PH Insights

Philanthropy at PHA: From Tribute Gifts to Tax Changes

Guest Hosts: Sarah Smith, PHA’s director of fundraising events, and Courtney Durham, PHA’s director of individual giving.

 

In this episode, PHA fundraising team members Sarah Smith and Courtney Durham discuss the role and impact of charitable giving. They highlight the value of broad-based donor support, how fundraising events like the O₂breathe Walk series empower community members to make a significant impact, and preview upcoming 2026 tax changes that will affect charitable deductions.

This episode is the second in a two-part series about philanthropy at PHA.

Prepare for 2026 Open Enrollment: Key Insurance Changes You Need to Know

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

Every Gift Matters: How the PHA Community Gives Back

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.

Living with Sickle Cell Disease and Pulmonary Hypertension

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.

How the SOAR Act Can Keep Patients' Oxygen Flowing

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

 

Resilience in the Face of Adversity: Keisha's PH Story

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.

Help Us Breathe: PH Patients Advocate for Oxygen Reform

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

Be Ready for Anything - Facing Emergencies with PH

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.