Dear Community Member,
Throughout the past year, the Pulmonary Hypertension Association (PHA) Board of Trustees, with input from the pulmonary hypertension (PH) Community, has developed a strategic plan for PHA that will guide our focus and activities as we work to support people living with PH, their caregivers and healthcare providers, and researchers whose work will one day lead to new therapies that improve quality of life for those living with PH and eventually a cure.
Since the beginning of the year, we have concentrated our efforts and resources in the areas identified by the community as key to achieving our mission to extend and improve the lives of those affected by PH. I am pleased to highlight some of our 2017 accomplishments to date.
Advocate for the PH Community
- During the great concern and uncertainty raised by Congress’ attempts to repeal and replace the Affordable Care Act over the past six months, PHA’s advocacy efforts ensured that we made our voice heard on Capitol Hill. Our efforts included closely monitoring and interpreting proposed legislation and its potential impact on PH patients, meeting with members of Congress and their healthcare staffs to educate them on our health policy priorities and the effects of any proposals on them, keeping members of our community informed and mobilizing them through PHA’s Action Alerts, social media, website and PHANews to amplify their voices. In late July, Congress recessed without passing any legislation. Members of our community can be proud that they made their voices heard through more than 1,700 emails they sent to members of Congress.
Catalyze Research for a Cure
- PHA partnered with the National Institutes of Health (NIH) in May to produce our first public/private joint symposium intended for clinicians currently treating or likely to care for patients living with PH. The focus of the symposium, Challenges in Pulmonary Arterial Hypertension: Breathing, Beating, and Beyond, was to educate and engage clinicians in exploring cutting-edge concepts, therapies and findings in an environment that fostered give and take. Sessions addressed lung and heart-related PH topics as well as controversies related to which patients might benefit from therapies approved for some, but not all classifications of the complex disease. The symposium also included an interactive poster session on PH research. This novel format symposium was a great success with more than 100 attendees and sets the stage for future NIH and other partner symposia.
- After careful and expert peer review, PHA awarded grants to six researchers who are involved in adult and pediatric investigative work at all levels that could lead to new ways of screening some forms of PH and providing insights that could bring us closer to finding a cure.
- With the addition of seven newly Pulmonary Hypertension Association (PHA)-accredited health care sites, more U.S. patients have access to care from facilities that have completed a rigorous review process for providing specialized pulmonary hypertension (PH) care. Among the recently accredited centers are the University of New Mexico School of Medicine PH Program in New Mexico, Vanderbilt University Medical Center’s Pediatric PH Program in Tennessee, and the Pulmonary Hypertension Programs at Cincinnati Children’s Hospital Medical Center in Cincinnati, Ohio and Henry Ford Hospital in Detroit Mich. These centers have earned PHA’s PH Care Centers (PHCC) Center of Comprehensive Care (CCC) accreditation. The other three newly accredited sites are pulmonary hypertension (PH) clinics that were participants in our Regional Clinical Program (RCP) pilot program, designed as part of the expansion of the program. The first RCPs include French Hospital Medical Center’s Central Coast Pulmonary Hypertension Center in San Luis Obispo, Calif., Sentara Norfolk General Hospital’s Pulmonary Hypertension Clinic in Norfolk, Va. and University of Connecticut Health’s Pulmonary Vascular Disease Program in, Farmington, Conn. As part of their participation in the pilot, the three newly accredited centers completed a rigorous review process.
Patient and Caregiver Empowerment
- So far this year, PHA has provided services for more than 450 support group meetings, putting us on track to exceed 900 meetings in 2017 compared to 850 in 2016. Hosting those meetings are 207 unique groups, compared to the 197 groups from the past year.
- PHA filled 480 Envelope of Hope orders for people newly diagnosed with PH. We also provided support to 175 community patients and caregivers through our phone and email programs. This reflects 30 percent growth since the beginning of 2016 in these critical support systems.
- PHA completed the first phase of the migration of PHAssociation.org to a modern, mobile platform, making it easy for people to access our resources from their cell phones, tablets and laptops. This long-awaited project enhances the community’s ability to search for trusted, timely and actionable PH-community-empowering information. The upgraded website withstood its first test as we launched our month-long World PH Day Periwinkle Hearts Around the World awareness drive. The campaign, part of an international awareness effort, helped bring 261,615 visitors to the PHA site, compared to 147,427 visitors the same time in 2016. Traffic to PHAssociaion.org About PH, Doctors who Treat PH and Donate pages more than doubled over 2016 and visitors to PHA’s Support Groups page more than quadrupled. Traffic to the WorldPHDay.org website, an international PH organization awareness and referral site, received visits from a record 52,622 users throughout the 2017 campaign, compared to 2,185 users the same time in 2016.
Ensure financial resources to achieve our mission
- Partnering with community volunteers in 2017, PHA has worked to raise funding and awareness of PH through 18 events in 13 states, bringing together 4,615 participants and at least 60 volunteers.. Most of these are PHA’s Grassroots Across America events that were hosted by dedicated PHA volunteer organizers in local communities. They include:
- The Woodlands CrawPHish Festival, Woodlands, Tx.
- Race 2 Cure PH, Anaheim, Ca.
- DeWitt Take a Breath for PH, DeWitt, Mi.
- Mudbug March to stomp out PH, New Orleans, La.
- Frisco CrawPHish, Frisco, Tx.
- Scramble for a Cure, Las Vegas, Nev.
- PHind a Cure 5k, Mobile, Ala.
- Bluegrass at the Fair, Pueblo, Col.
- RideJonahRide, Murfreesboro, Tenn.
- Desert Dudes and Divas Walk 4A PH Cure, Tucson, Az.
- The Last Barn Dance, River Hills, Wi.
- All Hearts on Deck Casino Night, Los Angeles, Calif.
- Annual Steps for Stripes Fun Walk, Brookfield, Wi.
- Five of the 18 fundraisers were PHA’s signature O2breathe events, sponsored by our corporate partners, Actelion, Gilead, United Therapeutics, and Bayer HealthCare. They included the Inaugural Greater Chicago Trivia Night, the Northern California Walk, Banding Together for a Cure in Pennsylvania, Stride for a Cure in Elk Grove Village, Illinois and the New York City Walk.
Thank you for helping us lead efforts in the fight to extend and improve the lives of those affected by PH and envision a world without PH, empowered by hope. If would like to join our growing community, I invite you to learn more about PH membership here.
Please feel free to contact me at BradWongPHA@PHAssociation.org if you have questions or concerns.