I was diagnosed with severe COPD in 1995, 22 years ago. As Mary and I have advised so many times, we set out to learn as much as we could about the affliction that was gradually destroying my ability to breathe, to continue to lead the life that we had enjoyed.
One of the first bits of knowledge that we gained was that COPD is the ugly stepchild of research funding. As you can see from the chart, the funding for COPD in relation to the number of deaths from the disease is pathetic, at best. Why, do you suppose, is that?
We have been harping on the funding relationships for a lot of years now, and sadly, little has changed. The obvious comparison, again referring to the chart, is with HIV/AIDS. We hold no animosity toward HIV/AIDS patients. Rather, we are delighted that they have been able to garner so much support, so much recognition, so much funding. There are a couple of lessons to be learned from them. First, research dollars apparently are effective. A tremendous amount of money has been donated and spent since the initial identification of the AIDS virus. The deaths from the virus have been reduced dramatically. Second, there has to be a reason why so much money has been donated from so many sources to fight it. The obvious reason, from my viewpoint, is that HIV/AIDS is a much more “popular” disease than is COPD.
Why is that? Well, the fight against the virus has been taken up by many sources, many segments of society. There has been a tremendous amount of publicity about the disease. When it became common knowledge that some of our most popular public figures were afflicted with the HIV/AIDS virus, when films such as “Philadelphia”, which starred Tom Hanks began appearing, the response was overwhelming.
Why, then, even though COPD has risen to the position of third largest killer of Americans, notwithstanding the fact that it is the only major disease that is still growing in numbers of patients, is our research funding still so abysmal? I have a theory.
Those of you who are wearing your oxygen cannulas 24 hours a day, who bravely gather your O2 gear and go out into the world, who have done what you can to educate your family and friends about COPD, may sit back and relax. I am not talking to you. You are not part of the issue.
For the rest of the COPD community, please consider the following questions: If you are exhibiting any of the symptoms, the coughing or the shortness of breath or frequent lung infections, have you undergone testing to see why? If you have been diagnosed, have you shared that information with your family members? All of them? How about your friends? Are your co-workers aware of it? Or are you hiding?
How can we expect anyone to help us with research funding if we do our very best to keep our disorder a secret? When was the last time that you saw a movie featuring someone wearing a cannula? We have lost some prominent figures in the last few years from complications stemming from COPD. Leonard Nimoy comes to mind. Thankfully, his family has done a lot to spread awareness since his death, but it was only during his last year or so of life that he publicized his illness.
If, again in my opinion, we are to ever hope to attract the attention of Congress or of donors, we simply have to come out of our self-imposed shadows and do whatever we can to spread awareness about COPD. We need to get over ourselves. We need to overcome the ego or the embarrassment or whatever else is keeping us from enjoying the quality of life that we are missing.
We owe it to ourselves, we owe it to our caregivers and to our family and friends, we owe it to the entire COPD community to do whatever we can to spread awareness! If we take the attitude that we will leave it to others, that our small voice will make no difference, then nothing will change.
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