Inspired by Methuen Family Battling PH, Legislation Will Improve Services, Awareness
Doctors told Bencosme he simply had bad asthma but, in reality, his heart was overcompensating his entire life and increasing in size. His physicians did not have the education or understanding of pulmonary hypertension (PH) to provide him an early diagnosis.
High blood pressure in the lungs is called PH. It is a chronic and life-threatening disease that can lead to heart failure if left untreated. The condition gets worse over time and can affect people of all ages, races and ethnic backgrounds. In the United States, an estimated 500 to 1,000 new cases are diagnosed each year.
Ultimately, Bencosme experienced an episode of syncope, a moment when oxygen fails to reach the brain at a normal rate. He was then taken to a local hospital, later transferred to Brigham and Women’s and there diagnosed with PH.
Under new legislation, sponsored by State Representative Diana DiZoglio (D-Methuen) and recently signed into law by Governor Charlie Baker, a task force will be created in Massachusetts to improve public awareness about PH and improve health outcomes for those diagnosed with the disease.
House Bill 4121, An Act establishing a pulmonary hypertension task force creates a task force under the Commonwealth’s Executive Office of Health and Human Services to develop a comprehensive, strategic plan to improve health outcomes for individuals with a diagnosis of PH, including recommendations to advance research, improve the transplantation criteria and process concerning lung and heart-lung transplants for individuals with a diagnosis and improve public awareness and recognition.
Last April, before a public hearing of the state legislature’s Joint Committee on Public Health, DiZoglio was joined by Bencosme, his fiancée Kara Cann and others from the Cann family, all testifying before the committee in favor of the legislation.
“The enactment of this law is a life-changer for me and the members of the PH community,” said Bencosme. “I am deeply grateful to Representative DiZoglio, all the legislative cosponsors and leadership led by Governor Baker, for effectively raising awareness to this deadly disease by creating this task force. Because of their collaborative effort with the Pulmonary Hypertension Association (PHA), we are now one step closer to a cure.”
“With the passage of this legislation, we will make significant advancements in PH research, services and support activities across the Commonwealth,” said DiZoglio. “I am hopeful the progress made through this task force will ultimately save lives and bring us closer to a cure of this disease. I want to thank Ernesto for his incredible work in raising awareness around PH and the entire Cann family for fighting alongside side him in this critical effort.”
“Representative DiZoglio is a special person for taking the time to present this bill to the Massachusetts legislature,” said Frank H. Cann, Bencosme’s father-in-law and owner of the Coffee Cann Cafe. “For her part, my family and I are thankful for her thoughtfulness and efforts on behalf of Ernesto and the entire PH community. In addition, Representative Michael J. Moran (D-Boston) was absolutely key to the enactment of this law. I want to specifically thank him also for all his help. He went above and beyond the call of duty and showed true tenacity.”
“Massachusetts has made history as the first state to pass legislation to help raise awareness about pulmonary hypertension and will surely be a model for other states to do the same,” said Stephen L. White, former chair of the Pulmonary Hypertension Association. “Pulmonary hypertension is a potentially deadly disease that is often undiagnosed or misdiagnosed which causes unnecessary delays in treatment. This bill will play an important part in helping the public and the medical community become more aware of this disease.”