EFFORTS — PO Box 20241
Kansas City, MO 64195–0241

Phone: (877) 2–ENDCOPD
The information on (or referenced by) the EFFORTS’ website and discussion lists is not intended or implied to be a substitute for the professional medical advice of your own healthcare providers.

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As a patient advocacy group, we rely on your contributions/donations to maintain the mail list group, this website, and help board members attend conferences and to increase our participation in research.

EFFORTS Talking Points for COPD

1. Definition

According to a May 2001 report from the National Heart, Lung, and Blood Institute (NHLBI), Chronic Obstructive Pulmonary Disease (COPD) is defined as a slowly–progressive disease of the airways characterized by gradual loss of lung function. In the US, the term COPD now includes chronic bronchitis, chronic obstructive bronchitis, emphysema, or combinations of these conditions. The most significant risk factor is cigarette smoking, although pipe and cigar smoking and passive exposure to cigarette smoke are also risk factors. Other documented causes of COPD include occupational dusts and chemicals.

Genetic factors also play a significant role in some forms of COPD.

2. Morbidity and Mortality

Currently, COPD ranks as the fourth leading cause of death in the US behind heart disease, cancer, and cardiovascular disease, and it is the only major disease that continues to show increased mortality rates each year. In contrast, seven of the other ten leading causes of death actually showed decreases in mortality. One example is heart disease, which dropped by nearly 35% from 1979–1997.

By contrast, data provided by the American Lung Association indicate that death rates for COPD actually doubled between 1979 and 1998. By 2020, COPD is expected to rise to the third leading cause of death in the US (World Health Organization).

In “Healthy People 2010”, a publication of The Centers for Disease Control (CDC) and the National Institutes of Health (NIH), one central recommendation was that developing better methods for early detection of COPD is of utmost importance.

It is often stated that COPD is diagnosed after age 65. However, in a recent survey of 338 members of our EFFORTS organization, we found that the age of diagnosis averaged 47 years for females and 56 years for males. It was also noted that many were experiencing symptoms of their disease long before they were actually diagnosed.

Unfortunately, it is not at all uncommon for someone to have lost 50% or more of his/her lung function before they are diagnosed.

3. Compelling Econmic Factors

COPD is an enormous economic burden to society. It strikes during the height of the productive years, significantly interferes with the ability to earn a living, forces many to go on Medicare disability or take early retirement at an early age, and often disrupts the lives of the individual and family for many years before death occurs.

According to data from the NHLBI, the direct costs of health care services and indirect costs related to loss of productivity for COPD were $26 billion in 1998 and $30.4 billion in 2000. Medical expenses for COPD patients are extremely high because of frequent visits to the emergency room, extended hospital stays, and expensive medications. In 1997, there were an estimated 13.4 million physician office visits and more than 600,000 hospitalizations for COPD (NHLBI, 2001). Data from the Centers for Disease Control indicate that diseases of the respiratory system rank #3 in the number of emergency room visits. It is expected that all of the costs associated with COPD will continue to spiral upward because the prevalence of COPD is continuing to rise each year.

4. Treatment Options for COPD are Very Limited

There are only a few treatment options available to the millions of patients who suffer from this killer disease. None provides a cure and only treat the symptoms.

Physicians can experiment with medications developed for asthma, consider surgery, prescribe oxygen, and/or refer the patient for pulmonary rehabilitation. Unfortunately, Lung Volume Reduction Surgery (LVRS), a procedure shown to be helpful to some but not all patients, is not covered by Medicare and many insurance companies because it is considered to be an experimental procedure. Lung transplantation is a viable option, but the strict medical requirements and critical shortage of organ donors make it available to a relatively small number of patients.

Pulmonary rehabilitation, universally recognized as extremely important for optimizing patients' overall physical conditioning, is not universally available to everyone in need because it is not covered by Medicare in most states.

One medicine was developed specifically for COPD a few years ago. Another “blockbuster” drug with great promise has been tested and approved in several countries outside the US, but has not yet been approved by the FDA. At a recent hearing at the FDA (9/02), it was determined that although this important drug was safe and shown to bring significant improvement in measures of lung function, the FDA still wanted additional testing. This ruling will cause a significant delay in the availability of this important drug to people with COPD. Some of our EFFORTS members have been able to get this medication from overseas and have found that it gives them significant relief.

However, the cost of the medication plus the cost for overnight airmail is prohibitive for many. In addition, many US physicians will not prescribe the drug until there is full FDA approval.

5. Insufficient Money for Research on COPD

Because of concerns about research priorities being set at NIH, Congress requested that a panel from the National Academy of Sciences (NAS) undertake a study of NIH funding patterns. Results of their 1998 study revealed large disparities in NIH spending according to disease category. This led to a recommendation by NAS that NIH should systematically consider data on the prevalence, death rates, and costs of different diseases in setting its research agenda and priorities (New York Times, 1998).

Historically, NIH funding for research on COPD has been extremely small in comparison to other diseases. Note in the table below the huge disparities in spending per death for COPD ($588), the 4th highest killer, versus funds allocated for HIV/AIDS, kidney and liver disease, and diabetes where prevalence rates are much lower and significantly fewer deaths occur each year.

NIH Spending Per Death (In Dollars) for Various Disease Categories

HIV/AIDS Kidney Liver Diabetes Cancers Heart Pneumonia/Flu COPD
$43,206 $13,414 $6,756 $4,856 $4,723 $1,160 $750 $588

We have obtained data regarding funding allocations from the NIH for 1999 through 2003 for a sampling of disease categories. Note in the table below the huge disparities in research dollars spent for COPD, the 4th highest killer, versus cancer, heart disease, and stroke, which are the three leading causes of death in the US. Spending levels for other lung diseases are also included so that readers can see the apparent low priority associated with COPD even among other respiratory diseases.

Research Allocations (In Millions)

Cancer Cardiovascular Stroke Lung Cancer Asthma Cystic Fibrosis COPD
1999 $3,377.30 $1,327.10 $186.00 $163.00 $186.40 $71.60 $33.00
2000 $3,856.60 $1,500.30 $206.50 $180.70 $158.00 $80.90 $35.56
2001 $4,376.80 $1,588.20 $215.10 $225.60 $167.30 $85.50 $38.05
2002 $4,929.80 $1,477.00 $64.40 $259.001 $144.10 $47.00 $40.60
2003 $4,448.80 $1,580.40 $58.90 $297.002 $154.20 $50.30 $43.40


6.An Agenda for Action

We believe that the continuing rise in death and disability due to COPD in this country is distinct public health emergency. Millions of children under the age of 18 begin smoking every day. Approximately 15%–20% of those who smoke will eventually develop severely disabling COPD, and there are growing concerns about the harmful effects of our environment on lung function.

The National Heart and Lung Education Project (NHLEP) has pointed to the major reduction in heart attack and stroke as one of the greatest public health success stories in this country. This was accomplished by awarding massive research and public education funds to several governmental organizations, including NIH.

Why hasn’t the same thing been planned for COPD, the 4th leading cause of death in this country? If the Congress, the NIH and other agencies will commit to massive increases in research funding related to treatment, early detection, prevention, and education, the war against COPD can be won.

We strongly urge you to use your authority and powers to help bring about increased research funding for COPD and related lung diseases. Your help in this matter is of utmost importance.

For more information, please visit http://www.emphysema.net.