Silver Spring, Md. (April 13, 2017) – Instituting the nation’s first pulmonary hypertension (PH) law, Massachusetts has named the first members of a task force of experts to monitor and report annually on advances in caring for patients fighting the disease. Massachusetts Governor Charlie Baker signed the PH bill into law in January, which requires the Commonwealth to establish a PH task force to monitor and report on advances in research, transplantation, public awareness, health care delivery and improvements in early and accurate diagnosis.
Common symptoms of pulmonary hypertension (PH) include shortness of breath, fatigue and chest pain and consequently, the disease is often misdiagnosed—for example, as asthma—leading to delays in proper diagnosis and treatment, costing patients valuable time. PH, can exist alone or in association with other illnesses, including congestive heart disease, COPD, scleroderma, sickle cell and many other illnesses.
The Pulmonary Hypertension Association, which advocates for legislation that supports the fight against PH, commends Massachusetts and the task force members. The inaugural members include Ernesto Bencosme, a PH patient; Frank Cann, a member of the Pulmonary Hypertension Association’s Board of Trustees; David Matthew Platt, MD, from Bayer U.S. LLC; Patricia Toro, MD, a representative of the Massachusetts Association of Health Plans; Thomas H. Ebert, MD, from Fallon Community Health Plan and from Brigham and Women’s Hospital, PH specialist Aaron Waxman MD and PH researcher, Laurie Lawler, RN.
In addition to providing yearly summaries on research, services and support for patients across Massachusetts, the task force is charged with developing a comprehensive strategic plan with yearly updates on how to improve outcomes. The reports will include summaries on research, services and support for patients across Massachusetts. The task force will also develop a comprehensive strategic plan with yearly updates on how to improve patient outcomes.
Other task force members include the state’s secretary of the executive office of health and human services, or a designee, who will serve as chair; the commissioner of the department of public health or a designee; the commissioner of insurance or a designee; and the director of Medicaid or a designee. The law ensures that the task force is representative of the entire PH community, including medical professionals, health insurance and pharmaceutical representatives, advocates, researchers and patients.
Pulmonary Hypertension Association (PHA) board member Steve White credits two of the task force members, Cann and Bencosme, for initiating the PH bill and fighting for it to become Massachusetts law. PHA hopes the successful advocacy effort becomes a model for states throughout the nation.
About the Pulmonary Hypertension Association
Headquartered in Silver Spring, Md., the Pulmonary Hypertension Association (PHA) is the country’s leading pulmonary hypertension organization. PHA’s mission is to extend and improve the lives of those affected by PH; its vision is a world without PH, empowered by hope. PHA achieves this by connecting and working together with the entire PH community of patients, families; health care professionals and researchers. For more information and to learn how you can support PH patients, visit www.PHAssociation.org and connect with PHA on Twitter and Instagram @PHAssociation and on Facebook at www.facebook.com/PulmonaryHypertensionAssociation.