COPD Awareness: Working for More Recognition
by Linda Watson


I had the great good fortune this weekend to attend the first ever National US COPD Coalition Conference  in Arlington, Va.

A little background, 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 at Columbia Presbyterian Hospital in NYC. They were taking up way too much space. I have emphysema and am on the executive board of EFFORTS, an online  patient advocacy/support group that is called the Emphysema Foundation For Our Right To Survive www.emphysema.net . I was diagnosed in 1989 by an excellent local family doctor and told to go to a pulmonologist because at the age of 38 I had the lungs of I believe it was,
a 120 year old person. I was pregnant at the time and in my great wisdom decided that I didn't want to have x-rays and things then. I would do it later. So I put it off, saw other doctors who asked me if anyone had ever told me I had asthma  and what did I take?  I said no, none ever said that but admitted to surviving on Primatene mist. I guess since no one before
them had told me I had asthma they decided not to tell me either because no further information on the subject was offered  (at least it wasn't emphysema)  Nor did I ask, after all I had Primatene Mist. By 1997 I was unable to work and finally received again, from another  doctor, the diagnosis of emphysema. I stayed with this doctor for two years.. My husband
used to carry me in and out of his office because I would be to weak to walk. My son was now nine and I was trying to do Boy Scout Camp. There was a problem with that because I had to climb up and down the mountain side on my hands and knees because I could not breathe. A girlfriend told me that my nails should not be blue, especially since there was no polish on them.  I finally got the courage to ask the doctor if I could have a referral to a pulmonologist and  how I would know if I needed oxygen? I had decided that being unable to walk 15 feet was not a good thing, and he replied that "I would know".  Having deduced that he wasn't going to tell me if I needed oxygen I realized I had better get back to my original family doctor who at least had the good sense to tell me what I had. Unfortunately when he did diagnose me in 1989, he called it COPD and I thought well, thank God I don't have emphysema. I did go to the library at that time but the only book they had was one from 1950 and I thought boy, this is some rare disease; there are not even any books about it! Back to 1999, and my original family doctor has an appointment made for me with a pulmonologist before I can get my feet
out the door.

In between doctors three and four my husband has purchased a computer against my wishes, because it is too expensive. I had the good luck to find EFFORTS website at www.emphysema.net  and realized there were people in the world who were just like me. They couldn't breathe but they knew things about their disease. All kinds of strange numbers about lung capacity and liters and strangest of all, exercise. Like me, they could not walk across the room to answer the door, but they knew all these numbers about their lungs and had had all kinds of tests and they had the same symptoms I did. This made me realize I had better change doctors fast and motivated me to get back to our good old family physician.

It is now March 1999, finally, I have a pulmonologist. Lucky for me, he is a good one. After all the testing, he comes back in with the nurse and tells me I have one to three years to live unless I get a transplant. In tears, the nurse leaves the office. We had been discussing our sons  and relatives of mine that she had known. I was just sitting there. I can't imagine what is
wrong with these people, how could I be so sick when I have been going to the doctor frequently and nobody said you  are dying fast.  It didn't really hit me until I had to tell my mother. That was the hardest thing to do.

My poor pulmonologist has to now write a book to convince the insurance company that I need a transplant. They are pretty good about it and I even get to choose between Brigham & Women's in Boston and Cleveland Clinic in Ohio. So off we go to take a zillion tests and get things moving because you can be stuck on a transplant list for a long time. By the time I
am actually getting scheduled for testing , it is August of 1999. We have made one trip to Boston, which is basically informational, and it has been decided to take more tests and set up appointments which take months to arrange.  My insurance company has now changed, because my husband's employer has decided to upgrade his insurance. (That foolish company is now out of business!) My doctor is not too pleased because he now has to write more books but he is pleased about the hospital,  Columbia Presbyterian because he knows people there.

After another round of testing, it is decided that I might be a good candidate for LVRS, an experimental operation for people with COPD/emphysema. He has two other pulmonologists confirming this, which makes him happy because it is experimental and very unhappy because he has to write more books to convince the insurance company to pay for this procedure because even though it is the only treatment available to me and I am a good candidate, Medicare does not pay for it; therefore the insurance company does not pay for it. This causes many more books and letters and discussions
between my doctor and the insurance company, and somehow he gets approval because the hospital and testing are all "in Network" and covered, it is just the surgeon's fee which remains to be negotiated.

Two days before my operation is scheduled, in June of 2000, we have a commitment from the insurance company to pay for a surgeon and all systems are go.

I am writing this because Wednesday Nov. 19th is World COPD Day and I have been unable to get so much as a ripple of attention for it in our corner of the world. Even though this disease is the fourth leading cause of death, and kills about 120,000 people a year. No one seems too interested in getting information out about it. It's also a great women's disease, it kills more women than men and even more women than breast cancer, about 70,000 a year. They can't figure out why it kills more women than men. I know why. There are women who smoke and there are women who live with men who smoke; and then there are those hormones which make it more easier for us to get the disease and harder for us to quit smoking. How hard is that to understand.  Go figure. Unfortunately, no one is too terribly interested in diagnosing it, treating it or even researching it. I have a sneaking suspicion it is because it is a "tobacco related disease".  The acronym that I use is T__RD and you fill in the blanks. These two T__RD diseases, COPD/emphysema and lung cancer combined, kill enough people to make them the third leading cause of death, but they are diseases that the government likes because they don't have to spend any money researching them because they are not politically correct diseases to have. In 1996,  the amount of money spent on research for COPD/emphysema was about thirty million dollars,  even lung cancer got about 130 million. Heart disease and cancer ( top two leading causes of death) get billions. I guess smoking doesn't contribute to those diseases. It is also a handy disease for the government because we don't live long enough to use Medicare or retire
and enjoy our social security money. Best of all, the treatment options that work for this disease are not paid for by the government. There is finally a drug out which may even improve our lung function, reduce the number of puffs we need to take on our inhalers from about 16 a day to once a day , and it was even approved by the FDA last September (2002) but there is a "labeling issue" and nobody seems to know when it will be resolved. I see they have also denied approval for another COPD drug just this past week, hmmmmmmmmm Of course, this drug has been in use in other countries for many
years . Then there is another treatment, pulmonary rehab, that's another one that doesn't get paid for, only cardiac rehab is acceptable . Pulmonary rehab  has been proven by the recently ended NETT trial, to be as effective as the operation I had  (not to mention a lot less painful). Actually it is covered in New York now, but not too many people seem to know that either.
Then there is LVRS, which has finally been okayed by CMS (guess who that is) and will be available in January, but only at certain centers and only for certain patients. Then there is the test that tells you if your lungs might be a little bit off. It's called spirometry. It doesn't cost hardly anything. Spirometers are available for between $500 and a $1000 dollars and you test lots of people with the same machine, for years. It takes about six seconds (one exhalation) and you don't have to have any sensitive parts smashed between heavy plates or drink that stuff until you have major accidents from both ends. No huge machines. It is just too easy, I guess that is why nobody does it. That test has been around for 150 years, that's what they said down there in Washington. I have decided that what is afoot is simply a conspiracy to breed a race of healthy smokers. You know, natural selection. All the people with the genes who are prone to these diseases will be killed off and only the people with the good genes will be left.

These diseases are not in the public eye much mostly because the people who have them die pretty fast and don't stick around long enough for people too notice them . No one but their families anyway. Another one I can't figure out is why, when I walk into a hospital, I always see posters from the American Cancer Society advising people to get screened for breast cancer and prostate and colon/rectal cancer. Lung cancer kills more people than all three of these combined and yet I never see a poster advising people to get screened for that! I wonder how many women that kills. I think about 360,000 people, somewhere in there. That is not an exact figure. I wonder if that one is also more women than men.

I keep trying to get some information out to the public to get screened for COPD/Emphysema but I am having a hard time. It can't be too hard. Last year they did free spirometry in grocery stores in Slovokia, of all places. I sent press releases for World COPD Day to the record last week along with all the links that have information for this disease, from the government no less but nobody seems to interested.

Anyway, I had a great time in Washington, hearing the best doctors in the world saying yes, we need to do something about this. They even invited patients to present "abstracts". Abstracts are big posters 3' by 3' with words on them in very big letters. Bigger than the biggest font on my computer, but that's not a problem, I went to Staples and got the paper enlarged so they can read them from three feet away. The poor doctors must have very bad eyes from all those books they have to write for the insurance companies.  I would like to send you a copy of mine, just to prove to you that I am not making all this up. I would also like to forward to you, copies of previous letters I have sent to health writers at the record asking them why they never include this disease in their articles, if I can find them. Not even a little blurb on the calendar on November 19th saying World COPD Day " Test your lungs, know your numbers"  That is something that they AARC people say. I like them a lot, almost as much as my pulmonologist.

The American Lung Association has made a great effort to increase the amount of information on their website about COPD/emphysema ( I always add the emphysema part so people know what I am talking about) so I figure that it must be okay to come out of the closest now. The NIH and WHO have combined in an effort to reduce the death toll from
this disease and formed the GOLD Coalition, www.goldcopd.com . In the United States it is known as the US COPD Coalition, www.uscopd.com . Their slogan this year is Could It Be COPD? catchy huh? There were lots of smart people
there from important organizations, NIH, ATS, ACCP. They all knew what I was talking about when I said COPD. I hope they invite me back next year. I had a really  great time.

I started smoking at the age of 17, when my little brother used to sneak me cigarettes when we were doing homework, late at night in my room. I started trying to quit in 1989 and it took me nine years. My beloved brother Charles passed away at the age of 47 on Oct. 9th, 2001; from lung cancer and my father on Oct. 12th 2003, from the same disease.

          Linda Watson, Executive Board EFFORTS LVRS Col. Pres., 6/5/2000

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