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EFFORTS — PO Box 20241
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Ph: 1–866–END–COPD
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EFFORTS Talking Points for COPD

1. The Disease — A Definition

According to 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 smoking. However, up to 25 percent of people with COPD never smoked. A rare genetic condition called alpha–1 anti–trypsin (AAT) deficiency can also cause COPD.1

2. Morbidity and Mortality

Currently, chronic lung diseases rank as the third leading cause of death in the US behind cancer and cardiovascular disease.2 The September 29, 2017, issue of HealthDay News reported from 1980 through 2014, more than 4.6 million Americans died from some kind of chronic respiratory illness. In 1980 the risk was 41 for every 100,000; in 2002 it was 55 per 100,000; 2014 it was 53. Eighty–five percent or 3.9 million people were from COPD. It was during this time COPD passed stroke to become the third leading cause of death in the United States.3

With the rate of pulmonary illnesses so high recommendation the world over was to find better detection methods. Many don’t have symptoms until the quality of life has greatly deteriorated. It is often stated that COPD is diagnosed after age 65. However, in a 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 Economic Factors

COPD is an enormous economic burden on society. It strikes during the height of the productive years, significantly interfering with the ability to earn a living. It forces many to go on Social Security disability or take early retirement at an early age. COPD often disrupts the lives of the individual and family for many years before death occurs. According to the CDC Costs attributable to having COPD were $32.1 billion in 2010 with a projected increase to $49.0 billion by 2020. Total absenteeism costs were $3.9 billion in 2010 with an estimated 16.4 million days of work lost because of COPD.4 In 2012, hospitalizations for acute exacerbation of COPD account for $13.2 billion of the nearly $50 billion in annual direct costs for COPD—over one–quarter of the total cost. This is probably because one in five patients requires rehospitalization within 30 days of discharge after admission for COPD acute exacerbation.5 Pulmonary medications have risen in price as their delivery methods have changed and patents have been renewed. COPD is an enormous economic burden on the patient.

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 a 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.

Treatment options are limited due to the outrageous cost of COPD medication in the US. It does not matter whether the patient has insurance. Until Medicare is allowed to negotiate drug prices the cost will not go down. Until there is complete transparency in drug pricing, the cost will not go down. Until pharmaceutical manufacturers stop patenting old formulas with “innovative delivery methods” drug prices will not go down.

5. Insufficient Money for Research on COPD

Twenty years ago,the US Congress requested that a panel from the National Academy of Sciences (NAS) to undertake a study of NIH funding patterns. The 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. They keep the last ten years of data for download at https://report.nih.gov/categorical_spending.aspx.

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 COPD ($111), the 3rd 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.6

2018 Research Allocations (In Millions)6

HIV/AIDS Kidney Liver Diabetes Cancers Heart Pneumonia/Flu COPD
$2,995 $598 $802 $1,039 $6,335 $1,403 $467 $111

The table below has its data from the Estimates of Funding for Various Research, Condition, and Disease Categories (RCDC) published by the National Center for Health Statistics (NCHS) at the Centers for Disease Control & Prevention (CDC) on April 19, 2019.6 There were 288 total number of Research/Disease Areas in the table. COPD is in the middle, which is a shame for the 3rd highest killer in the US and on to becoming the 3rd highest for the world according to the World Health Organization.7 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)6

Cancer Cardiovascular Lung Lung Cancer Stroke Asthma COPD
2015 Actual $5,389 $1,991 $1,619 $349 $288 $281 $97
2016 Actual $5,589 $2,108 $1,604 $331 $308 $266 $97
2017 Actual $5,890 $2,197 $1,718 $352 $331 $286 $100
2018 Actual $6,335 $2,269 $1,849 $403 $348 $304 $111
2019 Estimated $6,610 $2,348 $1,935 $415 $361 $318 $115

The US is not the only place finding research funds not adequate. The Pharmaceutical Journal published in 10 Nov. 2016, that lack of COPD research funding, as well as problems with clinical trials, made finding new treatments challenging.

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 3rd 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 our HOME page at http://www.emphysema.net.

1 https://www.nhlbi.nih.gov/health–topics/copd What Is
2 https://www.webmd.com/heart–disease/news/20160701/top–10–death–causes
3 https://www.webmd.com/lung/copd/news/20170929/respiratory–disease–death–rates–have–soared#1
4 https://www.cdc.gov/copd/infographics/copd–costs.html
5 https://journal.chestnet.org/article/S0012–3692(16)48969–5/pdf
6 https://report.nih.gov/categorical_spending.aspx
7 https://www.who.int/respiratory/copd/en/