Patient's Primer: Research Funding
From the Research Advocacy Committee of the American Thoracic Society
Summary: Respiratory diseases have a huge human and economic cost in the U.S. and around the world. Research to improve diagnosis, prevention, and treatment of respiratory disease is essential to ease this burden, but it requires funding. Unfortunately, research for respiratory disorders in the U.S. is dramatically underfunded relative to their cost to patients and society. This article provides a brief overview of this issue and arms patients with the information they need to advocate for expanding investments in respiratory research.
Burden of respiratory conditions: facts and figures
Q. Of the 4 leading causes of death in the U.S., which is the only one whose death rates have risen over the last 30 years?
A. Death rates from heart disease, cancer, and stroke have all decreased by over 50%, while death rates from chronic obstructive pulmonary disease (COPD) have doubled over this interval.
Q. What is the leading reason for hospitalization among children in the U.S.?
A. Asthma is the most common chronic disease and the leading cause for hospitalization among American children.
Q. Besides having a baby, what is the leading reason for hospitalization among U.S. adults?
A. Pneumonia. In fact, around the world, respiratory infections are associated with more lost years of life and productivity than any other single category of disease (including HIV infection, cancer, and heart diseases).
Q. What lung disease that most people have never heard of kills as many Americans each year as breast cancer?
A. Pulmonary fibrosis.
Q. What type of cancer is the leading cause of cancer death in the U.S. for both men and women?
A. Lung cancer.
Q. What critical illness kills as many Americans annually as do breast, colon, and prostate cancer combined?
A. ARDS, or the acute respiratory distress syndrome, which occurs in response to severe infection and injury.
Research for respiratory disease: what patients should know.
As a patient with respiratory illness, you know how your disease affects you and the quality of your life. The facts and figures cited above indicate just how large a burden is attributable to lung disease. And although you are understandably focused on your own everyday treatment and needs, it is important to not lose sight of the fact that research is the key to future improvements in diagnosis, prevention, and treatment of diseases; it also has the potential to reduce health care costs in the future. Money spent on health care services does not fund biomedical research; rather, other funds must specifically be directed towards research.
The two major funders of biomedical research are drug companies (65% of total funding) and the federal government – primarily the National Institutes of Health (NIH) (30% of total funding); foundations and charities account for nearly 5% of total funding. Unfortunately, the lingering economic downturn and concerns about the deficit have frozen both government and corporate investment in biomedical research in recent years. For example, after adjusting for inflation, the NIH budget has actually decreased by almost 10% since 2003.
Only 2-3% of the total NIH budget – amounting to $675 million annually – is allocated to respiratory-related research. Meanwhile, the total cost of lung disease in the U.S. in 2010 was estimated at $186 billion. This means that the NIH spends less than one-third of a cent on research for every dollar that lung disease costs our country. How do these expenditures compare to those for other diseases? COPD is now the third leading cause of death in the U.S and a major contributor to lost work, hospitalizations, and patient suffering. Yet for every research dollar allocated by the NIH for COPD, it allocates $3.30 for stroke, $16.67 for heart disease, and $50 for cancer! Another analysis found that, of the 7 most underfunded diseases, 3 of them – COPD, pneumonia, and lung cancer – were lung diseases.
It is quite clear that decades of substantial investments in research in heart diseases and cancer have reduced their associated death rates – which is exactly the desired outcome of research. It seems obvious that reversing the rising death rates from COPD and other respiratory conditions requires that they be allocated their fair share of research investment.
Call for action
Biomedical research is critical for reducing suffering and improving quality of life, reducing health care costs, and maintaining American competitiveness. Nevertheless, it rarely reaches the attention of the general public through newspapers and television and is usually ignored in national political discussions. Patients represent a powerful voice, and evidence shows that politicians listen to them. Death rates for lung diseases have increased while those for cancer and heart diseases have diminished. Success achieved in reducing deaths from cancer and heart disease is the result of substantial NIH funding for those diseases over the past thirty years. It is necessary that a similar emphasis in funding now be directed towards respiratory and sleep disorders and critical illness.
Now that you are informed, there is a critical need for you to become more vocal about the importance of investing in respiratory-related research, which has been underfunded for a long time. You are undoubtedly familiar with advocacy groups for specific respiratory diseases, such as the Cystic Fibrosis Foundation and the Pulmonary Hypertension Association. These groups are doing important work to raise awareness of and promote research for their target diseases, and this must continue. However, it is also necessary to recognize that a more general investment in improving respiratory science and treatments will benefit all patients and those who care about pulmonary, sleep, and critical illness.
What can you do?
- Patients and all health care providers can inform themselves about the importance of biomedical research – both generally and specifically related to respiratory disease.
- Individuals and advocacy groups must vigorously champion research funding in their local communities and at state and national levels.
- Raise awareness in your community of the need to support NIH research by writing letters to the editor in your local and regional newspapers.
- Contact your members of Congress to educate them about the vital importance of increasing overall funding for NIH as well as that dedicated to respiratory research.
- Sample letters and all of the information you need to contact your members of Congress can be found on the websites of the American Thoracic Society (http://www.thoracic.org/advocacy/take-action-now.php), Research!America (www.researchamerica.org/), or those of numerous specific disease advocacy groups.
With more than 15,000 members, the American Thoracic Society is a leading international medical association dedicated to advancing lung, critical care and sleep medicine. For more information visit www.thoracic.org.