PERF, The Pulmonary Education and Research Foundation, is a small but vigorous non-profit foundation.  We are dedicated to providing help, and general information for those with chronic respiratory disease through education, research, and information.  This publication is one of the ways we do that.  The Second Wind is not intended to be used for, or relied upon, as specific advice in any given case.  Prior to initiating or changing any course of treatment based on the information you find here, it is essential that you consult with your physician.  We hope you find this newsletter of interest and of help

National COPD Conference

The first National COPD Conference was exciting! Held November 14-15 in Arlington, Virginia, it was attended by more than 500 patients, health care professionals, and well known physicians. Also there, were representatives of organizations such as ALA (American Lung Association), ATS (American Thoracic Society), ACCP (American College of Chest Physicians), AACVPR (American Association of Cardiovascular and Pulmonary Rehabilitation) and, very importantly, representatives from the government. Mary Burns represented PERF, the Pulmonary Education & Research Foundation. There were many others, too many to name, who were there representing other patient groups. How wonderful to renew old acquaintances or finally meet these folks we knew only through email communications! If only you could feel the surge of warmth, excitement and energy in those rooms when all these terrific people came together. 

Rear Admiral Christina Beato, MD, Acting Assistant Secretary of Health and Human Services is the principal advisor on health policy and medical and scientific matters to Secretary Tommy Thompson. She said that Health and Human Services will focus more on disease prevention in the future. Medicare reimbursement for preventative and early diagnosis screenings with spirometry are going to be looked at and probably considered as a standard of care, as mammograms and flu shots already are. What does this mean? It sounds like the Feds will start reimbursing diagnostic screening with spirometry in the near future. About one half of those afflicted don't even know that they have a problem; COPD usually is not diagnosed until half of lung function is lost. Can you believe that in addition to the 14 million diagnosed with COPD there are probably more than 10 to 16 million undiagnosed? With better screening techniques it is hoped that these unidentified individuals can be found and helped. (Did you know that abnormal spirometry is a marker for many diseases besides COPD?) Early detection of COPD with spirometry is something that Dr. Tom Petty has been fighting to achieve for many years. What wonderful news for him, and for all of us.

More active management of COPD using evidence-based guidelines is also going to be emphasized. The majority of patients see a primary care physician. These doctors often miss the signs of COPD until it reaches an advanced stage. By using guidelines, it is hoped that more patients will receive treatment at an earlier stage. It was suggested that these guidelines be given to patients, as are those for asthma.

Did you know that COPD costs 30 billion dollars a year in medical costs? As the pie chart to the left shows, a large fraction of the direct costs of COPD are spent on hospitalizations for exacerbations. The number of exacerbations a patient has is, of course, associated with mortality. Three months after getting sick many patients have not yet returned to their baseline. And yet, only 50% of patients get their annual flu shot. Preventing exacerbations is important to survival!

The importance of spirometry for early identification, and the need for smoking cessation, was stressed by all speakers at the meeting. 90% of COPD is caused by smoking. The other causes include alpha-1 antitrypsin deficiency, and (perhaps) low birth weight and frequent childhood infections. Scientists, however, are beginning to find genetic links in addition to alpha-1 antitrypsin deficiency. Do you know a family in which many of the family members are smokers and all of the smokers have COPD...and other families where none of the smokers have COPD? This suggests that there are genetic links for COPD. There are apparently chromosomal abnormalities that will cause you to get COPD if you smoke. It is a difficult disease to study and research because low level lung destruction takes time. 

All speakers at the meeting stressed the importance of spirometry for early identification, and the need for smoking cessation.  Smoking causes 90% of COPD.  The other causes include alpha-1 antitrypsin deficiency, and (perhaps) low birth weight and frequent childhood infections.  Scientists, however, are beginning to find genetic links in addition to alpha-1 antitrypsin deficiency.  Do you know a family in which many of the family members are smokers and all of the smokers have COPD…and other families where none of the smokers have COPD?  This suggests that there are genetic links for COPD.   There are apparently chromosomal abnormalities that will cause you to get COPD if you smoke.  It is a difficult disease to study and research because low level lung destruction takes time.

HIV	$42,206
Kidney Disease	$13,414
Liver Disease	$6,756
All Cancers	$4,723
COPD	$508

Do you know how your tax dollars are spent for research?  Research expenditures per death are illustrated in the table to the left. However, a scientific revolution is here and there is great promise! The more we learn about what causes COPD, the more our opportunities to find cures. 

Oxygen, and competitive bidding for oxygen, was discussed only in Round Table breakout sessions. Perhaps this is because oxygen has long been recognized as a proven therapy for extending life for those who need it. Cinda Claprood, of Citrus Valley Hospital in Covina, and Mary Burns, flew in to the Conference a day early in order to visit the office of Congresswoman Jane Harman (D-CA) and discuss competitive bidding for oxygen. A bill facilitating competitive bidding for home health care equipment is working its way through Congress and our fear is that it will restrict access to ambulatory oxygen. Brian Adkins, the lawyer in Jane Harman's office who met with Cinda and Mary, was receptive, asked a lot of intelligent questions, and has since written back to tell us that he inserted a section on competitive bidding in his recommendations on the bill for the Congresswoman and spoke with her on this at length. We were pleased.

Those of us in the clinical trenches were disappointed that only a brief mention of the importance of pulmonary rehabilitation was made by most speakers. An exception to this was John Walsh, who stressed the value of rehab during one of most inspiring lectures of the conference. John is President and CEO of the Alpha-1 Foundation and regularly testifies to Congress and advisory groups as a patient. He was diagnosed with alpha-1 antitrypsin deficiency in 1989. Individual physicians, and all of the patients who came to the mike, also stressed the importance of rehab and the immense difference it had made in helping to improve lives. 

Did you know that...
Only 14% of the population knows what "COPD" means, and that includes many people diagnosed with it! There was talk about changing the term COPD to something that sounds "nicer", but Dr. Bart Celli shot this down saying, "If you can make SARS a household word in a few months you can make COPD known also!" Most attendees seemed to agree, so now all of us need to join the big push for recognition of COPD. A major goal of the conference, and for all of us, is to make the term COPD a household word. But, we need lots of help to do so, YOUR help!

Senator Mike Crapo (R-ID) is the younger brother of the two well-known Drs. Crapo, both of whom are pulmonary medicine doctors. In September, he introduced the Senate resolution that established November 2003 as National COPD Awareness Month. When speaking to our group he admitted that he had become aware of the term COPD only a few months before that. This common lack of knowledge, he declared, is truly amazing! COPD is the 4th leading cause of death in the United States, and in the World, and is the only one of the 10 leading causes of death for which death rate is increasing. COPD is expected to be the 3rd cause of death within 20 years. WHO (World Health Organization) considers COPD a top international priority. Shouldn't it be a priority for the United States also? 

Then came one of the most exciting accomplishments of this conference. Senator Crapo declared that he will propose a COPD Caucus aimed at helping the legislature, and the country, to also become aware of this problem and to start attacking and treating it. Without this knowledge, there will be no legislative push for the funding of research, portable oxygen or pulmonary rehabilitation. He went into a great deal of detail about what could be done to accomplish this. He warned us all, however, that this Caucus would be of no value unless many other Senators and Representatives joined him. He urged all of us to contact the Senators and Representatives from each of our home states to join in making this COPD Caucus a force for change. 

Never let your elected representatives forget that there are 14 million people diagnosed with COPD in the US and an estimated 10 to 14 million still undiagnosed. That's a lot of potential voters, especially when you add in all the concerned family members! We need to make our problem known and we have the potential clout to do it! Political differences were forgotten as we all joined in supporting our common cause. Senator Crapo received a long, standing ovation, which doesn't happen very often at this sort of meeting.

Mary has already sent e-mail letters regarding the proposed COPD Caucus to her legislators. We urge all of our readers to do the same! E-mail or send a letter to your Senators and Congressmen. Make them aware of the term COPD and urge them to join the COPD Caucus! It was recommended that our letters not be too long, but it is hard to be informative and brief at the same time! If you get a successful response to your efforts, let us know. We will print an honor roll of those who join this effort in future Second Wind issues. 

Ask your friends, neighbors, and acquaintances if they know what COPD stands for. Educate them! We need all of you to join in this campaign to make COPD a household word, and to convince our national representatives to join this COPD Caucus. Bring your patient clubs on board in this effort. Just e-mailing your representatives "Make COPD a household word. Join the COPD Caucus!" would be of great help if we all participate. Only by getting Washington involved will we get the funding and the legislation we need to help us win this battle. 

Whew! This has been a tough issue to write. Deciphering pages of notes and memories, from days of talks, and condensing them into a few pages was difficult. It was also a big responsibility. We wanted to convey to you the excitement that we felt on leaving this conference. We wanted to energize you enough to help us achieve the goals we are all striving for. We wanted to have you enter the New Year filled with positive anticipation of the future. I hope we succeeded.