Pulmonary Hypertension Association

History

Three female pulmonary hypertension patients came together in 1987 with the hope of reaching other PH patients. The goal was to connect PH patients with one another, help locate PH specialists and centers, form support groups, and publish a newsletter about the PH community. In 1990 the women started mailing newsletters, Pathlight, to about 100 people and a fourth woman soon connected with the three PH patients and the United Patients Association for Pulmonary Hypertension (UPAPH) was formed. UPAPH officially changed its name to the Pulmonary Hypertension Association (PHA) in 1997 and hired its first full-time staff member in 1999. The organization has grown to more than 16,000 members who include patients, family members, and medical professionals. PHA was founded through the spirit of volunteers and continues to exist, in part, due to an active patient community.

Advocacy, Awareness, Fundraising

Media: PHA coordinates a public awareness campaign called the Heart2CurePH campaign ([1]) to help raise awareness about PH among the general public and connect people to PHA. PHA also spearheads a grassroots media campaign called the Media Action Network to connect PH patients interested in reaching out to local and national media outlets to tell their personal PH story, raise awareness and educate their communities about PH.

Legislation: PHA supports a grassroots advocacy campaign called the 435 Campaign. The campaign connects individuals who are interested in building relationships with Members of Congress in order to advocate for legislation pertinent to the PH community. The primary focus of the 435 Campaign is Pulmonary Hypertension Research and Diagnosis Act.

Insurance: PHA coordinates an Insurance Advocacy and Education Program. The goal is to improve “timely access to affordable treatment” for pulmonary hypertension patients through an online insurance guide, patient referrals and advocacy efforts.

Medical Education Programs

• PHA Preceptorship Program: These day-long educational programs take place at nationally recognized PH centers across the country. Medical professionals learn about diagnosis and treatment management options. Networking is an important part of this event, as attendees are offered the opportunity to establish professional relationships with the PH specialists at these programs.

• PHA Medical Education On-Demand Program: PHA provides continuing medical education on an on-demand basis to those looking for a local opportunity to learn from a pulmonary hypertension specialist. Medical professionals choose from a variety of program format options and topics focusing on the diagnosis, screening and management of PH.

• Building Medical Education in PH: This program fosters partnerships between PHA and PH centers or medical professionals planning PH educational events. Through this program, PHA supports continued education in the PH field by increasing the visibility and resources of CEU/CME educational events.

• PHA Classroom: Provides a space for patients and caregivers to participate in live webinars or watch recordings at their leisure. Classes cover topics ranging from information about pulmonary hypertension to tips on living with PH and ways to fight back.

• PHA Online University: PHA Online University (www.PHAOnlineUniv.org) is a free virtual educational resource for healthcare professionals interested in learning more about pulmonary hypertension. Focusing on providing topnotch continuing medical education, PHA Online University includes the most recent information on diagnosis, management and research breakthroughs related to PH for physicians, researchers and allied health professionals. Among other resources, visitors can participate in live webinars, take courses or read the latest edition of Advances in Pulmonary Hypertension.

Research

• PHA’s Research Program has committed more than $12.5 million to cutting-edge research on PH and PAH through partnerships with the National Heart, Lung, and Blood Institute (NHLBI), the American Thoracic Society (ATS), the American Heart Association (AHA) and Pfizer. PHA currently has five active research programs: The Robyn Barst Pediatric Research and Mentoring Program; PHA Proof of Concept Research Grants; PHA/ATS Research Fellowship in Pulmonary Arterial Hypertension; PHA/NHLBI Mentored Clinical Scientist Award (K08)/Mentored Patient-Oriented Research Career Development Award (K23) and; PHA Fellow Career Development Awards.

Publications

• Pathlight: Pathlight: is the organization’s official newsletter. Printed quarterly and distributed as a free subscription to members and donors, Pathlight provides news, information, and networking opportunities for the PH community. PH patients, PH caregivers, and medical professionals all contribute to Pathlight. Twice a year, Pathlight includes Persistent Voices, which features the personal stories, poetry and artwork of patients and caregivers who have been affected by PH.

• Advances in Pulmonary Hypertension: This is PHA’s medical journal, made up of articles written by PH specialists and roundtable discussions between international PH experts. The journal serves as the premier forum for state of the art information regarding diagnosis, pathophysiology and treatment of PH. Distribution reaches more than 40,000 cardiologists, pulmonologists, rheumatologists and other healthcare professionals globally. International editions have been adopted in India and Spain.

Medical Community

• PH Clinicians and Researchers (PHCR): This is a professional membership network for MD, PhD or DO equivalent degree physicians and researchers interested in pulmonary hypertension. PHCR members use this professional network to connect with PH experts around the world about PH-related issues and findings. PHCR members primarily communicate through a PHCR listserv, list their practices on PHA’s Find a Doctor Directory, and gain access to PHA’s medical resources, events and publications.

• PH Professional Network (PHPN): PHPN is a professional membership organization for nurses, nurse practitioners, respiratory therapists, pharmasists, physician assistants, social workers, and other PH-treating healthcare professionals. PHPN members communicate through an e-mail listserv to share resources and discuss PH-related issues. Members also participate in committees to develop educational resources for colleagues and the PH community. PHPN hosts a biennial symposium in odd-numbered years with accredited sessions designed to meet the educational needs of its members.

Leadership

• Scientific Leadership Council: The Scientific Leadership Council (SLC) is made up of 28 medical leaders in the field of pulmonary hypertension. Members of the SLC are clinicians, research scientists and other healthcare professionals in medical centers recognized for performing outstanding research and providing excellent care for patients with pulmonary hypertension. The SLC provides strategic direction for all of PHA’s medical programs. SLC committees include:

1. Advances in Pulmonary Hypertension Editorial Board

2. Consensus Statement Committee

3. Conference Committee

4. Education Committee

5. Insurance Advocacy Committee

6. PHA Online University Committee

7. Research Committee

PHA has a memorandum of understanding with these organizations:

• Asociación Nacional de Hipertensión Pulmonar (Spain)

• Associação Brasileira de Amigos e Familiares de Portadores de Hipertensão Arterial Pulmonar (Brazil)

• Associazione Ipertensione Polmonare Italiana (Italy)

• Associazione Malati Ipertensione Polmonare (Italy)

• Asociación Mexicana de Hipertensión Arterial Pulmonar (Mexico)

• British Columbia PH Society (Canada)

• Bulgarian Society of Patients with PH

• Fundación Colombiana de Hipertensión Pulmonar (Colombia)

• Fundación Venezolana de Hipertensión Pulmonar (Venezuela)

• iSEEK PH Hope Center (China)

• NZPAH Trust and Support Group (New Zealand)

• PHA Australia

• PHA Austria

• PHA Bulgaria

• PHA Canada

• PHA China

• PHA Europe

• PH Israel

• PHA Japan

• PHA Korea (S. Korea)

• Manitoba PH Support Group (Canada)

• PHA-Nederland

• PHA Norway • PHA Turkey

• PHA-UK (United Kingdom)

• pulmonare hypertonie e.v. (Germany)

• Saudi Association for Pulmonary Hypertension (Saudi Arabia)

• SdruženÍ Pacientů s Plicní Hypertenzí (Czech Republic)