A publication of the Pulmonary Hypertension Association Issue 1 2021 // Volume 30 No. 1 NewPLUSGuidefor Newly Diagnosed Patients Relief and Hope After ManagingVaccinationsMotherhood and Rare Diseases
PHASSOCIATION.ORG 3 2021 // Volume 30 No. 1 IN THIS ISSUE IN EVERY ISSUE 5 Letter From the Chair 34 Passages 35 Quick Takes 7 Guide Helps the Newly Diagnosed Navigate PH 8 COVID-19 Vaccines: What You Need to Know 11 Feeling Fine About Sore Arms and Side Effects 12 New PHA Resource: Learn About PH That Occurs at Birth 14 Researcher on Quest to Reverse Lung Damage in PAH 16 Meet the CEO: PHA Welcomes Matt Granato 18 Going the Distance: Mile by Mile 22 Funding the Future 24 Advocating for a Brighter Future 26 Managing Motherhood and Rare Diseases 29 Memorializing a Beautiful Life 30 Meet the Leaders 32 Keeping Connected in a Distanced World On our cover: Lindsay Thurman became a distance runner after a medication change. Knowledge. Understanding. Empowerment. 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 Hear an presentationeducationalfroma PAH nurse on topics that may be important to you. Learn Why Understand more about the effects of PAH, the 3 key treatment pathways, and treatment goals. Get Talking Discover how to have more informed conversations about PAH with your care community. Webinars are available at various dates and times so you can register for one that best fits your schedule. Knowledge. Understanding. Empowerment. 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. This program is sponsored by Janssen Pharmaceuticals, Inc. ©2021 Actelion Pharmaceuticals US, Inc. All rights reserved. cp-201358v1 0121 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 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.
Mardi Gomberg-Maitland, M.D., M.Sc. Kristin B. Highland, M.D., MSCR
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 brighterWarmly,2021!
H. Abman, M.D. William R. Auger, M.D.
Steven Kawut, M.D., M.S. Tim Lahm, M.D.
Colleen RamonaConnorDoyle,M.D., M.Sc. Anna R. Hemnes, M.D. William KimberlyHoffJackson, R.N., B.S.N. William Jansen
LEADERSHIPSCIENTIFIC COUNCIL
Matt J. Granato, LL.M., MBA, President and CEO, ex officio
Murali M. Chakinala, M.D., FCCP, chair Anna R. Hemnes, M.D., chair-elect
Karen A. Fagan, M.D. Michael D. McGoon, M.D. Vallerie V. McLaughlin, M.D. John H. Newman, M.D.
Phone: 301-565-3004
Colleen Brunetti, M.Ed., C.H.C., chair
Nicolechair Creech, secretary
Fax: 301-565-3994
Teresa De Marco, M.D. Ankit A. Desai, M.D., FACC, FAHA
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, includingLindsay’srunning.storyreminds me of the first time I met a patient who actually could exercise.
PH PROFESSIONAL NETWORK EXECUTIVE COMMITTEE
Cheri Abbott, R.N., CCRP
Vinicio A. de Jesus Perez, M.D., FCCP, FAHA, ATSF
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.
President & CEO
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.
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.
Trustees-at-Large
John J. Ryan, M.D., M.B., B.Ch., B.A.O. Jeffrey S. Sager, M.D., MSCE
CREDITS
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.
Karen A. Fagan, M.D., immediate past
C. Gregory Elliott, M.D., FCCP, MACP
Cheri Abbott, R.N., CCRP, chair Kimberly Jackson, R.N., B.S.N., chairFranelectRogers, M.S.N., CRNP, immediate past chair
Kimberly Jackson, R.N., B.S.N. Nicole Reid, R.N., B.S.N., DABAT
Erika S. Berman Rosenzweig, M.D. Bruce H. Brundage, M.D. Richard Channick, M.D.
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!
8401 Colesville Road, Suite 200 Silver Spring, MD 20910
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!
Tisha Kivett, R.N., B.S.N. Melissa Magness, M.S.N., APRN, SusieCNP-ACMcDevitt, M.S.N., ACNP-BC
Cover story: Brian Bohannon Photography
Eric D. Austin, M.D. MSCI
Oksana A. Shlobin, M.D., FCCP
Colleen Connor, Lauren Intrieri, Elizabeth Joseloff, Lisa Kimble, Michael Knaapen, Katherine Kroner, Mira Kruger, Nola Martin, Abby Sickles, Lindsay Thurman.
Matt J. Granato, LL.M., MBA
Colleen Brunetti, M.Ed., C.H.C. Board of Trustees Chair, Pulmonary AssociationHypertension
CONTACT
Sonja Bartolome, M.D. Todd M. Bull, M.D. Kelly Chin, M.D.
Matt MelisaWallA. Wilson, D.N.P., APRN, ACNP-BC
Jeffrey Fineman, M.D. Robert P. Frantz, M.D.
Traci Stewart, R.N., M.S.N., CHFN Doug Taylor
CONTRIBUTORS
Matt J. PresidentGranato&CEO STAFF Linda DesignerEditor-in-ChiefBuscheAlannaCooganKarenSmaaldersVicePresident,Communications and Marketing
David B. Badesch, M.D.
Emeriti ex-officio C. Gregory Elliott, M.D., FCCP, MACP Michael D. McGoon, M.D. Edwin Simpson Judith Simpson, R.N., Ed.S.
Deborah J. Levine, M.D.
Jessie Kohler Wenninger, Esq. Mitch Koppelman, Ph.D. Ronald J. Oudiz, M.D. Monica M. Penaranda
Loida A. Johnson, CRNP
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.
Lana D. Melendres-Groves, M.D.
Ronald J. Oudiz, M.D., immediate past
PUBLISHER
Support Line: We’re800-748-7274heretosupport anyone with a connection to PH. (daytime, SubmissionsPHA@PHAssociation.orgPHAssociation.orgplease)toPathlight are welcome. Please email your articles, photos and queries to PHAssociation.org.Communications@
Tony Lahnston, chair-elect/treasurer
Liaisons
Well, we made it to 2021. And while 2020 seemed it might never end, 2021 is starting to look a little Whilebrighter.therestill 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.
Cheri Abbott, R.N., CCRP Frank MuraliCannM.Chakinala, M.D., FCCP
In “Feeling Fine,” Marilyn Hanft, Alberta Wright, and Holly Szmutko share their relief and new hopes after receiving vaccinations early this year.
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.”
BOARD OF TRUSTEES
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.
Stevenchair
Distinguished Advisors
Honorary Carl Hicks
PHASSOCIATION.ORG 5
6 PATHLIGHT // ISSUE 1
We work every day to help patients with pulmonary hypertension. It’s more than a mission—it’s our promise. We strive to help PH patients thrive. BAYER and the Bayer Cross are registered trademarks of Bayer. 100BayerBayer Boulevard, Whippany, NJ 07981 USA ©2017 PP-400-US-3751Bayer August 2017 Science For A Better Life
A 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.Thefree 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 relevant“NavigatingAlthoughHope”publicationsempoweringPHAssociation.org/medicalmembershipnetworks.intoThisnewpublicationcontinuesPHA’straditionofpatientsandcaregiversthroughprevioussuchas“SurvivalGuide,”“Roadmaptoand“UnderstandingPulmonaryHypertension.”PHAnolongerpublishesthosebooks,PH”coversarangeofpracticalandtopicsinaneasy-to-readformat.
Guide Helps the Newly Diagnosed Navigate PH New Resource for New Patients
Do people who already had COVID-19 need the vaccine?
The Centers for Disease Control and Prevention recommends the following prioritization plan:
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:
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
• People 16 to 64 with high-risk medical conditions, including PH, and other cardiovascular and cerebrovascular diseases. Visit CDC.gov for more information.
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.
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.Noneof the vaccines cause COVID-19.
Anna Hemnes, M.D., Vanderbilt University
When can PH patients get COVID-19 vaccines?
Murali Chakinala, M.D., FCCP, Washington University
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.
Phase 1a: Healthcare providers and residents in long-term care facilities.
Are there side effects or allergic reactions to the COVID-19 vaccines?
How long do COVID-19 vaccine protections last? Can the vaccines prevent me from transmitting the virus to others?
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.
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.
Phase 1c includes:
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.
• People between 65 and 74.
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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?
B
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.
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.
HEALTH MATTERS HEALTH MATTERS
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.
How do COVID-19 vaccines work?
• Essential workers not included in Phase 1b.
Despite a couple days of not feeling well, Marilyn “definitely plans” on receiving her second dose.
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.
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.
Feeling Fine
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.
10 PATHLIGHT // ISSUE 1 PHASSOCIATION.ORG 11 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.
“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.”
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.
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.
Alberta, who has pulmonary arterial hypertension (PAH), says her doctors recommended she receive the
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.
Speeding Up the Process
Marilyn, a retired registered nurse with intensive care and emergency room experience, was diagnosed with chronic thromboembolic pulmonary hypertension (CTEPH) in 2011.
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.
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.
Visit PHassociation.org/COVID-19 and FDA and CDC websites for the latest information about vaccines.
Similarly,X
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.
About Sore Arms and Side Effects
“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.”
‘Best decision’
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).
S
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.
Government agencies partnered with private biotechnology and pharmaceutical companies to provide funding to accelerate clinical development of COVID-19 vaccines.
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.Researchersdiscovered 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.
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.
Although there is no known cause for PPHN, several risk factors exist, including certain tissue and fluid buildup, respiratory distress syndrome or diaphragmatic hernia.
But as many families can attest, that simply isn’t thePHcase.affects people of all ages. In fact, it can arise the moment someone is born.
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/
ulmonary hypertension (PH) often is thought of as a disease of middle age and older people.
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Sometimes PPHN resolves on its own. Other times, expert medical care and interventions might be necessary to help an infant recover. Those
“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.”
NewPediatrics.PHA
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.
That’s why PHA created the free handout about the disease process, risk factors, treatment and recovery. Download the guide at PHAssociation.org/Pediatrics.
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.
interventions include PH medications, nitric oxide and a blood oxygenation system called extracorporeal membrane oxygenation.
“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.”
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.
Marilyn Hanft
Alberta Wright
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.
Resource Learn About PH That Occurs at Birth
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.
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.
P
Dr. Agrawal’s path toward pulmonary hypertension (PH) was gradual. It also was personal.
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).
“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.”
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.
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.
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.
PHASSOCIATION.ORG 15
V
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.”
‘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
‘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.’
30 YEARS OF PHA 30 YEARS OF PHA
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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.
“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.
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.“WhileI 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.
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.
Patients
“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.”
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.
T
Similarly, Matt hopes his longtime experience in health care and association management will be an asset to PHA. Matt started his association career in 2002 at America’s Blood Centers, a trade association of
“The faces of the families were constant reminders of what we did and why we did it,” he says.
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.
Matt and his kids springtimeenjoyin 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
PHA Welcomes Matt Granato
Duringtreatments.thattime, 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.
“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.
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.
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.
‘By walking in the patients’ shoes and seeing the world through their eyes, our goals will become more clear and easier to –accomplish.’MattGranato
Vision for the future first
I have enjoyed walking long distances for exercise, especially with hills to challenge myself.
Over the next couple of months, I was enjoying living symptom-free. Before and since my diagnosis,
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.
One day in April I was going up a particularly steep hill on a six-mile walk, and I couldn’t remember being able to breathe this well. I made up my mind that when I got home, I was going to see if I could jog. I had attempted that before my initial diagnosis and failed every time.
30 YEARS OF PHA 30 YEARS OF PHA
By Lindsay Thurman
PHASSOCIATION.ORG 19
The next day I ran two miles. After a couple of weeks, I ran 3.6 miles. I decided to try hills and ran over three miles at a park with two very large hills. The next day I did two laps and completed 6.1 miles
‘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.’
T
oward the end of 2019, I noticed that my symptoms were getting worse, so I made a mental list of all of the things I needed to tell my doctor for my upcoming appointment. I didn’t get the chance. During my six-minute walk test, I couldn’t catch my breath. The nurse practitioner felt my pulse and immediately wanted an electrocardiogram (EKG). By the time I was hooked up, the moment had passed. But the nurse practitioner said that my heart was definitely in some sort ofMyarrhythmia.doctorsent me to the hospital for observation. I was worried I would need to begin IV meds, but my doctor decided to swap out one of my oral medications for another in the same pathway. This medication worked wonders for me. I felt like I had so much extra room in my lungs that I practically had to relearn how to breathe.
When I got home, I took a deep breath and started a very slow jog. To my shock and amazement, I could breathe just fine. I thought, “Am I breathing normal? Yes, still normal. This is Iweird.”made it around the culde-sac I live on, which ended up being half a mile. I was shocked! I started calling friends and family to share my excitement. All I could think was that I wanted to do it again.
can complete a full marathon this November.
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
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.
diseases, caregivers, chronic thromboembolic pulmonary hypertension, left heart disease, congenital heart disease, HIV/AIDs and transplant.
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.
F
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.
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.”
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).
30 YEARS OF PHA 30 YEARS OF PHA
All previous webinars are available for viewing on demand at PHAssociation.org/PHALive.
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.
with four big hills! That was all within a month of my first half-mile jog.
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.
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.AnEnglish-language discussion followed with Victor Tapson, M.D., FCCP, FRCP, a pulmonary vascular disease specialist at Cedars-Sinai Medical Center in Los Angeles.
Future topics are expected to include pediatric issues, Sjogren’s Syndrome and connective tissue
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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.
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.
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.
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’sparticularly true for Jennifer and Joe Morrow, who see a brighter future for their daughter Isla than they did four years ago.
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.”
‘[PHA programs] bring the community together ... to celebrate, grieve, educate, empower, excite and laugh in hopes for a better –tomorrow.’JimWhite
“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.LikeDr.
White, Fran Rogers, M.S.N., CRNP, found PHA’s focus on patients appealing, which motivated her to volunteer for the organization.
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.“Asa 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.”
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.
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).
Fran, immediate past chair of PHA’s PH Professional Network Executive Committee and a
Left: Dr. Jim White and Tyler Garigen.
Bottom: Fran Rogers, Dr. Anjali Vaidya, Lori Warren and Pat Sampson.
“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.”
Right: Isla Grey.
‘PHA is an –centralpatientsMeetingtoorganizationoutstandingdevotedfindingacureforPH.theneedsofandcaregiversistoPHA’smission.’FranRogers
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.
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PHA’s commitment to funding research makes possible the kind of advancements that have helped patients like Isla.
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.
30 YEARS OF PHA 30 YEARS OF PHA
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.
J
E
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.
to charitable assistance and ensure assistance funds are fully applied to patients’ deductibles and out-ofpocket maximums.
• 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.
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.
• 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.
PH Advocates Help Pass No Surprises Act
• 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.
Here are some of PHA’s advocacy priorities and how you can help build a brighter future for everyone with PH.
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.Startby 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.
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
• 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.
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.Lastyear, 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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• Reduce the burden of out-of-pocket health care costs. PHA is a leader in efforts to protect access
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.
PHA provides everything you need to make your meeting a success. Schedule your meeting at PHAssociation.org/advocate or call 301-565-3004, x749.
Introduce Yourself
Advocating for a
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.
30 YEARS OF PHA 30 YEARS OF PHA
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.
To your Members of Congress
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that doctors could patch a hole, which in most instances, could reverse the PH.
Rough pregnancy
NICU in the RICU
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.
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 seemed confused that I was so lighthearted for such a grim diagnosis. They soon learned that even in rough times, I preferred to laugh and enjoy what life I might have left.
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.
The cardiologist said I had pulmonary hypertension (PH). Based on the echocardiogram, it seemed fairly severe. But because there seemed to be mixed blood, he said I might have a hole in my heart. He explained
Conditioning and complications
After I had my son, a nurse said he thought he heard a heart murmur. Other people tried to listen for it and couldn’t find it.
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.
Then I had a transesophageal echocardiogram, followed by a regular echocardiogram with a bubble test. It showed an odd flow. They settled me into my room and started me on Flolan. We were unsure about the duration of my stay, but the team hoped they could send me home in a few weeks after I mastered my new medicine.
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.
By Lisa WKimble
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.Myparents 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
A right heart catheterization confirmed I had fairly severe PH. Doctors couldn’t tell where the blood was getting mixed.
And Rare Diseases
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.
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.
not being able to breathe. My dad taught me some breathing techniques, and life went on.
Three and a half years later, I got pregnant with my youngest. It was a rough pregnancy. I was in and out of the hospital, and I worried I would miscarry. After the first trimester, I developed a cough. I went to my doctor, and his nurse practitioner heard an odd murmur. They ordered an echocardiogram. The cardiologist called me after the procedure and wanted to see me the next day. I was extremely concerned. I had dealt with family medical problems, and I knew that it had to be serious. I didn’t sleep much that night.
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.
‘They soon learned that even in rough times, I preferred to laugh and enjoy what life I might have left.’
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.
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 ageHer47.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.
hen Terry Teachout met Hilary Dyson in 2005, he knew she was the one.
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’sHilarylife.died in March 2020 after complications from a double lung transplant. “I am so grateful for the life we had together,” he says.
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.
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.
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.
W
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
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.
the illness. Even though Hilary’s doctors were kind and caring, we felt terribly alone. PHA made a big difference.”Terryfound 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.”
Memorializing a BEAUTIFUL LIFE
After Hilary’s death, Terry asked people to contribute to PHA in Hilary’s memory. And Terry continues his personal donations.
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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My younger two have been doing home school since the pandemic. They’ve made a lot of trips around the neighborhood on their scooters.
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).
“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.”
“It was love at first sight, without a doubt,” Terry recalls.
However, my pregnancy quickly changed that plan.
Fast forward
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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.
mistake. Everything I read made me believe I had a maximum of three years to live.
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.
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.
oxygen.Weget to know family members, caregivers and close friends. These things inspire me to fight and do my part to find a cure.
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.
Nola, the youngest of eight children born and raised in Philadelphia, was diagnosed with pulmonary arterial hypertension (PAH) due to scleroderma in 2010.
group, what motivates her to volunteer and the benefits of participating in support groups.
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.Inmy 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
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.
By Colleen Connor
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
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.
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.
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.
She works in a charter school, where she helps students and their families who face homelessness. She discusses why she initially joined the support
C
I did a Google search for PH, which was a huge
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.
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.
By Nola Martin
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.”
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.
enjoy connecting with our support group every month. We have become a family and are each other’s inspiration.Mymom 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.
“Becausecommunities.weareso 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.InCorcoran, 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.”
bizarre world we are living in, it’s safe and emotionally supportive.”
Reduces feelings of isolation
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 Similarly,lot.”
Chris Archer-Chicko, CRNP, M.S.N., says the pandemic inadvertently led to new ways to interact.“Wedon’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 car needed
No geographic barriers
one. Many people who never attended in-person meetings because they were homebound or because they lived too far away
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:
s the COVID-19 pandemic continues, the Pulmonary Hypertension Association (PHA) continues to host all support group meetings virtually.
have become part of support group
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.
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.”
“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
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.
No weather worries
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Provides emotional support while physically distancing
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.
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.”
A
People can join from anywhere as long as they have internet or phone access. And they can join any group, not just the closest
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. RobertaBraunF.Browning* and Lee A. Broadbent Rita and Bruce Brundage
Bruce P. Hediger Jean F. Heyman Lisa
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PHA’s Legacy of Hope
Trudy Barna-Lloyd
Laura H. D’Anna Charles W. DeVier, III* Linda M. Feibel* Barbara T. Gamer Stacey TammyFranklinGausling*D.Gillespie*A.*andDean S. Hazen Mary Jan Hicks
Gloria H. Anderson
Insurance Find: Pharmacy Feedback Form
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.
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Colleen Brunetti Colleen and Shawn Connor Jane P.* and Harold P. Cooper James F. Corbett* Nicole M. Creech
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Carl Hicks, Jr. Phyllis M. Hill* Jackie
S ince 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.
Elaine L. Schaffer
Marketplace Enrollment Reopens
34 PATHLIGHT // ISSUE 1 PHASSOCIATION.ORG 35
CarolDeborahDouglasKelleyJamesCynthiaRitaTheresaDorothyJoyceLarryKarenSallyMaryGloriaDee*JessieLauraStanleyTerriConstanceRichardHoltL.HorrocksG.Ives*L.Jakuboski*T.JusinskiJ.Kelly*Kohler-WenningerTerriL.Kopp*DebbieL.andMitchellKoppelmanandWalterKruger*J.Lang*MarieandRonaldJ.LevendoskiJo*andThomasLinnen*Maddox*BonnieandMichaelD.McGoonJosephW.Mihuc*LindaMiles*S.MoodyD.MoodyPamelaR.MorrisMarjorieD.Mott*L.Mowrer*M.*andHarryJ.Olson*“Terry”E.(Cavanaugh)O’Reilly*andGuyOrthPatriciaR.*andGeraldD.Paton*andJohnR.PicklesJeanD.Pitcher*CarolL.Powell*FrancesA.PriceCarolJ.Posner*andMarcPrioreDianeRamirezRyan*LouiseC.andGeneP.*SalvucciJudithandEdwinL.SimpsonSkumautzMarciaandJackStibbsHelenaM.Strauch*R.TaylorFrankA.Tobac*MarthaandCarlosTorresJ.andRogerK.TowleB.UngarDanielR.Walsh*AndreaandStephenL.White*deceasedmembers
LowellHannahJanetQuillaSharonDudleyMarthaCharlottePatrickMicheleOrnahBeatriceLawrenceNadezdaCarolynCeciliaWandaEmmaMelanieMarianelleDawnRebeccaJaniceIannoneJanusL.JohnsonM.JonesJordanS.JoziatisKarlsonKellyKelseyKlaumKoonJ.KunklerKwokaLevyBroomeLiseeJ.LongoJ.LoweLuskMartensJ.MayMayoI.McCannMcGovernMelvin Carlos ClaireEdnaBobLucyPatriciaWandaKevinPatriciaSusanRichardVirginiaCarolynJanetRobertHelenaAdrianaTheresaKimOtisRobertLindaJohnJamesJasonBeamonMendozaC.MintonMitchelMoranMorgalMunroeJ.MushinskiNelsonJ.NormanE.O’ReillyPedrosaW.PietroS.PlainPolachekH.PughV.QuillenF.RadfordL.ReglinReishO.RoundsS.SabolskiO.SampsonM.SargentSauvieSaxon-KeyesK.Schafer
PHA thanks Janssen Pharmaceuticals for its Diamond level support of PHA’s 2021 national fundraising events.
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 Forgetcovered2021.org.answerstoyourhealth insurance questions, visit the Pulmonary Hypertension Association website insurance-101.PHAssociation.org/patients/insurance-and-treatment-access/at
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:
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.
PHA Live is a monthly series of Facebook Live events and webinars on health, wellness, science and research topics. Pulmonary Hypertension Association 8401 Colesville Road, Suite 200 Silver Spring, MD 20910
