FORT LAUDERDALE, FL – Holy Cross Health and the COPD Foundation are pleased to announce the establishment of the Respiratory Navigator and Peer Coach Partnership. Funded by Mr. Herb Yardley, the partnership will launch a pilot program designed for individuals with chronic obstructive pulmonary disease (COPD) and related lung conditions who are hospitalized for exacerbations (flare ups). The program aims to assist patients in the post-acute phase and support their self-management at home.
COPD is a debilitating respiratory condition affecting more than 30 million Americans and 1 million individuals living in Florida. COPD is the 4th leading cause of death in the US and a leading cause of disability. Although COPD is mostly a preventable and manageable chronic condition, low public awareness of the condition and its symptoms often leaves those newly diagnosed unsure how to best manage their care.
Recognizing these challenges, the collaboration between the COPD Foundation and Holy Cross Health has been built to leverage both partners’ resources and strengths. The COPD Foundation focuses on empowering and engaging the COPD community by delivering hope and valuable educational resources to individuals with COPD and their families, so they can take positive steps to lead meaningful and productive lives. The existing Holy Cross Health COPD Navigator program has reduced readmission rates for individuals with COPD by almost 50% by using a dedicated team of health care professional “navigators” who follow each patient through their recovery journey.
Baltimore, MD (December 23, 2020) – The Green Park Collaborative (GPC), a major initiative of the Center for Medical Technology Policy (CMTP), is partnering with The COPD Foundation to develop a core set of outcomes to be used in late phase clinical trials of therapies for stable chronic obstructive pulmonary disease (COPD). This initiative, coreCOPD, will engage patients, clinicians, researchers, regulators, payers, health technology assessors, product developers, and other key stakeholders in a structured consensus process to develop the core outcome set.
COPD is a condition characterized by persistent respiratory symptoms and chronic airflow limitation caused by a mixture of small airways disease and parenchymal destruction. Most widely used and accepted clinical outcomes measures in stable COPD clinical trials fail to provide a comprehensive or fully patient-relevant basis for evaluating and comparing the clinical benefit of new therapies. Researchers cannot adequately address this issue, however, because patients and other stakeholders have not yet agreed on which outcomes are most important for their decision making.
"Even in COPD, where many high-quality outcomes are used, multi-stakeholder engagement can yield valuable insights from varied perspectives on deficiencies in customary outcome selections for COPD clinical trials. This work will accelerate the consistent production of more relevant and meaningful data, benefiting healthcare and policy decision-makers and ultimately, the patients they all serve."
COPD Foundation and Blue Marble Health Announce a Strategic Partnership to Facilitate
Virtual Pulmonary Rehabilitation
Miami, FL and Los Angeles, CA November 2020: The COPD Foundation and Blue Marble Health announced a strategic Partnership to increase availability and adherence to pulmonary rehabilitation (PR) through a unique peer supported Virtual PR Program.
Approximately 320 million people live with chronic obstructive pulmonary disease (COPD) and they are at 5 times greater risk for severe COVID-19 infections. PR is an exercise and education program that improves quality of life for people with COPD, while reducing hospitalization and mortality. Despite its proven effectiveness, PR is underutilized; and now with the temporary closure of 75% of PR clinics in the US due to COVID-19, even fewer people with lung disease have access to PR.
Blue Marble Health Virtual PR Platform enables clinicians to remotely develop, monitor, and track personalized PR programs at the individual and population level. The COPD Foundation’s COPD360coach platform connects patients with peer coaches who provide health coaching designed to deliver educational content and a supportive community. Our combined offering will improve access, adherence, engagement, and outcomes; and people with COPD can enjoy PR from the safety of their home.
In honor of World COPD Day, American Lung Association, COPD Foundation offer support for COPD patients and caregivers amid pandemic
CHICAGO (November 18, 2020) – An estimated 16.4 million Americans are living with chronic obstructive pulmonary disease (COPD) – a chronic lung disease that makes it difficult to breathe – which places them at an increased risk for more severe illness from COVID-19. In honor of World COPD Day, and amid the COVID-19 pandemic, the American Lung Association and the COPD Foundation are sharing guidance and highlighting resources and support available to those living with COPD and their caregivers.
"It’s critical that those living with COPD, as well as their caregivers, do all they can to protect their health and reduce their exposure to the virus," said COPD Foundation Chief Medical Officer Byron Thomashow, M.D. "Changes in behavior, such as wearing a face mask, will be key to all of us staying healthy and out of the hospital, especially for those living with COPD, which is already a high-risk disease for readmissions to the hospital."
Questions about COPD management in the COVID era?
The Centers for Disease Control and Prevention (CDC) has identified those living with COPD among those at greater risk for the most severe complications from COVID-19. To protect their health, the American Lung Association and COPD Foundation encourage patients to work with their doctor to help manage their symptoms, stay on their maintenance medications and alert their healthcare provider of any changes in their health or symptoms. The organizations also encourage those living with COPD to reduce their exposure to the virus by utilizing telehealth when available and recommended by their provider, practicing thorough handwashing and avoiding touching their face, wearing a mask, staying physically distant from others and at home, when possible.
WASHINGTON, DC (November 16, 2020)— To learn more about the experiences of individuals impacted by COPD and the health care professionals supporting them, the COPD Foundation collaborated with the American College of Chest Physicians® (CHEST) to gain valuable information on how those living with or managing COPD perceive exacerbations. Initial results from the survey suggest there are critical gaps in communication between patients with COPD and their health care professionals.
COPD exacerbations adversely impact the health and quality of life of people living with the disease. Frequent exacerbations, and especially those resulting in hospitalizations, lead to greater impairment in daily living, decreased ability to remain in the workplace, and an increased burden on family caregivers. Evidence suggests that those with frequent exacerbations experience worsening lung function, more rapid lung function decline, and are more likely to have longer hospital stays. Readmissions within 30 days of discharge and repeated exacerbations of COPD increase mortality risk in patients with COPD.
"While we as physicians believe we are communicating clearly and well, these data suggest we likely need to explore additional ways to say things in the brief time we have with patients and families. This study provides important insights," said Barbara Yawn, MD, Chief Clinical Officer at the COPD Foundation and Professor of Family Medicine at the University of Minnesota.
Washington, DC – September 30th, 2020: COPD Foundation launches the COPD360 Community Engagement Committee, embracing the patient and caregiver perspective is the single most effective way to achieve the Foundation’s mission
In order to amplify and diversify the patient and caregiver voice in all COPD Foundation efforts, and in concert with the recently launched Digital Health & Therapeutics Accelerator Network (COPD360Net), the COPD Foundation is delighted to announce the launch of the COPD360 Community Engagement Committee. The COPD Foundation is a not-for-profit organization focused on improving the lives of those affected by and stopping the progression of COPD and related lung conditions.
In partnership with the COPD Foundation’s health care and scientific community, the COPD360 Community Engagement Committee pledges to:
- Gather input from the organization’s patient and caregiver community
- Advise COPD Foundation on strategic priorities that are important to patients and their families
- Provide input into all aspects of COPD Foundation patient engagement
- Ensure the safety of patients is always the first priority in all COPD Foundation endeavours
Linda Walsh, Chief Community Engagement Officer said: "The COPD Foundation was patient founded and remains patient driven. The patient has always been at the center of our mission. This Committee fortifies our commitment to people with COPD and ensures their voices are heard."
Washington, DC – September 23rd, 2020: The COPD Foundation, a not-for-profit organization focused on improving the lives of those affected by and stopping the progression of COPD, is delighted to announce the launch of the COPD360Net initiative.
COPD360Net has been created to deliver the following:
- Facilitate, review and expedite clinical trials
- Enable the development and adoption of novel digital health tools and therapeutics that treat COPD
- Prevent progression and improve lives of individuals with COPD and related chronic lung diseases at all stages of disease
The last regulatory approval of a new mechanism of action therapeutic for COPD was in 2011 and patient research has demonstrated the need for new and better treatments. COPD360Net will serve as an accelerator to speed innovation through patient-centered evidence generation and facilitation of clinical adoption.
COPD360Net consists of a network of core COPD Foundation accredited care centers, experts in the field of COPD and related lung diseases and relevant subject matter experts including primary care, health economists and psychosocial experts. It is governed by a Steering Committee that includes clinical lead expert representatives from the participating centers, as well as key content experts and patient and caregiver representation.
Saturday, July 18, 2020 – Late last evening, America lost one of its greatest civil rights leaders, Congressman John Lewis. A tireless advocate for racial and social justice, he stepped forward to serve those who faced many challenges including people with COPD.
Congressman Lewis was a founding co-chair of the Congressional COPD Caucus where he contributed his voice, his passion, and his power to our community’s needs. In November 2019, the Foundation honored his longstanding commitment to our mission with the Edna Shattuck Advocacy Award.
"We are deeply saddened to learn the news of Congressman Lewis’ death," commented Dr. James Crapo, the COPD Foundation’s Chairman of the Board and Interim CEO. "We extend our heartfelt sympathies to his family and loved ones and want them to know he will be sorely missed by our community among so many who benefitted from his leadership."
Appointment Reflects Renewed Focus on Clinical Research and Patient Community Education
Washington, DC – July 7, 2020 - The COPD Foundation announces the appointment of James D. Crapo, MD, to Chairman of the Board of Directors and as its interim Chief Executive Officer.
Dr. Crapo has been closely affiliated with the COPD Foundation since its inception and was asked to join the COPD Foundation’s Board of Directors in 2007. In addition, Dr. Crapo worked closely with Founder John W. Walsh on multiple initiatives. Dr. Crapo has served on the Executive, Medical and Scientific Advisory and Development committees of the COPD Foundation.
He is Professor of Medicine at National Jewish Health Denver, Manager of BioMimetix JV, LLC, and Principal Investigator for the COPDGene clinical epidemiology project, one of the largest studies ever to investigate the underlying genetic factors of chronic obstructive pulmonary disease. From 1992-1993, Dr. Crapo was President of the American Thoracic Society. He also served as President of the Fleischner Society between 2004 and 2005. For six years beginning in 2003, Dr. Crapo served as a member of the Clean Air Scientific Advisory Committee of the U.S. Environmental Protection Agency.
Washington DC - June 3, 2020 - The COPD Foundation team and Board of Directors are deeply troubled by the systemic injustice and discrimination present in our society. We join the country in mourning the unnecessary loss of life and denouncing the racist acts of violence faced by African American communities for decades. Our mission includes improving the lives of those affected by COPD, a mission that requires we understand, acknowledge, and address the unique barriers to achieving good health and well-being faced by communities of color and others adversely impacted by COPD.
We believe every life and every breath is a treasure that we must collectively work to protect. In the U.S. If you are black with COPD, you are more likely to end up in the emergency room and in the hospital, quality of life is worse and progress seen by many groups is absent. We recognize this is just a snapshot of the overall health disparities that exist, and we must commit to addressing them as just one step to fighting racism, violence, and institutional discrimination that has plagued our country for too long.
Now is the time to commit to productive action, and we will do more to listen and learn how our efforts can evolve and contribute to a more just society and more equitable health outcomes and then put these learnings into action throughout our advocacy, education, and research efforts.
WASHINGTON, DC—March 27, 2020 - In this time of great need, many companies are working around the clock to find solutions to the COVID-19 crisis. One of the COPD Foundation’s valued partners, Grifols, has announced the formation of a partnership with several U.S. government agencies to undertake clinical studies to determine if plasma from convalescent COVID-19 patients can lead to a potential treatment for the disease.
This innovative private-public partnership has the ability to expedite the development process and hopefully bring effective treatments to the market in a timely manner. This is just one of several projects Grifols is working on that will help nations around the world address this pandemic.
You can read the official Grifols statement on their partnership by clicking here.
The COPD Foundation is pleased to announce the publication of exciting data about the COPD Assessment Test (CAT) in the American Journal of Respiratory and Critical Care, a scientific journal published by the American Thoracic Society.
The manuscript, entitled "Clinical Development and Research Applications of the COPD Assessment Test (CAT)", was a result of the COPD Biomarker Qualification Consortium’s (CBQC) work. It highlights the importance of the CAT as a clinical outcome assessment tool as beneficial both in clinical practice and in research applications.
“This achievement demonstrates the power of patient-led collaborations in paving the road to improved disease management,” said Ruth Tal-Singer, Scientific Strategy Advisor at the COPD Foundation and former Industry Chair of the CBQC.
The CAT was developed by a multidisciplinary group of international experts in COPD as a short, easy-to-use (paper or digital) tool for patients, researchers and healthcar1e providers to assess symptoms and impact of the disease as described on the CAT website (www.catestonline.org). The CBQC experts believe that the CAT is a well-established, easy-to-use tool for the management of patients with COPD and that it is a useful outcome measure for the assessment of quality of life and disease burden in clinical trials.