PH Insights

Host: Jolie Lizana, PAH patient and advocate Guests: Matt Granato, LL.M., MBA, PHA's President and CEO; Kevin Heyen, PHA's Vice President, Development & Industry Relations; Jaeger Spratt, MSW, PHA’s advocacy and treatment access program manager; Eric Borstein, PAH patient and advocate; and Roopa Radhakrishnan, PH patient and advocate On this episode, the Pulmonary Hypertension Association takes you inside the rooms where real change begins. Get a behind-the-scenes look at the meetings where pulmonary hypertension patients’ and health care providers’ stories are heard, valued, and carry real weight. You will learn how advocacy meetings work, hear directly from individuals who traveled to Capitol Hill to speak on behalf of the PH community, and understand the impact their voices have in shaping policy. Most importantly, this episode breaks down how PHA can support you in advocating from wherever you are. Whether you are new to advocacy or already involved, you will see just how powerful your voice is and why it matters. Discover upcoming advocacy volunteer opportunities by subscribing to the monthly Advocacy Action Alert newsletter.

Host: Jolie Lizana, PAH patient and advocate, PHA’s Patient and Caregiver Education Committee member Guest: Mary Jo Farmer, MD, PhD; board certified pulmonary, critical care and sleep medicine physician, Mass General Brigham- Salem Hospital, associate professor of medicine at Tufts University School of Medicine Sleep-disordered breathing is far more common in pulmonary hypertension than most people may realize. On this episode of PH Insights, host Jolie Lizana sits down with a pulmonary, critical care, and sleep medicine specialist, Mary Jo Farmer, to unpack how nighttime oxygen drops, sleep apnea, and hypoventilation can impact your pulmonary vascular health and right heart function. Together, they discuss how clinicians diagnose and classify sleep‑disordered breathing, what happens in the body when sleep is disrupted, and how targeted treatment strategies can help. Visit Pulmonary Hypertension Related to Sleep Apnea to learn more.     Register for the PHA 2026 International PH Conference and Scientific Sessions to hear more from Dr. Farmer in, “The Impact of Treating Sleep Apnea and Hypoxia on Pulmonary Arterial Hypertension Management.”   PHA 2026 Scientific Sessions brings together health care professionals from all disciplines to earn continuing education credit, network with fellow pulmonary hypertension professionals, learn about the latest research and discuss best practices for PH treatme

Host: Meghan M. Cirulis, MD, MS, medical director, Intermountain Health Pulmonary Hypertension Center, assistant professor, pulmonary and critical care medicine, Intermountain Medical Center, adjunct assistant professor, University of Utah Pulmonary and Critical Care. Guest: Roberto Bernardo, MD, MS, ATSF, clinical assistant professor, Adult Pulmonary Hypertension Service, Vera Moulton Wall Center for Pulmonary Vascular Disease, Division of Pulmonary, Allergy & Critical Care Medicine, Stanford University School of Medicine   On this episode, host Meghan Cirulis speaks with clinician and researcher Roberto Bernardo about his work exploring ethnicity and social determinants of health for those living with pulmonary arterial hypertension in the Hispanic community. Bernardo discusses underlying disparities and offers insight into ways to improve quality of life for patients with limited access to care.  Bernardo also shares how PHA’s Pulmonary Hypertension Association Registry provided the data needed for his study.

Host: Jenna Olitsky, PAH and HHT patient, PHA’s Patient and Caregiver Education Committee member Guest: Silvana Saleme Mooney, MSN, APRN, nurse practitioner with the Pulmonary Vascular Disease Program at the Medical University of South Carolina On this episode, host Jenna Olitsky, a PAH patient and estate planning attorney, and nurse practitioner Silvana Mooney discuss how advance health care directives, health care power of attorney documents, HIPAA authorizations, and Physician Orders for Life-Sustaining Treatment (POLST) forms work in real-life medical situations. This episode is not legal or medical advice, but an educational conversation designed to help listeners better understand how these tools can support their care, reduce confusion and ensure their voices are heard when it matters most. Visit Health Care Planning: conversations, decisions, and directives - PH Association to learn more.

Guest Host: Courtney Durham, PHA’s director of individual giving Guests: Judy and Ed Simpson, PHA co-founders On this episode of PH Insights, Courtney Durham, PHA’s director of individual giving, speaks with PHA co-founders, Judy and Ed Simpson. They discuss the challenges and milestones of establishing PHA, the importance of connecting patients with physicians, and the significant advancements in pulmonary hypertension research and treatment.

Guest: Jaeger Spratt, MSW, PHA’s advocacy and treatment access program manager   In this episode, Jaeger Spratt shares what you need to know to prepare for the 2026 open enrollment period. They explain how cuts to Medicaid and other social safety net programs in the recently passed budget bill will affect the PH community and what to expect from 2026 Health Insurance Marketplace plans. Listen now to learn how to navigate potential formulary changes and stay up to date on key enrollment deadlines. Visit PHA’s Insurance and Treatment Access page for more in-depth information. Additional Resources: Financial Assistance info: phassociation.org/help PHA Insurance Guide: phassociation.org/patients/insurance-and-treatment-access/ ACA Marketplace Plans: healthcare.gov Medicare Rights Center: MedicareRights.org; 800-333-4114 Patient Advocate Foundation case management service: PatientAdvocate.org; 800-532-5274 State Health Insurance Assistance Program: shiphelp.org/; 877-839-2675

Guests: Traci Stewart, RN, MSN, CHFN, PHA Board of Trustees chair and PH nurse coordinator at the Heart and Vascular Center of University of Iowa; Guest stories from: Doug Taylor, PHA Board of Trustees member, support group leader and PH patient; Kimberlee Miller, PH patient; Amy Burant, PH patient; Casey Perez, PH patient; Priya Bavalia, PH community supporter; Shirley Duggan, family member of person with PH and bereaved family member.   On this episode, PHA’s board chair Traci Stewart shares inspiring stories from PH community members about their unique ways of giving back to PHA. From monthly donations and raising awareness to annual traditions and a lemonade stand, hear how everyday people are making a difference for the PH community. This episode is the first in a two-part series about philanthropy at PHA. Learn more about fundraising on PHA’s website. To make a gift, visit PHA’s Donate page.

Guests: James H. Tarver III, MD, cardiologist at AdventHealth Medical Group – Central Florida Division; and Nicole Creech, PHA Board of Trustees member, SCD and PH patient, and support group leader   On this episode of PH Insights, guests Nicole Creech and James Tarver explore the connection between sickle cell disease and pulmonary hypertension. They discuss the complexities of diagnosis, the challenges faced by patients and the role of advocacy and resilience in managing both chronic conditions. Tune in to learn about treatment options, the importance of a supportive health care team, and the hope for future advancements in care. For more information, download the Pulmonary Hypertension & Sickle Cell Disease brochure.

Guests: Patti Tripathi, ATS Breathe Easy host; Susan Jacobs, RN, MS, research nurse manager at Stanford University; and Jaeger Spratt, MSW, advocacy and treatment access program manager The Supplemental Oxygen Access Reform Act is pending legislation that would establish requirements for the payment and provision of supplemental oxygen and related services under Medicare. But how would this legislation affect patients, and how is the American Thoracic Society Nursing Assembly leading the charge in advocating for their needs? Guest host Patti Tripathi explores these questions with Susan Jacobs and Jaeger Spratt. This episode is the first in a two-part collaboration with the ATS Breathe Easy podcast. Visit “Help Us Breathe: PH Patients Advocate for Oxygen Reform” to listen to part two.  To learn more about PHA’s advocacy efforts, visit the  Advocacy Action Center and make your voice heard by using PHA’s SOAR Act advocacy message template to tell your legislators to pass the SOAR Act. If you have any questions about advocacy and the SOAR Act, please contact Advocacy@PHAssociation.org  

Guest: Keisha Jackson, PH patient and support group member In this episode, we celebrate PH Insights’ one-year anniversary with Keisha Jackson, who shares her inspiring journey of resilience while living with pulmonary hypertension, scleroderma and lupus. She reflects on the daily challenges of managing her health, raising a family and coping with the often-unseen toll these conditions take on her personal and social life.   Jackson emphasizes the importance of self-advocacy and shares how she continues to find her voice while living with multiple chronic illnesses.   For more information on PH and associated conditions, visit PHA’s Associated Disease Resources page.

Guests: Jaeger Spratt, advocacy and treatment access program manager; Amy Burant, pulmonary arterial hypertension patient of 12 years; and Colleen Connor, PH patient of 18 years. This episode of PH Insights is the second in a two-part series about the Supplemental Oxygen Access Reform Act, created in collaboration with the American Thoracic Society’s Breathe Easy podcast. Visit “How the SOAR Act Can Keep Patients' Oxygen Flowing” to listen to part one.   Guest host Jaeger Spratt highlights the voices of long-time PH patient advocates Amy Burant and Colleen Connor, who share their experiences with oxygen access and how those challenges have shaped their PH journeys. They also discuss their advocacy work and call on all members of lung disease communities, especially health care professionals, to advocate for the SOAR Act and help lung disease patients breathe easier.   To learn more about our advocacy efforts, visit PHA’s Advocacy Action Center and make your voice heard by using PHA’s SOAR Act advocacy message template to tell your legislators to pass the SOAR Act. If you have any questions about advocacy and the SOAR Act, please contact Advocacy@PHAssociation.org

Guests: Elise Whalen, DNP, MSN, APRN, FNP-C, CPN, nurse practitioner at Texas Children’s Hospital, assistant professor at Baylor College of Medicine and PHA PACE committee member; Jess MacLean, MSN, FNP-BC, Children's Hospital Colorado, Heart Institute - Pulmonary Hypertension   Emergencies don’t wait. For people living with pulmonary hypertension, preparedness isn’t just peace of mind — it is essential. In this episode, Elise Whalen and Jess MacLean share practical tips and information to help plan ahead for natural disasters, power outages and other medical emergencies.   To prepare for any emergency, visit PHA’s Emergency Situations page for additional resources.

Guests: Abby Sickles, program manager, Patient & Caregiver Programs and Marcie McGregor, PH patient and PHA Support Group Leader In this episode of PH Insights, guest host Abby Sickles welcomes Marcie McGregor to discuss her experience as a PHA support volunteer. Marcy shares her personal journey with pulmonary hypertension, the impact of peer support and the importance of community in navigating a chronic illness. They dive into the benefits of support groups, from easing isolation to boosting mental health and explore why no one should face PH alone.   To find a support program that works for you, visit https://phassociation.org/support/   

Guest: Oksana A Shlobin, MD, medical director and pulmonary hypertension program director of education and outreach, Advanced Lung Disease and Transplant Program, Inova Fairfax Hospital   On this episode, PH expert Oksana Shlobin provides a detailed overview of sarcoidosis-related PH. She reviews common signs and symptoms, outlines treatment options and shares insight into the complexities of diagnosing and managing SAPH. Shlobin also emphasizes the importance of effective communication between patients and their health care teams.   Learn more about sarcoidosis-related PH by downloading the brochure, PH and Sarcoidosis.

Guests: Navneet Singh, MD, ScM, MBA Assistant Professor of Medicine Associate Fellowship Program Director for Research Division of Pulmonary, Critical Care & Sleep Medicine The Warren Alpert Medical School, Brown University   Christopher Mullin, MD, MHS Assistant Professor of Medicine, Clinician Educator Director of the CTEPH Program; Associate Director of the Rhode Island Hospital Pulmonary Hypertension Center  The Warren Alpert Medical School, Brown University     On this episode of PH Insights, guest hosts and pulmonary hypertension experts Navneet Singh and Christopher Mullen talk about the risk factors for developing blood clots, along with current approaches to diagnosis and treatment. They explore pulmonary embolisms and chronic thromboembolic pulmonary hypertension, including the emotional impact these conditions have on patients. Singh and Mullin also cover treatment options, standard discharge practices and the importance of building a multidisciplinary care team.   To learn more, download the free brochure PH & CTEPH. Visit Financial Assistance for information about co-pay assistance.  

Guest: Naomi Habib, MD, co-director Pulmonary Hypertension Program at Arizona Pulmonary Specialists   On this episode, Naomi Habib, co-director of the Arizona Pulmonary Specialists PH Center of Excellence and recent PH Community Workshop-Phoenix co-chair, shares key takeaways from her experience and explains why these workshops benefit both patients and health care providers. The Pulmonary Hypertension Association’s PH Community Workshops are free one-day educational events designed to support patients, caregivers and families affected by pulmonary hypertension. These workshops provide a space for connection and support within the PH community while offering interactive sessions, expert-led discussions and networking opportunities for all attendees.  To learn more and find an upcoming event near you, visit PH Community Workshop.

Guest: Colleen Connor, PHA Board of Trustees, PH patient and advocate   The Pulmonary Hypertension Association accredited care center network was established over a decade ago to raise the quality of pulmonary hypertension care and expand patient access to specialized care and resources. In this episode, Colleen Connor shares the importance of PHA-accredited care centers, their approach to building your PH care team and its impact on her journey. She also highlights the benefits of the team-based approach used and how families can locate a center in their area. If you would like more information on the PHA-accredited care center program or find a center in your area, please visit https://phassociation.org/phcarecenters/

Guest: Mrinalini Krishnan, MD, FACC, regional director of pulmonary hypertension, MedStar Heart and Vascular Institute   In this episode of PH Insights, Mrinalini Krishnan discusses pulmonary hypertension due to left heart disease, the most common cause of PH.  Approximately 60% of people with LHD develop PH. Krishnan highlights the risk factors and signs and symptoms of PH-LHD that you should monitor over time. She also provides an overview of available treatment options. Download the Pulmonary Hypertension and Left Heart Disease brochure for more information.

Guest: Akshay Muralidhar, MD, co-director Pulmonary Hypertension Program at Arizona Pulmonary Specialists In this episode, Akshay Muralidhar provides an overview of pulmonary arterial hypertension and how a PAH diagnosis may affect a person’s daily activities and quality of life. He also shares the benefits of exercise and how a safe regimen can improve cardiovascular health and lead to reduced symptoms. Muralidhar provides a summary of the types of exercises suitable for PAH and tips for setting achievable goals.   For information on finding an exercise plan that works for you, visit Living with PH. Please consult your physician before making any changes to your exercise routine. to ensure your plan is the right one for you.

Guest: Michele Freeman, licensed professional counselor and PHA support group leader.   In this episode, Freeman provides an overview of the impact of stress and trauma to a person’s body while living with a chronic illness. She then leads listeners through a mindful meditation exercise designed to help manage stress. Additionally, she shares information about the importance of supportive care and why those in the PH community should consider joining a support group.  For more information on in-person and virtual support groups discussed in this episode, please visit https://phassociation.org/support/