Washington, DC- U.S. Senator Bob Casey (D-PA) introduced legislation that would work to improve health outcomes for pulmonary hypertension (PH) by advancing medical research and improving care for PH patients. S. 1453, the Pulmonary Hypertension Research and Diagnosis Act, would ensure that the federal investment in research is directly leading to prolonged life and improved quality of life for PH patients, while working to lower health care expenses for patients with PH, such as by reducing the rate of disability and the need for organ transplantation.
“I’m proud to introduce this legislation to improve our understanding of PH and promote earlier diagnosis of this devastating disease,” said Senator Casey. “Right now, nearly 75 percent of patients have advanced PH by the time they are diagnosed, which significantly reduces the success of current treatments. I’m hopeful this legislation will lead to better outcomes for individuals with PH and their families.”
Casey first introduced legislation addressing PH after hearing the story of Colleen Connor, a West Chester mother of two who suffers from PH: “I was 38 years old when I was diagnosed. My husband and I had a 3-year-old and a 7-year-old. The PH diagnosis slammed the breaks on our lives and dreams,” said Connor. “PH patients are considered 'long term survivors' after living with the disease eight years. Had I been diagnosed sooner, there is a chance more immediate therapy could have delayed the disease and helped me lead a more normal life - with a job, and without supplemental oxygen and being dependent on an invasive IV therapy. I have no ill-will or loss of respect for the doctors who could not diagnose my PH. They are all highly intelligent and well regarded in my community. They were not armed to detect PH. I've learned that my story of delayed diagnosis is not the exception but rather the norm for PH patients.”
The Pulmonary Hypertension Research and Diagnosis Act establishes an Interagency Pulmonary Hypertension Coordinating Committee for a period of five years. This Committee, which will consist of representatives from federal agencies, the patient community, the caregiver community and the advocacy community, will be responsible for coordinating activities relating to PH. The bill also requires a series of reports to Congress on pulmonary hypertension and the progress being made to address the impact of this disease.
PH is a debilitating and often fatal progressive condition where the blood pressure in the lungs rises to dangerously high levels. In PH patients, blood flow between the heart and lungs is blocked or constricted. As a result, the heart must pump harder, causing it to enlarge and ultimately fail. PH can be idiopathic, occurring without a known cause, or be secondary to other conditions, such as scleroderma, lupus, blood clots, and sickle cell disease. PH impacts individuals of all races and ages.