COPD awareness is present more than just one day a year in November. It's a movement that's been gaining support and growing stronger over the years. "There's a real push because people are making a concentrated effort to help organizations and their communities by establishing events across the country throughout the month of November," says John Walsh, President and founder of the COPD Foundation.
Sam Giordano, Executive Director of the American Association for Respiratory Care (AARC), says his organization is working with state societies nationwide and requested they host a COPD awareness event on November 18th. The event will include spirometry testing in state capitals.
"Advocacy is what we do right now because its what we can do," Giordano says. "We keep an eye on the present, but [also] keep an eye on the future. Thats why were doing many things and making the public aware of the symptoms of the disease."
Giordano says the outreach will increase awareness and educate state governmentsin both the legislative and executive branches about COPD.
"Its about the economic burdens, the human cost and the need to get those 12-14 million people who are undiagnosed so they can get treatment," he says. "Everybody says we have to do a better job at managing people with chronic illnesses, and well, this is one of the biggest ones."
This year also marks the sixth annual Respiratory Rally hosted by the Respiratory Health Association of Metropolitan Chicago (RHAMC) in Rolling Meadows, IL. The event offers educational sessions on breathing techniques, oxygen usage and COPD medications, while also featuring speakers who are doctors or respiratory therapists.
"Its a patient-focused conference, and a great opportunity for the COPD community to speak as a community," Joel Africk, President and CEO of RHAMC, says. "Too often, people with COPD can feel isolated from others, and weve been told theres a great strength [felt] when sitting in a banquet hall with 300 other people with COPD."
Africk also says that the Respiratory Rally benefits the Association as much as it does the patients.
"We learn from the speakers, the small group sessions and the other people we visit with," Africk says. "Its a real good opportunity for an exchange of information and to share experiences in a day and age when a typical doctors appointment is six to 10 minutes. This is a real opportunity for the patients [to communicate]."
He also thinks that the event boils down to the topics of community and learning.
"Our Respiratory Rally addresses the whole patient," he says. "Theyre not even patients. Theyre people living with COPD [and] this is to remind them its about living with COPD."
In addition to specific events, partnerships, such as the one between the COPD Foundation and COPD Learn More Breathe Better campaign by the National Heart, Lung and Blood Institute (NHLBI), have been imperative in building awareness of COPD.
Established by the NHLBI in 2007 to increase awareness and understanding of COPD and its risk factors, the COPD Learn More Breathe Better campaign works with leading professional societies, health, and advocacy organizations, known as the Breathe Better Network, to underscore the benefits of early detection and treatment.
"Since the COPD Learn More Breathe Better campaign launched in 2007, together with our growing network of partners like the COPD Foundation, we have made great strides in working together to raise awareness of COPD," says Amy Pianalto, Director of the COPD Learn More Breathe Better campaign. "However, COPD continues to be the 4th leading cause of death in the United States today. With increasing numbers of Americans at-risk, it is even more important that we continue to work together to inform and educate about COPD."
"COPD Learn More Breathe Better has been successful in getting more involvement from organizations across the country and generating more awareness on COPD," Walsh says. "The COPD Foundation is partnering with organizations and communities to help create COPD coalitions in every state. This will help COPD communities advocate for a COPD action plan in their state, and in turn, have their needs addressed. But the important thing is to have the communities focus on spreading awareness about COPD and access to appropriate care."
In October, the NHLBI awarded 15 contracts through the public relations firm Porter Novelli, totaling $462,000 to communitybased lung health organizations nationwide "to support efforts to improve awareness and understanding of COPD."
The awards support the COPD Learn More Breathe Better campaign and "enable organizations to prepare state action plans, educate health care providers and bring greater awareness about COPD and its symptoms, the importance of early diagnosis and treatments to those at risk for or living with the disease," according to the October 1st NHLBI press release.
Walsh says NHLBIs support of community organizations will ultimately improve the lives of people with COPD.
In 2003, the U.S. COPD Coalition was created to spread awareness to government agencies among other organizations to garner more support for COPD.
"We also want to spread public awareness of the disease, do some identification and also exchange ideas," Giordano, who is also a member of the U.S. COPD Coalitions executive committee, says. "The Coalition encouraged many members of Congress to join whats called the Congressional COPD Caucus."
The Coalition, which is the primary advocacy platform for federal legislation and regulatory issues, is also working with the COPD Learn More Breathe Better campaign to educate individuals about COPD.
"The U.S. COPD Coalition is an organization of all the state coalitions serving as a platform to exchange information, ideas and communication to reduce the duplication of resources among members," Walsh says. "We try to avoid duplication of efforts and share what works and what doesnt so that we improve our chances of success since we all share the same goal: improving the lives of those affected by COPD."
Even with awareness of these efforts spreading through these organizations at the national level, many states still do not have a COPD state action plan similar to what has been done in Illinois.
The Illinois COPD Coalition, which was established by RHAMC and is comprised of 100 stakeholders throughout Illinois, is focused on creating a comprehensive COPD State Plan. The plan is aimed at discovering what can be done to improve conditions in the COPD community. "The question is, 'What can we do better to help people live with their COPD?'" Africk says. "We might, for example, be talking about a better way for researchers at different institutions to communicate with each other about developments in COPD research and collaborate in recruitment for studies. Africk says that through the RHAMC, theyve seen a significant demand for their services and increased recognition from elected officials.
"They remember us," Africk says. "They understand the disease better than when we first met with them. Its only a matter of time before the general public will also better understand COPD."