New PHA Resource: Learn About PH That Occurs at Birth

Jim 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 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.

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.”

‘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

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

– Jim White

Left: Dr. Jim White and Tyler Garigen. Right: Isla Grey. Bottom: Fran Rogers, Dr. Anjali Vaidya, Lori Warren and Pat Sampson.

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.

Advocating for a

Early 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 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.

Introduce Yourself

To your Members of Congress

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.