The COPD National Action Plan is released as the first-ever blueprint for a multi-faceted, unified fight against the disease. Developed at the request of Congress with input from Respiratory Health Association and the broader COPD community, the plan provides a comprehensive framework for action by those affected by the disease and those who care about reducing its burden. RHA recognizes that the COPD National Action Plan serves as a springboard to promote policy change and evidence-based programs that support the needs of COPD patients and their families, and fosters better communications among health care providers, COPD caregivers, and patients – all in an effort to reduce the burden of COPD and improve health outcomes for people living with the disease.
RHA’s COPD Caregiver Toolkit is developed to address the informational and support needs of persons caring for a loved one with COPD. Through RHA’s work with the COPD community, it has identified a significant gap in educational and support resources dedicated to informal caregivers: the need for comprehensive, user-centered caregiver support tools/resources grounded in health theory. In response to this need, in 2017 RHA developed, with support by the Institute of Design at the Illinois Institute of Technology, a novel, comprehensive COPD caregiver support tool. The Toolkit provides a comprehensive overview of COPD and clearly outlines tasks that caregivers can do to support people living with COPD. RHA developed all Toolkit content to be guidelines-based and consistent with credible health sources including the Global Initiative for Chronic Obstructive Lung Disease (GOLD) and the National Heart, Lung, and Blood Institute (NHLBI).
Kathleen Hart Solovy, in memory of her husband Jerold S. Solovy, establishes the Solovy Endowment for Advancement in COPD at RHA. The Solovy Award for Advancement in COPD recognizes innovation and continued progress in the prevention, treatment and cure for COPD. The award was established at Respiratory Health Association by Kathleen Hart Solovy in memory of her husband, Jerold S. Solovy, a distinguished Chicago trial lawyer and former chairman of Jenner & Block. Jerry lived for many years with COPD, and both he and Kathleen recognized the health burden to those who live with COPD.
RHA developed a regional Midwest COPD Network in Illinois, Indiana, Michigan and Ohio to exchange and expand best practices of COPD awareness and education. In addition to its role in leading coalitions, RHA has also been instrumental in engaging legislators in national COPD efforts. RHA also assisted with getting resolutions adopted for National COPD Awareness month in Indiana and Michigan.
RHA is successful in persuading the Illinois Department of Public Health to add COPD questions to the 2010 Behavioral Risk Factor Surveillance Survey. Illinois is one of the first states to do so. The Behavioral Risk Factor Surveillance System is the largest phone public health survey in the U.S. and a key public health survey for policy and resource decision making. The inclusion of these questions will provide a better illustration of the scope of the COPD burden in Illinois including healthcare utilization and quality of life impact of COPD. Collecting this data can yield important information about the impact of COPD in Illinois and influence policies and allocation of resource for COPD prevention, diagnosis, treatment and research.
Convened by Respiratory Health Association, the Illinois COPD Coalition releases the State Plan for Addressing COPD. The plan outlines sustainable solutions to reduce the burden of COPD and makes Illinois only the second state in the U.S. to have formed a coalition with a resulting state plan. The State Plan serves as a guide to reduce the incidence of COPD and COPD-related morbidity and mortality as well as improve the quality of life for those living with COPD. Some objectives for doing this include: (a) enhance the prevention of COPD, by promoting smoking cessation activities and increasing awareness of environmental causes of COPD; (b) educate primary health care providers to help increase diagnosis rates and to provide patients with the GOLD standard of COPD care; (c) increase COPD awareness among at-risk populations and others to improve health care decision-making; (d) provide a statewide network of resources for those living with COPD to increase self-management skills and adherence to treatment; and (e) increase surveillance through the Behavioral Risk Factor Surveillance System and other data.
RHA staff and medical providers conducted spirometry testing in the State Capitol to raise COPD awareness. During the day, 37 state legislators and key staff were tested with nearly 30% having abnormal findings ranging from mild to severe obstructions. RHA encouraged these individuals to follow up with their clinicians.
Respiratory Health Association forms the Illinois COPD Coalition with more than 100 collaborators across the state of Illinois. Coalition members represent a broad group of stakeholders, including community-based agencies, public health departments, professional organizations, patients and caregivers, health care providers, home health care agencies and pharmaceutical companies.
Respiratory Health Association hosts its first annual Living Better COPD Conference for chronic obstructive pulmonary disease (“COPD”) patients and their caregivers. This is the largest annual patient-centered COPD awareness event and educational conference in the United States with between 300 and 350 individuals living with COPD and their caregivers, families, and pulmonary rehabilitation staff attending in recent years. The conference aims to promote disease awareness and to empower people who are living with COPD to become educated consumers of health care, as well as effective disease self-managers. During the past 14 years of the Living Better Together COPD Conference, RHA has reached thousands of participants. Patients and caregivers from more than 30 pulmonary rehabilitation groups in Illinois and northwest Indiana travel to the event, including sites from several large health systems, including, but not limited to, AMITA Health, Adventist, Advocate Health Care, Cook County Health & Hospital System, and Northwestern Medicine.
In 2004, the Congressional COPD Caucus was formed to improve awareness and care of patients with COPD while supporting the search for a cure. RHA works diligently the COPD patient community to engage Illinois legislators in the Caucus. U.S. Senator Richard Durbin of Illinois became co-chair in 2011. As of 2018, Illinois has seven members, which is the most of any state. Illinois’ Congressional COPD Caucus members are Senator Dick Durbin, and Representatives Danny Davis, Bill Foster, Mike Quigley, Jan Schakowsky, Cheri Bustos, and Dan Lipinski.