what he has learned from his conversations with patients with MPNs to help inspire people within the MPN community and others with chronic conditions to once again seek the care they need:

• Schedule an appointment with your healthcare team – and keep it! Make and keep regular care appointments. Also, ask your healthcare team which appointments need to be in-person visits, and which can be telehealth (virtual) visits to potentially save time and energy driving to and from appointments.
  • In-person visits for patients with MPNs: Physical exams, blood tests, bone marrow tests, genetic tests and imaging scans require in-person visits.
  • Telehealth (virtual) appointments that patients with MPNs can consider: Each healthcare professional differs when it comes to what can be discussed during virtual appointments but typically the following can be discussed virtually: addressing symptoms, reviewing test results, asking questions, sharing health concerns, reviewing and tracking changes in a disease.
• Be your own health advocate. Advocating for your own care can help you actively participate in decisions being made about your health. Keep an ongoing list of questions for your doctor and don’t be afraid to ask for additional details or clarification. Track and share all of your symptoms as well. The more you share about how your symptoms are changing and affecting you, the better your healthcare provider can help you to manage your MPN and stay on track with what is right for you.
• You have to go to know. When you miss appointments, you also miss out on essential conversations. MPNs are progressive diseases that require constant monitoring. You Have To Go To Know… because your MPN isn’t waiting!

Visit www.voicesofmpn.com to learn more about MPNs and explore the many resources available to assist you with scheduling and making the most of your doctor’s visits.

© 2021, Incyte Corporation. MAT-HEM-02301 07/21