Pathlight - Spring 2022

A publication of the Pulmonary Hypertension Association

2022 // Volume 31 // No. 1

8 REASONS TO JOIN US AT PHA 2022 PLUS A Passion for PH Research Finding and Giving Hope AS A VOLUNTEER

‘Banding’ Together TO FIGHT FAMILIAL PH ART GALLERY PARTICIPANTS SHARE THE ART THAT HELPS THEM COPE

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. 1

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14

PHA 2022: 8 Reasons to Join Us in Atlanta

10 Ensuring Your Safety at PHA 2022

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 New Handout Addresses Contraception and Pregnancy 14 PAH Trial Participants Inspire Doctor’s Passion for PH Research

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16 Can You Benefit From Palliative Care?

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Find Answers

Learn Why

Get Talking

24 Family ‘Bands’ Together to Fight Heritable PH

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27 Join PHA’s Fight to End PH Therapy Barriers

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.

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28 Finding and Giving Hope as a Volunteer and Support Group Member 30 Living Each Day to the Fullest in Mexico City

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

Register today at PAHregister.com or call 1-888-370-8111 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.

18 Art From the Heart

ON OUR COVER 24

This painting by Bill Kolm of Oklahoma is an example of the works you might find in the PHA 2022 Art Gallery. Bill and other artists affected by PH share their stories to reflect this issue's theme, "Hope."

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.

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

35 Passages Knowledge. Understanding. Empowerment.

PHASSOCIATION.ORG 3

PUBLISHER

BOARD OF TRUSTEES

Matt J. Granato President & CEO

Colleen Brunetti, M.Ed., C.H.C., chair Tony Lahnston, chair-elect/treasurer Karen A. Fagan, M.D., immediate past chair Nicole Creech, secretary Matt J. Granato, LL.M., MBA, President and CEO, ex officio

STAFF Linda Busche Editor-in-Chief Karen Smaalders Vice President, Communications and Marketing

Trustees-at-Large

TEL: 301-565-3004

Cheri Abbott, R.N., CCRP Frank Cann Murali M. Chakinala, M.D., FCCP Colleen Connor Ramona Doyle, M.D., M.Sc. Anna R. Hemnes, M.D. Kimberly Jackson, R.N., B.S.N. William Jansen Mitch Koppelman, Ph.D. Michelle Ferdinand Liu, M.D., M.P.H., FAAOA Ronald J. Oudiz, M.D. Monica M. Penaranda Diane Ramirez Traci Stewart, R.N., M.S.N., CHFN Doug Taylor Matt Wall Jessie Kohler Wenninger, Esq. Melisa A. Wilson, D.N.P., APRN, ACNP-BC

FAX: 301-565-3994

Emeriti ex-officio

WEB: PHAssociation.org

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

CONTRIBUTORS Nadine Al-Naamani, Kathy Anderson, Seker Anderson, Sylvia Bandyke, Rhonda Cramer, Tonya Hall, Lauren Intrieri, Bill Kolm, Sue Liss, Adriana Posada, Abby Sickles, Jaeger Spratt, Sara Tyghter, Melissa White. Design: Mary Beth Ramsey. PHA 2018 conference photos by Kathleen Sheffer.

CONTACT 8401 Colesville Road, Suite 200 Silver Spring, MD 20910

EMAIL: PHA@PHAssociation.org

SUPPORT LINE

SCIENTIFIC LEADERSHIP COUNCIL Murali M. Chakinala, M.D., FCCP, chair Anna R. Hemnes, M.D., chair-elect Ronald J. Oudiz, M.D., immediate past 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. Kelly Chin, M.D. Vinicio A. de Jesus Perez, M.D., FCCP, FAHA, ATSF 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. Kristin B. Highland, M.D., MSCR Steven Kawut, M.D., M.S. Tim Lahm, M.D. Deborah J. Levine, M.D. Lana D. Melendres-Groves, M.D. John J. Ryan, M.D., M.B., B.Ch., B.A.O. Jeffrey S. Sager, M.D., MSCE Oksana A. Shlobin, M.D., FCCP Thenappan Thenappan, M.D. Corey E. Ventetuolo, M.D., M.S. R. James White, M.D., Ph.D. Timothy L. Williamson, M.D. Delphine Yung, M.D. Liaisons Cheri Abbott, R.N., CCRP Kimberly Jackson, R.N., B.S.N.

800-748-7274

Honorary

Distinguished Advisors

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

Carl Hicks

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.

President & CEO Matt J. Granato, LL.M., MBA

Submissions to Pathlight are welcome.

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

4 PATHLIGHT

PH PROFESSIONAL NETWORK EXECUTIVE COMMITTEE Cheri Abbott, R.N., CCRP, chair Kimberly Jackson, R.N., B.S.N., chairelect Fran Rogers, M.S.N., CRNP, immediate past chair Loida A. Johnson, CRNP Tisha Kivett, R.N., B.S.N. Melissa Magness, M.S.N., APRN, CNP-AC Susie McDevitt, M.S.N., ACNP-BC

LETTER from the

CHAIR L

ike it does for many people, spring reminds me of hope and new possibilities.

Here in New England, we are getting odd warm days that remind us spring is coming. But it’s mostly still freezing, making spring feel so far away. With the wild couple of years the world has had, hope feels like that too sometimes. Just around the corner and sometimes quite out of reach.

Be it from world events, personal struggles, or PH throwing a curveball, it’s OK if you’re struggling to hold on to hope. Here at the Pulmonary Hypertension Association (PHA), offering a lifeline in the hard times is what we do, and we’re here for you. In fact, it’s our vision, as we are “Empowered by hope.”

I’ve always loved that line. Hope is indeed something that empowers us. It keeps us going when things are tough.

It spurs us to take action and do hard things. Hope is a light in the dark.

Sometimes we need to create our own hope; sometimes it’s our turn to offer it to others; and sometimes we need to lean on someone else and be pulled along by their hope for a little while. It’s all a part of the journey.

This issue of Pathlight is all about creating and finding hope with pulmonary hypertension (PH). My wish is that you find some nuggets of hope of your own, new ideas to brighten your path, and inspiration to keep pushing you forward. Here is just a sampling.

In “Living Each Day to the Fullest in Mexico City,” longtime PHA volunteer Adriana Posada shares how she gives hope to others. She is a PHA PHriend and a support group leader in Mexico City. She also is an advocate for treatment access and financial assistance for people with PH in Mexico.

In “Art from the Heart,” participants in PHA 2018’s first art gallery discuss how art helps them cope with PH, the

pandemic and other stressors. Bill Kolm, Sylvia Bandyke and Kathy Anderson share their stories. PHA 2022 International PH Conference and Scientific Sessions in Atlanta will feature an art gallery of works primarily by people with PH, so you’ll have a chance to share your art through hope too!

In “PAH Trial Participants Inspire Doctor’s Passion for PH Research,” we hear from Nadine Al-Naamani, M.D., who was inspired to become a doctor after growing up in Beirut during the civil war in Lebanon. Today, she treats people with PH and other serious lung conditions at Penn Medicine in Philadelphia, as well as conducts PH research.

In “Family ‘Bands’ Together to Fight Heritable PH,” we meet Rhonda Cramer, who was 15 when she lost her mother to PH. Fifteen years later, Rhonda was diagnosed with heritable PH. In “Finding and Giving Hope as a Volunteer and Support Group Member,” Sue Liss of Chicago shares how she felt hopeless at the beginning of her diagnosis. Sue found hope by leaning on her support system and now volunteers for the PHA patient support line. “Fourteen years later, I am still going strong. I believe that gives hope to callers,” she tells us.

All of these stories, and so many more, serve to show us we can find and create hope in even the most challenging situations.

Empowering, indeed.

Colleen Brunetti, M.Ed., C.H.C. Board of Trustees Chair, Pulmonary Hypertension Association

PHASSOCIATION.ORG 5

PHA 2022

An online classroom of free videos about pulmonary hypertension to help you live your best life with PH.

REASONS TO JOIN US IN ATLANTA The Pulmonary Hypertension Association (PHA) looks forward to welcoming the pulmonary hypertension (PH) community to its 14th conference. PHA 2022 International PH Conference and Scientific Sessions, set for June 10-12, features the same inspiring networking and topical learning opportunities attendees have come to expect since 1994.

P

HA 2022 offers two options to participate: the in-person event in Atlanta and live-streamed highlights for those who can’t attend in person. Some events won’t be available on the live stream.

PHA conferences provide expert information about PH care and treatment. In addition to hearing first-hand from experts, attendees can interact with health care professionals, meet others with PH, participate in research studies and celebrate with the community.

For health care professionals, the Scientific Sessions offers opportunities to hear patient perspectives and learn about the latest advancements in PH research, treatment and care management.

Whether you’re a first-time attendee or repeat participant, don’t miss these memorable features of PHA 2022:

1 Watch these newly posted videos at PHAssociation.org/Classroom: • • • •

Drug Discovery from Lab to Consumer (Part 1) Drug Discovery from Lab to Consumer Q&A (Part 2) Understanding the PH Drug Pipeline (Part 1) Understanding the PH Drug Pipeline (Part 2)

AWARDS GALA

Celebrate committed patients, caregivers and health care professionals at the PHA 2022 Outstanding Member Awards dinner. The awards recognize exemplary dedication and service to the PH community and PHA through advocacy, fundraising, promoting quality patient care, advancing PH research and other volunteer work. Nominations come from patients, family, friends and health care professionals and an awards committee selects the winners.

PHA President and CEO Matt Granato will host the event, emceed by Doug Taylor, chair of the Conference Planning Committee. Doug, who was diagnosed with PH in 2007, is a long-time PHA support group leader.

PHASSOCIATION.ORG 7

PHA 2022

PHA 2022

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FASHION SHOW AND NETWORKING RECEPTION

Cheer your fellow attendees as they put their best foot forward on the conference catwalk. Participants show how infusion pumps/tubes or portable oxygen cannisters don’t have to compromise style.

Stay afterward for a networking reception with a cash bar and delectable desserts. Interested in participating in the fashion show? You’ll have an opportunity to sign up after you register.

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lives of people affected by PH. Visit PHAssociation.org/PHA2022 to submit artwork by April 8.

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WALL OF HOPE AND REMEMBRANCE

Remember lives lost to PH, or celebrate loved ones living with PH. Stop by any time during PHA 2022 to place your remembrance message on the wall.

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RESEARCH ROOM

Patients and caregivers can help advance PH research by sharing data and blood samples with researchers. Sign up to participate in a study during the registration process.

ART GALLERY FUNDRAISER

IDEAS for FAMILY FUN IN

ATLANTA

Explore a world under the sea

Try these city highlights that are sure to be a big hit.

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PHA 2022 breakout sessions will feature panel discussions and presentations by patients, caregivers and health care professionals. Sessions aim to help attendees gain a deeper understanding of the disease, treatment and care, life with PH and more. PHA 2022 will include a Spanish-language track. Selected sessions will be available through the PHA 2022 livestream for those who can’t attend in person.

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SUPPORT GROUPS

Connect with others living with PH from every part of the country during special PHA 2022 support group meetings.

Get a sense of togetherness and support as part of your conference experience.

The PHA 2022 art gallery highlights attendees’ artistic talents [See cover story, Page 18]. Proceeds support PHA’s mission to extend and improve the

LOOKING FOR FUN THINGS to do before or after PHA 2022 International PH Conference and Scientific Sessions? If you’re attending the in-person event, you’ll be in the right place: Atlanta was named Best in Travel 2022 by Lonely Planet.

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PATIENT AND CAREGIVER EDUCATION

Clayton Malquist/unsplash.com

1

Catch an Atlanta Braves home game as they play the Pittsburgh Pirates.

I Visit mlb.com/braves for tickets

Ian Schneider/unsplash.com

Explore a world under the sea at the Georgia Aquarium.

Visit its newest gallery, Sharks!

Predators of the Deep, at one of the country’s largest aquariums.

Plus, see whale sharks, alligators, penguins, sea otters and more.

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I Visit georgiaaquarium.org/tickets

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Health care professional can earn up to 14.5 hours of continuing education credit by attending Scientific Sessions and visiting the Poster Hall.

REGISTER► PHAssociation.org/PHA2022

JHVEPhoto/ stock.adobe.com

Atlanta is an epicenter of civil rights history and culture.

Visit the National Center for Civil and Human Rights to learn about our nation’s history and the importance of equal rights for all.

Through a variety of immersive and interactive exhibits, you can learn about the changemakers who helped shape our history and policies.

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SCIENTIFIC SESSIONS AND POSTER HALL

Mingjun Liu/unsplash.com

As the headquarters of the Coca-Cola Company, no trip to Atlanta is complete without a trip to the World of Coca-Cola.

Experience the fascinating story of the world’s most famous beverage in a dynamic, multimedia attraction.

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I Visit worldofcoca-cola.com

I Visit civilandhumanrights.org 8 PATHLIGHT

PHASSOCIATION.ORG 9

PHA 2022

PHA 2022

Ensuring Your Safety at PHA 2022

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s PHA 2022 International PH Conference and Scientific Sessions approaches, the Pulmonary Hypertension Association (PHA) continues to update pandemicrelated safety precautions for the June 10-12 event in Atlanta.

All PHA conference attendees, volunteers and staff must provide proof of vaccination to attend PHA 2022. Attendees over age 5 must show vaccination proof when they register.

Attendees must have received two inoculations (or one in the case of Johnson & Johnson) and a booster of the Pfizer or Moderna vaccine by May 15. International attendees can show

TAKE ADVANTAGE OF

DISCOUNTED MEMBER RATES For PHA 2022 I

t’s not too late to register for PHA 2022 International PH Conference and Scientific Sessions. Before you register for the June 10-12 event, make sure your Pulmonary Hypertension Association (PHA) membership is up-to-date so you can take advantage of member-only discounts and benefits, such as special registration rates and patient and caregiver scholarships.

10 PATHLIGHT

Discounted registration fees apply to the event in Atlanta and the live-streamed highlights for those who can’t attend in person. Registrations are refundable until May 18.

For patients and caregivers, the $15 annual PHA membership fee saves at least $85 on PHA 2022 registration. Conference scholarships include registration fees and money toward travel and lodging for: G Adults with PH and companion/caregivers who have financial need and haven’t previously received conference scholarships.

G Pediatric patients (under 18 years) with a parent/ caregiver who have financial need.

G International scholarships for leaders of non-U.S. PH associations.

G PHA Support Group Leaders and PHA PHriends volunteers. (Covers registration costs only.)

Scholarships are awarded first come, first served.

proof of vaccines approved in their countries.

When checking in at the conference, attendees must show proof of a negative COVID-19 test taken within 48 hours.

Face masks will be required for all public spaces, regardless of vaccination status, unless eating or drinking.

Attendees are encouraged to practice social distancing while in the event space.

The Hyatt Regency Atlanta will require all hotel staff working the event to wear face masks at all times and gloves when handling food and beverages. The hotel will have a designated PHA check-in line at the

front desk. There will be a plexiglass partition on peak arrival day.

Child care staff will be vaccinated and masked in the kids room.

Local hospital and pharmacy information and will be provided to all attendees. PHA will share updates as PHA 2022 approaches.

Attendees who aren’t ready or willing to travel can watch select sessions from the comfort of their homes. Scientific Sessions will not be streamed.

PHA will continue to monitor the situation and evaluate COVID cases in the country and around the Atlanta area up to the day of the conference.

Applicants should apply for scholarships then wait to hear from the PHA Scholarship Committee before registering for PHA 2022. Patient memberships must be valid through June 12, 2022, (the end of PHA 2022) to apply for scholarships or receive the membership conference rate.

PHA established the conference scholarship program in 2006 to further ease the financial burden of registration fees, which are heavily subsidized through PHA. PHA 2022 offers three days of educational programming and networking — empowering attendees to manage their health and live longer, better lives. The scholarship program is intended to provide people recently diagnosed with PH and/or first-time attendees the opportunity to experience this life-changing event.

If in-person events become unsafe, PHA is prepared to pivot to a fully virtual meeting with the same quality education and patient support we are known for. A fully virtual meeting would take place at a later date.

QUESTIONS? Contact meetings@PHAssociation.org.

►JOIN

PHA or renew your membership at PHAssociation.org/join. ► REGISTER

FOR PHA 2022 or apply for a scholarship at PHAssociation.org/PHA2022/register.

PHASSOCIATION.ORG 11

HEALTH MATTERS

PHA 2022

PHA CONFERENCES

Connecting the Community Since 1994

New Handout Addresses Contraception And Pregnancy

I

n 1994, the United Patients Association for Pulmonary Hypertension (UPAPH) was a fledgling organization creating important connections for people who had never met anyone else with their rare condition.

When UPAPH, which later became the Pulmonary Hypertension Association, launched its first International Conference, it drew 200 people to Georgia.

Of them, 68 were people with PH, 32 were health care professionals, and the rest were family members, friends and caregivers. The event drew attendees from the United States, Canada, the United Kingdom and Australia.

The conference aimed to provide patients with first-hand information from experts. Another goal was to give people with PH opportunities to interact with health care professionals and help them understand PH from patients’ perspectives.

The theme was “Hearts and Hands for the Future.”

The conference also aimed to help connect health care professionals and patients with others in similar circumstances or who had similar interests.

Many longstanding Conference features began at PHA 1994, including the Research Room and the Journeys presentation, where pairs of patients and health care professionals relate their PH journeys.

D

o you have questions about the risks of pregnancy and pulmonary hypertension (PH)? Ask your PH team about the Pulmonary Hypertension Association (PHA)’s latest Patient Education Clinic worksheet.

PHA PATIEN

T EDUCATI

ON CLINIC

SERIES

s

Method Birth Control

ds are more effecti control metho n. Some birth nary hypertensio partner. n with pulmo risk for wome for you and your considered high determine the best choice Pregnancy is to PH specialist Least Effective Talk with your From Most to

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. You might

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Progesterone injections or d pills plus secon contraception method

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nent tubal ural risks of perma *Discuss proced medical professional. sterilization with

of contracept

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time.

Notes

Non-permanen contraception

Permanent sterilization

“PH, Pregnancy and Contraception” addresses lifethreatening complications that can occur during pregnancy or shortly after birth. It also discusses how pregnancy can worsen PH symptoms and threaten the health and survival of the child.

The document covers birth control options and includes a chart of most to least effective contraceptive options.

PH Professionals: Active members of PHA’s PH Clinicians and Researchers and PH Professional Network can download the document to share with their patients.

The handout is available through PHA’s PH Practice Library, which houses PHA’s Patient Education Clinic Series. The series includes documents that can printed to aid discussions with patients in clinic.

Male condom

cervical Diaphragm or icide) cap (with sperm

reversible Long-acting is effective and contraception dered safest for generally consi people with PH.

using recommend PH specialists first aception for additional contr procedure. after three months

be used injection can be Progesterone one pills must alone. Progester contraception d used with secon condom, male as method, such spermicide or with ragm diaph spermicide. cervical cap with

OR legs and lungs. clots in your the risk of blood can increase rings, which es or vaginal al as pills, patch status. This materi in estrogen, such ed. particular health ds that conta mend you and your ceptives, or metho method, aren’t recom is applicable to g | © 2021 contra ation ion.or onal dary inform sociat this | PHAs ut a secon combined horm about whether ship Council. methods are diaphragms witho health care team rk and Scientific Leader Less preferable as condoms or . Talk to your ds alone, such Professional Netwo for medical advice Barrier metho Association’s PH be a substitute to ed tension design Hyper is not of the Pulmonary Clinic Series t Education ion committees The PHA Patien and approved by the educat ed has been review

Visit PHAssociation.org/membershipcontent/ph-practice-library.

12 PATHLIGHT

PHASSOCIATION.ORG 13

RESEARCH

RESEARCH

PAH Trial Participants Inspire Doctor’s Passion for PH Research NADINE AL-NAAMANI, M.D., was inspired to become a doctor after growing up in Beirut during the civil war in Lebanon. She knew then that she wanted to help people around her. Today, she treats people with pulmonary hypertension (PH) and other serious lung conditions at Penn Medicine and conducts PH research.

She is an assistant professor of medicine at University of Pennsylvania Hospital, a Pulmonary Hypertension Association-accredited PH care center.

BY NADINE AL-NAAMANI

Left: Nadine Al-Naamani on the job.

Opposite: Dr. Al-Naamani relaxes with her three daughters.

14 PATHLIGHT

I

was always fascinated by pulmonary disease, ventilatory mechanics and pulmonary hemodynamics. After a clinical elective at Columbia-Presbyterian Hospital, I joined the lab of Steven Kawut, M.D., as a postdoctoral research scientist. I led his first National Institutes of Health-funded clinical trial in pulmonary arterial hypertension (PAH).

I had little experience in PH prior to my work on that trial, but I quickly learned more about it. The trial gave me the opportunity to interact with people afflicted with this disease. I soon realized that I wanted to be part of the team to improve their lives.

To continue my training as a physician scientist, I repeated my internal medicine residency training in the U.S. and completed a pulmonary and critical care fellowship at Tufts Medical Center. Before coming to the U.S., I earned my bachelor’s and medical degrees at American University of Beirut and completed a three-year residency in internal medicine at the American University of Beirut Medical Center.

At Tufts, I gained further clinical expertise in PH from leaders in the field, including Nicholas Hill, M.D., Ioana Preston, M.D., and Kari Roberts, M.D. I also continued to pursue my research projects.

After my fellowship, I completed a master’s degree in clinical and translational science at Tufts University before joining the University of Pennsylvania in 2016.

In 2017, I was lucky to receive the Aldrighetti Research Award for Young Investigators from the Pulmonary Hypertension Association (PHA), as well as an NIH career development award. The funding allowed me to dedicate time to conduct my PH research, which focuses on the association of body weight and obesity on clinical outcomes.

In December 2020, the Annals of the American Thoracic Society published the results of a study that I led on patients enrolled in the Pulmonary Hypertension Association Registry. The study found that about two-thirds of patients were overweight or obese. Overweight and obese patients with PH experienced worse quality of life and higher rates of hospitalization. The results highlight the importance of addressing specific issues to improve quality of life for people with PH who are overweight or obese.

When I’m not focused on my research or clinical work at the hospital, I like to unwind by spending time with my

three daughters and my husband. We love being outdoors whether we’re spending time on the beach or hiking a new trail in the Poconos.

I also enjoy cooking and baking with my daughters, and the COVID pandemic has provided us with a lot of time together at home to try out new recipes.

I am proud to be a member of the PH community and the PHA Registry steering committee. With the support of the PHA and other organizations that fund PH research, I am hopeful that we will be able to make a difference in lives of people with PH.

PHASSOCIATION.ORG 15

HEALTH MATTERS

HEALTH MATTERS

P

Can You Benefit From Palliative Care?

alliative care is specialized health care for people with a serious illnesses, such as pulmonary hypertension (PH). While some people receive palliative care toward end of life, these services are available for anyone with serious illnesses, at any stage of the illness.

Palliative care isn’t the same as hospice care.

Palliative care services aim to improve quality of life by providing relief from symptoms and stress caused by the illness. Palliative care combines a range of services tailored to patient and family needs: medical, nursing, psychological and social.

Consider a referral to palliative care when the time is right for you, says Traci Stewart, R.N., PH coordinator, University of Iowa Hospitals and Clinics. Even at diagnosis, palliative care has benefits to improve quality of life.

A palliative care team can help you manage PH throughout the course of your illness. The palliative care team partners with you and your family to provide support to achieve optimal quality of life. They will work with you to help manage shortness of breath, pain and everyday stresses of living with a serious condition like PH. Palliative care can help you:

• Navigate the healthcare system by coordinating care and financial assistance.

• Manage difficulty breathing, pain, anxiety.

• Set goals to enhance your quality of life.

• Access emotional and spiritual support.

• Receive support for children or family caregivers.

ACCESSING PALLIATIVE CARE

Talk to your doctor about palliative care as a part of your treatment plan. Your health care team can refer you to palliative care at any time — when it’s best for you and your needs, Stewart says. Patients and health care providers often don’t recognize the purpose of palliative care or its benefits, so referrals often are made late in the course of pulmonary hypertension, she says.

16 PATHLIGHT

Patients often receive palliative care referrals when admitted to the hospital, but referrals also are available in other health care settings, such outpatient clinics or in-home palliative nursing.

It’s important to find the setting that will best meet your needs, which can change over time, Stewart says.

PAYING FOR PALLIATIVE CARE

Most private health insurance plans cover palliative care. The coverage is similar to that for medical or hospital services, including copays. An increasing number of health insurance providers cover community and home-based palliative care as a supplementary benefit, according to getpalliativecare.org. Your pulmonary hypertension team can help you check your options.

Medicare and Medicaid also cover palliative care, sometimes through hospice care. Your options could vary, depending on whether you have Medicare parts A, B, C or D. Medicaid coverage for palliative care depends on your state. If you’re eligible for Medicaid, contact your state’s Division of Medicaid to learn your options.

Discuss costs and coverage with a social worker or financial consultant from the palliative care team. They can answer your questions and guide you to financial assistance resources.

SETTING GOALS

Living with PH might require lifestyle changes for you and your family. You and your family should have this important conversation to determine overall therapy and quality of life goals that meet everyone’s needs.

“Sometimes these conversations can be difficult to initiate,” Stewart says. “Palliative care can help patients and caregivers openly discuss what’s most important to them with their health care teams.

PHASSOCIATION.ORG 17

PHA 2022

Art from the

HEART

PHA 2022 International PH Conference and Scientific Sessions in Atlanta will feature an art gallery of works primarily by people with pulmonary hypertension (PH).

Three people who participated in PHA 2018’s first art gallery discuss how art helps them cope with PH, the pandemic and other stressors. Bill Kolm of Omaha, Nebraska; Sylvia Bandyke of Royal Oak, Michigan; and Kathy Anderson of Indianapolis; share their stories.

BREAKING OUT THE BRUSHES

Bill Kolm dabbled in painting in his teens and 20s but then life got in the way. Forty years later, Bill rediscovered his talent for painting after a chronic thromboembolic pulmonary hypertension (CTEPH) diagnosis. Now the Pulmonary Hypertension Association (PHA) support group leader paints to relax and create art for his friends and family.

In August 2011, Bill was diagnosed with non-Hodgkin’s lymphoma, a cancer that surrounded his lower spinal cord. Three years of chemotherapy caused blood clots in his lungs. After two years of pulmonologist visits, he was diagnosed with CTEPH, or Group 4 PH. Bill suffered from shortness of breath and no longer could garden, mow the lawn or do other activities he enjoyed. So he looked for something less stressful to keep himself busy.

“I still had some brushes, so after stocking up on acrylic paint and stretched canvases, I started painting again,” he says. “After a couple of small paintings, I realized I had improved from my early years, so I started using larger canvases.”

Bill joined his local PH support group after receiving a postcard about it. At his first meeting, he learned CTEPH could be cured through pulmonary thromboendarterectomy (PTE) surgery to remove the blood clots. Bill’s doctor sent his case to the University of California-San Diego, where Bill was confirmed as a candidate for PTE surgery. In August 2016, Bill received the surgery.

18 PATHLIGHT

PHASSOCIATION.ORG 19

PHA 2022

PHA 2022

PTE RECOVERY

After returning from San Diego, Bill painted between his daily walks and other hobbies, such as collecting antique tools and editing The Gristmill, the magazine of the MidWest Tool Collectors Association. Bill says he would get lost in his paintings and wouldn’t think about being tired or taking medication.

“The relaxation while painting undoubtedly hastened my recovery from the PTE surgery,” Bill says. “I would walk faster and faster so I could get back to painting.”

Bill enjoys painting landscapes, birds, flowers and butterflies. He references a picture or multiple pictures when painting but adds in details to suit his preferences. During the pandemic, painting has been the perfect activity while spending time at home.

GETTING LOST IN ART

Above: Bill and granddaughter Emily Kazor, discuss progress on his latest painting.

Below: Bill plans to submit this painting to the PHA 2022 art gallery.

Bill mostly paints left-handed, but he considers himself ambidextrous because he can do many things with his right hand. Recently Bill had a surgery on the base of his left thumb and no longer could paint left-handed.

Bill’s granddaughter, Emily Kazor, an aspiring artist, challenged him to paint with his right hand, so Bill painted a desert scene and was surprised at how well it turned out.

“While painting you get engrossed in your technique, your progress and the results of your labor, and you can lose all sense of time.”

When Bill learned about the PHA 2018 art gallery, he knew he needed to submit his artwork. Bill plans to send a few paintings for the PHA 2022 art gallery in Atlanta.

'While painting you get engrossed in your technique, your progress and the results of your labor, and you can lose all sense of time.’

BILL KOLM

20 PATHLIGHT ISSUE 1

CONNECTING DURING THE PANDEMIC

Like Bill, Sylvia Bandyke submitted her work for PHA 2018. She created photo collages to support her sister Mary Bandyke, who was diagnosed with PH in fall 2015.

From the start, Sylvia accompanied Mary to her appointments at the University of Michigan Hospital in Ann Arbor and learned to use the sub-q pump for Remodulin. Around the same time, Sylvia discovered PHA. Today, Sylvia is Mary’s care partner, taking her to appointments and researching information about PH.

‘I find beauty everywhere so ... my photos can be quite varied’ SYLVIA BANDYKE

Sylvia has been interested in photography since childhood, and Mary is a retired art teacher. Their father, an amateur photographer, bought Sylvia her first camera. The sisters have always shared an interest in art and frequent art museums together.

During the pandemic, Sylvia joined an online Facebook group for artists, and she challenged herself to produce new collages daily. Sylvia shares her work with Mary nearly every day to get feedback. The ritual has allowed the sisters to have fun and bond while spending more time at home.

“The appreciation of my sister, online artists and my friends feels good,” Sylvia says. “I’m almost grateful for the required isolation of the pandemic

because it increased my involvement in photography.”

The sisters spend a lot of time with their 100-year-mother. Sylvia visits five days of the week, and Mary is there every day. They care for their mother to avoid using outside caregivers and keep her safe from COVID-19.

COPING THROUGH COLLAGES

To create her collages, Sylvia says she integrates four related images into a cohesive unit and includes a story to describe the collage.

“I find beauty everywhere so the subject matter of my photos can be quite varied,” Sylvia says. “I created many collages with photos taken at my mother’s charming house because I’ve spent so much time there during the pandemic.”

Creating collages has helped Sylvia cope with the pandemic, as well as the stresses that come with being a caregiver for her mother and a supporter for her sister. Sylvia says creating collages puts her into an “almost meditative state of focus and release” when she is working.

Top: Sylvia with her collage entry for an international art competition in Michigan.

Middle: “Hummingbird Rhapsody” photo collage.

Bottom: “Daisy Dish #1” photo collage.

PHASSOCIATION.ORG 21

PHA 2022

PHA 2022

TIME FOR ART

‘With painting, there are no pressures, no deadlines and I get to be completely free in my choices.’

KATHY ANDERSON

22 PATHLIGHT

Art also has provided an escape for Kathy Anderson from the stress of her pulmonary arterial hypertension (PAH), CTEPH and the pandemic.

Kathy was diagnosed with CTEPH in 2010 and received PTE surgery in 2012. Within six months after her surgery, her lungs started to clot again, and she was put back on oxygen. In January 2017, Kathy was diagnosed with PAH, too.

Kathy has stopped working since her diagnoses, but she now has time to concentrate on painting. When Kathy’s days opened, she threw herself into her hobby. She enjoys using acrylics and painting landscapes, cartoons and abstracts.

“Abstract painting is the purest form of self-expression as there is total freedom and no rules.”

When the pandemic hit, Kathy was ready with her painting supplies. Her niece graduated from college during the pandemic, and they didn’t get to have a ceremony. As a gift, Kathy painted a portrait of one of her niece’s graduation photos. The portrait took Kathy several months, but it helped make the time fly.

The pandemic also gave Kathy time to develop her technique because she had all the time she needed.

“With painting, there are no pressures, no deadlines and I get to be completely free in my choices. I miss work sometimes, but I enjoy my free time more.”

Submit Your Work for the PHA 2022 Art Gallery Your paintings, sketches or photos can help raise money for pulmonary hypertension (PH) research and awareness. Submit your work for the PHA 2022 International PH Conference and Scientific Sessions art gallery.

The Pulmonary Hypertension Association (PHA) raises money through sales of artwork submitted by people with PH, caregivers, family members and PH-treating health care professionals. Proceeds support PHA’s mission to extend and improve the lives of those affected by PH. HOW TO APPLY: Submit a 100-word limit statement about each submission and photos

of your work online by April 8. Fill out the form at: surveymonkey. com/r/KQLJLSK. Ship approved artwork to the Pulmonary Hypertension Association, 8401 Colesville Road, Suite 200, Silver Spring, MD 20910.

Artwork shipped directly to the Hyatt Regency Atlanta will not be accepted. Artists are responsible for shipping costs. You must ship your art by May 13.

FORMAT Artwork is limited to photography, paintings (original or reprint) or drawings. Sculpture, ceramics, fabric or mediums other than paper or canvas won’t be accepted.

• Weight: Works must weigh less than 5 pounds, including packaging material.

• Dimensions: No larger than 12 inches (height), 12 inches (width) and 3 inches (depth).

RULES All artwork will be considered donations to PHA. Artists must allow PHA to use submitted works to raise money for PHA. Artists won’t receive compensation. Artists must agree to relinquish rights and ownership of the piece. Artwork won’t be returned to the artist.

PHASSOCIATION.ORG 23

DONOR PROFILE

DONOR PROFILE

Family ‘Bands’ Together To Fight Heritable PH RHONDA CRAMER was 15 when she lost her mother to pulmonary hypertension (PH).

Fifteen years later, Rhonda was diagnosed with heritable PH. After sharing her PH journey at the PHA 2014 International PH Conference and Scientific Sessions, Rhonda was inspired to raise money for the Pulmonary Hypertension Association. Now 51, Rhonda, of Saylorsburg, Pennsylvania, organizes an annual PHA fundraiser and says she is living her best life.

BY RHONDA CRAMER

At left: Rhonda Cramer holds a photo of her mom, Janet Cramer, who died in 1986 of PH. Opposite (left to right): Rhonda’s son Brandon, daughter Kara (holding granddaughter Cora), Rhonda and son Brett.

24 PATHLIGHT

M

y mom was very sick from the time I was born, but I didn’t understand the severity of her illness while I was growing up.

Throughout my childhood, she was always short of breath with blue lips, fatigued, and often sat near a bucket because she was nauseous. Although she frequently was away to see doctors, our family never really talked about it.

I started my sophomore year of high school in 1986. Within the first month of school, my mom was rushed to the hospital and passed away. She had the flu, and her heart failed.

I learned then what her illness really was: PH. She was 44. I was told

that doctors couldn’t do much for her because it was such a rare disease. There wasn’t enough research about PH at that time.

A year later, her sister also passed away from PH, although I didn’t know that until years later. My family never really discussed PH after that, and I never researched it further. I just assumed it was a rare disease and there was nothing more I could do.

SYMPTOMS DEVELOP

Although it was difficult after my mom’s passing, I finished high school and went on to receive an associate degree in accounting and finance.

Shortly after graduating from college, I got married and decided to start a family. I had my daughter at 26, and twin boys two years later.

My second pregnancy was very difficult. Early on I noticed I would become short of breath while drying my hair or making my bed. When I asked my doctors about it, they associated it with my pregnancy. I never suspected it could be PH. In May 2001, we were hosting a summer picnic at our home. After my family had left, I noticed that my ankles were extremely swollen. I had been short of breath for years, but it wasn’t until I saw my swollen ankles that something clicked in my mind. I remembered my mom’s swollen ankles

vividly as I sat there staring at my own.

That’s when I realized that I had PH. I knew without a doubt that I’d had it all along.

SUSPICIONS CONFIRMED

The next day, I made an appointment with my primary care physician who knew my mom’s history. I underwent an echocardiogram, and my cardiologist confirmed what I already knew: I had PH, just like my mom.

Although I knew deep down what the outcome of the test would be, I was still in shock. I was only 30. The next few weeks were a blur of tests. In June 2001, I met with Robyn Barst, M.D. at Columbia Presbyterian Hospital. Dr. Barst sat my family down and told us how serious PH was.

Toward the end of the conversation, she said I had about 10 years to live.

That’s a lot to swallow when you are a young mom. My children were 5 and 2½ years old.

In 10 years, my daughter would be 15 — the same age as I was when I lost my mom — and my sons would be 12½. All I could think about was that my children would have to go through exactly what I went through. How would I explain that to them? How would I prepare them for that?

We set up a treatment plan, and over the next few weeks, I kept asking, “Why me? How am I going to do this?”

DETERMINED TO FIGHT

I saw how hard this disease was on my mom, and I didn’t know if I was strong enough to handle it. After beginning my medication and starting to feel somewhat better, my mindset changed.

I told myself there was no way I would

‘I am a 20-year survivor of PH, a mother of three, a grandmother of two, and I’m living my best life.’ live for only 10 more years and leave my kids.

I was determined to fight.

During my treatment, I took part in gene testing to see if my PH could be genetic. That’s when I found out I had the mutated gene BMPR2, which led to my diagnosis of heritable PH. That’s also when I found out that my aunt as well as my mom suffered from PH. In all three of our cases, our symptoms didn’t surface until our second pregnancies.

After four years of treatment at Columbia, I was transferred to the University of Pennsylvania. At that point, I could barely walk from the car to my house without getting out of breath.

When I met my new care team, Paul Forfia, M.D. and Fran Rogers,

M.S.N, CRNP, I received a new treatment plan. They told me if I didn’t start a new medication soon, I would die. After I started the medication, my symptoms began to improve. Just like that, I realized I was walking up two flights of stairs in my apartment without stopping to catch my breath.

FINDING PURPOSE

In 2014, Fran asked me to speak at the PHA International PH Conference and Scientific Sessions in Indianapolis to talk about my PH journey. I had never done public speaking, but without hesitation I said yes. It was the best decision I ever made.

Through the years of dealing with my disease, I always felt like it was my burden to carry. I didn’t talk about my illness because I didn’t want anyone to PHASSOCIATION.ORG 25

ADVOCACY

DONOR PROFILE

‘I was given this disease because I am strong enough to carry it.’ pity me, and I didn’t want to ask for help.

Speaking at Conference was my “ah-ha” moment. I realized that day that I had a purpose. As nervous as I was, I could feel the emotion in the room. I was greeted afterward by other patients, who thanked me for sharing my story and giving them hope that they could live a good life.

The wheels started turning in my head, and I left that conference on a mission.

‘BANDING’ TOGETHER

After speaking at PHA 2014, I made the decision that I wanted to fundraise for PHA. I knew that by fundraising for the organization, I could spread awareness and raise money for research, hopefully to find new medications and maybe one day a cure.

By fundraising, I also could keep alive my mom’s memory and keep her

fight going. If I could help just one person not feel alone and give them hope for a better life, I would have accomplished something.

My family and I began brainstorming what kind of fundraiser we wanted to do. We decided that we wanted the fundraiser to involve music. Music has always been a part of our lives, so this seemed like a perfect way to bring together the community and fundraise for a disease that has affected my family significantly.

We hosted our first fundraiser, Banding Together for A Cure, in 2016 and continued the event in 2017. The event featured local bands, including the Cramer Brothers Band, which is my brothers’ country music band.

We offered drawings, a photobooth, dancing and games. During our first two years, we raised more than $16,000.

After taking some time off and hosting smaller fundraisers, we had planned another Banding Together for A Cure in 2020. Unfortunately, we had to postpone the event because of the COVID-19 pandemic. We plan to host the event when it is safe.

PERSONAL CAUSE

It is important to me to raise money for PHA because I’ve seen firsthand the change PHA has made over the past 30 years. The money we raise not only goes to research, but it funds PHA’s educational programs and support groups. I have had a much

better prognosis and quality of life than my mother because of the advances made possible by PHA. I am now a 20-year survivor of PH, a mother of three, a grandmother of two, and I’m living my best life.

If it weren’t for my children, I don’t know that I would have gotten this far in my fight. They are my reasons to keep going and my greatest accomplishment.

There are many things PH has taken from me but so much more it hasn’t: my love for my family and friends, summers at the beach and swimming in my pool. Watching my children reach milestones, seeing my grandchildren grow, soaking up all their smiles and laughter, having a supportive man by my side — what more could I ask for? I’ve come so far and have so much more to do. I stay hopeful that one day I will help find a cure.

I can honestly say PH has made my life more positive because I don’t take anything for granted. I don’t sweat the small stuff anymore. This is the life I was dealt, and I will keep living life to the fullest. I don’t question why any longer. I just know I was given this disease because I am strong enough to carry it.

Join PHA’s Fight to End PH Therapy Barriers

T

he Pulmonary Hypertension Association (PHA) is keeping pressure on legislators to improve the lives of people affected by pulmonary hypertension (PH). PHA’s advocacy can’t be successful without the PH community.

Learn about three PHA legislative priorities and how to join the fight: The Safe Step Act (S. 464, H.R. 2163) would prevent people from being forced to switch to new medication from their current therapy. It also would require an expedited step-therapy appeals process. Thanks to PHA’s PH Professional Network Advocacy Day participants and other advocates, the Safe Step Act has 30 co-sponsors in the House and 108 in the Senate.

The Help Ensure Lower Patient Copays Act (HELP Copays Act, H.R. 5801) addresses a loophole some health insurance companies use to “double-dip” on copays though copay accumulator programs. Insurance plans with accumulators accept payments from copay cards or other financial assistance sources but don’t apply those payments toward deductibles. People subject to accumulator policies are responsible for their full deductibles after their financial assistance runs out. The HELP Copays Act closes this loophole so insurance companies will have to pay their fair share.

In 2021, Connecticut enacted a law to ban accumulators, thanks to advocacy from the PH community. Both state and federal action are important on this issue, and personal stories from the community are essential to success.

The Creating Opportunities Now for Necessary and Effective Care Technologies (CONNECT) for Health Act (S. 1512, H.R. 2903), would permanently waive restrictions on technology and locations required for telehealth. It would allow home telehealth appointments after the COVID-19 pandemic ends. PHA has been advocating for expanded access to telehealth since early in the COVID-19 pandemic.

The CONNECT for Health Act now has 124 co-sponsors in the House and 61 in the Senate.

VISIT PHA’S ACTION CENTER to let your members of Congress know why these bills matter: PHAssociation.org/Advocate

If step therapy requirements prevent you from getting the PH medication your specialist prescribed, or if you have trouble paying for your PH therapy because of a copay accumulator, contact PHA to share your story. Email us at Advocacy@PHAssociation.org, or call 301-565-3004 x758.

HELP SUPPORT PHA’s mission to extend and improve the lives of those affected by PH. Visit PHAssociation.org/donate to make a gift.

Rhonda and her brothers, Randy (left) and Ray Cramer (right) 26 PATHLIGHT

PHASSOCIATION.ORG 27

VOLUNTEER SPOTLIGHT

VOLUNTEER SPOTLIGHT

Finding and Giving Hope As a Volunteer and Support Group Member

‘I am still here, taking care of my mom and swimming multiple times a week.’

BY SUE LISS

SUE LISS OF CHICAGO is a retired IT professional and the caregiver for her 96-year-old mother. After feeling hopeless at the beginning of her diagnosis, Sue found hope by leaning on her support system and now volunteers with the Pulmonary Hypertension Association (PHA). In her spare time, she enjoys her cat, crossword puzzles, computer games, reading and participating in social activities with several seniors groups.

I

started volunteering with PHA in August 2021, taking calls on the patient support line. What an enlightening and uplifting experience it has been.

I closely identify with two issues that frequently come up on calls: “I was reading about PAH on the internet” and “Does my PAH diagnosis really mean that I am going to die?”

When I was newly diagnosed with idiopathic pulmonary arterial hypertension (PAH), I too was confused and afraid by what I read on the internet. After reading some of the sites, I was certain that no matter what I did I would be dead within six months.

Fourteen years later, I am still going strong. I believe that gives hope to callers.

SHARED EXPERIENCE

As a support line volunteer, I share information I trust with people like me. They understand this disease can be complicated to explain to others. They didn’t develop this disease because they didn’t take care of themselves.

They sometimes get tired even though they haven’t done a lot of strenuous exercise. They might never regain some capabilities they had before.

Although it’s fulfilling to give people information they’re searching for, the best part of volunteering is being able to say, “No, you have not just received a death sentence. I can tell you that because I am still here, taking care of my mom and swimming multiple times a week.”

One day I received a call from someone whose doctor believed she had PH. She was scheduled for a right heart 28 PATHLIGHT

days. By the time I left Colorado, I was on six liters of oxygen at rest and eight to 10 liters with activity.

Since moving back to Chicago, I am on three liters at rest and four or five liters with activity, such as swimming. I take ambrisentan and sildenafil.

DISCOVERING SUPPORT

catheterization and anxious. I assured her that the right steps seemingly were being taken so we talked about how she could be calmer until the procedure.

After the right heart catheterization, she called to thank me for helping her to remain calm until the procedure, which showed that she didn’t have PH. DISCOURAGEMENT AT DIAGNOSIS

My PAH journey began in 2007. I was living in Longmont, Colorado, when I started having breathing problems. I was told to lose weight and later was prescribed oxygen. A right heart catheterization, which along the way I learned was the gold standard to confirm or rule out PH, identified my PAH. I did what so many of us do when diagnosed – I looked on the internet. Well, that left me sure that there was no point in taking any action since there was no cure and no long years of fun ahead as I would just be lying in bed waiting to die.

FINDING STRENGTH

Thank goodness I have a strong support system of family and friends who didn’t let my mind go down that road.

With much support, I came to believe that no one knows when their time is up, so I might as well just live my life for however long that may be.

I started asking my doctors more questions: to draw me pictures and tell me in layman’s term what was happening with my body. I also asked them what I could do.

When I started on oxygen, I used it at night and with physical activity. I was using three liters of oxygen in those

I had excellent medical care in Colorado. However, I didn’t look into support groups, and no one spoke to me about them. I always felt alone trying to understand what was happening with my body and feeling that I somehow brought this on myself.

After I moved back to Illinois, my medical team provided me information about PHA and its support groups.

The support groups help keep me balanced. There is usually someone dealing with more than I am and others dealing with less. Someone usually is dealing with what I am, which gave me the confidence to get back in the water and swim.

I have always been very active. At one time I owned a horse and rode several times a week. When I wasn’t horseback riding, I was bicycling or walking. I grew up in a family that truly enjoyed swimming. I have been a swimmer since I was 5 or 6. I loved hiking in the mountains, walking around my town and swimming.

Although mountain hiking is no longer an option for me, I am back to swimming as I did before my diagnosis and enjoying it very much.

If you’re a patient or caregiver and would like to connect with a PHA volunteer, call PHA’s Support Line at 800-748-7274.

If you’d like to apply to volunteer, visit PHAssociation.org/get-involved/volunteer.

PHASSOCIATION.ORG 29

PH AWARENESS

PH AWARENESS

Living Each Day to The Fullest in Mexico City ADRIANA POSADA is a longtime Pulmonary Hypertension Association (PHA) volunteer. She is a PHA PHriend, providing support and information by email to people newly diagnosed with pulmonary hypertension (PH), and she leads the PHA support group in Mexico City. She was diagnosed with idiopathic pulmonary arterial hypertension (PAH) in 2005. At the time, she was 41 with 8- and 11-year-old daughters. Since then, she advocates for treatment access and financial assistance for people with PH in Mexico and spreads PH awareness internationally. Adriana shares her story to promote World PH Day on May 5.

BY ADRIANA POSADA

I ‘I hope these words bring other PH patients faith so they don’t feel afraid.’

Photo: Carlos Aranda/Unsplash.

30 PATHLIGHT

was exercising at the gym when I had my first of three fainting spells in four months. The next time, I was dancing at my birthday party. I had been experiencing shortness of breath, extreme fatigue and chest pain. I lost my health in a very short time.

After I was diagnosed, I realized I needed to learn about idiopathic PAH, as well as PH in general. I also focused on getting to know myself better and using the power of my mind to relax my body. In those years, there were only four treatments for PAH, and I was privileged to get one of them.

Over the next few years, I shared my “new me” with other PH patients all around the world. In addition to being a support group leader, I volunteered for several PH associations and produced a Spanish-language blog for people with PH and caregivers. I call my PH “the health project” because I am not the illness.

I’ve had the chance to visit many countries and understand that people in every country have the same challenges finding treatments for this rare disease. That’s why I work to spread awareness of the illness, the symptoms and tests people need to be diagnosed.

I am from Mexico City, where I still live, because family is priceless.

My daughters live here, as well as my mom, sisters, brothers-in-law, nephews, uncles, cousins — and now a little piece of life: my 3-month-old grandson. He lights up my life and gives me hope to carry on.

He changes my thoughts because I’m always thinking about how he is, when I can see him, and when I can kiss his cheeks and hug him without a mask. I no longer worry about how long I might live because I live every day one day at a time.

My most difficult moments have been facing the loss of a PHriend and

trying to access certain medicines in my country because we don’t have all the PH treatments available in the U.S. After 10 years, my cardiac output had decreased, and I needed an atrial septostomy in August 2015. After that, I had to start over to increase my physical activity. I take oxygen 24/7.

I got divorced in 2018 after almost 30 years of marriage, so 2019 and 2020 were hard times. But I had strength to live the best I could.

In 2021 got sick with COVID-19.

I was treated at home, isolated but full of love, prayers and care from my daughters, family, and friends. Those days of pain and sorrow helped me to forgive and love myself and others.

There will always be challenges to live with this rare disease. I have met with policymakers in my country to advocate for insurance coverage of PH treatments. The costs are so high that all treatments are luxuries in Mexico.

I hope these words bring other PH patients faith so they don’t feel afraid. Your own journey could be easier now that research has led to more treatments and cardiac surgeries.

When I was diagnosed, only two PH genes had been discovered, but now we know so much more.

I am thankful to the researchers, physicians and nurses who help us learn more and provide the best treatment possible to make us feel better, better and better each day.

To my friends with PH, know that you are not alone.

Help Build Global PH Awareness Each May, the Pulmonary Hypertension Association joins people with pulmonary hypertension (PH), their families, health care professionals and PH organizations throughout the world to mark World PH Day on May 5.

World PH Day draws attention to PH from a global perspective.

In the United States, people with pulmonary arterial hypertension (PAH) and left heart disease represent 71% of all cases of PH. But that’s not the case in many other countries. In Africa and Asia, schistosomiasis is the most common way to acquire PH. Schistosomiasis is spread by a parasite in water used for bathing and recreation.

Although PH-related challenges vary by country or geographic region, the fight is the same globally. No matter where you live, share your stories to broaden recognition of PH symptoms, emphasize the importance of early diagnosis, improve access to quality care and effective treatments, and identify trusted, credible informational and educational resources.

Visit PHAssociation.org and worldphday.org in May for resources and more information.

Maria and her grandson.

PHASSOCIATION.ORG 31

QUICKTAKES Support Group Leader Advisory Board Names New Members

T

he Pulmonary Hypertension Association (PHA) welcomes two new members to its Support Group Leader Advisory Board. Laura Hooley and Marcie McGregor join Diane Ramirez, Nikole Nichols, Tina Stiyer, Pat Ofori, Monica Penaranda, Mike Robinson and Debra Hines.

Laura and Marcie replace Evette Britton and Lindsay Collins.

The Support Group Leader Advisory Board consists of nine support group leaders: eight patients and one caregiver. The advisory board plans and implements programming for the support group leader network.

Members also operate regional networking groups, which act as a special support program for PHA support group leaders.

Pictured top to bottom: Laura Hooley, Marcie McGregor.

Share Your Medication Disruption Stories

M

edication interruptions can be life-threatening, and sometimes even a few hours can significantly affect your well-being.

If you had to go without your prescribed pulmonary arterial hypertension medication in the past year because of insurance obstacles or billing or shipping challenges, the Pulmonary Hypertension Association wants to hear from you.

Call 301-565-3004 x 758 or to share your PH medication gap experience at Advocacy@ PHAssociation.org. Your story can help make a difference for the pulmonary hypertension community.

How to Find Financial Assistance For Treatment Costs The Pulmonary Hypertension Association (PHA) Treatment Access Program maintains a guide to financial assistance resources, including copay assistance programs.

One valuable resource for anyone searching for copay grants is the PAN Foundation’s Fund Finder, where you can sign up for email or text notifications as soon as a pulmonary hypertension charitable assistance fund opens. Sign up for Fund Finder alerts by calling 866-316-7263 or visit fundfinder.panfoundation.org.

Contact PHA’s Treatment Access Program for more information about financial assistance resources by calling 301-565-3004 x 758, or email us at Insurance@PHAssociation.org.

Thanks to Janssen Pharmaceuticals FOR SUPPORTING PHA’S TREATMENT ACCESS PROGRAM 32 PATHLIGHT

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

EMAIL

Summit Explores Ways To Raise Awareness, Reduce Barriers

T

he Pulmonary Hypertension Association (PHA) is working with other rare disease organizations improve the understanding of pulmonary hypertension (PH) and reduce barriers to diagnosis among at-risk groups.

Last fall, PHA launched the Associated Conditions Partner Summit with organizations that focus on conditions associated with PH. The five-hour summit was conducted by video call.

Those attending included staff, volunteers and patients from Cure HHT (hereditary hemorrhagic telangiectasia), Adult Congenital Heart Association, Scleroderma Foundation, Pulmonary Fibrosis Foundation, the Foundation for Sarcoidosis Research and the Cystic Fibrosis Foundation. People with those

conditions have a greater risk of developing pulmonary hypertension.

Participants discussed ways to enhance understanding of PH through joint education and improve outcomes through collaborative awareness and advocacy activities.

Health care providers expressed the need to better understand the challenges to diagnosis through crosstraining with PH clinicians. Anna Hemnes, M.D., chairelect of the PHA Scientific Leadership Council, provided an overview of the types of PH and related diagnostic tests along with treatment options.

Representatives for industry sponsors Janssen Pharmaceuticals, United Therapeutics and CVS Specialty also attended. PHA plans to hold the event every year.

CALENDAR OF EVENTS APRIL 9

JUNE 10-12

Southern California O₂breathe Walk

PHA 2022 International PH Conference and Scientific Sessions

Long Beach, Calif.

O₂breathe.org/SoCal

Atlanta PHAssociation.org/PHA2022

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

APRIL 23 Northern Virginia O₂breathe Walk Alexandria, Va. O₂breathe.org/NOVA

OCTOBER 8

DIAMOND

Georgia Fun Walk Marietta, Ga. PHAevents.org/Georgia

MAY 5 World Pulmonary Hypertension Day Online

VIRTUAL FUNDRAISERS

MAY 21

Visit PHAssociation.org/phafundraising-events to find a fundraising event in your area.

Boston O₂breathe Walk Cambridge, Mass.

O₂breathe.org/Boston

JUNE 4

QUESTIONS?

Chicago Stride O₂breathe Walk

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

Elk Grove Village, Ill. O₂breathe.org/Stride

PLATINUM

PHASSOCIATION.ORG 33

Reach members of the PULMONARY HYPERTENSION ASSOCIATION

PHAssociation.org: Comprehensive resource for anyone affected by PH

PHAssociation.org

34 PATHLIGHT

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*

Marie and Ronald J. Levendoski

Sandra A. Awood*

Mary Jo* and Thomas Linnen*

Dauna L. Bauer*

Sally Maddox*

Sylvia M. Becherer*

Bonnie and Michael D. McGoon

Joan F. Bennett-Schenecker*

Pathlight: PHA’s quarterly member magazine

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

PHA’S LEGACY OF HOPE

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.

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Passages

Helen M. Bantz Jacqueline D. Biddle Christine Biron Michelle Blackwell Roselyn J. Boldman Erin E. Carr Patricia Centanni Angela D. Clinedinst Barbara E. Cobb Pamela S. Combs William R. Cooper Mary E. Cretaro Patricia E. Ferguson Michael P. Foreman Patricia A. Harrington Wayne A. Harris Jeanette Hatch William H. Heether Colby A. Hills Deborah J. Huff Laura Ihrig Caroline M. Kocken

Stephanie G. Layer Donald F. MacPhee Sharon L. McDaniel Daniel Mclallen Madeleine Nelsen Valerie Papineau Samantha Peskin Gina Piscioneri Debra M. Price Deborah J. Revelle Sarah Rios Donna M. Samuels Susan B. Sheridan Debra Shifflet Vicki S. Taylor Edwin R. Thompson Robert Tropiano Parthenia Turner Linda C. Vitarelli Leslie Waite Christina M. Zeringue

The accuracy of this list is important to us. Please contact the PHA office at 301-565-3004 x746 or Passages@ PHAssociation.org to share the name of your recently deceased loved one or report an error or omission.

Your donations in memory of others, in honor of others and in support of our mission mean so much to the entire PH community, and we thank you.

Kris L. Best

Joseph W. Mihuc* Linda Miles*

Gloria G. Blodgett*

Karen S. Moody

Dorothy E. Bradley*

Larry D. Moody

Mary M. Brady*

Pamela R. Morris

R. J. Braun

Marjorie D. Mott*

Roberta F. Browning* and Lee A. Broadbent

Joyce L. Mowrer* Pamela and Timothy O’Connor

Rita and Bruce Brundage Colleen Brunetti

Dorothy M.* and Harry J. Olson*

Stephen Carter-Hicks Colleen and Shawn Connor Jane P.* and Harold P. Cooper

Theresa “Terry” E. (Cavanaugh) O’Reilly*

James F. Corbett*

Rita and Guy Orth

Nicole M. Creech

Patricia R.* and Gerald D. Paton*

Laura H. D’Anna

Cynthia and John R. Pickles

Charles W. DeVier, III*

Jean D. Pitcher*

Linda M. Feibel*

Carol L. Powell*

Barbara T. Gamer

Frances A. Price

Stacey Gausling* Franklin D. Gillespie*

Carol J. Posner* and Marc Priore

Tammy A.* and Dean S. Hazen

Diane Ramirez

Mary Jan Hicks

James Ryan*

Carl Hicks, Jr. Phyllis M. Hill*

Louise C. and Gene P.* Salvucci

Jackie Holt

Judith and Edwin L. Simpson

Richard L. Horrocks

Kelley Skumautz

Constance G. Ives*

Marcia and Jack Stibbs

Terri L. Jakuboski*

Helena M. Strauch*

Stanley T. Jusinski

Douglas R. Taylor

Laura J. Kelly*

Frank A. Tobac*

Jamses Kenney

Martha and Carlos Torres

Jessie Kohler-Wenninger

Deborah J. and Roger K. Towle

Terri L. Kopp*

Carol B. Ungar

Debbie L. and Mitchell Koppelman

Carol E. Vreim

Frank D. Koppelman*

Andrea and Stephen L. White

Dee* and Walter Kruger* Gloria J. Lang*

Daniel R. Walsh*

* deceased members

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