PHA begins the new year, we’re implementing innovative program enhancements, furthering our mission to extend and improve the lives of those affected by PH. Last year, we recognized our 25thanniversary, officially honoring our history and cementing our legacy as the heart of the PH community. Bolstered by this firm foundation, PHA enters our next chapter with a renewed focus on harnessing our comprehensive services and collective community power to support our patient community, advance care, and further research. I am energized by our staff members’ determination to be game changers in their efforts to constantly improve and broaden our programs for people who live with PH, their personal and professional caregivers, and PHA’s volunteers and donors.
Patient and Caregiver Programs
PHA staff members are actively making connections and interviewing prospective volunteers as we work to expand our support group network to 300, ensuring that we are in every state and every major metropolitan area in the nation by the end of 2017. Last year was the impetus of this vision, when we increased our groups from 245 to 285, establishing PHA as a program provider in 47 states, D.C. and Puerto Rico. Further strengthening the support network, we’ve developed training for our volunteer leaders and established a nine-person group leader advisory board where members provide guidance on implementing our patient programs in local communities. This year, we’re also making plans for monthly Support Group Leadership Institute webinars along with a regional summit to provide training on how to start and facilitate a support group. Thanks to a grant from United Therapeutics, PHA has been able to provide these leadership opportunities to hundreds of patient/caregiver volunteer leaders since 2007.
PHA conducted a large-scale census of our support groups and gathered feedback on their impact from nearly 200 leaders. To further support the work of PHA’s volunteer leaders, we will analyze the census data to ensure that volunteers are the number one source for information on how we can best serve PH patients and caregivers as the organization evolves.
Our strategic efforts include growing the number of members in myPHA (www.myphassociation.org), PHA’s patient and caregiver social networking community. PHA designed myPHA in 2015 to give our community a safe virtual space to connect with one another while having easy access to PHA-vetted educational resources. We exceeded our 2016 goal of enrolling 2,000 members, with noted increases among PH patients with associated diseases. Building upon this achievement, this year, we’re implementing strategies to cast a wider net to serve more people who could benefit from PHA’s programs. This will include four 2017 PHA On the Road: PH Patients and Families Education Forums, which will apply learnings from our two 2016 On the Road events in Tampa, Fla., and Washington, D.C. At the D.C. forum, a first PHA event for most attendees, a PH and Scleroderma discussion was among the most popular new offerings. Our Tampa Bay event hosted a support group for men, patterned after similar programming for male patients during PHA’s 2016 International PH Conference and Scientific Sessions last summer. In addition to meeting this growing demand at our soon-to-be-announced On the Road venues, we are hosting a series of 2017 Men with PH webinars, beginning with a session this month that drew 60 registrants.
PH Quality Care and Professional Education
As part of our work to advance PH patient care, in October 2017, PHA will host its biennial PH Professional Network (PHPN) Symposium, an education and networking event for healthcare professionals. Some 500 nurses, nurse practitioners, physician assistants, respiratory therapists, pharmacists, physicians and other clinicians will gather to network and learn about the latest in PH treatment and research.
This year, PHA will begin accrediting Regional Clinical Programs (RCPs). Since the launch of the PHCC program in 2014, 41 adult and 6 pediatric Centers of Comprehensive Care (CCC) have earned accreditation. Since late 2015, 16 accredited CCCs have enrolled nearly 200 patients into the PHAR. Data from the initial seven PHAR pilot sites have been presented at national meetings and have already contributed to clinical practice and quality insights. Additional abstracts based on PHAR data have been accepted for presentation at the American Thoracic Society meeting in May 2017.
We’re also planning for our 2017 PHA Preceptorship Program, which educated 428 healthcare professionals in 2016. Of the participants, 96 percent told us they could foresee a potential impact on their practice. One hundred percent of participants of our pediatric pilot preceptorship program indicated that they could foresee a potential impact on their practice.
This year we will name the first Aldrighetti Research Award for Young Investigators grant recipient. Actelion Pharmaceuticals established the new PHA research award to fund a wide range of research in pulmonary vascular disease from early career physician scientists with an interest in pediatric PH to a deep phenotyping of the disease to fundamentally change how we think and classify PH. Named for Rino Aldrighetti, PHA’s first CEO, who retired last year, the grant will enable an individual who has demonstrated exceptional leadership in addressing the vision that PHA embraces. The grant will be available to one investigator a year for the next six years.
PHA intensifies our commitment to research this year due to a major investment resulting in a partnership with the National Heart, Lung and Blood Institute(NHLBI) of the National Institutes of Health (NIH) on the groundbreaking Redefining Pulmonary Hypertension through Pulmonary Vascular Disease Phenomics (PVDOMICS) program. Through seven clinical sites and one data coordinating center, researchers will perform comprehensive, deep phenotyping across the current World Health Organization (WHO)-classified pulmonary hypertension (PH) Groups 1 through 5. By collecting information from one thousand participants with various types of PH, and 500 participants without or at risk for PH, PVDOMICS hopes to deconstruct the traditional classification and define subclassifications of patients with PH, which could be a major step in advancing patient care.
In addition to our new research endeavors, thanks to generous donors, our research portfolio enables us to continue providing funding through a number of annual grants. These include the Robyn Barst Pediatric PH Research and Mentoring Program; our PHA Proof of Concept (new) Research Grants; the PHA/ATS Research Fellowship in Pulmonary Arterial Hypertension; and in partnership with the National Heart, Lung, and Blood Institute (NHLBI), our PHA/NHLBI Mentored Clinical Scientist Award (K08)/Mentored Patient-Oriented Research Career Development Award (K23) to support junior investigator. Along with these grants, donors in our community have established two additional PHA awards – the Skuldt Family Fund and the White Family Fund — both for pediatric researchers.
Advocacy and Awareness
This month, PHA celebrates the success of an advocacy effort led by a new member of the community, Frank Cann, that led to the nation’s first PH law. Frank, his son, Justin, his son-in-law, Ernesto – who has PH — and their family and friends initiated the bill and saw it through to the end. The new law establishes a task force in Massachusetts to report annually on advances in research, services and support for patients and develop a comprehensive strategic plan with yearly updates on how to improve outcomes. The Cann family and the Massachusetts PHA community hope this successful advocacy effort becomes a model for the association to implement in other states.
As discussions over the Affordable Care Act continue, PHA persists in our stalwart advocacy on behalf of PH patients. Consistent with how PHA has operated for more than two decades, we are working with PH patients and caregivers to share stories that make it possible for us to advocate on Capitol Hill for healthcare policy that meets the needs of individuals living with PH and their families. We continue to fight for high-quality coverage that is affordable and effective that includes coverage for people who have pre-existing conditions, limits to out-of-pocket costs, elimination of caps, and letting parents keep their children on their plans until they are 26.
I’m also excited that we’ve extended our campaign to seek donated media placements for our successful Heart2CurePH campaign. We’ve made an impression on people across the U.S., approximately 140 million times so far, thanks to hundreds of media organizations donating time and space. PHA’s #Heart2CurePH ads ran in Times Square and on national and local TV and radio stations, transit billboards, strip mall poster ads and in national magazines with the total value of the ads estimated at $69.9M since the campaign launched, accounting for a third of our web visitors.
With support from Actelion and Bayer, this year’s public awareness activities extend our November 2016 Awareness Month digital and social media campaign to get PHA’s message out to more people who have associated diseases and/or might be at risk for developing PH. In addition, we will continue to work with celebrities to help us get more people outside of our community to understand what PH is and how it affects patients and families.
I’m happy to report that we’re making significant progress in our efforts to improve the efficiency and effectiveness of our events program. Many of our 2017 staff-supported regional events are now scheduled. Our staff members have partnered with volunteer event leaders and planning is underway. We are also expanding resources that will be available to help leaders of PHA’s Grassroots Across America events and other fundraisers across the country plan and host their events. We are grateful to everyone who has been a part of PHA’s events as volunteers, promoters, participants, and donors for your dedication and commitment to raising awareness and funding for PHA and look forward to working with you this year. We urge you to continue reading PHANews weekly, where we will provide periodic updates on these events along with ways you can get involved in your community.
PHA is a resource for more than 80 PH associations around the world. We provide online resources to connect patients to support groups, medical resources and researchers in their communities. I’m pleased to announce that for the eighth year, Gilead Sciences will fund PHA’s Tom Lantos Innovation in Community Service Awards. Four of our six 2016 Lantos grantees were international applicants who are now using their grants to develop creative programs that advance the PH cause in their countries. We’re also gearing up for this year’s World PH Day on May 5, where we will provide resources to our international community in a celebration of progress made in global PH treatment and research. As we plan PHA’s 2018 International PH Conference and Scientific Sessions, we are simultaneously looking at how we can best serve our friends around the world who will attend our International Summit, held the day before Conference begins.
PHA’s progress and our successes belong to our community, the thousands of patients, caregivers, volunteers, donors, healthcare professionals and scientists who share our vision and work with us to advance our mission. Whether you are a patient, family member, caregiver, PH medical professional or scientist, 2017 is a perfect time for you to renew your membership or join our community as a first-time member, donor or volunteer. Please go to www.PHAssociation.org to learn how you can get involved. To all existing members, volunteers and donors, thank you. We look forward to serving with you this year.