The Real Silent Killer

 I have Alpha-1 COPD.  You don’t know what that is?  It’s chronic obstructive pulmonary disease caused by Alpha-1 antitrypsin deficiency.  That didn’t help?  I’m not surprised.  Even though Alpha-1, the major genetic risk factor for COPD, is more common than cystic fibrosis, most people have never heard of it.  Likewise, COPD is now the third greatest cause of death in this country, but we seldom read anything about it.  Search the New York Times website like I did and you won’t find a single story focusing on COPD since November 2007.  Just this past year, however, you’ll find plenty of stories focusing on Parkinson’s disease, Breast Cancer, Prostate Cancer, Alzheimer’s, Diabetes, and HIV even though COPD kills far more people in this country than any of these other diseases. 

Federal funding for COPD research is likewise disproportionate to its impact. In fact, the Centers For Disease Control doesn’t even have a budget for COPD.  As for the National Institute’s for Health (NIH), the Fair Allocations in Research Foundation (FAIR) takes NIH’s annual estimate of its support by disease and divides that by the number of deaths from each such disease to calculate its support per death.  By FAIR’s calculations, in 2012 NIH plans to spend only $8 per death for COPD, as against $42 per death for diabetes, $86 per death for Alzheimer’s, $157 for Parkinson’s disease, $177 for Prostate Cancer, $3,047 for HIV/AIDS and $3,721 for Breast Cancer.

Goggle “silent killer” and you will come up with heart disease, diabetes, and hypertension, but not COPD.  That’s not surprising.  The Real Silent Killer is the one you never read about.  A recent Canadian study estimated that one in four people over age 35 would likely develop COPD.  I’d say that was big news.  But it wasn’t reported in the New York Times.  Or how about the recent news that COPD is now the third greatest killer in the United States?  That wasn’t reported in the Times either.  I don’t mean to pick on the Times.  I’m sure the reporting on COPD is no better in any other major newspaper in this country.  But the Times is my newspaper of choice.  I depend on it.  So the question is why haven’t there been more stories about COPD? 

Perhaps it’s the outdated stigma that people with COPD are smokers.  In other words, we did it to ourselves. Yet according to the National Cancer Institute, of the 440,000 premature, preventable deaths each year in this country from exposure to cigarette smoke, 75 percent are from cancer, heart disease and stroke and only 25 percent are from COPD. Perhaps, instead, the mere image of those of us who must carry oxygen everywhere we go makes readers uncomfortable.  Alternatively, perhaps it’s the sound of our portable oxygen equipment that disturbs them. 

Ironically, the Times did carry one COPD-related story this past year written by one of its music critics.  Instead of reporting on the concert he’d just attended, however, James Oestriech focused instead on the “relentless rhythm” of a portable oxygen device that, he said, had thoroughly spoiled his enjoyment of the music.  He then expounded on whether the rights of persons with medical devices trumped his rights as a concertgoer and critic.  Finally, he advised readers who might find themselves in a similar situation that, if they complained, an usher would move the offender and his device.  To its credit, the Times then published a rebuttal from John Walsh, President of the COPD Foundation.

Current estimates are that there are twenty-four million of us with COPD in this country. Tragically, only twelve million of us have been diagnosed to date.  If and when the rest of us are, it could be too late.  COPD is preventable and treatable, especially if diagnosed early enough.  To their credit, the COPD Foundation and the National Heart and Blood Institute have each launched awareness campaigns.  Recently pharmaceutical companies have also subjected those of us already diagnosed with COPD to an onslaught of TV ads.  But we need a national conversation about COPD focusing on the major risk factors and the importance of early testing.  Who better to initiate this conversation than my favorite newspaper, the New York Times?