Alpha-1 Foundation Activities Contributing to the NIH, NHLBI COPD National Action Plan
Overview
Organization: Alpha-1 Foundation
Start Date: 01/1995
End Date: Ongoing
Primary Goal: Goal 4: Increase and sustain research to better understand the prevention, pathogenesis, diagnosis, treatment, and management of COPD.
Secondary Goal(s):
- Goal 1: Empower people with COPD, their families, and caregivers to recognize and reduce the burden of COPD.
- Goal 2: Improve the prevention, diagnosis, treatment, and management of COPD by improving the quality of care delivered across the health care continuum.
Objective(s):
- Increase public awareness of the risk factors and symptoms of COPD so that earlier diagnosis of symptomatic individuals becomes the norm
- Increase the effectiveness and variety of outreach communication campaigns and activities that utilize evidence-based approaches to raise awareness of COPD, particularly among those at high risk, and help people diagnosed with COPD manage the disease
- Expand opportunities to increase COPD awareness across the public-private spectrum
- Develop a unified, multidisciplinary educational curriculum for health care professionals, including primary health care providers, using harmonized clinical practice guidelines
- Improve access to care for people with COPD, particularly for those in hard-to reach areas
- Help expand, coordinate, and optimize COPD research efforts
- Improve methods for earliest detection and diagnosis and develop effective strategies for preventing the onset and progression of COPD
- Define and characterize the pathogenesis of COPD heterogeneity
- Develop personalized medicine for COPD based on the pathogenesis and clinical heterogeneity
- Promote research that can lead to strategies that help prevent the onset and progression of COPD and improve the quality of COPD care and management
Collaboration: COPD Foundation
Activity Type: Patient education, Provider education, Research, Support group, Policy/advocacy
Activity Description
The Alpha-1 Foundation has been instrumental in advancing the goals of the NIH, NHLBI COPD National Action Plan through targeted activities aimed at improving the diagnosis, treatment, and awareness of Alpha-1 Antitrypsin Deficiency (Alpha-1), a genetic condition that can lead to COPD. Alpha-1 affects both smokers and non-smokers, making testing and early detection crucial for proper disease management.Key Activities Aligned with NIH NHLBI COPD National Action Plan Goals
Goal 1: Build Awareness and Empower Patients, Families, and Caregivers
The Alpha-1 Foundation leads various initiatives to raise public and professional awareness about the connection between Alpha-1 and COPD. Many people with COPD, especially non-smokers, may not be aware that they could have undiagnosed Alpha-1 Antitrypsin Deficiency. The Foundation promotes widespread screening for Alpha-1 in all patients diagnosed with COPD, regardless of smoking history, as studies show that up to 25% of COPD patients have never smoked yet are still affected by the disease.
Public Campaigns:
• World COPD Day: Partnering with organizations like the COPD Foundation to spread awareness about testing COPD patients for Alpha-1.
• Educational Outreach: Offering regional Education Days which are in person and online. The Foundation has online resources, webinars, and toolkits for patients, caregivers, and healthcare providers on the importance of early testing for Alpha-1 in COPD patients.
Goal 2: Improve the Prevention, Diagnosis, Treatment, and Management of COPD
The Alpha-1 Foundation has taken a leadership role in promoting testing for Alpha-1 in COPD patients, as the deficiency can be a major contributor to lung disease even in individuals who have never smoked.
• Screening Recommendations: The Foundation advocates that all individuals diagnosed with COPD undergo testing for Alpha-1 Antitrypsin Deficiency. This early detection allows for personalized treatment plans, including alpha-1 augmentation therapy, which can slow disease progression. Additionally family members can now be notified they may have an underlying genetic condition that can significantly impact their health particularly if they choose to use tobacco, e-cigarettes of other non-tobacco related inhaled products.
• Non-Smoker COPD Patients: Emphasizing the importance of testing in non-smokers with COPD, as Alpha-1 is often underdiagnosed in these populations.
Clinical Programs:
• Pulmonary Rehabilitation: The Foundation supports rehabilitation programs tailored to Alpha-1 patients to manage lung disease more effectively, contributing to better overall management of COPD. The Alpha-1 Foundation has worked closely with a coalition of like minded organizations to pass legislation making virtual home based pulmonary rehab a permanent Medicare benefit.
• Clinical Resource Centers (CRCs): The Foundation has
Audience
General Audience: Patients, Caregivers or family members, Health professionals, Researchers, Policymakers/advocates
Focused Audience: Hispanic/Latino, American Indian or Alaska Native, Asian or Pacific Islander, African American/Black, Caucasian/White, Men, Women
Program Reach: National
Type of Area: Urban, Suburban, Rural
Setting: Community, Health care, Home
Cost and Funding Sources
Impact Analysis
The Alpha-1 Foundation’s activities directly align with the NIH NHLBI COPD National Action Plan’s goals. By promoting awareness, supporting research, advocating for policy changes, and improving access to care for Alpha-1 patients—especially those with COPD who have never smoked—the Foundation is making significant strides toward reducing the burden of COPD on patients and the healthcare system.The Foundation urges the NIH NHLBI to continue supporting initiatives that emphasize the importance of genetic testing for Alpha-1 Antitrypsin Deficiency in COPD patients, as this will lead to better disease outcomes and a clearer understanding of COPD's genetic factors, particularly among non-smokers.
Advice or Lessons Learned
The Alpha-1 Foundation has been instrumental in advancing the goals of the NIH, NHLBI COPD National Action Plan through targeted activities aimed at improving the diagnosis, treatment, and awareness of Alpha-1 Antitrypsin Deficiency (Alpha-1), a genetic condition that can lead to COPD. Alpha-1 affects both smokers and non-smokers, making testing and early detection crucial for proper disease management.Related Links
Contact Information
Alpha-1 Foundation
Senior Director of Communications & Policy
Coral Gables
Florida