Making a Difference at the Federal/National Level: Advocating for CDC Funding for COPD

The COPD Foundation is proposing a federally funded program at the Centers for Disease Control and Prevention (CDC) in the chronic disease division to establish a national action plan to address COPD and begin building a public health infrastructure to address COPD. This means that the COPD Foundation is recruiting advocates to convince their congressional representatives to support funding for a COPD program at the CDC.

Miriam O’Day, the COPD Foundation’s Senior Director for Public Policy, says we already know that COPD is the fourth leading cause of death in the United States, but many fail to understand that COPD is the only disease in the top five nationwide that is on the rise. “Many believe this is because it lacks public health infrastructure,” she says.

O’Day says that plans are in the works to get funding for COPD through a federal appropriations process.

“The CDC is under the Department of Health and Human Services, which is funded through the Labor Health and Human Services and Related Agencies annual appropriations bill,” O’Day says. “So we want to get funds designated specifically for COPD in the CDC under the chronic disease division.”

The goal is to establish a program that will focus on collecting the relevant data and developing new strategies to address prevention, treatment and management, and establish community outreach programs for the 10 to 12 million people who are living with COPD—not to mention the millions of others who are undiagnosed.

Support for a COPD program at the CDC is different to the support being rendered at the local state level for a COPD module in the Behavioral Risk Factor Surveillance System (BRFSS). A CDC program dedicated to COPD will allow for community outreach programs to be developed, support some research nationwide, and help bring about attention to COPD as a chronic disease that needs addressing at the federal level—not just supporting statewide data collection on COPD. Dr. David Mannino, who worked at the CDC for 16 years as an epidemiologist in the Air Pollution and Respiratory Health branch—who is also currently serving as a professor in Pulmonary & Critical Care Medicine at the University of Kentucky and is a COPD Foundation Board member—says the first step in trying to deal with any chronic disease is to develop a better understanding of who it affects and how it affects them.

“That is the core of what the CDC is trying to do,” he says.

Mannino uses asthma as an example. Fifteen years ago, Mannino says, there was no data collection on how people with asthma were affected on a state level. It wasn’t until the CDC developed the ability to measure asthma within the states that they got a handle on the scope and impact of the problems.

“The result was fairly dramatic [with the] improvement in asthma programs,” Mannino says. “There is a better understanding of what’s going on. That’s basically what we’re trying to accomplish with COPD . . . take a similar pathway and [acquire] better data on COPD.” The next steps in the implementation of this proposed program include the acquisition of $1 million in funding so the CDC can convene a planning committee and begin nationwide data collection on COPD.

The data collection will be divided into three separate levels. The Behavioral Risk Factor Surveillance System (BRFSS) is done on a state level, the National Coroners Information System (NCIS) is a national data collection tool, and the National Health and Nutrition Examination Survey (NHANES) gathers clinical data nationwide.

“Data is one of the first steps,” O’Day says. “Then we decide what we need to do next.” O’Day says the next step would be to bring all the stakeholders together to put together a national action plan and then request additional funding for the CDC. She says that the influence of COPD figures will be key in financial aspects.

“We didn’t receive appropriations funding for a COPD program from Congress,” O’Day says. “So now it’s important for COPD stakeholders—that includes legislators, officials, health care professionals, insurance companies, and individuals affected by COPD—to come together and ask the CDC to do it without the designated funding,” she says. Some have argued that since the CDC already has a tobacco program, the COPD initiative is not necessary. Mannino disagrees. “COPD focuses not only on primary but secondary detection,” Mannino says. “I think we should be expanding more and looking at all the pieces of the prevention puzzle and what we’re doing in the world of COPD.” “We want to move from ‘shame and blame’ to a message that’s [about] prevention and COPD treatment and management,” says O’Day. Mannino says there is already interest in the agency to implement a program.

“[What’s] true in many things, is [that] a lot boils down to dollars and cents,” he says. “What made asthma programs successful was congressional allocation of dollars. Putting money behind it is something important to move it forward. The CDC needs the same monetary commitment . . . the other reality is that we’re in difficult financial times. But again, I think we remain hopeful. We’ve seen lots of positive things [so far].”

Assistance toward the implementation of this program came in May of this year from the National Heart, Lung, and Blood Institute (NHLBI) of the National Institutes of Health (NIH). The NHLBI issued a two-year grant that will focus on additional research for COPD. “These important investments through the Recovery Act not only benefits communities by creating additional jobs but also enables us to gain a better understanding of the underlying mechanisms that make these common diseases so very difficult to treat,” NHLBI Director Elizabeth G. Nabel, M.D. said in a statement May 20, 2009.

“The new research will focus on two lung diseases that are a major cause of disability and death—chronic obstructive pulmonary disease (COPD) and idiopathic pulmonary fibrosis (IPF),” the NHLBI said in a press release. “In comparison with other chronic diseases, much less is known about the underlying biology of COPD and IPF. Using small tissue samples obtained from volunteer donors during surgery, investigators will examine the molecular pathways involved in the development and progression of these diseases, which will lead to better understanding of and improved treatments for them.”

Mannino remains positive, and says he hopes to see a fully functional COPD program in the CDC within the next four to five years. “If it happens earlier than that, great!” he says. “But a lot depends on resources. I’ve been more hopeful over the last year or so than I have been in the previous 15. I’m seeing progress.”



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