Partners to help identify "missing millions" with undiagnosed COPD, and increase access to pulmonary rehabilitation
CHICAGO & MIAMI, April 25, 2023 - VillageMD and the COPD Foundation today announced a partnership to better identify and treat chronic obstructive pulmonary disease (COPD) at Village Medical practices.
In the United States, there are 15 million American adults, the “missing millions,” with undiagnosed COPD, according to the National Heart, Lung, and Blood Institute. The partners aim to raise awareness through education and outreach campaigns to patients, help identify those with undiagnosed COPD and increase access to pulmonary rehabilitation.
"Patients who are living with COPD struggle with ongoing discomfort, breathlessness, and chronic coughs - and we have ways to help improve their quality of life," said Clive Fields, M.D., co-founder of VillageMD. "Through this partnership with the COPD Foundation, we will help our patients and at-risk populations manage or even prevent COPD through trusting patient-provider relationships, comprehensive care teams, and expanded access to rehabilitation resources."
"The best place to address COPD is in primary care, and Village Medical is a respected provider of quality primary care" said Byron Thomashow, M.D., co-founder and chief medical officer at the COPD Foundation. "VillageMD will help the Foundation identify people with undiagnosed COPD and connect them to therapies to help them breathe better and live healthier lives. We look forward to collaborating with Village Medical's physicians and advanced practice providers to engage our community as we work together to identify the missing millions."
COPD is almost always preventable and treatable. The challenge is that many people with COPD don't know they have it.
PBRNs in collaboration with academic physician-scientists and the COPD Foundation (COPDF) are studying how primary care clinics can identify and treat more people with chronic obstructive pulmonary disease (COPD)
The NIH-supported CAPTURE screening tool to help primary care clinics identify adults with undiagnosed chronic obstructive pulmonary disease (COPD) shows promise, according to research published in JAMA.
The COPD Assessment in Primary Care to Identify Undiagnosed Respiratory Disease & Exacerbation Risk (CAPTURE), which is supported by the National Heart, Lung, and Blood Institute (NHLBI), was developed to identify adults with COPD symptoms severe enough to treat, but who may miss a diagnosis. COPD affects more than 15 million Americans, about 1 in 12 adults. However, about half of people living with COPD are undiagnosed.
The clinical trial was designed by physician researchers, funded by NHLBI, implemented in seven primary care based Practice Based Research Networks (PBRNs) and supported by staff of the COPDF. The CAPTURE clinical trial enrolled 4,325 adults, ages 45-80, none of whom had a prior COPD diagnosis between Oct. 12, 2018 and April 1, 2022. Overall, 110 participants, 2.5% of the study sample were found to have undiagnosed moderate to severe COPD. CAPTURE identified 53, or 48%, of these cases. The screening criteria provided positive screens for 479 participants, 11%, without COPD.
“The goal with trying to find COPD is to treat it earlier, which will help make patients feel better and hopefully prevent their disease from progressing,” said Fernando J. Martinez, M.D., a principal investigator of the study and chief of the Division of Pulmonary and Critical Care Medicine at Weill Cornell Medicine, New York City. “The primary care PBRNs were an excellent place for this study using a real-world population in this clinical trial” reported co-investigator Barbara Yawn, MD of the University of Minnesota Department of Family and Community Health and the COPDF.
ENA Respiratory and COPD Foundation survey confirms patients are overwhelmingly positive about taking an immune-modulating nasal spray to reduce lung disease exacerbations
Survey was conducted through COPD360Net®, an innovative COPD Foundation program that identifies unmet patient needs and integrates the patient voice into therapy development
Miami, Fla., and Melbourne, Australia, 30 January 2023 - A survey conducted collaboratively by the COPD Foundation, a not-for-profit organization established to improve the lives of people with COPD, bronchiectasis, and nontuberculous mycobacterial (NTM) lung disease, and ENA Respiratory, a clinical-stage pharmaceutical company developing INNA-051, a first-in-class broad-spectrum antiviral innate immunomodulator for the prophylaxis of respiratory viral infections for populations at risk of complications, found patients were overwhelmingly positive about the prospect of taking an antiviral nasal spray throughout the winter season or when at risk for exposure to a respiratory virus to prevent COPD flare-ups. The survey results were published in the January issue of the Journal of Patient Experience.
The survey was conducted through the COPD Foundation's COPD360Net® initiative, which facilitates connections between patients with chronic lung diseases, researchers, and other stakeholders to identify unmet patient needs and accelerate new therapy options. The vast majority (>80%) of the 376 patients surveyed expressed interest in a potential new seasonal anti-viral nasal spray, taken either twice weekly during the winter months or for two weeks after exposure to someone with a respiratory illness. Over half (56-58%) of patients with frequent COPD exacerbations were very interested.
Nearly all patients surveyed say they are vaccinated (>92%) for the flu, pneumonia, and COVID-19 and that they have previously taken antiviral medication during cold and flu season. Even so, more than a third (35%) report that viral illnesses have sometimes resulted in hospitalization and nearly half (45%) have needed antibiotics or steroids to treat complications of a viral illness. About 1 in 8 (12%) say they have been treated in an intensive care unit due to complications of a respiratory illness.
Dr. Ruth Tal-Singer, PhD, will continue leading research and education at the Foundation as President, 360Net
Miami, Dec. 5, 2022 - The COPD Foundation announced today that Jean Wright, MD, MBA, has been appointed Chief Executive Officer of the Foundation. Dr. Wright succeeds Ruth Tal-Singer, PhD, and assumed leadership duties on Dec. 1, 2022. Dr. Tal-Singer will continue leading innovative research, education, and scientific projects she brought to the Foundation in her new role as President, 360Net.
According to James Crapo, MD, COPD Foundation Board Chairman, the board unanimously chose Dr. Wright as the Foundation’s next CEO. “Jean’s outstanding business acumen, leadership, and transformative approaches to health care delivery, coupled with her love for the Foundation, set her up for success and provide us with a tenured leader eager and ready to continue the legacy and great work of the Foundation,” Dr. Crapo said.
Dr. Wright is a long-time health care industry executive and advocate for improving the health and delivery of care for millions of Americans. She is experienced in using predictive analytics and artificial intelligence to reach people with chronic diseases. She has served the COPD Foundation for the past eight years and has been a member of the Board of Directors for the past four years, including serving as the Board’s Vice Chair, Chair of the Governance Committee, and Chair of the Finance Committee.
“We also want to express our gratitude to Ruth for her leadership at the Foundation in establishing us as the foremost COPD, bronchiectasis, and NTM lung disease research-enabled patient advocacy Foundation in the U.S.,” said Dr. Crapo. “Ruth came to the Foundation after a successful career in the pharmaceutical industry and led us through the difficult COVID-19 pandemic, supported our patient communities, and increased the depth and breadth of patient-centered research, education, medical, and operational expertise at the Foundation.”
“She also built COPD360Net, our therapeutics, device, and digital health accelerator, while amplifying the voice of patients at the Foundation with the development of the Community Engagement Committee (CEnCO) and the launch of Patient-Inspired Validation of Outcome Tools (PIVOT). We are pleased that Ruth will continue her work at the Foundation as leader of the Foundation’s research, education, and medical initiatives,” he added.
New Communications Brief in the journal Thorax reports survey findings that address tobacco company ownership in the making or selling of inhaler devices
MIAMI, FL - Seventy percent (70%) of respondents to an international survey conducted earlier this year said they are either “bothered” or "really bothered" when tobacco companies make money from an inhaler, medication, or other devices that treat their lung conditions. The findings are available in a newly published communications brief, "Tobacco industry ownership of pharmaceutical companies: an international survey of people with respiratory disease," in the Journal Thorax, the official journal of the British Thoracic Society.
The survey gave people with chronic lung disease a voice in the conversation about tobacco corporations owning companies that develop tools and medications to treat lung conditions. A total of 1,196 people who reported inhaler use completed the survey in early 2022. Based on the survey's findings, as reported in Thorax, most patients care deeply that tobacco companies have a financial stake in drug or device companies and profit from life-saving treatment.
The COPD Foundation partnered with Global Allergy and Airways Patient Platform (GAAPP) and Lung Foundation Australia to conduct the survey among people with chronic lung diseases in English, Spanish, and German between January and March of 2022. All responses remained confidential; no personally identifiable information was collected. Among the respondents, most (68%) were from North America, although broader global regions were represented. Also, most respondents were former smokers (73%), with 11% reporting current smoking and 15% reporting they never smoked.
MIAMI, FL, May 13, 2022 — The COPD Foundation is pleased to announce the promotion of Ruth Tal-Singer, Ph.D., to President & Chief Executive Officer of the Foundation.
"The board eagerly endorses Ruth's career progression to CEO in recognition of the vital role she's played in transforming the Foundation into a collaborative patient-centered research, education, global community outreach advocacy organization focused on delivering the Founders' vision on prevention and early diagnosis and treatment of chronic lung disease," said James Crapo, MD, COPD Foundation Board Chair.
Tal-Singer joined the Foundation as a consultant in the role of Chief Scientific Strategy Officer in 2019 and assumed the role of President & Chief Scientific Officer in 2020. Tal-Singer is an internationally recognized expert and leader in respiratory research and the development of therapeutics.
"During Ruth's time as the Foundation's President and Chief Scientific Officer, she designed and deployed COPD360Net®, a digital health and therapeutics accelerator network to advance and implement new treatments. She also brought strategic partners to the Foundation for novel research initiatives and championed patient-centric research during the COVID-19 pandemic to understand the needs of the patient, caregiver, and health care professional in supporting people with COPD and other lung diseases," added Byron Thomashow, MD, COPD Foundation Chief Medical Director.
PIVOT Focuses on the Evolution of Therapeutics Development and Evaluation with a Focus on Treatment Benefit for Patients with Chronic Lung Disease
May 12, 2022 - The COPD Foundation this week unveiled PIVOT, Patient Inspired Validation of Outcome Tools, a patient-centric framework that will support the coordination of activities for developing, validating, and qualifying biomarkers and clinical outcome assessments that evaluate the benefit of treatment approaches in COPD, bronchiectasis, and NTM lung disease.
"The program is an intentional 'pivot' to the future for patients, the Foundation, and academic and industry research partners. PIVOT will establish a conceptual framework that shifts the approach to how lung disease treatments are developed and evaluated," explained Ruth Tal-Singer, PhD, President & CEO of the COPD Foundation.
"While significant strides have been made to improve care for those with COPD, the last regulatory approval of a medicine with a new mechanism of action in COPD was in 2011," she said. "In recent years, we've learned a lot through the regulatory process, patient input, and the successes and learnings from the COPD Biomarker Qualification Consortium (CBQC), which has significantly informed our shift in strategy."
Alan Hamilton, PhD, Senior Director of Research and PIVOT program lead, with extensive clinical, scientific, and operational experience in this field of study, explained that PIVOT is the next evolutionary step toward defining and acting on treatment benefits for patients with chronic lung diseases.
The COPD Foundation is deeply concerned about the humanitarian crisis in Ukraine and surrounding countries and the impact that the ravage of war is having today on millions, including those with lung health issues and other health complications.
While the fear and devastation to the Ukrainian people and their way of life are simply unimaginable, we want to call attention to another devastation that war causes.
As we learned in the aftermath of 9-11, burning buildings, debris, smoke inhalation, and their effects jeopardize lung health. The World Health Organization has also noted the risk of emergence and spread of infectious diseases, which may include COVID-19. Those with lung disease or respiratory symptoms living in Ukraine or the region today are vulnerable and could become the lung health compromised of tomorrow.
The short- and long-term effects of this war on lung health cannot be understated.
We call on global organizations, including the United Nations, the World Health Organization, humanitarian organizations, and all members of the international community, to help protect all victims of this conflict and support the efforts of local organizations such as the European Lung Foundation.
Ruth Tal-Singer, PhD, President & Chief Scientific Officer, COPD Foundation
INNA-051 is being developed to stimulate innate immunity and reduce the incidence and severity of respiratory viral infections, such as COVID-19, rhinovirus, or influenza in populations at-risk of complications that include individuals with COPD.
Sydney, Australia, and Miami, Florida. - 23 February 2022 - ENA Respiratory, a clinical-stage pharmaceutical company developing INNA-051, a first-in-class broad-spectrum antiviral innate immunomodulator for pre- and post-exposure prophylaxis of respiratory viral infections, including COVID-19 in populations at-risk of complications, and 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, announced a partnership to develop INNA-051 in people with chronic lung diseases.
In a Phase 1 study, INNA-051 was found to be well-tolerated, and the company expects to release additional data this year. Phase 2 studies to confirm the pan-antiviral potential of INNA-051 are expected to begin soon and include a randomised COVID-19 post-exposure antiviral prophylaxis study and an influenza challenge pre-exposure prophylaxis study.
Respiratory virus infections, especially rhinovirus (the common cold), respiratory syncytial virus (RSV), and influenza, are related to worsening of chronic lung conditions, including chronic obstructive pulmonary disease (COPD) and asthma. Detection of a viral pathogen has been associated with poor outcomes, including worsening symptoms, hospitalization, and a high likelihood of hospital readmission. There is a clear unmet medical need for an intervention that can significantly reduce the incidence of respiratory virus associated with acute exacerbations. With activity independent of the specific viral pathogen and a targeted safety profile compatible with seasonal use, INNA-051 has a profile intended to address this need.
MIAMI, Feb. 8, 2022 - The COPD Foundation, a not-for-profit organization focused on improving the lives of those affected by COPD, bronchiectasis, and NTM lung disease, today announced that Valerie Chang, JD, Risa Stack, PhD, and Mark T. Dransfield, MD, have been elected to the Foundation's board of directors.
"We are delighted to welcome three dynamic new leaders to the Foundation board," said James Crapo, MD, COPD Foundation board president. "Valerie, Risa, and Mark strengthen our board through their expertise and diverse perspectives in lung health, patient advocacy, business development, and medicine. With their addition to our dedicated leadership team, we are better poised to innovate and improve the lives of patients and caregivers across the country," added Dr. Crapo.
Valerie Chang, JD, is the executive director and founder of the Hawaii COPD Coalition and vice-chair of the US COPD Coalition. Ms. Chang has 20 years of active involvement in the COPD community, including participation in the COPD Foundation Patient-Powered Research Network (PPRN), the Coalition for Tobacco-Free Hawaii, and advocating on behalf of COPD and lung health issues. She also partnered with pharmaceutical companies, the American Thoracic Society (ATS), and the American Association of Respiratory Care (AARC) as a patient advocate. Prior to her work in the COPD community, Ms. Chang served as a part-time district court judge in Hawaii.
Leading patient advocacy organizations and professional societies combine efforts to raise awareness of bronchiectasis and its increased prevalence worldwide
United States/Europe/Australia/Asia -- Today, global lung health organizations join together to announce the declaration of World Bronchiectasis Day on July 1, 2022, to raise awareness of bronchiectasis and its increased prevalence in many countries.
Bronchiectasis is a lung disease that affects hundreds of thousands of people worldwide. It is characterized by enlarged or scarred airways that cannot clear mucus properly, resulting in recurring lung infections. Bronchiectasis creates a significant burden on patients and their families. It can lead to accelerated lung function loss resulting in long-term disability and premature death. The disease can occur at any age, though most people are diagnosed later in life. Although there is currently no cure, detecting and treating bronchiectasis early can improve quality of life and may impact the longevity of those affected. While bronchiectasis is often referred to as a rare disease, prevalence is increasing globally.
"By supporting World Bronchiectasis Day, global partners are committed to addressing the critical unmet needs of the bronchiectasis lung disease community," said Ruth Tal-Singer, PhD, COPD Foundation President & Chief Scientific Officer.
World Bronchiectasis Day is being organized by an international planning committee co-chaired by Tim Aksamit, MD, Medical Director, Bronchiectasis and NTM 360 at the COPD Foundation, and Professor James Chalmers, EMBARC Chair and British Lung Foundation Chair of Respiratory Research, University of Dundee. Representatives from global patient advocacy organizations and professional societies serve on the organizing committee.
The first global organizations to join World Bronchiectasis Day include:
"Bronchiectasis has been a neglected disease, and the lack of awareness causes difficulties and distress to many patients," said Professor James Chalmers. "We have made great advances in the past 10 years, but there is a lot more to do in research and in raising awareness of the condition. We are supporting World Bronchiectasis Day as part of our ongoing commitment with global partners to tackle this neglected disease."
Lynn Schnapp, MD, president of the American Thoracic Society, added: "Currently, in about 40 percent of cases, the cause of bronchiectasis is unknown. That is 40 percent too many. Our patients deserve better. By partnering with other global societies, it is our intention to amplify awareness around this disease to improve the lives of patients worldwide."
"We are motivated to work with other leading global lung health organizations as part of World Bronchiectasis Day to increase awareness about bronchiectasis worldwide," said associate professor Lucy Morgan, Board Chair, Lung Foundation Australia, and chair of the Australian Bronchiectasis Registry. "We're also committed to further understanding the impact of bronchiectasis on adults and children in Australia while striving to improve their quality of life and equitable access to evidence-based therapies," she added.
Watch these first-hand stories of people and families living with bronchiectasis. Visit the European Lung Foundation.
To learn more about bronchiectasis, events leading up to and on July 1, a list of collaborating organizations, and information about supporting the annual World Bronchiectasis Day, visit worldbronchiectasisday.org.
About World Bronchiectasis Day
World Bronchiectasis Day, July 1, 2022, aims to raise global awareness of bronchiectasis and help those with the disease and others yet to be diagnosed through education, advocacy, and a global conversation focused on reducing the burden of bronchiectasis for patients and their families worldwide. Learn more by visiting worldbronchiectasisday.org.
Miami, Fl., Jan. 5, 2022 – The COPD Foundation, a patient advocacy and research organization, and Wellinks, a digital health care company offering the first-ever integrated, virtual chronic obstructive pulmonary disease (COPD) management solution, today announced a partnership to recruit eligible patients for a new research study through the Foundation’s COPD Patient-Powered Research Network (COPD PPRN).
Researchers plan to enroll between 100 and 150 adults with COPD for a 24-week prospective research study of the Wellinks solution. Wellinks combines virtual pulmonary rehabilitation, personalized health coaching, and monitoring through connected devices using a patient-friendly app.
The study aims to determine whether Wellinks can improve outcomes for patients with COPD by measuring the impact on health-related quality of life, health care resource utilization, and participant satisfaction. Impact will be assessed alongside additional measures such as pulmonary function and symptoms. The study is also designed to assess the engagement and utilization patterns of participants over time and in relation to adjustments in the program.
"We are passionate about ensuring that people with COPD have access to the best treatment options available," said Ruth Tal-Singer, PhD, President and Chief Scientific Officer of the COPD Foundation. "We are excited to use our COPD PPRN to recruit individuals to assess this novel COPD management program. Especially after COVID-19, the Wellinks platform could be impactful in helping patients manage their health, and we look forward to learning more through this study."
COPD is the third leading cause of death globally and one of the costliest chronic conditions in the U.S., with an estimated $49 billion spent annually.