FYI from the NHLBI Index
May 2007: Vol. 8, Issue 1
New COPD Awareness Campaign
PIO Meeting: A Participant's View
New COPD Awareness Campaign
The NHLBI, in partnership with leading professional societies and health and advocacy organizations has launched COPD: Learn More Breathe Better, a national campaign to improve awareness among people at greatest risk for the disease.
COPD (chronic obstructive pulmonary disease) is the fourth leading cause of death in the United States, affecting one in four Americans over age 45. More than 12 million people are currently diagnosed with COPD, and estimates indicate that another 12 million may have it, but remain undiagnosed.
In COPD, the airways are partially blocked, which makes breathing difficult. COPD develops slowly, can worsen over time, and is often characterized by shortness of breath. Other symptoms include constant coughing, excess sputum production, and wheezing. COPD is sometimes referred to as emphysema or chronic bronchitis.
In decades past, COPD was considered a disease of older men. Now, it affects men and women equally, with more women dying of COPD each year than men. COPD also costs the U.S. economy an estimated $32.7 billion per year in healthcare expenditures and indirect costs of morbidity and mortality.
“Many people with early signs of COPD simply avoid activities they used to enjoy because they become short of breath more easily. We want people to know that those symptoms have a name—COPD—that diagnosis is easy, requiring only a simple breathing test in your doctor’s office, and that treatment can help,” said Dr. Elizabeth G. Nabel, NHLBI Director.
COPD treatments control symptoms, improve exercise capacity, and can prolong life. Advances in the treatment of nicotine addiction have led to greater success in smoking cessation — a critical intervention in COPD. Other treatments include inhaled bronchodilators, inhaled corticosteroids, and pulmonary rehabilitation, all of which have been shown to improve the quality of life of patients with COPD. Oxygen therapy for those with severe COPD prolongs life.
The NHLBI is joined by more than 20 partners in this new campaign, including the American Academy of Family Physicians, the American Lung Association, the American Thoracic Society, the American College of Chest Physicians, and the U.S. COPD Coalition. In addition, Kaiser Permanente will help spread the word about COPD and distribute campaign information to its members and to its physicians and other staff. Through a partnership with the COPD Foundation, the campaign will be presented at health fairs, senior expos, and other community venues, offering information and screening to those at risk.
The campaign includes print and radio public service announcements that will be supplemented by fact sheets for COPD patients and those at risk for COPD, a fact card for health care professionals, a website, an educational video, and materials to help community-level organizations further educate the public about the signs and symptoms of COPD.
For more information about this new campaign, please visit http://www.nhlbi.nih.gov/health/public/lung/copd/index.htm.
PIO Meeting: A Participant's View
More than 80 individuals, representing a multitude of organizations, attended the February 2007 Public Interest Organization (PIO) Meeting in Bethesda, Maryland.
Dr. Susan Shurin, NHLBI Deputy Director, opened the session, delivering a concise overview of the NHLBI Strategic Plan for the future. Many of the organizations participated in the planning process which led to the final document. The opportunity to offer input is greatly appreciated.
On day two, Dr. Mark Gladwin distilled the complex topic of nitrate therapy into understandable language so that a layperson like me could comprehend the benefits of his research. It was also a great segue into the pulmonary hypertension presentation given by Rino Aldrighetti of the Pulmonary Hypertension Association. Aldrighetti showcased their genesis from a few people around a kitchen table to what they are today, a sophisticated rare illness association that raises millions of dollars for their cause. I feel it was an eye opener for those in the trenches who struggle to secure funds and provide services — a real “success” story.
A discussion by panelists Donna Appell, Hermanksy-Pudlak Syndrome Network, Inc.; Dr. Amy Farber, LAM treatment Alliance; and Ms. Mary Jo Gordon, Cardiac Arrhythmias Research and Education Foundation was both illuminating and heart-rending. These three women shared their personal experiences and helped underscore the nexus between life and science.
Of the four concurrent sessions, I attended Dr. Lawrence Friedman’s Understanding Clinical Trials and Research Results. I was pleased when he covered ethical issues, an often sensitive concern that consumers have, in regards to trials. We were encouraged to play an active role as rules are crafted for the protection of knowledge gained through trials. His candor and honesty during the question and answer period was refreshing.
I was looking forward to attending the Psychosocial Issues and Patients with Heart, Lung, Blood, and Sleep Diseases and Disorders session with presenters Drs. Eddie Glenn, Sarcoidsosis of the Midlands of South Carolina, and Denise Simons-Morton, NHLBI. But alas, it was not to be. The impending storm resulted in an early adjournment to allow participants the chance to board planes for home. I trust this session will be offered next year as the topic is a significant one.
The PIO meeting continues to be a gratifying encounter for me — a chance to spend time with old friends and the opportunity to meet new ones. I’m inspired by the strength and resilience exhibited by the affected individuals, their families, and the various stakeholders. And even though these meetings leave me with an overwhelming weight for the work that remains, I’m always in awe of all that is being done in our behalf. NHLBI, your efforts have paid off once again!
J. Hoxi Jones, NHLBI Public Interest Organization Member
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