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Alphas, COPD patients join congressional health briefing to raise awareness of lung disease, need for access to care
WASHINGTON—The Alpha-1 Foundation and Alpha-1 Association joined forces as Alphas, COPD patients, their families and supporters attended a Congressional health briefing on “Understanding Genetic COPD” today.
Speakers discussed Alpha-1 Antitrypsin Deficiency as well as COPD, which includes emphysema and chronic bronchitis. Many people with Alpha-1 are first diagnosed with COPD. The need for access to care for Alphas and others with relatively rare conditions requiring expensive treatments was also among the topics.
The speakers were John Walsh, president & CEO of the Alpha-1 Foundation; Karen Erickson, board member of the Alpha-1 Association; and Julie Birkofer of the Plasma Protein Therapeutics Association. An aide to Rep. Henry Waxman, chair of the House Energy & Commerce Committee, spoke on Waxman’s behalf.
The briefing was followed by individual visits with members of Congress.
According to the US Centers for Disease Control and Prevention nearly 126,000 adults die in the United States of COPD each year, making COPD the fourth leading cause of death in the United States.
An estimated 12 million Americans have been diagnosed with COPD, and another 12 million have or are developing COPD and aren’t even aware of it, according the federal government’s Learn More Breathe Better program for COPD awareness.
Rep. Ileana Ros-Lehtinen, R-FL, helped promote the event with an advance “dear colleague” letter urging attendance at the briefing and support for COPD awareness.
