Pathlight - Autumn 2022

A publication of the Pulmonary Hypertension Association

CONNECTIONS, INSPIRATION AND EDUCATION

PLUS REMEMBERING

RINO ALDRIGHETTI HOW TO CARE

FOR YOURSELF AS A CAREGIVER

What’s the Best

Support Program for You?

2022 // Volume 31 // No. 3

Life With PAH Can Be Challenging.

Learning About PAH Shouldn’t Be. Join a free, educational webinar in the comfort and safety of your home

IN THIS ISSUE 2022 // VOLUME 31 NO. 3

24

18

7

Prepare for PH Awareness Month

8

Remembering Rino Aldrighetti

12 4 Steps to Resume Care and Normalcy

The Navigating PAH Pathways program offers free webinars created specifically for patients and caregivers, all led by a PAH Nurse and sponsored by Janssen.*

13 How to Care for Yourself as a Caregiver 14 What’s the Best Support Program for You

14

Find Answers

Learn Why

Get Talking

16 Honoring Her Son by Continuing Support Group 18 PHA 2022: Connections, Inspiration and Education

8

24 7 Volunteers Recognized for Outstanding PH Service

Hear an educational Understand more about the Discover how to have more presentation from a PAH effects of PAH, the 3 key informed conversations nurse on topics that may be treatment pathways, and about PAH with your care Knowledge.

Understanding. Empowerment. important to you. treatment goals. community.

26 Breathing Easier With New Lungs 28 Donor Profile: Supporting Research and Awareness

26

Webinars are available at various dates and times so you can register for one that best fits your schedule.

30 Open Enrollment: It’s Not Too Early To Weigh Insurance Options

Register today at PAHregister.com or call 1-888-370-8111 ON OUR COVER Your PAH healthcare team should always be your main source of information. This program is not intended to provide medical advice or address specific medical concerns.

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All webinars are viewed on a computer; internet access required.

PAH=pulmonary arterial hypertension. *The speaker is a paid consultant presenting on behalf of Actelion, a Janssen Pharmaceutical Company, and must present information in compliance with FDA requirements applicable to Actelion, a Janssen Pharmaceutical Company.

This issue’s cover story recaps the joy and excitement of PHA 2022 International PH Conference and Scientific Sessions. As our first in-person event since 2019, PHA 2022 reflects this issue’s theme, transition.

IN EVERY ISSUE 5

Letter From the Chair

32 Quick Takes 33 Calendar This program is sponsored by Janssen Pharmaceuticals, Inc. ©2021 Actelion Pharmaceuticals US, Inc. All rights reserved. cp-201358v1 0121

34 Passages Knowledge. Understanding. Empowerment.

PHASSOCIATION.ORG 3

PUBLISHER Matt J. Granato President & CEO

STAFF Linda Busche Editor-in-Chief Paula Maturana Graphic Designer Karen Smaalders Vice President, Communications and Marketing

CONTRIBUTORS Danielle Anderson, Naya Baharona, Angela Golden, Lauren Intrieri, Mike Lentz, Zangi Miti, Bonnie Patricelli, Holly Szmutko, Abby Sickles, Jaeger Spratt, Sara Tyghter.

BOARD OF TRUSTEES Tony Lahnston, chair Traci Stewart, chair-elect Matt Wall, treasurer Colleen Brunetti, M.Ed., C.H.C., immediate past chair Nicole Creech, secretary Matt J. Granato, LL.M., MBA, president and ceo, ex officio Trustees-at-Large Colleen Connor Ramona Doyle, M.D., M.Sc. Anna R. Hemnes, M.D. Kimberly Jackson, R.N., B.S.N. Mitch Koppelman, Ph.D. Michelle Ferdinand Liu, M.D., M.P.H., FAAOA Monica M. Penaranda Diane Ramirez Doug Taylor Jessie Kohler Wenninger, Esq. Delphine Yung, M.D.

CONTACT

Emeriti ex-officio

TEL: 301-565-3004

C. Gregory Elliott, M.D., FCCP, MACP Michael D. McGoon, M.D. Edwin Simpson Judith Simpson, R.N., Ed.S.

FAX: 301-565-3994 WEB: PHAssociation.org EMAIL: PHA@PHAssociation.org

SUPPORT LINE

Honorary Carl Hicks

800-748-7274

President & CEO

We’re here to support anyone with a connection to PH. (daytime, please)

Matt J. Granato, LL.M., MBA

Submissions to Pathlight are welcome.

Please email your articles, photos and queries to Communications@ PHAssociation.org.

PH PROFESSIONAL NETWORK EXECUTIVE COMMITTEE

1629 K St., Suite 300 Washington D.C., 20006

Kimberly Jackson, R.N., B.S.N., chair Cheri Abbott, R.N., CCRP April Blakley, R.N., B.S.N. Jessie Dunne, PharmD, BCPS, BCCP Loida A. Johnson, CRNP Tisha Kivett, R.N., B.S.N. Melissa Magness, M.S.N., APRN, CNP-AC

Billing and Mailing Address

SCIENTIFIC LEADERSHIP COUNCIL

Headquarters

8401 Colesville Road, Suite 200 Silver Spring, MD 20910

4 PATHLIGHT

MAnna R. Hemnes, M.D., chair Steven H. Abman, M.D. William R. Auger, M.D. Eric D. Austin, M.D., MSCI Sonja Bartolome, M.D. Todd M. Bull, M.D.

Murali M. Chakinala, M.D., FCCP Kelly Chin, M.D. Vinicio A. de Jesus Perez, M.D., FCCP Teresa De Marco, M.D. Ankit A. Desai, M.D., FACC, FAHA Jeffrey Fineman, M.D. Robert P. Frantz, M.D. Mardi Gomberg-Maitland, M.D., M.Sc. Daniel Grinnan, M.D. Kristin B. Highland, M.D., MSCR Tim Lahm, M.D. Deborah J. Levine, M.D. Wes McConnell, M.D. Lana D. Melendres-Groves, M.D. John J. Ryan, M.D., M.B., B.Ch., B.A.O. Sandeep Sahay, M.D. Oksana A. Shlobin, M.D., FCCP Thenappan Thenappan, M.D. Nidhy Varghese, M.D. Corey E. Ventetuolo, M.D., M.S. R. James White, M.D., Ph.D. Timothy L. Williamson, M.D. Liaisons Anna R. Hemnes, M.D., Kimberly Jackson, R.N., B.S.N. Distinguished Advisers David B. Badesch, M.D. Erika S. Berman Rosenzweig, M.D. Bruce H. Brundage, M.D. Richard Channick, M.D. C. Gregory Elliott, M.D., FCCP, MACP Karen A. Fagan, M.D. Michael D. McGoon, M.D. Vallerie V. McLaughlin, M.D. John H. Newman, M.D. Ron Oudiz, M.D.

LETTER from the

CHAIR Dear PHA community: I am excited about my new role as chair of the Pulmonary Hypertension Association (PHA) and serving the community in this leadership role.

It was amazing to be back in person at PHA 2022 International PH Conference and Scientific Sessions in June, getting to know new members of the PHA community and hear some amazing success stories.

For those of you who didn’t participate in PHA 2022, I will provide a little background about myself. I became involved with PHA in 2008. My niece was diagnosed with PVOD in April 2007 and passed away in that September.

Her death at such a young age was a devastating blow to our entire family. And rather than just grieve, I decided I needed to do something special in her memory. I thought, “Imagine if I could help another family avoid such a tragedy?” That would help all of us accept the loss of a beautiful young woman.

As I start my tenure as chair, it seems appropriate that theme of this month’s issue of Pathlight is transition.

In “Breathing Easier With New Lungs,” Holly Szmutko of Valparaiso, Indiana, celebrates her double-lung transplant. A long-time PHA advocate, she shares the ups and downs of adjusting to life with new lungs.

Mike Lentz of Ponte Vedra Beach, Florida, relates how his fundraising efforts have evolved over the past 10 years. In this issue’s donor profile, he discusses his late wife Maureen’s PH and his work with PHA. Our cover story focuses on the joyous return to PHA’s first major in-person event since the pandemic began. We share photos and anecdotes that illustrate the emotion, connections and inspiration from PHA 2022 International PH Conference and Scientific Sessions.

This issue also includes tips for returning to care and normalcy; open enrollment reminders and a tribute to longtime PH champion who is retiring from Congress.

Reading these stories, I am proud and honored to be part of this organization.

I remain hopeful that the work done by countless medical professionals, the PHA staff, Board of Trustees, PH patients and caregivers will bring us closer to a cure.

I want to thank Colleen Brunetti for her hard work over the past two years. Without her dedication and commitment, PHA wouldn’t have sailed through turbulent waters as smoothly as it did during the pandemic.

I also want to thank the outgoing board members and welcome the new board members. I am confident they will bring perspectives, thoughts and contributions to help PHA navigate through the next two years.

To the outgoing board numbers, thank you for your guidance and dedication to the organization.

What do I look forward to over the next two years?

I want to ensure we reach new financial performance milestones and progress toward a cure, as well as build a strong culture within PHA, as CEO Matt Granato has done over the past 20 months.

I also want to provide the PHA staff with the resources they need to succeed. Let’s allow those passionate people to shine. In doing so, PHA will be poised to fulfill our mission and vision with the most talented people and their incredible passion.

Tony Lahnston Chair, Pulmonary Hypertension Association PHASSOCIATION.ORG 5

NEWS

Announcing ...

More Knowledge and Inspiration for People

PAH Initiative Ambassadors Karen, Lauren, and Denise

PHacing

Living With PAH

T H E F U T U R E day by day

From the PAH Initiative, sponsored

by United Therapeutics

Navigating life with PAH is about more than understanding the disease—that’s just the first step!

The PAH Initiative is here to help with even more useful and encouraging content about living with PAH, including: Real patient stories and insights Self-care with PAH

Workouts designed for people with PAH Connecting with others

Nutrition and the impact of sodium on PAH

Caregiver insights and resources

Emotional well-being PAHInitiative.com is always being updated with helpful and encouraging information featuring perspectives and insights from PAH experts and patients like you.

Did you know the PAH Initiative recently published an exciting new issue of a magazine for people with PAH and their caregivers?

Get your free copy of the PAH Today magazine—available now at

PAHInitiative.com/living-with-PAH.

Sponsored by United Therapeutics Committed to Improving the Lives of Patients 6 PATHLIGHT

© 2022 United Therapeutics Corporation. All rights reserved. US/DS/0925

Prepare for PH Awareness Month

E

ach November, the Pulmonary Hypertension Association (PHA) provides tools to educate the public, health care providers and policy makers about pulmonary hypertension (PH).

We share the tools to help people with PH, their loved ones and others spread awareness.

This year’s theme is “PHacing the Future Day by Day,” in recognition that each day with PH is a new journey.

A highlight of the campaign will be an interactive PH Awareness Month Calendar.

Introduced in during Awareness Month 2020, the calendar works like an online Advent calendar: you click on the dates to discover facts, tools and rewards to educate people about PH

risk factors, symptoms and resources.

Each day, the PHacing the Future Day by Day calendar will reveal new information and downloadable resources to discover and share.

We also will provide an online toolkit with social media graphics, sample posts, profile and cover images, customizable news releases, and flyers for health care professionals to print and post in their offices and clinics.

Awareness Month activities include Advocacy Day of Action Nov. 17 and Giving Tuesday Nov. 29.

The Day of Action is a virtual activity to educate Congress about the effects of PH. Please share your story to help lawmakers understand the importance of funding research and ensuring affordable, accessible health care.

Giving Tuesday is a global day of giving on the Tuesday after Thanksgiving. We will encourage the community to donate to PHA to support our mission.

Awareness Month activities also include CTEPH Awareness Day on Nov. 9. On CTEPH Awareness Day, PHA will draw attention to chronic thromboembolic pulmonary hypertension, a form of PH caused by old blood clots in the lungs.

Visit PHAssociation.org/ AwarenessMonth.

PHASSOCIATION.ORG 7

NEWS

NEWS

IN MEMORIAM:

RINO ALDRIGHETTI

T

he Pulmonary Hypertension Association paid tribute to its longtime leader Rino Aldrighetti at PHA 2022 International PH Conference and Scientific Sessions. Rino died May 30, a few weeks before the Atlanta conference.

Rino, who led the Pulmonary Hypertension Association for nearly two decades, was PHA’s first employee, hired in 1999 as part-time executive director. He soon became full-time and later was promoted to president and CEO. He retired after the PHA 2016 conference.

“Rino was a dreamer and a visionary,” says PHA Chair Colleen Brunetti. “Status quo was never enough. He was forever coming up with new innovative ideas for PHA to grow and increase our impact.”

Tall with a commanding but friendly personality, Rino shepherded PHA from a small grassroots organization to the largest pulmonary hypertension organization in the world. Under his leadership, PHA became a professionally staffed organization, rapidly expanding the organization’s fundraising, budget and services.

“When you think of this period in PHA’s development, I hope that you will think that I tried my hardest to lead this organization with integrity and a deep and abiding desire to change the history of this disease for the good of patients,” Rino said in his retirement speech at PHA 2016.

FIERCE, CARING ADVOCATE

“Rino was in it not for the job, nor to establish a career, nor even to create an exemplary organization,” says Michael McGoon, M.D.,” a member of PHA’s Scientific Leadership Committee since its 1992 inception. “Rino was in it because he clearly saw that the potential of this patient-centric organization grounded in clinical science. He knew PHA could do something meaningful for patients.”

Colleen realized Rino’s commitment to people with PH when she met him at PHA’s PH Professional Network Symposium not long after she was diagnosed. She related her challenges in trying to reach her specialty pharmacy about medication delivery problems.

“Rino picked up his phone and dialed that contact directly” she recalls. “My jaw hit the floor.” Rino spelled out the importance of the situation, what needed to be done and how the lack of response was unacceptable. “Long story short, I had my medications shortly after,” she says.

8 PATHLIGHT

Colleen Brunetti, immediate past chair of the PHA Board of Trustees, with Rino.

“In that moment, I knew we had the most fierce and caring advocate as the head of PHA, and we were so lucky.

Under his leadership and at his nudging, I would go on to tell my story to many companies, and help create a program at PHA that still helps patients access care today. I am forever grateful.”

EMBRACING RESEARCH

Described as a risk taker, Rino embraced and supported initiatives to improve access and quality of PH care, fund research and build a vibrant support group network. He opened PHA’s first Silver Spring, Maryland, office and hired its second employee.

“He embraced support for research to improve the lives of PH patients and rose to the challenge of fundraising,” says Greg Elliott, M.D. Rino supported the Research Room at Conference and embraced the idea of creating a network of accredited PH care centers modeled after a Cystic Fibrosis Foundation program, Dr. Elliott says.

Rino’s many accomplishments include PHA’s launch of Advances in Pulmonary Hypertension, the first

medical journal dedicated to PH. Rino was especially committed to expand PHA’s culture globally.

He recognized that each country or region incorporate PHA’s ethos of concern for patients and worked with representatives in other countries to build a network of PH organizations worldwide, McGoon says. His passion for international collaboration led to the 2010 establishment of the International Leaders Summit at PHA’s conference.

Before joining PHA, Rino was executive director of the National Family Farm Coalition, executive secretary of the National Volunteer

Organizations Active in Disaster, development director for the National Council for Adoption, and associate director of development and public relations for the National Shrine of Immaculate Conception.

Rino came to the Washington, D.C., area after college as a community organizer with Volunteers in Service to America. Originally from Brooklyn, New York, Rino met his late wife Laura, another volunteer, at VISTA. They married in 1976 and moved to Takoma Park, Maryland, where they raised their children Nina and Peter.

In addition to his considerable nonprofit experience, Rino was active in his community, serving on the Takoma Park City Council in the mid1980s.

After retiring from PHA, Rino wrote a blog and cared for his wife Laura, who died of cancer in 2017.

After Rino was diagnosed with cancer in 2018, he spent time cooking, baking and writing stories for his grandson Freddy.

As the PH community mourns Rino, the Aldrighetti family hopes you will continue his commitment to PHA by contributing to the Rino Aldrighetti Leading From the Heart fund.

Gifts to this fund will support PHA’s critical patient care and education programs as well as cuttingedge research to find new treatments and a cure for PH — causes Rino supported with passion.

To contribute, visit PHAssociation. org/rino-aldrighetti.

PH advocate Laura D’Anna and her son with Rino at the Wojo Swing for a Cure PH Golf Classic 2010.

PHASSOCIATION.ORG 9

NEWS

NEWS

Meet the New PHA Board of Trustees Leaders

T

he Pulmonary Hypertension Association (PHA) welcomed new leadership on July 1. The new officers will serve two-year terms.

PHA thanks outgoing board members Cheri Abbott, Karen Fagan, Ron Oudiz, Melisa Wilson and Joel Wirth. We appreciate their years of service and everything they have done to keep the community safe and informed and help patients continue their treatments.

NEW OFFICERS

Chair: Tony Lahnston is a banker and manufacturing executive from Windemere, Fla., He became involved in PHA in 2007 after his niece, Marchelle Corbett, died from complications related to pulmonary veno-occlusive disease, a rare form of PH. Tony has served on PHA board for many years, including its Development and Investment committees. He

10 PATHLIGHT

also chaired the Finance and Audit Committee. He is president of Maryland-based Curaleaf.

Chair Elect: Traci Stewart, R.N., is a PH nurse coordinator at the University of Iowa’s Heart and Vascular Center. She has more than 20 years of clinical expertise in managing PH and heart failure patients. She facilitates a regional PHA support group and educates patients and health care providers in the community failure disease management. As a nurse leader at the University of Iowa, she develops new treatment protocols, in-services staff nurses, and provides heart failure and PH education during nurse orientation.

She has been a member of the PH Professional Network since 2001 and is past chair of the PHPN Executive Committee.

Treasurer: Matt Wall became involved in the Pulmonary

Hypertension Association after his son, Jackson, was diagnosed with PH at 14 months old. He and his wife Jayna raise money for pediatric PH research, primarily through their annual golf tournament, Driving “Fore” a Cure for PH. As a family, Matt, Jayna and sons Jackson and Jayden organize and participate several PH fundraising and awareness events, media interviews and Miracle Hospital campaigns.

Matt is the Raleigh-Durham Special Services Group leader for DPR Construction.

Secretary: Nicole Creech leads a PHA support group in Lexington, Kentucky, where she lives with her Yorkshire terrier, Jager. Nicole is a member of PHA’s Support Group Leader Advisory Board and a patient representative on the PHA Registry Steering Committee. Nicole was diagnosed with PH related to sickle cell anemia in 2008. She was 36. She

worked in her long-time property management career until three years after diagnosis, then opted for early retirement. In 2016, Nicole became a member of PHA and resolved to help find a cure through volunteer work.

NEW BOARD LIAISONS

Scientific Leadership Committee Chair: Anna Hemnes, M.D., is a translational physician-scientist who researches altered metabolism in pulmonary vascular disease. She treats patients at the Vanderbilt Center for Pulmonary Vascular Disease in Nashville, Tennessee.

Dr. Hemnes researches the effect of BMPR2 mutation on insulinmediated intracellular signaling in the pulmonary vasculature and the right ventricle. Her clinical research interests include insulin resistance and metabolic syndrome in human pulmonary vascular disease.

Dr. Hemnes received her medical degree from Johns Hopkins University

in Baltimore, where she completed a fellowship, internship and residency.

PH Professional Network Chair: Kimberly Jackson, R.N., B.S.N., is nurse cardiovascular coordinator at the University of Kentucky’s Gill Heart and Vascular Institute Pulmonary Hypertension Clinic in Lexington. She has worked primarily with PH patients since 2010.

Previously, she was nursing services supervisor at Kentucky Cardiology.

Kim is dedicated to compassionate nursing care, education and advocacy.

She aims to provide a high level of care to her patients and improve their quality of life.

Kim is chair-elect of the PHA PH Professional Network Committee and immediate past chair of PHPN’s Education Committee. She is the PHPN liaison to PHA’s Scientific Leadership Committee.

She has a Bachelor of Science in nursing from Indiana Wesleyan University.

PH Care Centers Board Chair: Delphine Yung, M.D., is attending cardiologist at Seattle Children’s Hospital and assistant professor in the University of Washington School of Medicine’s pediatrics department. She cares for children in Seattle Children’s Heart Center outpatient clinic and consults on inpatient cases. Dr. Yung received her medical degree from Stanford University. She completed an internship and junior residency in pediatrics at Children’s Hospital Boston and a senior residency in pediatrics at Lucile Packard Children’s Hospital at Stanford.

PHASSOCIATION.ORG 11

HEALTH MATTERS

HEALTH MATTERS

4

Steps to Resume Care and Normalcy Amid Pandemic Fluxes

Speak with your pulmonary hypertension (PH) care team if you have concerns about returning to in-person care. Your team can share what your hospital or clinic is doing to mitigate COVID-19 risks. Plus, tell your care team if you’re uncomfortable being around people again, whether at the grocery store or a gettogether. Your team will work with you to create a plan that’ll make you feel safe based on your individual risk.

Feeling stressed? Pay attention to how you feel because it can affect the person you’re caring for. Learn selfcare techniques shared at PHA 2022 International PH Conference and Scientific Sessions:

1

Practice mindfulness. Mindfulness is the practice of shifting your thoughts to focus on the present moment. Examples include meditation, taking a moment to breathe at the beginning or end of your day, or reflecting on your day. Mindfulness allows you to let go of anxiety, fears and other distractions.

1

That’s just one of the returning to care tips that PH doctors shared in June at PHA 2022 International PH Conference and Scientific Sessions. Here are a few more: Consider a mix of in-person and online appointments. Virtual appointments have made it easier for PH patients who live hours away from their specialists to attend their appointments. Coordinate with your team to find what balance of virtual and inperson visits works for you, Lori Reed, NP-C says. Your care team also can connect with your local cardiologist or pulmonologist to administer six-minute walk or other essential tests if you can’t travel. Patients who continue virtual visits must be good advocates for themselves and communicate with their care teams, especially when they notice red flags, Lori says.

2

Continue COVID precautions. Even if you’re vaccinated and boosted, it’s important to continue to mask and social distance. Those precautions will help you lessen the risk of catching COVID-19. Vaccines are saving lives by keeping people from becoming critically ill from COVID-19, but it’s still possible to get the virus, Karen Fagan, M.D., emphasizes.

Patients should resume normal habits, but everyone’s risk is different. If you plan to go to an in-person event, know what safety measures are in place to ensure that you’re comfortable and feel safe before attending, Dr. Fagan says.

3

12 PATHLIGHT

How to Care for Yourself as a Caregiver

Reach out for support. If you’re feeling isolated at home, reach out to your providers, trusted friends and family for support, Dr. Fagan recommends.

Your care team can help you and provide you with resources. If you can’t attend an in-person support group, PHA’s virtual support groups are a great way to connect without having to worry about physical health. You also can call PHA’s patient-topatient support line to get immediate support: 800748-7274.

4

Mindfulness is a method of self-care, so train yourself to stop and be in the moment, says Michelle Ferdinand Liu, M.D., M.P.H. It’s important to care for yourself so you can care for others, she says.

Try breathing exercises.

Licensed professional counselor Michele Freeman, MSMHC, N.C.C., L.P.C., LCSW, shared several breathing exercises to help reduce stress and anxiety. Breathing exercises include:

2

Bagel breathing or pursed lip breathing: Breathe in through your nose for three seconds, and then out of your mouth for six seconds as if you’re blowing into a straw.

Belly breathing: Adding belly breathing helps you calm down quickly. Expand your abdomen when breathing to incorporate belly breathing.

Put your hands on your hips. This helps with belly breathing. Try it before doctors’ appointments to center you and make you more powerful.

Attendee practices chair yoga at at PHA 2022 International PH Conference and Scientific Sessions.

Inhale the good; exhale the bad. Breathing with intention can be more powerful. For this exercise, breathe in what you want, and breathe out what you want to get rid of.

For example, breathe in resilience, and breathe out guilt.

Smile. If you smile for two minutes, even if it’s a fake smile, dopamine starts entering the brain, which causes a disconnect with what you’re upset about. Regardless of what’s on your mind, smiling reduces heart rate, stress and pain. It also increases productivity and boosts the immune system. Laughter can ease anxiety. Activities like laughter yoga can help, Michele Freeman says.

3

Note what makes you feel good. Create a list of everything that makes you happy and feel good, Dr. Liu says. When you’re having a down day, you can refer to this list. It’s also helpful to include breathing techniques so you don’t forget when you need them. The more you do of what makes you feel good, the more it becomes a habit.

4

Breathe through your heart center. Breathe through the nose, and imagine your exhale goes through your heart center as if you’re changing the direction of your breath.

Breathe in and breathe out.

PHASSOCIATION.ORG 13

HEALTH MATTERS

HEALTH MATTERS

What’s the Best Support Program for You? Choose Virtual, Hybrid or In-Person Options

Welcome New PHA Support Groups

P

ulmonary Hypertension Association support services continue to grow as PHA seeks new leaders to join our network of volunteers. We’ve welcomed and trained 21 new support group leaders and added 10 new support groups this year, including: • Long Beach, California.

• Southeast Texas.

• Ohio State University.

• Pediatric at Duke.

• Intermountain Medical Center, Utah.

• Columbia, Missouri.

Many of the new groups met for the first time in July and look forward to planning fun, educational and supportive meetings in the near future.

No support group in your area? You can be a leader too.

PHA is looking for volunteers to lead support groups.

Support group leaders can be people with pulmonary hypertension (PH), caregivers, health care providers, or anyone willing to volunteer their time.

By becoming a support group leader, you will join a nationwide team of volunteers who are passionate about supporting, educating and empowering the PH community.

As a support group leader, you will plan and lead support group meetings. PHA will provide assistance and tools to help get your group started, plus ongoing support.

Starting a support group is one of the most meaningful ways to strengthen the PH community in your area.

Apply at PHAassociation.org/get-involved/volunteer.

PHA offers support groups for everyone, including a special session at PHA 2022 for long-term survivors.

T

he Pulmonary Hypertension Association (PHA) recently began expanding meeting options for support group leaders: in person, online or hybrid (in-person with virtual elements).

For the first time since the pandemic started, some support groups are meeting in person. Groups that meet in-person must follow PHA’s In-Person Meeting Policy to protect the health attendees.

Others continue to meet online, allowing attendees to participate no matter where they live.

Online support meetings are ideal for people who can’t attend in-person because of distance, health or other challenges.

Like all PHA support programs, virtual services are facilitated by trained, experienced community volunteers. PHA trains volunteers 14 PATHLIGHT

to listen to you, share tips from their PH journeys, and refer you to helpful resources.

PHA’s virtual support programs connect patients and caregivers online or by phone. Virtual resources include: PHA Support Line. Call (800) 748- 7274 to connect with a member of the PH community.

Telephone support groups. These groups meet monthly by phone or video chat. Which group is right for you?

• Patients.

• Caregivers.

• CTEPH patients/caregivers.

• Bereaved families/friends.

• Parents of children with PH. • Young adults with PH. • Spanish-speaking patients.

You must register for every call so the support group leader knows how

many attendees to expect. Learn more at PHAssociation.org/VirtualSupport.

PHA Facebook groups. Social media can be a powerful tool for connection, but it can be challenging to know where to go or who to trust.

PHA groups are trusted resources that we manage and are moderated by volunteers. Find the right group at PHassociation.org/VirtualSupport.

• PHA Long-Term Thrivers.

• PHA Generation Hope: Young Adults.

• PHA PH Plus: Associated Conditions.

• PHA CTEPH (chronic thromboembolic PH).

• PHA Teens.

Find your group: PHAssociation. org/support.

The Long Beach, California, Support Group met for the first time in July.

PHASSOCIATION.ORG 15

Reach members of the NEWS

VOLUNTEER SPOTLIGHT

Honoring Her Son by Continuing Support Group They Co-Founded

PULMONARY HYPERTENSION ASSOCIATION Advertise in: PHAssociation.org: Comprehensive resource for anyone affected by PH

BONNIE PATRICELLI leads the Pulmonary Hypertension Association (PHA) South Jersey Support Group with Nancy Zeppa. Bonnie, who lives in Clementon, New Jersey, with her husband, Dominick, has been involved with the support group since 2008. Their son, Ryan Juntti, died in 2015 of pulmonary hypertension (PH).

BY BONNIE PATRICELLI

M

y PH story began in summer 2007 when my son Ryan was diagnosed with idiopathic pulmonary arterial hypertension. He was 27 and living in South Carolina. That fall, he moved in with me and his stepfather and remained with us until his passing.

Ryan and I began attending the Penn Presbyterian Support Group in Philadelphia where his nurse practitioner, Chris Archer-Chicko, led a support group. The members encouraged us to go to our first PHA International PH Conference and Scientific Sessions in 2008 in Dallas. At PHA 2008, we attended a session on PHA support groups and decided to restart what had been the South Jersey Support Group when we returned.

We were co-leaders from 2008-2015. After Ryan’s passing, I wanted to honor him and continue to support our friends in the group. I also wanted to share knowledge I’ve gained to help others, which makes me happy. I don’t want anyone to be on this journey alone.

Starting a PHA support group is a great way to meet and support other PH community members whether patients, caregivers or health care professionals. PHA provides tons of support for its support groups and leaders. Whoever comes to a meeting is glad you’re there, and they often need someone to share with, whether there are two people or 15.

You will learn from each other.

16 PATHLIGHT

Before the COVID-19 pandemic, our support group met five times a year. We met at the Chews Landing Fire Hall where my husband is a volunteer fireman. Since the pandemic began, we meet virtually every month. We are considering starting mix of in-person and virtual meetings.

Several of our group members can’t physically get to the meetings, and they like the virtual opportunity.

In addition to the support group, I stay involved in the PH community in other ways, too.

Raising funds every year for the O₂Breathe Philly Walk and spreading PH awareness is something I enjoy. The money raised goes toward much-needed research and help for patients. In past years, Ryan and I received Lantos Grants to create Hot Holders and restaurant placemats, which PHA distributed throughout the country to spread PH awareness.

I also enjoy setting up PH awareness tables at community fairs. Spreading awareness is something I am proud of and dedicated to. The earlier the diagnosis, the better.

I am most inspired by the PH warriors who, even with their own struggles, are so open and willing to help others.

So many are actively involved in volunteering not only with PHA but also in their communities. With my own recent diagnosis of Parkinson’s, I have received overflowing encouragement from my PH friends. It keeps me going .

PHA News: Biweekly patient-focused e-newsletter

Pathlight: PHA’s quarterly member magazine

PHAssociation.org

Contact: David Lusby | Association Media Partners PHASSOCIATION.ORG 17 dlusby@associationmediapartners.com | 214-466-8147

NEWS

NEWS

PHA 2022: Connections,

Inspiration and Education

L

ong-awaited greetings filled the air as attendees began to arrive at the Hyatt Regency Atlanta for PHA 2022 International PH Conference and Scientific Sessions.

For many, PHA 2022 was their first in-person pulmonary hypertension (PH) event since the beginning of the pandemic. For some, it was their first PHA experience.

With a weekend of general and breakout sessions, networking receptions, support group meetings, exhibit hall exploration, a fashion show and more, PHA 2022 offered plenty of activities for new and repeat attendees.

It all started with the PHA 2022 opening ceremony.

Keynote speaker Marcie McGregor welcomed attendees by sharing her PH diagnosis story. She discussed her initial misdiagnosis, her continued efforts to advocate for herself and how she became involved in the PH community. Her speech touched many in the audience, including first-time attendee Hope Netterville of Beaumont, Texas.

“I was literally crying,” Hope said.

ADVOCATES ON FIRE

Marcie also shared a story from her first PHA conference. After attending PHA 2016, she was fired up and wanted to give back to the community, specifically to help the children fighting PH. After many years of planning, Marcie announced during PHA 2022 that each child participating in the kids room would receive a coloring book she helped create.

Marcie came up with the idea of creating a coloring book after a parent of a child with PH asked for tips to help their child wear their oxygen. Marcie’s coloring book features pictures of children doing everyday activities while wearing oxygen.

For Hope, who was diagnosed with chronic thromboembolic pulmonary hypertension (CTEPH) in 2019, hearing the story was a breakthrough.

When Marcie spoke about being “on fire,” she sparked an idea in Hope. “I had been thinking about starting a support group for over a year,” Hope said. As soon as she could, she went to find Marcie to talk. Now, Hope is working on starting a support group in her area.

More than 1,000 people attend PHA 2022, which was livestreamed for those who couldn’t attend in person. This year’s theme was “PHacing the Future Together.”

18 PATHLIGHT

PHASSOCIATION.ORG 19

PHA 2022 NEWS

PHA 2022 NEWS

Health care professionals present their research in lightning round presentations as part of the scientific sessions.

Jackson Wall, 11, jumps up with surprise as he is named Outstanding Young PH Citizen. Jackson, who was diagnosed with PAH at 14 months, has always jumped at the opportunity to tell people about PH and his pump.

SPEAKING UP AND SPREADING AWARENESS

On Friday and Saturday, attendees heard from medical professionals, patients and caregivers in breakout sessions.

One of the speakers was Gerry Langan, who participated in two sessions. A social media influencer with over 28,000 followers, Gerry Langan is an advocate for the PH community. Since her idiopathic pulmonary arterial hypertension (PAH) diagnosis in 2018, Gerry has shared her story online to raise awareness for the PH and rare disease communities.

“Speaking at PHA 2022 was a privilege and it was an incredibly cup-filling experience for me,” she said. “I wanted to make sure that people understood that advocating for yourself and sharing your [PH] story is both brave and powerful.”

For Nancy Zeppa, “Hearing from Gerry was very inspiring.”

PHA 2022 was her first PH conference since her 2019 diagnosis. After being encouraged by fellow support group members to attend, she took the trip from Burlington, New Jersey, to Atlanta. Her favorite session was “Posting for PH: How to Make an Impact on Social Media.”

PHA 2022 drew attendees from all over the world, particularly South and Central America. Here, Spanishspeaking attendees pose with PHA President and CEO Matt Granato.

20 PATHLIGHT

ADDRESSING SCIENTIFIC ADVANCEMENTS

As patients attended breakout sessions related to life with PH, health care professionals attended sessions with a scientific focus.

Themed, “Vision for the Phuture: The Evolving Science and Management of PH,” the scientific sessions focused on PH research, as did lightninground presentations of research topics selected for the Poster Hall.

At industry-sponsored sessions, patients and health professionals learned about state-of-theart technology and other PH advancements.

During the medical update dinner, Todd Bull, M.D., and Stephen Mathai, M.D., M.H.S., discussed “Redefining Pulmonary Hypertension through Pulmonary Vascular Disease Phenomics.”

Health care professionals visit the Poster Hall to learn about the latest in PH research.

PHASSOCIATION.ORG 21

PHA NEWS 2022

NEWS

The multi-center study, which aims to identify biomarkers to improve PH diagnosis and treatment, is funded

by PHA and the National Institutes for Health National Heart, Lung, and Blood Institute.

KEEPING HOPE ALIVE

Patients and care team pairs shared their stories in Journeys lunch. Here, Michelle Liu, M.D., M.P.H., FAAOH, and Stephen Walker, M.S., CRNP discuss the care journey of Michelle’s daughter Esther, who has PH.

Attendees enjoy PHA’s first in-person conference since 2018.

22 PATHLIGHT

Saturday night was a big moment for winners of PHA’s Outstanding Member Awards. For one recipient, the award was a particularly sweet surprise.

Although other award winners knew about their awards before the ceremony, 11-year-old Jackson Wall learned he won as his name was announced onstage. When Jackson heard his name, he jumped out of his chair, and his face lit up with joy. He rushed to join emcee Doug Taylor and PHA President and CEO Matt Granato onstage to accept his award.

“I was really shocked,” Jackson said afterward. “I couldn’t believe it.”

Jackson was nominated for Outstanding Young PH Citizen, which recognized his volunteer efforts, advocacy and more.

Jackson’s fun didn’t end at the awards gala.

He also participated in in the Fashion Show with 15 other patients and caregivers. He sported a customized karate uniform known as gi.

FASHION SHOW AND CLOSING PARTY

The Fashion Show celebrated how people with PH conceal or highlight their oxygen cannulas, mobility devices and medication pumps. Emceed by Doug Taylor and Nicole Creech, participants modeled outfits in four categories: formal wear, PH pride (zebra print and periwinkle), sports and superheroes. After the fashion show, attendees celebrated with dancing, games and photo booths.

At previous PHA conferences, Jackson participated in the fashion shows. He came up with the idea to wear a karate gi for PHA 2022 with his mom, Jayna, who used her Cricut to customize the gi with PH-centric designs.

Gwendolyn Brown, a PHA support group leader and PH patient from Cleveland, Ohio, rocks the outfit she hand made for the PHA 2022 Fashion Show.

CLOSING CELEBRATION

Sunday morning, PH advocate Stephen Carter-Hicks performed two songs during the closing brunch: “You’ll Never Be Alone” by Gerry and the Pacemakers and “Keep Hope Alive,” a song originally composed for him to sing at PHA 2020.

As Stephen relayed lyrics of never giving up and paving a path for the future, audience members hung on to every word.

“I was in tears with both of his songs,” Hope said.

Stephen Carter-Hicks brings down the house at the closing ceremony.

PHASSOCIATION.ORG 23

NEWS

NEWS

7 Volunteers Recognized for Outstanding PH Service

S

even remarkable people received Outstanding Member awards June 11 at the PHA 2022 International PH Conference and Scientific Sessions in Atlanta.

The awards recognize service to the PH community and PHA through volunteer efforts, including patient/caregiver support, advocacy, promotion of quality patient care, and advancing PH research.

OUTSTANDING ALLIED HEALTH PROFESSIONAL: FRAN ROGERS

Fran Rogers, CRNP, is nurse practitioner and clinical coordinator at Temple University’s pulmonary hypertension/CTEPH program.

She has a Master of Science in nursing from the University of Pennsylvania and has been active in PHA and the PH Professional Network (PHPN) since 2007. She was PHPN vice chair in 2013 and PHPN Symposium Committee chair in 2015. Fran has been a member of the PHPN Executive Committee Leadership for six years and is the immediate past president. She has been a speaker and poster presenter at PHPN symposiums and PHA conferences, a support group leader and PHA fundraiser. Fran has been cocaptain of Team Temple Health for the O₂breathe Walk Philadelphia for several years.

Meet the winners JULIE PATON HENDRY MEMORIAL SCHOLARSHIP: BETTY LOU WOJCIECHOWSKI

Pulmonary arterial hypertension has affected Betty Lou Wojciechowski for 40 years. Her husband Jerry and all four of their children were diagnosed with the disease. Today, her daughter Michelle and son Mark receive triple therapy. Sadly, her husband and sons Michael and Matthew died from PH. Betty Lou served on the PHA Board of Trustees for 20 years and has been a support group leader, consultant and PHA fundraiser, raising more than $400,000 for PAH research.

Today, Betty Lou lives in Southern California, where she retired from teaching elementary school after 35 years. She continues to advocate for the PH community.

24 PATHLIGHT

trials related to PAH and studies of physical activity in people with PH are funded by the National Institutes of Health. He chaired the initial steering committee of the PHA Registry and serves on PHA’s Scientific Leadership Committee. Dr. Kawut is on the editorial board of the American Journal of Respiratory and Critical Care Medicine and an associate editor at the European Respiratory Journal.

He is the director of pulmonary hypertension/pulmonary vascular disease and at the University of Pennsylvania’s Perelman School of Medicine.

OUTSTANDING YOUNG PH CITIZEN: JACKSON WALL

PHA volunteers pose with their Outstanding Member Awards. From left, emcee Doug Taylor, Fran Rogers, Jackson Wall, Betsie Miklos, Sadie Ruiz, Steven Kawut, PHA President and CEO Matt Granato.

OUTSTANDING PHYSICIAN: STEVEN M. KAWUT

With clinical and research interests focused on pulmonary vascular disease and lung transplantation, Steven M. Kawut, M.D., M.S, is recognized as a leader in promoting excellent clinical care, research, education and advocacy on behalf of PH patients. Dr. Kawut’s clinical

Jackson Wall was diagnosed with PAH when he was 14 months old. He is on triple therapy and has been on subcutaneous remodulin since he was 19 months old.

Jackson has always jumped at the opportunity to tell people about PH and his pump. At age 5, he gave an impromptu speech at a PHA event. When he was 7, he was featured in a PHA Classroom video. He also helps his family host an annual golf tournament, where speaks about his PH journey.

OUTSTANDING PH CITIZEN: CHLOE TEMTCHINE

Chloe is an award-winning singer, songwriter, speaker and the creator of “Super Brave,” an interview series that features kids and adults living with chronic illnesses. After she was diagnosed with PH and pulmonary veno-occlusive disease, she survived on oxygen for years, despite being given little time to live. Twelve years later, Chloe went into cardiac arrest, which put her in a coma and on life support until she received a lifesaving, double-lung transplant. Chloe performed her song “Be Brave” at PHA 2016 International PH Conference and Scientific Sessions.

OUTSTANDING CAREGIVER: SADIE RUIZ

Sadie Ruiz is a warm-hearted caregiver to her mother Monica Sanchez. Sadie has embraced this role since she was 6 years old, when her mother was diagnosed.

Sadie cares for her mother by sorting weekly medications; advocating and spreading awareness; helping do her hair and get dressed on days she can’t do so independently; draining subcutaneous sites; or making her mom laugh. Sadie graduated from California State Polytechnic UniversityPomona in 2020 with a bachelor’s degree in psychology.

OUTSTANDING PHA SUPPORT GROUP LEADER: BETSIE MIKLOS

Betsie Miklos is a long-term PH survivor, diagnosed with severe idiopathic PAH in April 2010.

During the PHA 2012 International PH Conference, she met and connected for the first time with other PH patients. After returning home, she re-activated the Northern Virginia PHA Support Group. As leader of the support group, she has helped patients and families realize positive futures while living with PH. When Betsie learned that PHA wanted to establish a patient registry, she felt her background in technology might be helpful.

Since then, she has been involved in the work of the PHAaccredited PH Care Centers and is a member of the PHCC board of directors.

PHASSOCIATION.ORG 25

FEATURE

FEATURE

Breathing Easier With New Lungs

Holly Szmutko celebrates the anniversary of her transplant.

BY HOLLY SZMUTKO

HOLLY SZMUTKO of Valparaiso, Indiana, received a double-lung transplant in May 2021. She shares her transplant journey as she celebrates one year with new lungs.

B

efore my transplant, I physically felt awful. I was on a portable ventilator that was giving me a lot of oxygen. My health was poor, and I found it difficult to do anything. I received my COVID-19 vaccines prior to transplant, and I was anxious to

get the call for my new lungs. I wanted to feel better, and I wanted to get rid of the portable ventilator.

Recovery from a double-lung transplant is tough.

I can’t express how important it is to keep your body as strong as you can. I did a lot of home physical therapy to keep my muscles strong. It helped in the healing process.

The first year has been full of ups and downs. I have had several roadblocks, including acute cellular rejection, when cells of the immune system attack the donor lungs. I didn’t have rejection symptoms, but the rejection showed up on the biopsy from the bronchoscopy. For three days, I received high doses of IV steroids.

During that time, I was on insulin and had to add another blood pressure pill.

I also had a sternal plate inserted to permanently hold my bones together.

That was a painful surgery.

I’ve also had gastrointestinal, medication intolerance, esophageal and sickness issues, as well as blood transfusions. My esophagus was severely inflamed and I had to have a hernia repair. I also needed surgery to remove a hematoma, or blood that pools outside the blood vessels, after the transplant. When you’re immunocompromised, surgeries can be hard. I had pneumonia early on, which was tough. I often was in the hospital and emergency room.

POSITIVE OUTLOOK

Honestly, I just roll with the punches and do whatever it takes. Despite all the challenges, my spirit remains positive. I have overcome most of the issues, including the rejection.

The best part of having a transplant is breathing with no assistance. I was off oxygen immediately, but it made me nervous. So I stayed on one to two liters for a few days to wean off.

Holly receives her first COVID-19 vaccine before her transplant surgery.

Holly meets with former Rep. Pete Visclosky (D-Ind.).

26 PATHLIGHT

I sometimes feel like I should still have that oxygen, but I don’t need it. My oxygen saturation stays in the upper 90s.

It was weird at first. It took me a day or two getting used to breathing with the new lungs. I often breathe deep because I can. It feels good!

I wish I knew who my donor was.

I cannot express the thanks that I feel toward them. I hope to be in contact with their family one day, but I won’t

pressure them. I sent a letter and hope to hear back one day. They lost someone they loved for me to be here.

I know that they know how thankful I am for my gift of life.

STAYING HEALTHY

I adhere to restrictions, medications and overall wellness. I didn’t get this transplant to ruin it; I got this transplant to live life and honor my donor.

PHASSOCIATION.ORG 27

FEATURE

FEATURE

Donor Profile: Supporting Research and Awareness MIKE LENTZ of Ponte Vedra Beach, Florida, became involved in the Pulmonary Hypertension Association (PHA) after his wife Maureen’s death. He raises money, participates in support groups and serves on the PHA Finance and Development committees.

BY MIKE LENTZ

P

HA has become a passion for me. For a long time, I was looking for something to really get involved with.

In the past, I had always been busy with work, raising a family, travel, etc.

As I enter the later years in life, I have a little more time on my hands. After watching what my wife Maureen went through for five and a half years, and ultimately losing her, I made my choice to make PHA my primary mission.

Although I have twice survived cancer, it’s different when you lose someone you love to a disease such as PH. I support PHA with my time and money because there are so many unanswered questions about PH. If my children choose to support cancer research in my honor in the future, that is their choice, but I have settled on PHA. My wife Maureen was diagnosed with idiopathic pulmonary hypertension (PH) in 2012. In hindsight, Maureen had earlier signs of PH; we just didn’t know it.

We had several discussions with our medical team to try to determine the root of the issue as there were no known hereditary issues or inherent causes. None were ever identified.

28 PATHLIGHT

The Lentz family at Chihully Gardens in Seattle in September 2016.

Maureen went from being a high-energy, fun-loving person to someone who had difficulty taking a breath.

When Maureen was eventually put on oxygen, we thought that life was over. We had to get used to having the oxygenator in our room running every night, but it soon became a way of life for us. We loved to travel, so taking eight extra portable oxygenator batteries for overnight flights to Ireland became normal for us.

We were determined to live life as normally as possible while adjusting to the new things we needed to do for her health. We did that, but on December 20, 2017, Maureen passed away. We scattered her ashes along the beach in Ireland we loved so much. PH stole my partner of 36 years and the mother of my two children.

The Pulmonary Hypertension Association (PHA) has helped me in my grief by introducing me to wonderful people, including those with the Jacksonville Support Group. For the past four years, I have been very involved with the group, which supports patients and caregivers.

I also became involved with PHA’s monthly bereavement telephone support group. I offer my perspective and experience as a caregiver. In 2019, I attended a PHA Board of Trustees meeting in Washington, D.C. I met several board members, as well as doctors and nurses who focus on PH, and patients. As a member of PHA’s

Above: Mike, Conner and McKenzie at the British Open in Portrush, Northern Ireland, in July 2019. Below: Colleen Brunetti, Matt Granato and Mike at PHA 2022.

Finance and Development committees, I work with PHA leadership on budgets, finance and awareness.

My contributions are small compared to the big picture of what is necessary. But my volunteerism and donations give me great pleasure and peace. I know

that I can play a part in the research and development of a cure for PH, as well as raising awareness.

My hope is that perhaps someone in the future will not have to go through what Maureen did.

I will never, ever forget Maureen or quit thinking about her. It is my life mission to do what I can, whether it’s through donations, being on boards or being a good support group member.

I want to help others fight this dreadful disease. If we can make some inroads on a cure, or continue the journey of extending lives, and I can play a part in that process, I will consider my involvement with PHA a success.

Help continue PHA’s critical work to provide patient support and services and fund PH research.

PHAssociation.org/donate

PHASSOCIATION.ORG 29

ADVOCACY

ADVOCACY

review your plan options, the Patient Advocate Foundation offers services for people with serious or chronic illnesses. Call 800-532-5271 or visit patientadvocate.org/connect-with-services/case-management-services-and-medcarelines.

Thanks to Janssen Pharmaceuticals for its 2022 support of PHA’s Treatment Access Program.

Open Enrollment: It’s Not Too Early To Weigh Insurance Options

E

very health insurance plan has an open enrollment period to review your health insurance benefits and make changes for the upcoming year without a penalty.

It’s especially important for people with pulmonary hypertension (PH) to review your plan and note changes your insurance company might be making. If you take oral medication, pay attention to the drug formulary for the upcoming year. A formulary lists what drugs a plan covers and how much patients are responsible for.

Formularies change frequently.

Dates to know MARKETPLACE

In most states, the open enrollment period for the individual health insurance marketplace begins Tuesday, Nov. 1. To get coverage that begins Jan. 1, 2023, the last day to enroll is Thursday Dec. 15, 2022.

However, many states have extension periods, so check your state’s website.

Visit healthcare.gov to learn more or apply for Marketplace insurance plans.

Find a list of state-specific deadlines at obamacarefacts.com/obamacareopen-enrollment.

30 PATHLIGHT

Watch for Our Webinars Have questions about insurance? Tune in to PHA’s open enrollment webinars in October. PHA’s Jaeger Spratt will host the first webinar and Danielle Burkett of Duke University Hospital will present the last three.

Danielle is a certified medical assistant for Duke’s Pulmonary Vascular Disease Center, working with insurance companies and specialty pharmacies to get PH

Don’t miss out In 2020, more than 11 million Americans were eligible for Marketplace financial assistance and didn’t receive it. If you’re enrolling in a Marketplace healthcare plan, check whether your individual or household income level qualifies you for premium tax credits or cost-sharing reduction subsidies. Premium tax credits are available to those with annual incomes up to 400% of the federal poverty level.

MEDICARE

Medicare recipients can join, switch, or drop a plan Oct. 15 through Dec. 7. If you’re enrolled in a Medicare Advantage plan, you can switch plans or back to original Medicare within between Jan. 1 and Mar. 31. Visit medicare.gov/plan-compare to learn about various Medicare plan options and determine which plan is best for you.

MEDICAID AND CHILDREN’S HEALTH INSURANCE PROGRAM (CHIP)

Enrollment is year-round for Medicaid and CHIP plans. Eligibility varies by state and often depends on income level, age, disability and other factors, such as whether an applicant is pregnant or has children. Learn more at healthcare.gov/medicaid-chip.

EMPLOYER AND COMMERCIAL PLANS

If you receive insurance through your employer or private entity, check your plan details or ask your human resources department for enrollment dates. Review your plan at the appropriate time to stay apprised of changes to your coverage.

If you’re buying health insurance for yourself outside of your state’s health insurance marketplace, be alert for seemingly inexpensive plans that aren’t. Many of these plans place responsibility for most costs on patients or don’t cover essential benefits.

Have questions about open enrollment or choosing your benefits plan? Check out PHAssociation.org/ patients/insurance-and-treatmentaccess. For one-on-one support to

medication approved for her patients.

She also helps patients secure financial assistance to their medications.

Webinar topics: • Oct. 6: Intro to Open Enrollment • Oct. 13: Medicare Overview • Oct. 20: Medicare Tips and Troubleshooting • Oct. 27: Ask the Experts

PHA Advocates Drive Support for Safe Step Act

T

hanks to the Pulmonary Hypertension Association (PHA) and PHA advocates, the Safe Step Act now has increased sponsorship in the House of Representatives and Senate.

The legislation, known as House Resolution 2163 and Senate bill 464, would help patients get the exact medicine their doctors prescribed, rather than having to try less expensive treatments first. The steps are designed to save money for insurance companies. However, the delays can cause negative health outcomes for people with complex health conditions like pulmonary hypertension (PH).

In June, advocates pushed for the bipartisan bill to receive a committee hearing and mark-up. An advocacy challenge at PHA 2022 International

PH Conference and Scientific Sessions urged the PH community to send 500 messages to Congress calling for a vote on the Safe Step Act this year.

Surpassing the goal, the community sent 829 messages to 198 legislative offices. The messages came from people in 42 states, plus Washington, D.C., and Puerto Rico.

In May, PHA advocates met with their legislators’ staff for World PH Day. The advocates urged lawmakers to support PHA’s legislative priorities, including the Safe Step Act. At least one member of Congress, Rep. John Larson (R-Conn.), co-sponsored the bill as a result of the meetings.

Monica Penaranda helped arrange legislative meetings for advocates in her state.

“I couldn’t be happier with how

our meetings went, especially with [Rep. Mark DeSaulnier]’s office,” said Monica, a support group leader and member of PHA’s Board of Trustees and Advocacy Committee. DeSaulnier, a Democratic representative from California, chairs the House Education and Labor committee, which is considering the Safe Step Act. Says Monica: If we speak out together, we can help our community.

We have the power to make a difference.”

To add your voice to PHA’s efforts, tell your own legislators how the Safe Step Act would affect you or your loved ones. Visit PHA’s Action Center at PHAssociation.org/advocate.

Or call 301-565-3004, x758 or email Advocacy@PHAssociation.org to learn how to get involved.

PHASSOCIATION.ORG 31

QUICKTAKES PHA Annual Report Available Online

T

he Pulmonary Hypertension Association (PHA) recently published its 2021 Annual Report. The report is available for the first time as a digital-only publication. The report reflects PHA’s achievements during the second year of the COVID-19 pandemic virus. Despite the challenges, the report acknowledges PHA’s proudly patient-focused, patientdriven history – and its impact and momentum into the future.

The PHA Annual Report celebrates the association’s strides to fulfill its mission to extend and improve the lives of those affected by pulmonary hypertension (PH). The report shows PHA’s impact through research, education, support and advocacy through stories of people with PH, caregivers and health care providers.

View the report at PHAssociation.org/accountability.

Join New Group for People with PH and HHT Do you have HHT? The Pulmonary Hypertension Association (PHA) created a new Facebook group with Cure HHT. The new group is for people with PH and hereditary hemorrhagic telangiectasia (HHT). The genetic disorder, also known as Osler-Weber-Rendu, causes blood vessel abnormalities. The abnormalities often cause excessive bleeding of the organs. The most common symptom is nose bleeds. HHT affects about 1.4 million people, according to Cure HHT. Learn more at PHAssociation.org/support.

‘Navigating Pulmonary Hypertension’ Wins EXCEL Award

T

he Pulmonary Hypertension Association won a silver EXCEL award for “Navigating Pulmonary Hypertension” from the Software & Information Industry Association AM&P Network. The EXCEL awards recognize excellence and leadership in association media, publishing, marketing and communications.

“Navigating Pulmonary Hypertension: A Guide for Newly Diagnosed Patients” is designed to help people with PH and their loved ones find answers, support and hope after diagnosis. The book includes resources, questions for health care professionals, and tips to connect with support networks and participate in research. It address day-to-day issues related to PH. Order your free copy of Navigating PH at PHAssociation.org/newlydiagnosed.

32 PATHLIGHT

HOW TO REACH US 301-565-3004 | FAX 301-565-3994 PHA@PHAssociation.org WEB PHAssociation.org TEL

EMAIL

CALENDAR OF EVENTS OCT. 6

NOV. 5

Webinar: Intro to Open Enrollment Online

Central California O₂breathe Walk

OCT. 8

The Parc Fresno

Philly O₂breathe Walk South Street Headhouse District

PHacing THE FUTURE

DAY

Monrovia (California) O₂ Breathe Walk

by

DAY

OCT. 13 Webinar: Open Enrollment Medicare Overview Online

NOV. 9

THURSDAY, OCTOBER 20

NOV. 17

Webinar: Open Enrollment Medicare Tips and Troubleshooting Online

Advocacy Day of Action Online

CTEPH Awareness Day Online

PHA thanks its national fundraising-event sponsors for their generous support:

NOV. 29 OCT. 21 Driving Fore a Cure

Giving Tuesday Online

Riverwood Golf Course Clayton, North Carolina

SEPT. 28-30, 2023

OCT. 27

PHPN Symposium Arlington, Virginia

Webinar: Open Enrollment Ask the Experts Online

NOVEMBER

DIAMOND

PLATINUM

JUNE 27-30, 2024 PHA 2024 International PH Conference and Scientific Sessions Indianapolis

PHA Awareness Month Online

VIRTUAL FUNDRAISERS Visit PHAssociation.org/pha- fundraising-events to find a fundraising event in your area.

QUESTIONS? Contact us at 240-485-0762 or events@PHAssociation.org.

PHASSOCIATION.ORG 33

PHA’S LEGACY OF HOPE To honor those who have included PHA in their estate plans or whose legacies have been realized, PHA created the Legacy of Hope Society. PHA is pleased to recognize the following members: Laura* and Rino Aldrighetti Alice A. Arnott* Sandra A. Awood* Dauna L. Bauer* Sylvia M. Becherer* Joan F. BennettSchenecker* Kris L. Best Gloria G. Blodgett* Dorothy E. Bradley* Mary M. Brady* R. J. Braun Roberta F. Browning* and Lee A. Broadbent Rita and Bruce Brundage Colleen Brunetti Stephen Carter-Hicks Colleen and Shawn Connor Jane P.* and Harold P. Cooper James F. Corbett* Nicole M. Creech Laura H. D’Anna Charles W. DeVier, III* Linda M. Feibel* Barbara T. Gamer Stacey Gausling* Franklin D. Gillespie* Tammy A.* and Dean S. Hazen Mary Jan Hicks Carl Hicks, Jr. Phyllis M. Hill* Jackie Holt Richard L. Horrocks Constance G. Ives* Terri L. Jakuboski* Stanley T. Jusinski Laura J. Kelly* Jamses Kenney Jessie Kohler-Wenninger Terri L. Kopp* Debbie L. and Mitchell Koppelman Frank D. Koppelman* Dee* and Walter Kruger* Gloria J. Lang* Marie and Ronald J. Levendoski

34 PATHLIGHT

Mary Jo* and Thomas Linnen* Sally Maddox* Bonnie and Michael D. McGoon Joseph W. Mihuc* Linda Miles* Karen S. Moody Larry D. Moody Pamela R. Morris Marjorie D. Mott* Joyce L. Mowrer* Pamela and Timothy O’Connor Dorothy M.* and Harry J. Olson* Theresa “Terry” E. (Cavanaugh) O’Reilly* Rita and Guy Orth Patricia R.* and Gerald D. Paton* Cynthia and John R. Pickles Jean D. Pitcher* Carol L. Powell* Frances A. Price Carol J. Posner* and Marc Priore Diane Ramirez James Ryan* Louise C. and Gene P.* Salvucci Judith and Edwin L. Simpson Kelley Skumautz Marcia and Jack Stibbs Helena M. Strauch* Douglas R. Taylor Frank A. Tobac* Martha and Carlos Torres Deborah J. and Roger K. Towle Carol B. Ungar Carol E. Vreim Daniel R. Walsh* Andrea and Stephen L. White * deceased members

Passages Since the Pulmonary Hypertension Association (PHA) began publishing Pathlight, “Passages” has provided a place to memorialize people with pulmonary hypertension who pass away. PHA extends its sympathy to the families and friends of these individuals and rededicates itself to its mission in their memory.

Edward Alexander Joy G. Allen Janice R. Amos Christopher Anderson Jeanette M. Aragon Suzanne M. Ball Andrew Barfoot Amy Behrendt Glenn S. Biederman Jack Bigbee William Blevins Dean E. Bridger Joanna L. Brown Mary H. Casper Jeanette C. Charlton Louise Donaldson Patricia L. Dunn Frederick W. Dynys Susan A. Fechtman Mandy Fisher Diane Flaherty Sarah L. Frost Karen Gabiner June M. Galinski Karen L. Gialle Robert Gillies Marian Glew Joan L. Godber Sylvia Goldman

Bettina Grae-Suppe Jamie L. Graham Jude Hanzo Cinnamon S. Heller Linda A. Hoffman Roanna J. Huerter Chrysta Hunter Terri L. Johnson Tina J. Johnson Devorah L. Katz Ron Kelley Tiffany A. Kindred-Lopez Rosemarie King Valerie Kisner Ron Kraske Carmen G. Lozada-Bruno Karen R. Madison Brenda Matherly Kenya McNaught Margaret A. Miller Marilyn A. Miller Pamela A. Muller Derrik D. Neal Betty B. O'Byrne Patrick B. O'Connor Patrick B. O'Connor Wendy Osborne Andria S. Overby Mike Pagano

John R. Parker Janet A. Pfeffer Patricia Ray Candy K. Rice Bette Robblee Kevin Roberson Linda A. Selig Rose M. Sims Ted Smith Shiloh W. Sniff Michael W. Snyder Jean N. Sparks-Kroner Peggy M. Starr Katherine A. Stevens Steven R. Stiffelman Micky D. Storie Paul A. Stracke Amy F. Taylor Martin Thomas Shannon N. Tischbein Howard Tomlin Grazyna Topolska Tara Townsend Jean Tremain Dorothy F. Washburn David B. Webster Phyllis White

Attention PH-COPD Patients

Help Help Advance Advance Research Research Learn Learn more more about about the the PERFECT PERFECT clinical clinical trial trial for for pulmonary pulmonary hypertension hypertension due due to to chronic chronic obstructive obstructive pulmonary pulmonary disease disease and and see see if if you you may may qualify qualify by by visiting: visiting:

PERFECTClinicalStudy.com PERFECTClinicalStudy.com

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The IMPAHCT Study is looking at an investigational medication for pulmonary arterial hypertension (PAH). ©2022 Aerovate Therapeutics, Inc. All rights reserved.