Pathlight - Spring 2021

A publication of the Pulmonary Hypertension Association

Issue 1 2021 // Volume 30 No. 1

PLUS New Guide for Newly Diagnosed Patients Relief and Hope After Vaccinations Managing Motherhood and Rare Diseases

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

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

Find Answers

Learn Why

Get Talking

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.

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.

IN THIS ISSUE 2021 // Volume 30 No. 1

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Guide Helps the Newly Diagnosed Navigate PH

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COVID-19 Vaccines: What You Need to Know

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Feeling Fine About Sore Arms and Side Effects

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New PHA Resource: Learn About PH That Occurs at Birth

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Researcher on Quest to Reverse Lung Damage in PAH

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Meet the CEO: PHA Welcomes Matt Granato

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Going the Distance: Mile by Mile

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Funding the Future

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Advocating for a Brighter Future

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Managing Motherhood and Rare Diseases

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Memorializing a Beautiful Life

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Meet the Leaders

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Keeping Connected in a Distanced World

On our cover: Lindsay Thurman became a distance runner after a medication change.

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 program is sponsored by Janssen Pharmaceuticals, Inc. ©2021 Actelion Pharmaceuticals US, Inc. All rights reserved. cp-201358v1 0121

IN EVERY ISSUE 5

Letter From the Chair

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Passages

35

Quick Takes

Knowledge. Understanding. Empowerment.

PHASSOCIATION.ORG

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BOARD OF TRUSTEES Colleen Brunetti, M.Ed., C.H.C., chair

PUBLISHER Matt J. Granato President & CEO

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

CONTRIBUTORS Colleen Connor, Lauren Intrieri, Elizabeth Joseloff, Lisa Kimble, Michael Knaapen, Katherine Kroner, Mira Kruger, Nola Martin, Abby Sickles, Lindsay Thurman.

CREDITS Cover story: Brian Bohannon Photography

CONTACT 8401 Colesville Road, Suite 200 Silver Spring, MD 20910 Phone: 301-565-3004 Fax: 301-565-3994 Support Line: 800-748-7274 We’re here to support anyone with a connection to PH. (daytime, please) PHAssociation.org PHA@PHAssociation.org Submissions to Pathlight are welcome. Please email your articles, photos and queries to Communications@ PHAssociation.org.

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 Trustees-at-Large 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. William Hoff Kimberly Jackson, R.N., B.S.N. William Jansen Jessie Kohler Wenninger, Esq. Mitch Koppelman, Ph.D. Ronald J. Oudiz, M.D. Monica M. Penaranda Traci Stewart, R.N., M.S.N., CHFN Doug Taylor Matt Wall Melisa A. Wilson, D.N.P., APRN, ACNP-BC Emeriti ex-officio C. Gregory Elliott, M.D., FCCP, MACP Michael D. McGoon, M.D. Edwin Simpson Judith Simpson, R.N., Ed.S. Honorary Carl Hicks President & CEO Matt J. Granato, LL.M., MBA 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

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. Nicole Reid, R.N., B.S.N., DABAT Distinguished Advisors 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.

Well, we made it to 2021. And while 2020 seemed it might never end, 2021 is starting to look a little brighter.

While there still is a lot to be done to get through this pandemic, evolving research and vaccine development provide the proverbial light at the end of the tunnel that’s helping to drive me forward.

I’m a pulmonary hypertension (PH) patient, and like many of you, I’ve spent the last year mostly sequestered from society. However, it feels like brighter days are ahead now that COVID-19 vaccines are rolling out.

The availability of COVID-19 vaccines will certainly change things, but we know there are a lot of questions. In this issue of Pathlight, we tackle common questions in “COVID-19 Vaccines: What You Need to Know.”

In “Feeling Fine,” Marilyn Hanft, Alberta Wright, and Holly Szmutko share their relief and new hopes after receiving vaccinations early this year.

This issue also addresses new beginnings as we begin our 30th anniversary year. We welcome Matt Granato as the new Pulmonary Hypertension Association (PHA) president and CEO. Matt comes to us with fresh ideas and insights and a keen eye for patients at the center of PHA’s work.

We’re looking forward to seeing the new ways he can lead the organization, with our rich 30 years of history to light the way.

This month’s cover story, “Going the Distance,” is by long-term survivor Lindsay Thurman. She found new beginnings in a medication change that made possible new things she could do with PH, including running.

Lindsay’s story reminds me of the first time I met a patient who actually could exercise.

That meeting at Conference showed that maybe I could reclaim some of my physical health and inspired me to get up and move. That inspiration ended up being truly life-changing. Lindsay’s story can do that for you too!

In “Meet the Leaders,” Colleen Connor and Nola Martin share their PH journeys and discuss their roles as leaders of University of Pennsylvania PH support group in Philadelphia. A companion article, “Keeping Connected in a Distant World,” includes patient stories of how virtual meetings have evolved during the pandemic to connect, support and inform the community.

In “Researcher on a Quest to Reverse Lung Damage in PH,” we hear about cutting-edge research from Vineet Agrawal, M.D., Ph.D., this year’s recipient of the Aldrighetti Research Award for Young Investigators. Dr. Agrawal’s work centers on his discovery of a new protein that could, in theory, lead to new therapies that could help heal lungs impacted by PH. Can you imagine? We currently can slow the progression of PH, we can help the heart cope better, but as of now, it is not possible to heal damage already in progress. Talk about new beginnings for the community!

I don’t know that I’ve ever welcomed a fresh start as much as I have this year. Even the familiar feels new and unusual, as it’s been so long since we could experience even the routine.

But we will return to normal in time, and we will continue to build on what 30 years of work at PHA has taught us. I’m looking forward to it. Here’s to a brighter 2021!

Warmly,

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

PHASSOCIATION.ORG

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New Resource for New Patients Guide Helps the Newly Diagnosed Navigate PH

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We strive to help PH patients thrive.

new Pulmonary Hypertension Association (PHA) publication is available for people newly diagnosed with pulmonary hypertension (PH).

“Navigating Pulmonary Hypertension: A Guide for Newly Diagnosed Patients” is intended for patients and caregivers in the first weeks, months or years after diagnosis. The 60-page book provides information about diagnosis, treatment, quality of life and support.

It includes checklists, resources and questions to ask doctors.

The free guide is available online at PHAssociation. org/NavigatingPH. Those new to PH also can order copies online, by email at NavigatingPH@ PHAssociation.org or by phone at 301-565-3004.

PHA also distributes postcards to health care providers so they can direct newly diagnosed patients to the book. Health care professionals can order postcards and view the guide by logging into PHAssociation.org/medicalmembershipnetworks.

This new publication continues PHA’s tradition of empowering patients and caregivers through previous publications such as “Survival Guide,” “Roadmap to Hope” and “Understanding Pulmonary Hypertension.”

Although PHA no longer publishes those books, “Navigating PH” covers a range of practical and relevant topics in an easy-to-read format.

We work every day to help patients with pulmonary hypertension. It’s more than a mission—it’s our promise.

BAYER and the Bayer Cross are registered trademarks of Bayer.

Bayer 100 Bayer Boulevard, Whippany, NJ 07981 USA ©2017 Bayer PP-400-US-3751 August 2017

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Science For A Better Life PHASSOCIATION.ORG

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HEALTH MATTERS

HEALTH MATTERS

B

y now, you might be among the millions of people who have received COVID-19 vaccinations. At press time, three vaccines were available in the United States: the Pfizer-BioNTech for people 16 and older, the ModernaTX for those 18 and older and a vaccine from Janssen Inc., a division of Johnson & Johnson, for people 18 and older. The three approved for emergency use haven’t received full Food and Drug Administration approval but have been shown to be safe and effective.

Meanwhile, other COVID-19 vaccines from AtraZeneca and Novavax are advancing through clinical trials.

Novavax anticipates FDA clearance in May for its vaccine.

As the pandemic rages on, the Pulmonary Hypertension Association offers Frequently Asked Questions about the vaccines at PHAssociation.org/COVID-19. Here are some excerpts:

When can PH patients get COVID-19 vaccines?

That depends on the rollout in your state or region.

Initially, demand exceeded supply. Because of limited doses available, vaccination is prioritized for specific groups of people. Distribution continues in stages.

People with pulmonary hypertension are included in a prioritized group, but when you can receive it depends how many doses are available where you live and your state’s distribution plan.

The Centers for Disease Control and Prevention recommends the following prioritization plan: Phase 1a: Healthcare providers and residents in long-term care facilities.

Phase 1b: People 75 years and older and frontline essential workers. Essential workers include first responders, educators, and people employed in food and agriculture, manufacturing, corrections, postal service, public transit, and grocery stores.

Phase 1c includes: • People between 65 and 74.

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• People 16 to 64 with high-risk medical conditions, including PH, and other cardiovascular and cerebrovascular diseases. Visit CDC.gov for more information.

• Essential workers not included in Phase 1b.

How do COVID-19 vaccines work?

Vaccines work by triggering the body’s immune system to produce proteins called antibodies that fight infection and prevent the virus from spreading throughout the body. Several different strategies are being used for COVID-19 vaccines.

In one type of vaccine, the virus is inactivated (killed) so it can’t multiply. But it can still trigger an immune response. type of vaccine is used for polio, hepatitis A and flu vaccines.

Another type uses only part of the virus to trigger an immune response. For COVID-19, the vaccines target a protein on the surface on the virus called the spike protein. The SARS-CoV2 virus attaches to spike, or S protein, and infects human cells.

Anna Hemnes, M.D., Vanderbilt University

A third type, a viral vector vaccine, uses part of the virus to trigger an immune response. For the COVID-19 vaccine, the spike protein is inserted into another virus that can infect human cells. The action triggers an immune response but won’t cause a severe reaction.

None of the vaccines cause COVID-19.

Are there side effects or allergic reactions to the COVID-19 vaccines?

Pain, redness and swelling at the injection site have been reported for all three vaccines. Other common side effects include headache, extreme tiredness, muscle aches, nausea and fever. There is a remote chance the vaccines could cause severe allergic reactions within a few minutes to an hour after getting the vaccine. Learn more at FDA.gov.

How long do COVID-19 vaccine protections last?

Can the vaccines prevent me from transmitting the virus to others?

Not enough information exists about how long vaccine protections last. Many vaccines, such those for the flu, periodically need to be re-administered.

Over time, scientists will learn more about longterm protection. People might need multiple doses of COVID-19 vaccines for broader protection. People who are vaccinated, although protected from getting

Murali Chakinala, M.D., FCCP, Washington University

sick, still might be able to transmit the virus to others.

Because vaccine doses initially were limited, it will take time to vaccinate a large percentage of the general population. Children and certain high-risk populations won’t receive vaccines until scientists collect more data. Continue to wear masks and practice physical distancing to prevent further spread of COVID-19.

Do people who already had COVID-19 need the vaccine?

The COVID-19 vaccine will be provided whether or not someone has been infected. Scientists don’t know how long people might be protected from reinfection after contracting COVID-19. Some people have been reinfected, so more studies are needed. Visit CDC.gov for more information.

What does the COVID-19 vaccine cost?

The U.S. government is providing the vaccines at no cost to the public. Vaccination providers can charge administration fees for giving the shot, but the government and private insurance companies will reimburse those providers. The Health Resources and Services Administration’s Provider Relief Fund will reimburse administration fees for shots administered to people without insurance.

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HEALTH MATTERS

HEALTH MATTERS

As vaccines advance, PHA urges you to stay safe by wearing masks, washing hands and maintaining physical distance from others. Talk with your PH health care team about whether the COVID-19 vaccine is right for you.

Visit PHassociation.org/COVID-19 and FDA and CDC websites for the latest information about vaccines.

Feeling Fine About Sore Arms and Side Effects

S Speeding Up the Process Usually, the process of moving a vaccine through clinical trials takes years. But several factors led to a significantly shorter-than-usual approval process for the COVID-19 vaccine.

The shortened timetable doesn’t mean that scientists or regulatory agencies took shortcuts when evaluating the science, safety, and efficacy of the vaccines.

Researchers didn’t start from the beginning when studying SARS-CoV-2, the virus that causes COVID-19. SARS-CoV-2 is one of many coronaviruses.

Coronaviruses cause the common cold, as well as the epidemics Severe Acute Respiratory Syndrome (SARS) in 2002 and Middle East Respiratory Syndrome (MERS) in 2012. Scientists have been studying coronaviruses for many years, leading to findings about the biology and structure of coronaviruses.

Researchers discovered the genomic sequence of SARS-CoV-2 in January 2020, shortly after the first patient with COVID-19 was identified. That research led to worldwide scientific collaboration to develop treatments and vaccines.

Government agencies partnered with private biotechnology and pharmaceutical companies to provide funding to accelerate clinical development of COVID-19 vaccines.

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In the U.S., Operation Warp Speed partnered with the National Institutes of Health and the Centers for Disease Control and Prevention to develop, manufacture and distribute COVID-19 vaccines.

The European Commission and the UK Government Vaccine Taskforce funded research and development of potential vaccines.

Some COVID-19 vaccine clinical trials combined Phase 1 and Phase 2 studies so researchers could quickly evaluate safety and efficacy in a larger population of people at one time. As the pandemic grew, millions of people worldwide were infected and could participate in Phase 3 studies.

Distribution began soon after approval because many companies and the U.S. government ramped up manufacturing capabilities before clinical trials were completed. Usually, manufacturing doesn’t begin until the FDA approves a vaccine.

Toward the end of 2020, the pandemic landscape rapidly changed when two COVID-19 vaccines received emergency approval from the Food and Drug Administration (FDA).

Collaboration of scientists and clinicians globally because of the pandemic led to advances in vaccine research. As vaccines become available through emergency and ultimately full FDA approval, the CDC will monitor safety and collect additional safety data outside of clinical trials in real-life settings.

ince the start of the pandemic, Marilyn Hanft of St. Marys, Georgia, prayed for a vaccine.

Her prayers were answered Jan. 29 when she received her first dose of the Moderna vaccine.

Marilyn, a retired registered nurse with intensive care and emergency room experience, was diagnosed with chronic thromboembolic pulmonary hypertension (CTEPH) in 2011.

She was hesitant to take the vaccine when she first heard about it because she thought there hadn’t been enough testing. Once she read about the test results and the methods used, she was impressed.

Shortly after her first shot, Marilyn felt fine. A few days later, she began to have side effects. During the day, she felt fatigued. At night, she developed dizziness, hot flashes, nausea and diarrhea.

Despite a couple days of not feeling well, Marilyn “definitely plans” on receiving her second dose.

“Getting vaccinated not only protects yourself, it protects others,” she says. “This vaccine has no virus in it at all. So while you may have side effects or an allergic reaction, you cannot get COVID-19 from the vaccine.”

‘Best X decision’ Similarly, Alberta Wright of Detroit, Michigan, had a sore arm for a couple days after her first dose of the Pfizer vaccine. After her second dose, Alberta developed flu-like symptoms. She had body aches, a headache and nausea, and she felt like someone threw bricks on her stomach, she says.

Alberta, who has pulmonary arterial hypertension (PAH), says her doctors recommended she receive the

vaccine because of her rare disease. Although there could be side effects, Alberta says it’s important people get COVID-19 vaccines to protect themselves and others.

“I made the best decision to get vaccinated to keep myself healthy,” she says. “Eventually, with everyone getting vaccinated, it will slow down the spread of the virus.”

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HEALTH MATTERS

The return to normalcy and slower progression of the virus are two reasons Holly Szmutko of Valparaiso, Indiana, believes people should get the COVID-19 vaccine.

Holly’s PAH progressed quickly after her January 2019 diagnosis. Her care team decided a double lung transplant was the best option to improve Holly’s health and quality of life.

Holly was listed for a new pair of lungs Feb. 24 and received her first dose of the Pfizer vaccine three weeks earlier with no issues or side effects. Her team encouraged her get vaccinated before her transplant, but there is a chance she will receive the call for transplant surgery before her second vaccine.

All donors are tested before transplant. It’s possible a donor was exposed to COVID-19 but hadn’t tested positive. Holly says she would prefer to receive her second vaccine dose before her transplant, but she will take the lungs whenever she gets called.

Alberta Wright

HEALTH MATTERS

New PHA Resource

Learn About PH That Occurs at Birth “My team and I agreed that one vaccine is better than none,” she says. “If I get called the day before I’m scheduled for my second vaccine, we will proceed with transplant. That is more important.”

Most of Holly’s family have received the vaccine, and she encourages anyone who is immunocompromised, has a terminal illness or elderly to get the vaccine if they can. “Together, we can make a difference, improve our health and protect loved ones,” she says.

“If this vaccine can prevent deaths from COVID or protect you from having a severe case or no case at all, it is completely worth it. If one person can be saved, that is one person who gets to be with their loved ones another day.”

Marilyn Hanft

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ulmonary hypertension (PH) often is thought of as a disease of middle age and older people.

But as many families can attest, that simply isn’t the case.

PH affects people of all ages. In fact, it can arise the moment someone is born.

The Pulmonary Hypertension Association (PHA) recently published a new educational handout about persistent pulmonary hypertension of the newborn (PPHN). PPHN, which occurs when blood vessels in the lungs don’t open fully at birth, can cause serious issues.

The handout explains that babies get most of their oxygen before birth from their mothers through the placenta. The blood vessels in the lungs are closed until a baby takes its first breath at birth. If the blood vessels remain partially or completely constricted, blood doesn’t flow adequately through the lungs to the brain and body.

Although there is no known cause for PPHN, several risk factors exist, including certain tissue and fluid buildup, respiratory distress syndrome or diaphragmatic hernia.

Sometimes PPHN resolves on its own. Other times, expert medical care and interventions might be necessary to help an infant recover. Those

interventions include PH medications, nitric oxide and a blood oxygenation system called extracorporeal membrane oxygenation.

PPHN — like any other type of PH — varies in its effects, how it’s treated and its ultimate outcome.

But knowledge can empower families to ask the right questions and guide the care their baby needs.

That’s why PHA created the free handout about the disease process, risk factors, treatment and recovery.

Download the guide at PHAssociation.org/Pediatrics.

Whether you’re a parent or family member of an infant, school-aged child or an adult living with PH, PHA has resources to help you find information, support and hope. Check out PHA’s support programs, informational videos and publications, live events and activities at PHAssociation.org/ Pediatrics.

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‘It is particularly an honor to receive the Aldrighetti Young Investigator Award by an organization that consists of the very people who are most invested in understanding and treating PAH.’

V

ineet Agrawal, M.D., Ph.D., didn’t plan a career in medicine. Growing up, he wanted to be an engineer and later studied biomedical engineering at Duke University. At Duke, he worked in a laboratory focused on medical devices. There, he was inspired by an M.D.-Ph.D. student to pursue a medical degree and continue his research work.

Dr. Agrawal, a physician-scientist and instructor of medicine at Vanderbilt University Medical Center, recently received the Aldrighetti Research Award for Young Investigators. The two-year grant, supported by Janssen Pharmaceuticals through a partnership with the Pulmonary Hypertension Association (PHA), supports the careers of junior researchers studying pulmonary arterial hypertension (PAH).

Dr. Agrawal’s path toward pulmonary hypertension (PH) was gradual. It also was personal.

“I have a family member who suffers from PAH,” he says. “I get to see firsthand the effect that PAH has on the life of patients and families.”

‘That the very people who are most affected by PAH believe in my research is great motivation to keep moving forward with finding new treatments.’

– Vineet Agrawal

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While in the medical scientist training program at the University of Pittsburgh, Dr. Agrawal gravitated toward clinical medicine and cardiology.

He developed a focus on PH and right ventricular failure based his clinical training.

As a medical resident at Johns Hopkins Medical Center, he noticed many therapies for patients with left- heart failure but fewer treatments for PAH patients with right-heart failure. That unmet need motivated him to focus on developing treatments to improve the lives of people with PAH. One of the fundamental causes of PAH is the destruction of lung vessels. That destruction ultimately causes high pressures and right heart failure. Despite many treatments to improve the longevity and quality of life for PAH patients, none reverse the changes that occur in the lung vessels.

Dr. Agrawal seeks to understand how to reverse the destruction of lung vessels. He and his colleagues have identified a new protein, TGF beta receptor 3, that might be able to restore normal metabolism in PAH lung vessels.

He hopes his findings will lead to a diseasemodifying therapy for PAH that ultimately could reverse the alteration in lung vessels and possibly lead to a cure.

“It is particularly an honor to receive the Aldrighetti Young Investigator Award by an organization that consists of the very people who are most invested in understanding and treating PAH,” he says. “That the very people who are most affected by PAH believe in my research is great motivation to keep moving forward with finding new treatments.”

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30 YEARS OF PHA

30 YEARS OF PHA

PHA Welcomes Matt Granato

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he Pulmonary Hypertension Association (PHA) welcomed new leadership as its 30th anniversary year began.

Matt J. Granato joined PHA in January as its third president and CEO. He previously led the Society For Maternal-Fetal Medicine. As the society’s chief executive, he worked with physicians and health care providers who treat pregnant people at risk of complications from pregnancy itself or underlying conditions.

“While I am new to the pulmonary hypertension (PH) community, PHA’s mission to improve and extend lives is a common thread of my career,” he says.

Matt says his tenure at PHA began at a remarkable time: the start of a new year, new milestones for PHA, the launch of COVID-19 vaccines in the United States and new legislation to end surprise medical bills at out-of-network rates.

“The legislative victory seems to signal an auspicious start for my new position, PHA’s 30th anniversary and a strategic, unified approach to defeating the pandemic,” he says.

Vision for the future Under Matt’s leadership, PHA will continue to place patients at the center of its work. “By walking in the patients’ shoes and seeing the world through their eyes, our goals will become more clear and easier to accomplish,” he says.

Among his goals for PHA this year and beyond is a strategic focus on its activities. The organization will rely on its strategic plan as a guiding principle for its initiatives. He aims to ensure each program, project and plan fits within the strategic plan.

“If something doesn’t fall in line, we will need to reassess its purpose,” he says. That mindset will help PHA streamline initiatives to ensure it properly allocates resources where they make the most impact.

Matt also wants to strengthen PHA by further investing in employees. “Maintaining a strong, highly skilled, high-performing team requires continuing professional development and cross-functional collaboration,” he says. PHA plans to invest in opportunities that allow all staff to learn or update new skills or develop new knowledge to help PHA become more effective, efficient and innovative.

Similarly, Matt hopes his longtime experience in health care and association management will be an asset to PHA. Patients first Matt started his association career in 2002 at America’s Blood Centers, a trade association of

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Matt and his kids enjoy springtime in D.C. in 2019.

community blood centers responsible for 50% of the U.S. blood supply and a quarter of the Canadian blood supply. He worked with physicians and administrators to ensure safe, ample blood supplies for emergencies, as well as the daily needs of people with sickle cell disease, new mothers and babies, and people undergoing surgery and blood disorder or cancer treatments.

During that time, he interacted with people whose lives depended on safe blood supplies and discovered their stories. He met bereaved families who were able to spend “extra time” with loved ones because of transfusion treatments.

‘By walking in the patients’ shoes and seeing the world through their eyes, our goals will become more clear and easier to accomplish.’

– Matt Granato

“The faces of the families were constant reminders of what we did and why we did it,” he says.

“Knowing that our work had enabled providers to do their best or had given patients even a few more hours with loved ones was rewarding and a reason to keep trying to do better.”

In everything the organization did, it kept a visual of the patient receiving treatment, similarly to the way PHA has ensured patient-focused support and services since its founding 30 years ago, Matt says.

Before joining America’s Blood Centers, Matt was as a legal analyst at the Organization of American States, a multi-country international body similar to the United Nations, confined to the Americas. He was responsible for assessing human rights abuses in three countries and recommending ways to repair those abuses to the Inter-American Commission on Human Rights.

In his personal life, Matt enjoys traveling with his family. Before the pandemic, he, his spouse and their two sons visited many U.S. states, Canada, Europe and South America. Originally, he grew up in Argentina in what he describes as a typical Italian family. He also lived in the U.K., where he attended college, France and Germany.

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30 YEARS OF PHA

30 YEARS OF PHA

By Lindsay Thurman

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Lindsay Thurman has had many ups and downs since her 2008 idiopathic pulmonary arterial hypertension (IPAH) diagnosis. For the past year, the Louisville, Kentucky, resident been experiencing mostly ups, thanks to a medication change. Over the past year, Lindsay’s lung capacity has increased enough that she took up running during the COVID-19 pandemic.

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oward the end of 2019, I noticed that my I have enjoyed walking long distances for exercise, symptoms were getting worse, so I made a especially with hills to challenge myself. mental list of all of the things I needed to tell One day in April I was going up a particularly steep my doctor for my upcoming appointment. I didn’t hill on a six-mile walk, and I couldn’t remember get the chance. During my six-minute walk test, I being able to breathe this well. I made up my mind couldn’t catch my breath. that when I got home, I was going to see if I could The nurse practitioner felt my pulse and jog. I had attempted that before my initial diagnosis immediately wanted an and failed every time. electrocardiogram (EKG). By When I got home, I took a the time I was hooked up, the deep breath and started a very ‘Every time I run it feels moment had passed. But the slow jog. To my shock and like a miracle.

It wasn’t nurse practitioner said that my amazement, I could breathe just that long ago that I heart was definitely in some sort fine. I thought, “Am I breathing of arrhythmia. normal? Yes, still normal. This passed out in my living My doctor sent me to the is weird.” room after mild exertion hospital for observation. I I made it around the culwas worried I would need to de-sac I live on, which ended due to my PAH.’ begin IV meds, but my doctor up being half a mile. I was decided to swap out one of my shocked! I started calling friends oral medications for another in the same pathway. and family to share my excitement. All I could think This medication worked wonders for me. I felt was that I wanted to do it again. like I had so much extra room in my lungs that I The next day I ran two miles. After a couple of practically had to relearn how to breathe. weeks, I ran 3.6 miles. I decided to try hills and ran Over the next couple of months, I was enjoying over three miles at a park with two very large hills. living symptom-free. Before and since my diagnosis, The next day I did two laps and completed 6.1 miles

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30 YEARS OF PHA

30 YEARS OF PHA

F with four big hills! That was all within a month of my first half-mile jog.

Over the summer and fall, I fell in love with running. I competed in three virtual 5Ks and decided to compete in a series of local races called the Triple Crown. The series includes a 5K, 10K and 15K.

By September, I completed an 8.15-mile run, and I decided to see if I could run a 15K. I surpassed that goal and ran 11 miles. Afterward, I felt energized and amazed. I realized that I might be able to complete the local 13.1-mile mini marathon. That longtime dream had seemed impossible for most of my life but now felt completely achievable.

I started longer daily runs and eventually decided to attempt another long distance. In December 2020, I ran 16.3 miles. In January 2021, I ran 20 miles.

Today, running a full marathon seems like a real possibility. I now regularly run 10.5 miles. Over time, I plan to increase that distance two miles at a time. I signed up for the Triple Crown and the mini marathon, and I hope that with enough training, I

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can complete a full marathon this November.

Every time I run it feels like a miracle. It wasn’t that long ago that I passed out in my living room after mild exertion due to my PAH. I spent my entire adult life making the best of my circumstances. I learned to be thankful for the blessings in my life and accept the challenges I face.

My life has been complicated by constant doctor appointments, managing countless prescriptions and diagnoses, and a strict gluten-free diet for as long as I can remember. My only wish was to have some semblance of normalcy while attempting to be the best possible version of myself.

Running is an amazing gift from God. I am forever grateful to my doctors and the pharmaceutical companies that develop better treatments for such a rare disease.

I don’t know how long my lungs will allow me to continue running, but I am truly blessed that, for the time being, I am living a dream I dared not allow myself to imagine.

acebook Live discussions on COVID-19 vaccines in English and Spanish kicked off a new Pulmonary Hypertension Association (PHA) patient education series.

The series, “PHA Live,” features monthly programs on health, wellness, science and research topics for those affected by (PH).

The series began in January with a Spanishlanguage Q&A with Fernando Torres, M.D., medical director of lung transplantation and head of the PH program at University of Texas Southwestern Medical Center.

An English-language discussion followed with Victor Tapson, M.D., FCCP, FRCP, a pulmonary vascular disease specialist at Cedars-Sinai Medical Center in Los Angeles.

In February, Ioana Preston, M.D., director of the Pulmonary Hypertension Center at Tufts Medical Center, led a women-only discussion of “PH, Intimacy and Self Image.”

Future topics are expected to include pediatric issues, Sjogren’s Syndrome and connective tissue

diseases, caregivers, chronic thromboembolic pulmonary hypertension, left heart disease, congenital heart disease, HIV/AIDs and transplant.

All previous webinars are available for viewing on demand at PHAssociation.org/PHALive.

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30 YEARS OF PHA

30 YEARS OF PHA

Left: Dr. Jim White and Tyler Garigen.

J

im White, M.D., Ph.D., is passionate about the work he does with the Pulmonary Hypertension Association (PHA) to improve and extend the lives of people with pulmonary hypertension (PH).

“The patient-centric focus … means that everything we do has to be clearly connected to patients – whether we are planning communitybuilding activities, disease education for patients, materials to raise awareness among health care providers, or research,” says Dr. White, PH program director at the University of Rochester, a PHAaccredited PH Care Center in New York. “There is an enormous range of things PHA does, but the leadership at all levels makes sure every PHA activity will clearly benefit the patients afflicted by this awful disease.”

Dr. White is among the many health care professionals, families, caregivers and people with PH who support PHA’s mission. He became involved in PHA after meeting Raymond Benza, M.D., and Victor Tapson M.D., at a conference. Since then, Dr. White has served on the editorial board for Advances in Pulmonary Hypertension, PHA’s scientific journal, and he has presented at the past six PHA International PH Conference and Scientific Sessions.

He also is a member of PHA’s Scientific Leadership Council.

Like Dr. White, Fran Rogers, M.S.N., CRNP, found PHA’s focus on patients appealing, which motivated her to volunteer for the organization.

“PHA is an outstanding organization devoted to finding a cure for PH,” says Fran, PH clinical coordinator at Temple University Hospital’s PHAaccredited PH Care Center. “Meeting the needs of patients and caregivers is central to PHA’s mission.”

Fran, immediate past chair of PHA’s PH Professional Network Executive Committee and a

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Right: Isla Grey.

Bottom: Fran Rogers, Dr. Anjali Vaidya, Lori Warren and Pat Sampson.

‘PHA is an outstanding organization devoted to finding a cure for PH. Meeting the needs of patients and caregivers is central to PHA’s mission.’

– Fran Rogers

former member of PHA’s Board of Trustees, also makes annual contributions to the organization.

Each year since 2016, she leads Team Temple Health, a fundraising team for the Philadelphia O2breathe Walk.

“As a health care provider, I see the impact of donations firsthand,” Fran says. “PHA has helped so many of our patients and families, and I share those stories with all potential donors.”

Similarly, Dr. White and his wife, Dr. April Luehmann, have been PHA donors for 15 years. Dr. White also participates in his local fundraising event, the PHight for Life Walk and Fundraiser.

“The best part about PHA is the community building, which is core to every PHA activity,” he says. “[PHA programs] bring the community together – patients, researchers, health care providers and caregivers – to celebrate, grieve, educate, empower, excite and laugh in hopes for a better tomorrow.”

That’s particularly true for Jennifer and Joe Morrow, who see a brighter future for their daughter Isla than they did four years ago.

At the time, the family thought then 3-year-old Isla probably wouldn’t reach school age or attend school.

Doctors found PH when Isla was undergoing surgery to correct a heart murmur.

‘[PHA programs] bring the community together ... to celebrate, grieve, educate, empower, excite and laugh in hopes for a better tomorrow.’

– Jim White

As the Morrows researched PH in the hospital waiting room, they knew their lives had changed forever. “Seeing the word ‘fatal’ was heartbreaking,” Jennifer says.

At a recent doctor visit, Jennifer and Joe heard “teenager” for the first time. They credit Isla’s doctors, research and PH awareness for Isla’s brighter outlook.

And the family is “100% committed” to further raising awareness by contributing to PHA.

PHA’s commitment to funding research makes possible the kind of advancements that have helped patients like Isla.

Dr. White cites “a bumper crop of brand-new ideas” that could make treatment simpler and more effective. “One of our key goals … is to invest in especially talented and exciting young people – hoping that they will get bitten by the PH fever and focus their professional efforts on PH for the next 30 to 40 years.”

Help continue PHA’s patient-centered focus. As a nonprofit organization, PHA relies on donations and grants from people, companies, foundations, and civic organizations to provide services, patient support and research funding. To bolster PHA’s mission, visit PHAssociation.org/ donate.

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30 YEARS OF PHA

30 YEARS OF PHA

Introduce Yourself To your Members of Congress

Advocating for a

E

arly this year, the Pulmonary Hypertension Association (PHA) wrote to members of Congress, describing the needs of people with pulmonary hypertension (PH) and asking policymakers to help fight this disease.

PHA sent a similar letter to President Biden at the end of 2020 before he took office. The letters are the beginning of PHA’s work with the new Congress and administration to advance policies that improve life for people with PH – work that depends on you.

Personal stories from constituents are one of the things most likely to motivate elected officials to action. When members of Congress connect with someone affected by PH in their states, they are more likely to make decisions that benefit the PH community than they would be if they heard only from PHA staff.

Here are some of PHA’s advocacy priorities and how you can help build a brighter future for everyone with PH. • Maximize access to safe, effective and affordable health care for people with PH during the COVID-19 pandemic. PHA encourages the Health and Human Services Department to prioritize vaccine access for people with PH regardless of insurance type. PHA is working to sustain robust access to telehealth throughout the pandemic, as well as reimbursement, so PH patients can work with their medical teams to plan the best care for them.

• Reduce the burden of out-of-pocket health care costs. PHA is a leader in efforts to protect access

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to charitable assistance and ensure assistance funds are fully applied to patients’ deductibles and out-ofpocket maximums.

• Expand access to adequate, affordable health insurance. PHA is fighting to expand Medicaid, end the Medicare waiting period and maintain Affordable Care Act patient protections.

• Ensure health care is based on clinical judgment and the patient-clinician relationship.

People with PH need access to care from expert specialists and targeted treatments those specialists recommend. PHA advocates for comprehensive networks and formularies, limits on step therapy and other benefit-management strategies, and improved access to portable and liquid oxygen.

• Increase PH research funding. Through PHA’s advocacy, Congress regularly calls on the National Institutes of Health and Centers for Disease Control to expand their investment in PH research and awareness programs. Research funding drives discoveries that extend and improve life for people with PH.

Members of PHA’s grassroots advocacy network receive monthly email updates and are the first to know about urgent calls to action. To join, email Advocacy@ PHAssociation.org or call 301-565-3004, x749.

In January, Congress welcomed more than 60 new members. Many are learning about PH for the first time and don’t understand how it impacts every aspect of life for people like you in their states. You can change that.

PHA is here to help you share your PH story with your members of Congress. Whether they are newly elected or returning veterans, now is a good time to connect with senators and representatives.

Help ensure fighting PH is among their legislative priorities.

Start by sending a personalized email to your members of Congress at congressweb.com/PHA/41.

Ready to take the next step? Work with PHA to make personal connections with congressional staff by scheduling a phone call or video meeting.

PHA provides everything you need to make your meeting a success. Schedule your meeting at PHAssociation.org/advocate or call 301-565-3004, x749.

PH Advocates Help Pass No Surprises Act

Thanks to the efforts of the pulmonary hypertension (PH) community and others, Congress passed the No Surprises Act Dec. 28.

The law is designed to prevent health insurance companies from charging out-of-network rates for health care when no reasonable in-network alternative exists. The bill ensures in-network coverage for care provided by out-of-network clinicians at in-network facilities, as well as

emergency care and air ambulance service.

With these essential components signed into law, advocacy groups will build and expand patient protections to cover ground ambulance and other services.

Last year, PH advocates sent more than 600 messages asking Congress to end to surprise medical billing. Congratulations to everyone who contributed to this tremendous success.

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And Rare Diseases Lisa Kimble, 38, lives in Coolidge, Arizona, with her husband, J.R., and their sons, Caden, Dakota, Titan and Canyon. In addition to pulmonary hypertension, she has struggled with several other rare diseases: hereditary hemorrhagic telangiectasia (HHT), endocarditis, osteomyelitis and hemoptysis, all diagnosed within the last decade. She stays home with her boys and enjoys playing video games, going on walks, watching movies and baking.

By Lisa Kimble

W

hen I was a child, I had frequent nosebleeds. They were intense, but I’m not sure my parents thought much of the situation. As I got older, the nosebleeds became less frequent. I would usually get one if we drove into higher elevation or if I got bumped playing sports.

When I was 10, I took my first plane trip from San Diego to eastern Pennsylvania. I was excited to visit that side of the country, where my extended family was from. But by the time we arrived back home, I was constantly struggling to breathe with any exertion.

My parents realized something was wrong. They set an appointment for me to be checked out. The diagnosis came back as asthma. Asthma? I knew many people who had asthma. It seemed like a doable diagnosis. We kept going back to the doctor. I had allergy tests, which showed mild allergies.

It wasn’t what the doctors expected. They decided the shortness of breath was exercise-induced. I was sure the magical inhaler would fix everything. But it didn’t do much except leave a nasty taste in my mouth. More tests. The doctors thought I was faking

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not being able to breathe. My dad taught me some breathing techniques, and life went on.

Conditioning and complications In high school, I wanted to play basketball. I hoped the conditioning would fall into place. A couple times a year, we would do wind sprints. I would be all right for a bit, but around the halfway mark, my ears would start popping. It was like I could hear the ocean. I had a great coach who recognized I would have passed out had I pushed more. I would sit out for a bit and come back when I was ready.

After high school, I couldn’t keep up at the college level and played pickup games around campus. I eventually met my husband. We got married and were shocked to find out I was pregnant with twins.

I was exhausted through most of my pregnancy. I had two perfect baby boys. My cesarean section had minor complications: My hematocrit dropped, which led to a blood transfusion.

During my post-pregnancy checkups, I told my doctor that I felt overly tired. He responded that I

had just had twins and of course I was tired. I knew it was more than that, but insurance issues put it to the back of my mind.

I started trying to exercise, but it always seemed like too much. After a few years, I went back to school. I planned to get a physical education degree.

I was keeping up when I got pregnant again. My teachers noticed that I often struggled to breathe. I asked my doctor, but she wasn’t concerned. Over the years, I was told multiple times that I just needed to exercise more. Exercise would solve everything.

After I had my son, a nurse said he thought he heard a heart murmur. Other people tried to ‘They soon listen for it and couldn’t find it.

that doctors could patch a hole, which in most instances, could reverse the PH. The next few days I prayed that an MRI would show a magical, fixable hole. Unfortunately, it showed no hole. The doctor said pregnancy was dangerous for people with PH. He referred me to doctors who specialized in my condition. The following week my siblings drove me to meet my new PH specialist, Lynnette Brown, M.D. It was a little overwhelming. So many tests had to be done. While we waited in an evaluation room, my siblings and I joked around, hoping to lighten the mood. My new nurses learned that seemed confused that I was so even in rough times, I lighthearted for such a grim diagnosis. They soon learned Rough pregnancy preferred to laugh and that even in rough times, I enjoy what life I might Three and a half years later, I preferred to laugh and enjoy have left.’ got pregnant with my youngest. what life I might have left.

It was a rough pregnancy. I was A right heart catheterization in and out of the hospital, and confirmed I had fairly severe I worried I would miscarry. After the first trimester, PH. Doctors couldn’t tell where the blood was I developed a cough. I went to my doctor, and his getting mixed. nurse practitioner heard an odd murmur.

Then I had a transesophageal echocardiogram, They ordered an echocardiogram. The cardiologist followed by a regular echocardiogram with a bubble called me after the procedure and wanted to see me test. It showed an odd flow. the next day. I was extremely concerned. I had dealt NICU in the RICU with family medical problems, and I knew that it had to be serious. I didn’t sleep much that night.

The cardiologist said I had pulmonary hypertension They settled me into my room and started me on (PH). Based on the echocardiogram, it seemed fairly Flolan. We were unsure about the duration of my severe. But because there seemed to be mixed blood, stay, but the team hoped they could send me home he said I might have a hole in my heart. He explained in a few weeks after I mastered my new medicine.

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Memorializing a Thanks to the diligence of Greg Elliott, M.D., Dr. Brown and a team of other medical professionals, I had a C-section at 29 weeks. My baby spent three months in the hospital to finish developing but for the most part was healthy. I had few complications and went home within two weeks.

Fast forward However, my pregnancy quickly changed that plan.

After about a week in the hospital and in week 22 of my pregnancy, my water broke. I thought my baby most likely wouldn’t make it. However, I was able to carry him until 29 weeks. I spent a long time in the hospital — not in the maternity area, but in the respiratory intensive care unit (RICU). They eventually blocked off the room next to mine in case they had to deliver the baby there. They called it the NICU (neonatal intensive care unit) in the RICU. The doctors suspected the odd blood flow was caused by an arterial venal malformation (AVM) and suspected that I had hereditary hemorrhagic telangiectasia (HHT).

It made sense. My struggle to breathe wasn’t in my head. It wasn’t going to be corrected by doing more exercise. I was finally starting to understand why I had struggled my whole life. I started an oxygen regimen of three to six liters at rest.

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The doctors repaired my AVM in November 2020 to prevent a more catastrophic bleed out. My heart seems to be handling it well, and my oxygen saturation is in a far more normal range. I’m not sure what the long-term effects will be. I’m still trying to figure out the PH and HHT situation.

As for my little preemie baby, he is 10 now and doing well. My twins graduated from high school in March 2020 and now have jobs, which I’m chauffeuring them to.

My younger two have been doing home school since the pandemic. They’ve made a lot of trips around the neighborhood on their scooters.

We are a bit of a gaming family, which keeps us busy during the pandemic. We play World of Warcraft together, and the kids are super into the Legends of Zelda games. We also spend a lot of time fixing cars and playing around on fourwheelers.

BEAUTIFUL LIFE

W

hen Terry Teachout met Hilary Dyson in 2005, he knew she was the one.

“It was love at first sight, without a doubt,” Terry recalls.

Hilary quickly revealed that she had pulmonary hypertension (PH), a disease Terry had never heard of. Hilary explained that her initial symptoms were shortness of breath – she found it increasingly difficult to workout at the gym. After years of doctor appointments, she was diagnosed with PH in 2003 at age 47.

Her family was stunned by the news and found it difficult to take in, says Terry. Her life totally changed after her diagnosis. She had been living in New York City, but moved back to Connecticut. She wanted to be closer to her family since she assumed that the disease would kill her within a couple of years.

After meeting Hilary, Terry turned to the limited information available at the time to learn more about PH. He didn’t care that Hilary might live only two more years – he was committed to sharing in her PH journey, whatever that looked like.

Terry and Hilary married in 2007. A few years later, Terry stumbled upon the Pulmonary Hypertension Association (PHA) while surfing the web.

“The biggest thing PHA did was help us feel less lonely,” Terry says. “We didn’t know anyone with PH. In fact, neither one of us had even heard of

the illness. Even though Hilary’s doctors were kind and caring, we felt terribly alone. PHA made a big difference.”

Terry found vital support and educational resources on PHA’s website. “PHA maintains a first-class website that supplies one-stop information about every aspect of the disease and its treatment,” he says.

“Its very existence has been reassuring.”

Terry and Hilary had 15 beautiful years together as husband and wife, thanks in part to advancements in PH research and treatments that helped extend Hilary’s life.

Hilary died in March 2020 after complications from a double lung transplant. “I am so grateful for the life we had together,” he says.

After Hilary’s death, Terry asked people to contribute to PHA in Hilary’s memory. And Terry continues his personal donations.

“I believe so deeply in PHA’s mission, which mattered so much to Hilary and continues to matter to me after her death,” Terry says. “If PH matters to you, either as a sufferer or as a caregiver, I can’t think of a cause more deserving of your support.”

Help PHA provide the support, education, and research programs that the PH community needs.

The Pulmonary Hypertension Association is a nonprofit organization that relies on the support of donations to fund our mission. To join Terry in supporting PHA, visit PHAssociation.org/donate.

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C

olleen Connor and Nola Martin lead the University of Pennsylvania pulmonary hypertension (PH) support group in Philadelphia. About 12 people regularly attend its remote meetings, which take place monthly.

Nola, the youngest of eight children born and raised in Philadelphia, was diagnosed with pulmonary arterial hypertension (PAH) due to scleroderma in 2010.

She works in a charter school, where she helps students and their families who face homelessness.

She discusses why she initially joined the support

group, what motivates her to volunteer and the benefits of participating in support groups.

Colleen of West Chester, Pennsylvania, lives with her husband Shawn, son Ryan, daughter Keira and dog Cody. She was diagnosed with PAH in November 2007 after begging a cardiologist to perform an echo.

Since then, she has volunteered for the Pulmonary Hypertension Association (PHA) in multiple roles, including as a current member of the Board of Trustees. “PHA gave me so many resources and hope when I was utterly lost upon diagnosis,” she says.

By Nola Martin

My niece and her three boys are a big part of why I am a PHA support group leader and why I initially joined the support group. When I was hospitalized for the first time with pulmonary hypertension (PH), I had to be away from my niece’s boys for two weeks.

When I called from the hospital, the youngest asked why wasn’t I home and burst into tears. That broke my heart, and I vowed to do everything I could to fight.

When I was diagnosed, I had never heard of PAH or scleroderma. After the doctor said there was no cure, everything became a blur, and I thought, “I am too young for my life to be over.”

I did a Google search for PH, which was a huge 30

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By Colleen Connor

mistake. Everything I read made me believe I had a maximum of three years to live.

Joining the PHA support group provided me with valuable, accurate information and connected me with people who understood what I was going through without judgment.

Then it became so much more. We weren’t just support group members; we became friends and family who check up on one another and look forward to seeing each other at meetings.

We celebrate the milestones in each other’s lives, including lung transplants, finding medications that work better, improved walking distances on the six-minute walk test, and no longer having to wear oxygen.

We get to know family members, caregivers and close friends. These things inspire me to fight and do my part to find a cure.

I once met an Uber driver who was diagnosed with PH and was afraid to go back to the doctor after her initial diagnosis. By the end of the ride, she gave me her phone number and promised she would go the PHA website to find a PH specialist.

My inspiration to keep fighting is my home family, work family and support group family.

The first thing I did as a volunteer was advocate. I wanted the public to know that PAH could happen to anyone, including a young mom. Our kids were 3 and 7 years old when I was diagnosed.

I attended PHA’s congressional luncheon in 2009. At that point, the Tom Lantos Pulmonary Hypertension Research and Diagnosis Act had been introduced in the House of Representatives but not the Senate.

I shared my story in a meeting with Sen. Robert Casey and asked him to introduce the PH bill in the Senate. By the time the lunch program ended, Sen. Casey’s staff had called to say that he would introduce the legislation, which he did a few days later.

In my role on PHA’s Board of Trustees, I serve on the governance and development committees.

My family and I organized Philadelphia’s Hope for a Cure PHA Gala in 2013, 2015 and 2017. I also volunteer for Unite for HER, a nonprofit that supports women with breast and ovarian cancer.

The most rewarding part of leading a PHA support group is working as a team with Nola Martin and Chris Archer-Chicko, CRNP, MSN. Chris started the group, led it for years and is still involved. I

enjoy connecting with our support group every month. We have become a family and are each other’s inspiration.

My mom inspires me to volunteer. She and my dad raised eight children, and I can’t say enough about my husband, children, parents, siblings, their spouses and families, and my in-laws. I’ve always drawn on their energy and support.

My family members are terrific PHA supporters.

They advocate with me in D.C. and attend conferences and galas. I never have to figure anything out alone. My mom is amazing. If I become half the woman my mother is, I will have succeeded.

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A

s the COVID-19 pandemic continues, the Pulmonary Hypertension Association (PHA) continues to host all support group meetings virtually.

Virtual meetings help the community remain connected, supported and informed – without the risk of transmitting or contracting the virus. As the pandemic wore on, the benefits of remote meetings evolved from more than ways to prevent virus transmission.

Now people can join from anywhere, as long as they have internet or phone access. And they can join any group, not just the closest one, which means more opportunities for support, learning and meeting new friends.

Here are some advantages attendees report:

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No weather worries

No car needed

In Edmond, Oklahoma, the weather is harsh in the early months of the year. Nicole Fitzgerald finds it tough to ask people to travel to in-person meetings. “The virtual meetings are a great solution to that,” she says. “We enjoyed being able to see one another after so long.

And because we all have to be so careful, just seeing and talking to people outside of our own bubbles is a nice change of pace.”

Pre-pandemic transportation challenges often prevented Bonnie Patricelli, of Clementon, New Jersey, from attending in-person meetings. She no longer has to worry about getting to meetings while juggling work and caregiver duties. “I am glad to see so many friends online,” she says.

PATHLIGHT // ISSUE 1

have become part of support group communities.

“Because we are so spread out, we found the response to having a virtual meeting much bigger,” says Nikole Nichols, a leader of the St. Mary’s Regional Medical Center support group in Reno, Nevada. “Many more people who would not have traveled the distance for an in-person meeting were excited to attend a virtual meeting.” The group serves a large region with limited access to PH specialists.

In Corcoran, California, Gerardo Estrada, had never talked to another PH patient outside of his doctor’s waiting room. So appreciates the virtual connections he’s made. “It’s hard enough dealing with pulmonary hypertension, and COVID-19 makes it even harder,” he says. “At the virtual meeting, I was able to get answers about COVID-19 from a professional. And I enjoyed hearing from other patients on how they are dealing with their PH. I’m looking forward to the next virtual PH meeting.”

Provides emotional support while physically distancing “I have found the meetings enormously helpful,” says Nancy Zeppa of Burlington, New Jersey.

“It is great to see and hear from new and old friends. In this

bizarre world we are living in, it’s safe and emotionally supportive.”

Reduces feelings of isolation Many people have felt increased isolation and anxiety over the past year because of the pandemic, increasing their need for connection through support groups. Since virtual meetings have become safe, effective ways to connect, many patients use them to combat isolation and anxiety related to the virus.

For Terry Jones of Tampa, Florida, COVID-19 precautions made life lonelier. But frequent support group meetings help him cope. “Our PH support group meets every few weeks, and it helps a lot.”

Similarly, Amanda White of Millbury, Massachusetts, relies on the meetings to combat isolation and anxiety caused by the pandemic. “I appreciate the move from in-person to virtual meetings. I like the support while being able to stay safer at home.”

Chris Archer-Chicko, CRNP, M.S.N., says the pandemic inadvertently led to new ways to interact.

“We don’t know how long we will have to adjust to this way of living, says Chris, of the University of Pennsylvania’s Lung Center. “This is a wonderful opportunity to keep the PH community connected.”

No geographic barriers People can join from anywhere as long as they have internet or phone access. And they can join any group, not just the closest

one. Many people who never attended in-person meetings because they were homebound or because they lived too far away

Find an upcoming meeting at PHAssociation.org/supportgroups. When you RSVP for a meeting, the PHA support group leader will send instructions on how to join by telephone, smart phone, tablet or computer.

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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:

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.

Gloria H. Anderson

Connie Curran

Bruce P. Hediger

Carlos Mendoza

Elaine L. Schaffer

Trudy Barna-Lloyd

Christina L. Dakhlian-Eastman

Jean F. Heyman

Beamon C. Minton

Marian Scott

Ruth Dalton

Lisa Iannone

Jason Mitchel

Katherine S. See

Janice Janus

James Moran

Florence Shogi

Rebecca L. Johnson

John Morgal

Jeffery Sigmon

Dawn M. Jones

Linda Munroe

Pamela J. Smith

Marianelle Jordan

Robert J. Mushinski

Melanie S. Joziatis

Otis Nelson

Aubrey Elizabeth South Herrera

Emma Karlson

Kim J. Norman

Wanda Kelly

Theresa E. O’Reilly

Cecilia Kelsey

Adriana Pedrosa

Carolyn Klaum

Helena W. Pietro

Nadezda Koon

Robert S. Plain

Lawrence J. Kunkler

Janet Polachek

Beatrice Kwoka

Carolyn H. Pugh

Ornah Levy Broome

Virginia V. Quillen

Michele Lisee

Richard F. Radford

Patrick J. Longo

Susan L. Reglin

Charlotte J. Lowe

Patricia Reish

Martha Lusk

Kevin O. Rounds

Dudley Martens

Wanda S. Sabolski

Sharon J. May

Patricia O. Sampson

Quilla Mayo

Lucy M. Sargent

Janet I. McCann

Bob Sauvie

Hannah McGovern

Edna Saxon-Keyes

Lowell Melvin

Claire K. Schafer

Tari Baskerville Dorothy J. Bath Susan Beall James Beaulieu Louann J. Birch Elizabeth Blake Pamela E. Bradley Jessica Brazzle Frank Bridges Amy Brown Rick Brown Leona E. Brush Jennifer R. Burke Nancy Buss Laura Butcher

Joe Didio Cathrine Dimmitt James R. Dorcy Virginia Elam Titus Eldredge Trudy L. Ensminger Karen Eustice Barbara E. Farmer Jackie Fiore Susan Floyd Joan Fredrick Carol Freer Mary C. Fuller

Mayra E. Camillo Munoz

Lavonne Gilliam

Alan Carlus

Dorothy Goins

Stella Cenci

Gary Graham

Robert O. Chadwick

Walter Grant

Walter Collier

Paul Greco

Ann Corley

Cindy Greenman

Rochelle Creditor

Rowland Hannon

Vincent Crosby

Terry Harmon

Deborah J. Godfrey

Alma Starks June S. Stephenson Sandra Struhs David L. Sturm Shelley H. Sunshine Steve Surchik Karen Sykes Michael Torchiano Peter W. Truzzolino Lois Tucker Breanna N. Turner Mitzi Twine

Marketplace Enrollment Reopens A special enrollment period allows people to apply for health insurance through federal and state marketplace. The new enrollment period, which ends May 15, is in response to the COVID-19 pandemic. It applies to people in most states who aren’t enrolled in marketplace plans. Learn more at getcovered2021.org.

For answers to your health insurance questions, visit the Pulmonary Hypertension Association website at PHAssociation.org/patients/insurance-and-treatment-access/ insurance-101.

Susan Udy Marina Verde Joan Virdinlia Arlene Volkert

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.

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The Pulmonary Hypertension Association (PHA)’s Specialty Pharmacy Feedback Form helps you be your best advocate for your pulmonary hypertension (PH) care. Use the form to tell your specialty pharmacy about what it does well or how it can improve.

When you submit a Specialty Pharmacy Feedback Form, PHA receives a copy of your message and forwards it directly to a contact at your specialty pharmacy. Share feedback with your specialty pharmacy at PHAssociation.org/specialty-pharmacyfeedback.

Rachel G. Stein

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.

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Insurance Find: Pharmacy Feedback Form

PHA thanks Janssen Pharmaceuticals for its Diamond level support of PHA’s 2021 national fundraising events.

Laura* and Rino Aldrighetti Alice A. Arnott* Sandra A. Awood* Dauna L. Bauer* Sylvia M. Becherer* Joan F. Bennett-Schenecker* 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 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* Jessie Kohler-Wenninger Terri L. Kopp* Debbie L. and Mitchell Koppelman Dee* and Walter Kruger* Gloria J. Lang* Marie and Ronald J. Levendoski 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* 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 Daniel R. Walsh* Andrea and Stephen L. White * deceased members PHASSOCIATION.ORG

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Pulmonary Hypertension Association 8401 Colesville Road, Suite 200 Silver Spring, MD 20910

PHA Live is a monthly series of Facebook Live events and webinars on health, wellness, science and research topics.

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PATHLIGHT // ISSUE 1