Chronic Obstructive Pulmonary Disease (COPD) is the third leading cause of all deaths in the U.S., the most recent available data showing it was the primary cause of death for >76,000 women and >68,000 men 45 and over in 2013 (CDC Wonder accessed on September 24, 2015). The disease affects a large portion of the adult U.S. population, 6.5% of those aged 25 years and older, corresponding to approximately 14million people (60% of whom are women), according to data obtained through the CDC Behavioral Risk Factor Surveillance System (BRFSS) for 2011 and the default intercensal population data. This high COPD prevalence translates into frequent physician office and emergency department visits and hospitalizations (see report and data).
COPD is a multifaceted disease, and, while mostly related to present or past cigarette smoking, approximately 15% of COPD occurs in individuals who have never smoked. There are gender and racial/ethnic differences in COPD prevalence and mortality. Characteristically, the individual with COPD is also affected by a variety of comorbid conditions that require precise, patient-tailored approaches to treatment. The disease is responsible for frequent hospital and intensive care unit (ICU) admissions, and it decreases the likelihood of employment of the affected individuals, causing them to rely on the support of family caregivers. Societal costs associated with COPD reached over $32 billion annually in direct health care costs and another $20 billion in morbidity and mortality (2010 data).
The huge burden of COPD within the US population has prompted long-standing research efforts both in the US and abroad and these have led to significant improvements in diagnosis and therapy for the disease. Notwithstanding these successes, the current epidemiological data clearly underscore the need for additional efforts to develop and implement new coordinated preventive, diagnostic, and therapeutic approaches.
The importance of COPD to the health of the nation was highlighted by the Senate Appropriations Committee in FY2012 with the encouragement to the NHLBI “to work with community stakeholders and other federal agencies, including CDC, to develop a national action plan to respond to the growing burden of this disease”. A letter from Reps. Lewis, Joyce and Shea-Porter on November 2014 to the CDC Director, Dr. Thomas Frieden, and the NIH Director, Dr. Francis Collins, requested “that the NIH and the CDC create a National Action Plan for COPD in fiscal year 2015”. The reply from both Directors assured the members of Congress that “in late 2015, the NHLBI will be convening a meeting involving federal and non-federal stakeholders, including patients and their family caregivers, to develop a National Action Plan to coordinate activities targeting this disease”.
In response to these requests and in collaboration with CDC and other federal partners, the NHLBI -- the NIH component with primary responsibility for lung diseases -- previously organized two trans-governmental preparatory workshops to discuss the structural and scientific environment for a COPD National Action Plan 2013 and 2014. As a follow-up to those two workshops, and in preparation for convening a meeting involving both federal and non-federal stakeholders, including patients and their families, NHLBI organized on September 10, 2015 an additional conference call among federal partners. The objective was to plan a public COPD Town Hall Meeting that will begin to shape a COPD National Action Plan. This report provides a summary of that September 2015 meeting.
The teleconference began at 2:00 p.m. EST on September 10, 2015. The federal participants were informed of the intent of NHLBI to convene a public Town Hall meeting on February 29 and March 1st, 2016 in Bethesda, Maryland. That meeting will be an opportunity for individuals who have COPD, their families, and all interested parties across the country to engage with other stakeholders and have a voice in shaping a COPD National Action Plan developed in response to encouragement from Congress.
To create a core agenda for the Town Hall meeting, six preliminary goals addressing the public health burden of COPD were presented and discussed. These goals originated from previous efforts led by CDC, and other organizations at the State or regional level, and from discussions NHLBI held internally and with various COPD stakeholders.
After discussions among federal partners, the six preliminary goals proposed were modified as follows:
- Empower patients, their families, and communities to recognize and reduce the burden of COPD
- Increase and sustain prevention, detection, diagnosis, treatment, and management of COPD
- Increase collaboration and coordination to sustain surveillance efforts and improve the collection, analysis, dissemination, and reporting of COPD-related public health data
- Increase and sustain research to better understand prevention, pathogenesis, diagnosis, treatment, and management of COPD
- Increase awareness and sustain COPD education among stakeholders, decision makers, individuals with COPD, their families, caregivers, communities and populations at risk
- Integrate recommended policy, educational, and program changes into the legislative, research, public health, and care delivery structures of the nation
These preliminary goals will serve as a starting point for an iterative process that will involve both federal COPD partners and other COPD stakeholders and will culminate in a national action plan for COPD.
These goals will provide a framework for discussions at a Town Hall meeting, planned for December 3-4, 2015. At that meeting each goal will be further developed to specify: a)Target Audience; b)Background; c) Short-Term and Long-Term Objectives; d) Strategies; e) Benchmarks; and f)Available and Needed Resources.
Summary and Developments
COPD is a multifaceted disease, and approximately 15% of COPD occurs in individuals who have never smoked. There are gender and racial/ethnic differences in COPD prevalence and mortality. The disease is responsible for frequent hospital and ICU admissions. Societal costs associated with COPD surpassed $52 billion in 2010.
NHLBI, with the collaboration of other federal partners, recognizes the important contribution of diverse groups and organizations in efforts to reduce the burden of COPD. A Town Hall meeting is planned to enable coordination of goals and activities.
All stakeholders interested in contributing to the development of the plan, discuss its contents, and be active participants in its implementation, are invited to attend the Town Hall meeting (registration required).
By registering stakeholders will be able to:
Comment in advance on the proposed goals
Provide suggestions regarding plans for the meeting
Identify which goal(s) subgroup they want to attend
Receive detailed information regarding plans for the meeting (location, nearby lodging, etc.)
Workshop Participants and Agencies/Institutes
Centers for Disease Control and Prevention (CDC)
Janet B. Croft, PhD
Centers for Medicare & Medicaid Innovation (CMMI-CMS)
Ron Kline MD
Food and Drug Administration (FDA)
Lydia I Gilbert McClain, MD, FCCP
Health Resources and Services Administration (HRSA)
Bureau of Primary Health Care
Preeta Chidambaran, MD, MPH
Health Resources and Services Administration (HRSA)
Federal Office of Rural Health Policy
Allison Hutchings, MPH
National Cancer Institute (NCI)
Judith J. Smith, MSN, RN, AOCN
Eva Szabo, MD
National Center for Health Statistics (NCHS-CDC)
Jennifer Madans, PhD
National Institute on Aging (NIA)
Sue Zieman, MD
National Institute on Drug Abuse (NIDA)
Elizabeth Lambert, PhD
National Institute of Environmental Health Sciences (NIEHS)
Dan Morgan, MD, MPH
National Institutes of Health (NIH), Office of the Director (OD)
Office of Disease prevention
Helen I Meissner ScM PhD
Rachel Ballard, MD
National Heart, Lung, and Blood Institute (NHLBI, organizing)
James P. Kiley, PhD
Jean Berube, JD
Thomas L. Croxton, PhD, MD
Lenora Johnson, PhD
Antonello Punturieri, MD, PhD
Lisa A. Postow, PhD
Lisa M. Viviano, BSN, RN
National Institute for Occupational Safety and Health (NIOSH)
David Weissman, MD
National Institute of Nursing Research (NINR)
Karen Huss, PhD, RN
Office of the Assistant Secretary of Defense (OASD, Health Affairs)
Robin Marzullo, RN, MS
Veterans Health Administration (VHA)
William C Yarbrough, MD