• Do you remember back in April we told you that if you had attended the CSPR annual meeting you would have been pleased by all the interest and excitement everyone had about pulmonary rehab? Well, if you had been able to wander around the 98th Annual International American Thoracic Society Conference in Atlanta this May you would have been dumbfounded. ATS is an international professional organization dedicated to respiratory and critical care medicine. Despite these troubled times, with terror and strife plaguing our world, the best of mankind's nature prevailed here. Everyone present was united in the common cause: defeating pulmonary disease. The air pulsated with comraderie, energy and excitement as the 14,000 attendees, from almost every country in the world, rushed from one meeting or seminar to another. So much was going on that it was literally impossible to attend everything of interest.
  • Posters are one of the highlights of each conference. What is a poster? Well, these posters are not like the big glossy pictures used to promote movies. They are a brief description in words of a research project that may have taken weeks, or even years, to complete. They may have been done by a young researcher working alone, or by a large group of the world's leading scientists. Subjects range from the esoteric molecular biology research, to a study on hiccups in cats (welcome after that molecular bit!), effects of a new medication, and so on and on: thousands of posters are there, to be viewed and discussed with the researchers presenting them. One thing was obvious. The big push, the hot topic, the big interest this year was COPD. Poster or seminar, from all over the world, COPD seemed to be the big interest.
  • This is appropriate. COPD is the 4th leading cause of death in the world and in a few years will be 3rd. It is the only disease that is rapidly increasing instead of declining. The number of women afflicted is rapidly catching up with the number of men. Worldwide, smoking continues to increase so these numbers are expected to get worse rather than better. Denmark has the dubious distinction of now being the only country in the world that has more women than men smokers. Can you guess why? The queen of Denmark is a smoker and proudly appears in public with her cigarettes. The young women of Denmark are emulating their Queen, just as American girls in an earlier generation attempted to mimic the sophistication and “glamour" of smoking movie stars. How sad.
  • Enough research was presented to fill several newsletters but perhaps you would first like to know what is happening politically, to make the public and our government take notice of this problem, and so take action. What are we doing to make these new advances available to all of you? How can we help insure that funds are available to pay for these new medications and treatments when they come on the market?
  • At ATS the U.S. COPD Coalition and the ATS Public Advisory Roundtable (ATS-PAR) held a COPD Roundtable meeting designed to meet this need. This COPD Roundtable meeting had one representative from most of the patient-centered and professional organizations concerned with respiratory illnesses and COPD. (Mary Burns represented PERF). Most importantly, also there, lending support and leadership were representatives of ATS (The American Thoracic Society), GOLD (Global Initiative for COPD), as well as Dr. Claude L'Enfant, Director of NHLBI (National Heart, Lung and Blood Institute). NHLBI is a division of the National Institutes of Health (NIH), the governmental body responsible for promoting medical research. Suzanne Hurd,PhD the well known Director of the Lung Division of NHLBI and of GOLD helped lead the meeting. The government is now backing us! These are very important people on the national scene and in a position of influence. The message was that now is the time to join together and build a meaningful collaboration of all groups serving the COPD community. We need to form a nation-wide association advocating for emphysema and COPD patients. In the past, these various groups have each gone their own way, often duplicating efforts. We need to consolidate so that we don't splinter our effectiveness at accomplishing our goals. There is strength in unity!
  • Dr. L'Enfant spoke about the slow progress that had been made on this disease in the 40 years that he has been working on it. He stressed the need to work better, faster and use everything that we know. The Global Initiative for COPD (GOLD) is a big step towards this. In partnership with NHLBI it is designed to increase awareness, improve diagnosis and management and promote research. He reminded us again that there is strength in our numbers!
  • A roundtable discussion, lasting several hours, provided a lively exchange of ideas on where we should start first. The Coalition will try to raise awareness of COPD by
  • Maintaining a website linked to Coalition members with information about their programs and activities.
  • Promoting activities of Coalition partners Making.
  • National COPD Awareness Month a yearly event. President Bush has named this November as the first National COPD Awareness Month.
  • Gaining the consensus of partners on key messages about COPD and communicating them to a national audience.
  • Planning a National Conference on COPD. The first one will be in Washington, DC on November 13-15, 2003
  • Several committees were formed, all of which will have a patient representative. The top five advocacy issues identified by participants were:
  • Reimbursement for pulmonary rehabilitation, oxygen and other medications.
  • Access to insurance and care for COPDers.
  • Funding for COPD research.
  • COPD awareness.
  • Providing information on newly introduced medications, equipment and health services for COPD patients.
  • The goal of more education extended to the members of Congress, as well as patients and the public. Congress decides how much funding should be allowed for rehab (and for research!). Did you know that only 14% of the population knows what COPD is? It is small wonder that Congress ignores our needs. How do we get the funding that much smaller advocacy groups get for their members? Here is how all of you can start to help right now. We need to get the attention of Congress by writing to our individual representatives about our problems and needs. They DO pay attention to their home constituents! We also need to enlist the support of celebrities, or well-known individuals, to help our cause and to help the public know more about this condition. While there are about 16 million people in the United States diagnosed with COPD it is estimated that there are another 16 million who have this condition but are unaware of it, or of the help that is available to them! All of these people have family and friends. Surely, among all of our readers, there is someone who has a contact in the government, or with a well-known individual, that they are willing to approach. Or perhaps you yourself are willing to be a spokesperson. Please call (310) 530-8390 if you have any ideas about how we can further this cause! You can also reach the Coalition web site at www.uscopd.com for more details on all of this information. The time has come. We need to rise up and make our voices and our needs known. Please join us as we work with this Coalition to help those with respiratory disease!
  • Special thanks to Jo-Von Tucker of the Cape Cod COPD Support Group and the American Institute's Emphysema/COPD Composite Program for sharing her notes with Mary on this exciting meeting. You may better know Jo-Von as the Poster gal for the Helios oxygen system and as one of the authors of “Courage and Information".