аЯрЁБс>ўџ ACўџџџ@џџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџьЅС јПK.bjbjрр ">‚j‚j•џџџџџџl&PPPP \&П Ж|^кккккккЂ Є Є Є Є Є Є $u •ЌШ БкккккШ Рккy РРРк‚ккЂ РкЂ РЖРv v кp PУVe™лУ&*P\Rv v , 0П v AЎAv Р&&йThe Struggle to Raise COPD Awareness by Linda Watson I had the great fortune to attend the first-ever National COPD Conference, held November 14-15, 2003 in Arlington, Virginia. It inspired me to share my story as a patient with COPD, my frustration over the difficulty of raising awareness about this catastrophic disease, and my reasons for hoping that things are about to change. My Story My name is Linda Watson. I am 53 years old and have a 14-year-old son still at home. Almost three years ago I had the top third of my lungs removed. They were taking up way too much space. I have emphysema and am on the executive board of the Emphysema Foundation For Our Right To Survive (EFFORTS), an online patient advocacy/support group. You can find it at  HYPERLINK "http://www.emphysema.net" www.emphysema.net. I started smoking at age 17, when my little brother began sneaking me cigarettes while we did our homework. I started trying to quit in 1989 and it took me nine years. My beloved brother Charles died from lung cancer at age 47 on October 9, 2001, and my father died on October 12, 2003, from the same disease. My own symptoms began in the 1980s, but like many people with COPD, I experienced a long gap between the start of symptoms and the time when I received treatment from a pulmonologist. In the meantime, several doctors told me that my problem was asthma. When I first heard that I had COPD, I thought, “Thank God I don’t have emphysema!” (I always say COPD/emphysema now so people will understand.) I learned the harsh reality of my situation when my doctor said that without surgery, I would have only one to three years to live. I couldn’t understand how so many doctors could have failed to recognize the urgency of my condition. I then faced the hardest task of my illness—telling my mother. My doctor had a hard task of his own—filling out mountains of paperwork to obtain payment for my surgery (he first considered a lung transplant, but later decided on lung-volume reduction surgery). Medicare wouldn’t cover this, and at first my insurance company tried to get off the hook on the grounds that the treatment was experimental. Finally, after writing many letters, participating in long discussions, and filling out reams of papers, my doctor won the insurance company’s approval. During my struggle to survive day-to-day life with dwindling lung capacity, I had the good luck to discover the EFFORTS web site. I saw that there were people in the world who were just like me. They could barely breathe, but they were experts on their disease. They knew which medical tests were important and how to interpret the results. They also recognized the importance of exercise. Finding EFFORTS was a key step in obtaining the care I needed. World COPD Day, 2003 Wednesday, November 19th was World COPD Day, but I was unable to get so much as a ripple of attention for it in our corner of the world. It didn’t seem to matter that this disease is the fourth leading cause of death in the United States, killing more than 119,000 people a year. It also didn’t seem to impress people that COPD kills more women than men, ending the lives of about 70,000 women a year, far more than die from breast cancer. Together, the two huge “tobacco-related diseases,” COPD/emphysema and lung cancer, kill enough people to rank as third leading cause of death in the United States. Nevertheless, they receive far less research funding than heart disease or other types of cancer. Here are more of the reasons why I’m frustrated: Я% A simple test called spirometry can diagnose COPD in its early stages, yet hardly any primary care doctors perform it. As a result, very few people with COPD are diagnosed until they have lost more than half their lung function. Spirometry involves an inexpensive piece of machinery, called a spirometer, into which a person exhales. The spirometer can be used over and over again for years, and the testing itself only takes about six seconds. One might guess spirometry is too new for most doctors to know about. But, at the conference I learned it has been around for about 150 years! Я% A new drug is helping COPD patients in Europe, but it is not available in the United States. Scientists seem to agree that this drug provides significant benefits to COPD patients. It was approved by the Food and Drug Administration in September 2002, but has been kept off the market because of a  labeling issue. Only someone who struggles for air can understand how frustrating this is! Я% Some of the most important treatments for COPD are not covered by most insurance. Pulmonary (lung) rehabilitation, which teaches a person new breathing techniques and provides exercises to strengthen muscles that help in breathing, can transform the life of someone with COPD. Yet, even though cardiac rehabilitation is covered by most health insurance companies, pulmonary rehabilitation is not. Another example is lung-volume reduction surgery, the type of surgery I received. Until very recently, this was classified as an experimental treatment and so was rejected by many insurers. Even today, it is available only at certain centers and for certain patients. Finally, many people with COPD have to fight with their insurers to receive oxygen, even though they would die without it. Я% COPD receives only a fraction of the public attention it deserves. In hospitals and clinics, posters advising people to be screened for breast cancer and prostate cancer seem to be everywhere. But what about lung cancer and COPD? When I see a poster urging people to receive spirometry testing, I’ll know we’ve made progress! The Conference I had a great time at the National COPD Conference, hearing the best doctors in the world saying “Yes, we need to do something about this.” They even invited patients to present short articles called “abstracts." (One of the abstracts was mine.) The doctors weren’t the only ones at the conference who gave me cause for hope. There were people from many organizations that are working to prevent COPD, improve its diagnosis and treatment, and address the needs of people who have it right now. Here are some of the organizations that impressed me: Я% The US COPD Coalition ( HYPERLINK "http://www.uscopd.com" www.uscopd.com) was the organizer of the conference. It is an umbrella group with dozens of members all with the common goal of working against COPD. Members of the coalition include organizations for patients (like EFFORTS), as well as government agencies, groups of health care professionals, and organizations for university scientists who do research on COPD. Я% The Global Initiative for Chronic Obstructive Lung Disease, or GOLD ( HYPERLINK "http://www.goldcopd.com" www.goldcopd.com), was started in 1998 by an international group of physicians interested in COPD. Each year in November, GOLD members participate in "World COPD Day." This year the slogan was "Could it be COPD?" Pretty catchy, in my opinion! Я% The American Association for Respiratory Care (AARC,  HYPERLINK "http://www.aarc.org" www.aarc.org) was present at the conference with its message  Test your lungs, know your numbers. AARC is a professional society for respiratory therapists and other people whose work involves respiratory care. I like this organization and think everyone should pay attention to its slogan. Я% Some of the speakers at the conference were from the American Lung Association. This  voluntary health organization works against all types of lung diseases. I’m impressed by the effort it has made to increase coverage of COPD on its Web site ( HYPERLINK "http://www.lungusa.org" www.lungusa.org). Many other groups participated in the conference—too many to name! But some I don’t want to overlook are the American Thoracic Society, the National Institutes of Health, and the American College of Chest Physicians. As you can see, there were lots of smart people there, and everyone knew what I was talking about when I said I had COPD. I hope they’ll invite me back next year. 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