Under new legislation filed by State Representative Diana DiZoglio (D-Methuen), a task force would be created in Massachusetts to improve public awareness about pulmonary hypertension and improve health outcomes for those diagnosed with the disease.
High blood pressure in the lungs is called pulmonary hypertension or 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.
DiZoglio’s legislation, House Bill 4121, 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.
Testifying in favor of the legislation on April 12, before the state legislature’s Joint Committee on Public Health, was Methuen resident Ernesto Bencosme who, at the age of 25, was diagnosed with PH.
Bencosme had experienced an episode of syncope, a moment when oxygen does not reach the brain at the normal rate. He was then taken to a local hospital, later transferred to Brigham and Women’s and there diagnosed with PH.
“Living with PH stopped me from doing things normal young adults love to do, things like playing sports, going to amusement parks and hiking,” said Bencosme. “There are days when walking up ten steps have led to shortness of breath, loss of hearing and even eye sight. Getting to the top of a ten-step staircase made me feel like Rocky Balboa climbing the stairs at Philadelphia’s Museum of Arts.”
Bencosme said he has always lived a healthy lifestyle and been athletic, but something would consistently hold him back. Doctors would tell him he simply had bad asthma. In reality, however, his heart was overcompensating his entire life and increasing in size. None of his physicians had the education or understanding of PH to provide him with an early diagnosis.
“The intent of creating a task force on this matter through legislation is so that we are able to develop and annually update a summary of the advances made in research on and treatment and diagnosis of PH along with advances made in access to care for individuals with a diagnosis,” said DiZoglio. “We want to be able to monitor PH research, services, and support activities across the Commonwealth, including coordination of the Commonwealth’s activities and programs with respect to the disease.”
“I am hopeful, because I believe that across the Commonwealth, there will be advances made in pulmonary hypertension research and that we will see improvements in public awareness,” said Kara Cann, Ernesto’s fiancée. “House Bill 4121 brings so many families like ours hope; hope that there will be advanced research and awareness on pulmonary hypertension in order to find a cure and save lives, including my fiancée’s.”
“I have been told that medical students are taught ‘When you hear hoof beats, think horses, not zebras’,” said Frank A. Cann, Kara’s father and owner of the Coffee Cann Cafe. “They are taught to focus on likely possibilities when making a diagnosis. But sometimes, physicians need to look for a zebra. That zebra can be pulmonary hypertension. The passage of this bill will help raise awareness and educate pediatricians, primary care physicians, doctors in hospitals and lung specialists that shortness of breath and dizziness, those hoof beats the doctor is hearing, do not always mean horses or asthma, it could mean a zebra or pulmonary hypertension.”
“We will not let this disease win or hold our family back,” said Justin Cann, Kara’s brother. “We are here to stand for those who have been diagnosed and in memory of those who have fallen victim to this disease. PH is rare and affects a small amount of people, but their lives are as important as anyone else’s.”
DiZoglio decided to file House Bill 4121 after hearing from the Cann family regarding Bencosme’s diagnosis with PH.
“This bill will see to it that the medical community and general public are educated about this wicked disease so that PH patients are diagnosed early, so that effective treatments are initiated and sustained, and so that PH patients can live longer ad better lives,” said Stephen L. White, Chair of the Board of Trustees of the Pulmonary Hypertension Association.
“House Bill 4121 appears to us to be a strong step forward in addressing the research, diagnosis and awareness needs of the PH community,” said Katherine Kroner, Senior Director of Advocacy and Awareness with the Pulmonary Hypertension Association. “House Bill 4121 will save lives by addressing these issues.”