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COPD Foundation announces new Bronchiectasis and NTM Care Center Network with support of Founding Sponsor Insmed

February 26, 2024

MIAMI, (February 26, 2024) - Bronchiectasis and NTM 360, a division of the COPD Foundation, has announced the launch of the Bronchiectasis and NTM Care Center Network (CCN), a groundbreaking initiative that will facilitate access to specialized care and support for hundreds of thousands of individuals with bronchiectasis and nontuberculous mycobacterial (NTM) lung disease.

This innovative network will be implemented at 150 medical centers in diverse geographical locations nationwide over the next three years with support from Founding Sponsor Insmed Incorporated, a global biopharmaceutical company on a mission to transform the lives of patients with serious and rare diseases. The aim for the centers is to provide accurate, prompt diagnosis and outstanding standardized medical care, resources, and education.

"Our goals to improve care and quality of life, advance research towards a cure, and build widespread awareness can only be attained through bold vision and support from companies like Insmed," said Jean Wright, M.D., MBA, CEO of the COPD Foundation. "As the prevalence of these diseases and the economic burden grow, early detection and education efforts are more critical than ever. This collaboration, which also includes NTM Info & Research and a steering committee of world-renowned experts and patient representation, will transform the landscape of care for individuals with bronchiectasis and NTM lung disease, providing them with the care and resources they need to thrive."

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Medical and Scientific Advisory Committee of the COPD Foundation Releases Statement in The Lancet Respiratory Medicine

January 10, 2024

COPD is a major public health problem that remains largely neglected

MIAMI & NEW YORK, (January 10, 2024) - The Lancet Respiratory Medicine, a peer-reviewed medical journal, has published a statement by the Medical and Scientific Advisory Committee of the COPD Foundation, shedding light on the state of chronic obstructive pulmonary disease (COPD) and advocating for action to address the burden of this often-overlooked public health crisis.

The statement emphasizes the oversight of COPD on an unprecedented scale, with patients, health care providers, payers, and funders largely neglecting the issue. According to the report, COPD is the third leading cause of death, with over 3 million deaths worldwide in 2019. In the United States alone, approximately 27 million adults are estimated to have airflow obstruction, with 19.5 million remaining undiagnosed.

"COPD has long been in the shadows," said Surya P Bhatt, M.D., professor at the University of Alabama at Birmingham, Birmingham and one of the authors of the statement. "Our hope is that this statement serves as a catalyst for change, urging health care communities, policy makers, and the public to address the challenges of COPD. Through increased research, awareness, and strategic policy initiatives, we can significantly improve the lives of those affected by COPD and reduce the burden of the disease."

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Dr. Pamela J. McShane Elected as Chair of the Bronchiectasis and NTM Research Registry Consortium

December 12, 2023

MIAMI & NEW YORK, (Dec. 12, 2023) - The COPD Foundation, a not-for-profit organization focused on improving the lives of those affected by COPD, bronchiectasis, and nontuberculous mycobacterial (NTM) lung disease, recently announced that Dr. Pamela J. McShane was elected as chair of the Bronchiectasis and NTM Research Registry Consortium.

"I am honored to have been elected as Chair of the U.S. Bronchiectasis and NTM Research Registry Consortium," said Dr. Pamela J. McShane. "I am incredibly enthusiastic about the opportunities that lie ahead. Together with our dedicated team, I look forward to furthering the mission of the Registry, working to improve healthcare outcomes in bronchiectasis, and making a lasting impact on our patients' lives."

Dr. Pamela J. McShane is a Professor of Medicine at UT Tyler School of Medicine and an accomplished physician, specializing in pulmonology, critical care medicine, and infectious lung diseases. She holds dual board certifications in pulmonary disease and critical care medicine from the American Board of Internal Medicine and is a distinguished member of medical societies such as the American College of Chest Physicians, American Thoracic Society, and the European Respiratory Society.

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Effective Medication Management is Key to Positive COPD Patient Outcomes

December 08, 2023

The COPD Foundation recommends organizing medication, making lists, and seeking health care guidance after flare-ups.

MIAMI & NEW YORK, (Dec. 8, 2023) - Individuals with chronic obstructive pulmonary disease (COPD) experience symptom flare-ups known as exacerbations, which cause breathing difficulties and potential hospitalization. Medication adjustments during these episodes can complicate treatment. To manage changing medication routines effectively, COPD patients are advised by experts to employ organizational strategies, such as maintaining medication lists, using calendars, and collaborating with a trusted primary care provider for a treatment plan.

Kristen Szymonik, BS, RRT, AE-C, the COPD Foundation's Assistant Director of Education, outlines the importance of structured approaches when managing medication routine changes following a COPD flare-up.

  • Create a detailed medication list. Patients should compile a comprehensive list of medications, including dosages and specific instructions like amount and frequency.
  • Use automated tools to manage treatment reminders. Online calendars and applications with electronic reminders can help patients structure and track medication schedules. The COPD Foundation provides a free mobile application that allows patients to log daily symptoms and set goals, sends medication reminders, hosts exercise and other self-care tutorial videos, and guides patients through visits with their health care provider.
  • Seek guidance from health care providers regarding the correct use of new medications. The order in which medications are taken can be crucial to their effectiveness. Managing COPD well involves understanding the complexities of inhaler usage, adherence to schedules, and correct medication intake. Szymonik encourages patients to contact their treatment team for assistance with any medication changes or additions.

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Productive Conversations Between Primary Care Providers and Patients Pave the Way for Long-Term Lung Health

November 30, 2023

MIAMI & NEW YORK, (Nov. 30, 2023) - When it comes to diagnosing, managing, and treating chronic obstructive pulmonary disease (COPD), primary care is crucial. The COPD Foundation recommends early detection, open communication with a primary care provider, and adherence to treatment plans to fight this progressive lung disease.

COPD is a health crisis that affects more than an estimated 250 million people and is the third leading cause of death worldwide. It encompasses conditions like chronic bronchitis and emphysema. Risk factors for the disease include smoking tobacco, genetics, air pollution, occupational exposures, and early life factors like frequent lung infections. Despite its prevalence, few know the signs and symptoms of COPD early in their lung health journey. The COPD Foundation outlines the following steps to empower COPD patients and initiate long-term lung health.

  • Recognize the symptoms.
    • Early warning signs of COPD such as shortness of breath and chronic cough are often mistaken for symptoms of flu or allergies. However, if symptoms persist over time, it is best to start a conversation with a primary care provider. The COPD Foundation also provides a free COPD risk screener.
  • Discuss it with a primary care provider.
    • If there is a suspicion of COPD symptoms, the COPD Foundation recommends discussing concerns with a primary care provider early and often. The conversation should include medical history, lifestyle, and other environmental risk factors. An open conversation can lead to early diagnosis and more effective treatment.
  • Follow a treatment plan.
    • Primary care providers can build a tailored treatment plan for patients that may include medication, pulmonary rehab, lifestyle changes, or oxygen therapy. A recommended treatment plan helps patients manage the disease and live well despite the disease burden. Following a treatment plan also helps primary care providers monitor their patients for any change in disease status.

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International Lung Health Conference to Illuminate Advances in COPD Care and Feature a Patient Education Session

November 10, 2023

The eighth annual GOLD International COPD Conference kicks off Monday, Nov. 13

MIAMI & NEW YORK, (Nov. 10, 2023) – The COPD Foundation is proud to partner with the Global Initiative for Lung Health (GOLD) and Temple Lung Center (TLC) to present a chronic obstructive pulmonary disease (COPD) patient session at the eighth annual GOLD International Lung Health Conference on Monday, Nov. 13, 2023 in Philadelphia. The free session is the first for the GOLD Lung Health Conference and will provide medication management tips, exacerbation prevention information, pulmonary rehab resources, and oxygen therapy tips to patients and caregivers. It will be offered in-person and virtually.

The patient session is part of a two-day international educational symposium from November 13-14 that will provide the latest in COPD care and management.

COPD affects more than 30 million Americans and is the third leading cause of death worldwide. Symptoms include breathlessness, fatigue, and chronic cough. The chronic lung disease comprises several conditions, including chronic bronchitis and emphysema, and can be caused by smoking, genetics, early life factors like frequent lung infections, and environmental irritants like smoke or pollution.

This year’s conference will cover the newest developments and breakthroughs in COPD treatment, symptom management, and research while providing health care providers and patients an opportunity to learn from and network with global COPD experts.

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New research supports early screening and intervention for even mild lung disease symptoms to help prevent physical inactivity

November 03, 2023

The COPD Foundation encourages exercise for those with chronic lung disease as part of COPD Awareness Month in November

MIAMI & NEW YORK (Nov. 3, 2023) - New research from Chronic Obstructive Pulmonary Diseases: Journal of the COPD Foundation reports that individuals with COPD who experience high levels of symptoms are less likely to be physically active. Exercise is proven to be one of the most effective ways to reduce the long-term impact of this widespread chronic lung disease. The study underlines the importance of COPD screening and early diagnosis for symptom intervention and disease management.

COPD affects more than 30 million Americans and is the third leading cause of death worldwide, yet awareness of the disease's symptoms, methods to reduce risk, and disease management remains poor. COPD symptoms include breathlessness, fatigue, and chronic cough. According to research, regular physical activity can help COPD patients breathe better, feel better, and live longer, more fulfilling lives. COPD patients who are inactive increase their risk of exacerbations, hospital admissions, reduced lung function, and poor quality of life.

A recent study published in Chronic Obstructive Pulmonary Diseases: Journal of the COPD Foundation expanded upon prior research related to exercise and COPD by investigating how a diverse group of Canadians' symptom burdens influenced their physical activity levels. The study found that individuals engaged in less physical activity when they reported a high symptom burden compared to those with milder symptoms. This was true for individuals diagnosed with just “mild” COPD and those previously undiagnosed but experiencing symptoms.

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The COPD Foundation Launches COPD Awareness Month in November

November 01, 2023

Patients, Clinicians, and Supporters Join Forces to Champion Lung Health Research, Education, and Advocacy

MIAMI & NEW YORK, (Oct. 31, 2023) - November is COPD Awareness Month. Chronic obstructive pulmonary disease (COPD), which affects more than 30 million Americans, is a serious chronic lung disease characterized by shortness of breath. During the month of November, the COPD Foundation invites people to participate in a variety of awareness events to bring attention to the patient community and support critical research, education, and advocacy efforts.

COPD comprises several conditions, including chronic bronchitis and emphysema, and can be caused by genetics, irritants like smoke or pollution, or early life events like lung infections.

Although the disease is the third leading cause of death worldwide, there is little awareness of the disease's symptoms, risk factors, and disease management techniques. Increased public awareness of COPD and its symptoms during the month of November helps drive funding for critical research and treatments, encourages early diagnosis, and raises awareness of educational and support resources.

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COPD Foundation holds exercise challenge to support COPD Awareness Month in November

October 27, 2023

Lace Up for Lungs campaign challenges participants to exercise for 30 minutes a day to raise awareness and funds for COPD research

MIAMI & NEW YORK, (Oct. 27, 2023) - This November, the COPD Foundation will kick off COPD Awareness Month with its Lace Up for Lungs campaign, a 30-day exercise and fundraising challenge to raise awareness and funds for chronic obstructive pulmonary disease (COPD), bronchiectasis, and nontuberculous mycobacterial (NTM) lung disease. The media challenge encourages people of any age or ability level to get active for 30 minutes a day each day in November.

COPD comprises several conditions, including chronic bronchitis and emphysema, and can be caused by genetics and irritants like smoke or pollution. The disease affects more than 30 million Americans and is the third leading cause of death worldwide, yet awareness of the disease's symptoms, methods to reduce risk, and disease management remains poor. Symptoms include breathlessness, fatigue, and chronic cough.

According to research, regular physical activity can help COPD patients breathe better, feel better, and live longer, more fulfilling lives.

"Despite its prevalence, COPD is underfunded and misunderstood," said Jean Wright, M.D., MBA, CEO of the COPD Foundation. "COPD Awareness Month gives us a chance to shine a spotlight on chronic lung disease, share symptoms and signs, reduce stigma, promote early diagnosis, and support patients and their families. Lace Up for Lungs is the perfect opportunity to promote regular exercise and encourage people to get moving, which can improve symptoms and quality of life for those living with the disease."

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Research shows that COPD stigma hinders treatment and harms mental health for patients, and also leads to reduced funding

October 18, 2023

COPD Awareness Month is celebrated in November

Miami, Fla. (Oct. 18, 2023) --- COPD (chronic obstructive pulmonary disorder) is a chronic, progressive lung disease that affects more than 30 million people in the United States. Shockingly, over 15 million of them remain undiagnosed. COPD comprises several conditions, including chronic bronchitis and emphysema, and can be caused by genetics and irritants like smoke or pollution. In the United States cigarette smoking remains the most common cause but data suggests that 25-40% of COPD occurs in never smokers.

Stigma and the perception that the disease is self-inflicted profoundly impact social support, mental health, self-esteem, and likelihood of pursuing diagnosis and treatment. Because of public and professional bias, COPD patients are also more likely to experience inappropriate or insufficient care from medical staff, endure uncomfortable patient-doctor interactions, and be refused emergency care and access to oxygen therapy1.

COPD has five main causes:

  1. Smoking, secondhand smoke
  2. Early life-events like premature birth
  3. Occupational and environmental causes such as long-term exposure to air pollutants
  4. Genetics (alpha-1 antitrypsin deficiency)
  5. Recurrent lung infections, particularly during childhood

This classification of COPD into origin types helps researchers, medical professionals, and the public re-examine assumptions about COPD patients and increases the likelihood that critical research and new treatment options will receive funding and support.

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THE COPD FOUNDATION AND KIVO HEALTH PARTNER TO MAKE PULMONARY REHAB MORE ACCESSIBLE

August 24, 2023

(MIAMI, NEW YORK, AND SAN FRANCISCO, August 24, 2023) – The COPD Foundation and Kivo Health, which provides groundbreaking telehealth pulmonary rehabilitation for individuals with chronic obstructive pulmonary disease (COPD), have formed a collaborative alliance to improve access to virtual pulmonary rehabilitation.

While pulmonary rehabilitation is a “gold standard” treatment for lung disease and has been shown to reduce symptoms, mortality, and healthcare costs for those suffering from COPD, only 3% of affected people complete it after hospitalization due to transportation barriers, cost of travel, distance from a rehab center, or severe symptoms. Virtual pulmonary rehab can remove many barriers to access. Completing pulmonary rehab from the comfort of home can also help alleviate some of the anxiety that comes with starting a new treatment program.

Kivo Health's eight week, Medicare-supported, virtual pulmonary rehab program provides patients with an in-home rehab kit including tablet and wristwatch, real-time oxygen and heart rate monitoring, guided breathing exercises, and lung health education with a credentialed respiratory therapist. Patients need not have access to the internet or be technologically savvy - everything is included in the kit and easy to understand and thus has resulted in nearly 90% adherence.

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LEADING CHRONIC LUNG ORGANIZATIONS CELEBRATING WORLD NTM AWARENESS DAY

August 05, 2023

Online events to run through August

(NEW YORK AND MIAMI, August 4, 2023) - On August 4, 2023, leading lung health organizations around the world celebrated World NTM Awareness Day. This day of recognition aims to increase global awareness of nontuberculous mycobacteria (NTM) lung disease by bringing together patient advocates, lung health partner organizations, and leading NTM experts to spread awareness and education.

Bronchiectasis and NTM 360, a division of the COPD Foundation, aims at addressing the unmet needs of the bronchiectasis and NTM communities by providing programs to advance awareness, increase education, accelerate research, and improve long-term patient care. World NTM Awareness Day was established by NTM Info and Research (NTMir) to increase access to patient resources, education, and early detection.

Nontuberculous mycobacteria (NTM) are difficult-to-remove environmental organisms found in soil, dust, moist places like plumbing, and any type of water source. NTM can affect anyone's lungs, but those with suppressed immune systems or other pulmonary problems are particularly vulnerable. In the United States, the prevalence of NTM is growing at an alarming rate.

In honor of World NTM Awareness Day, several free webinars with lung health experts will be offered that will empower people living with NTM to lead happier, healthier lives. There will be an open question and answer session for attendees after each presentation. Online webinars include:

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