Pulmonary Hypertension Association

The Pulmonary Hypertension Association strengthened and expanded its grassroots advocate network in 2021 through monthly action alerts and virtual advocacy activities PHA members sent thousands of messages to Congress about proposed legislation to improve life for people with pulmonary hypertension

The messages called for insurance reforms, such as decreasing step-therapy requirements and ending copay accumulators. The PH community also urged Congress to increase National Institutes of Health funding and end barriers to specialized health care during the COIVD-19 pandemic. We also created an Advocacy Committee to strengthen PHA’ s grassroots advocate network The 10 members connect with new and existing advocates They also provide coaching for legislative visits and disseminate advocacy news The members include a diverse mix of five patients and five health care professionals who represent specific geographic regions.

Several Advocacy Committee members began their terms by participating in virtual legislative visits during the PH Professional Network Advocacy Day Committee members provided support to new advocates Many Advocacy Day attendees participated to advocate for their PH patients

Our 2021 victories included the enactment of a Connecticut law that prohibitscopay accumulators The law improves health care access for Connecticut residents with PH and other complex, costly health conditions. The victory is the result of many years of lobbying by PHA, including repeated testimony, calls and letters from 2020-21 Board of Trustees Chair Colleen Brunetti and other rare disease advocates

How Our Members Build Advocacy Power

The Pulmonary Hypertension Association’ s treatment access staff responded to nearly 100 inquiries in 2021 They provided personalized support for questions about financial assistance for copay costs, challenges in accessing oxygen, and the transition from employer-based insurance to Medicare.

PHA also reached out directly to patients about the availability of new financial assistance.

At year end, our 2021 open enrollment campaign provided information and resources to help people select and sign up for Medicare, insurance marketplaces and employer-based insurance

Throughout the year, we provided information and updates on our online insurance and treatment access guide The updates included news about charitable assistance funds opening and closing.

Several submissions to PHA's Specialty Pharmacy Feedback Form helped patients resolve billing and refill issues they previously struggled to resolve

Despite pandemic-related challenges, the Pulmonary Hypertension Association fulfilled its charge to keep health care professionals up to date. PHA offered online courses, its clinical review journal AdvancesinPulmonaryHypertension, on-demand education courses, and PHA’ s PH Professional Network (PHPN) Symposium

PHPN Symposium is an opportunity for PH-treating health care professionals to learn from each other and earn continuing education credits. In 2021, PHPN Symposium took place virtually for the first time. More than 450 people registered for the live Sept. 30-Oct. 3, 2021, event. Sessions remained accessible ondemand through December 2021 PHPN Symposium provided 26 5 accredited hours of continuing education

The theme was “PHiguring out the Puzzle: Pieces to Innovative, Patient-Centered Care ” The most popular sessions included:

• State of the Union in PH

• Advanced PH Hemodynamics

• Navigating Difficult Discussions in PH.

PHPN Symposium attendees

Abstracts at PHPN Symposium

Continuing education

PHA hosted a March 2021 webinar about accurate diagnosis and PH classification About 125 people participated to receive continuing education credit

Online University courses included “CTEPH Treatment Options: A Roundtable Discussion” presented by Matthew D. Bacchetta, M.D., M.B.A.; Ivan M Robbins, M D ; and Joseph G Salloum, M D ; and “Diagnosis, Assessment and Care of Children With PH” presented by Eric D Austin, M D , MSCI

AdvancesinPulmonaryHypertensionjournal informs physicians and non-physician clinicians about important trends affecting their practices It also analyzes new findings in peer-reviewed publications. Five issues were published in 2021:

• PH in the Time of COVID-19.

• Group 5 PH

• PAH as a Systemic Disease

• PH and ILD.

• Genetics and PH.

14,748 Advances in Pulmonary Hypertension subscribers

1,891 Continuing medical education certificates issued

1,506 Enrolled in Online University courses

26 New Online University courses

Despite the challenges of the pandemic, the Pulmonary Hypertension Association increased access to quality pulmonary hypertension care through the PHA-accredited PH Care Centers The PH Care Center network aims to increase access to specialized PH care; enhance health care provider and patient education; secure earlier diagnosis; and improve patient outcomes

In response to COVID-19 and limited in-person site visits at PH care centers, PHA adapted the accreditation review process a remote format. PHA retained all of its accredited care centers in 2021 and added one new center. The interest in accreditation remains strong, with 24 site visits and four new applications to join the PH Care Center network