To the editor:
I live with a rare and often misdiagnosed illness called pulmonary hypertension. Currently there is no cure, but with recent advances there is hope. This is a lonely, life-limiting, life-threatening illness.
Pulmonary hypertension is a rare disorder of the lungs and heart, causing its victim to slowly suffocate. Until two years ago, the only treatment to maintain quality of life for pulmonary hypertension patients was a drug pumped through the chest and connected directly to the artery leading to the heart. The pump has to operate continuously. If at any time the pump is interrupted, death is a serious possibility.
Congress is considering a bill that recognizes the importance of medical research for thousands of people like me. The passing of this bill is critical to the future of all of us living with this illness. The bill is HR 1316. I am asking for help in getting this bill enacted into law.
The bill helps in three ways:
- An expansion of research.
- The establishment of three medical research "centers of excellence."
- The establishment of a pulmonary hypertension data system and clearinghouse at the National Heart, Lung, and Blood Institute.
One of the most crucial aspects to the bill is education. We are certain that many people have pulmonary hypertension without knowing it. You may help to save their lives.