Every breath we take is a gift, yet for hundreds of millions across the globe, breathing comes with a challenge – chronic obstructive pulmonary disease (COPD).1,2 Never heard of it? You’re not alone. A recent Ipsos poll* shows that for most people, the disease is a mystery, and despite its dire consequences, COPD remains an often under-recognized and under-prioritized non-communicable disease (NCD).3,4
Chronic obstructive pulmonary disease (COPD) is an increasingly important threat to the public and health systems around the world, yet is often overlooked as a significant public health issue.1,4 As a global patient advocate, I believe it is essential to raise the level of awareness and understanding among patients, caregivers, healthcare professionals, policymakers and the public about the impact of COPD and opportunities to reform patient care and prioritize early diagnosis through policy initiatives. This is my take on why we need to unite the patient advocacy, clinician and policy communities to Speak Up for COPD.
COPD refers to the common and serious lung diseases emphysema and bronchitis that cause airflow blockage and breathing-related problems. It is characterized by persistent respiratory symptoms, including chronic cough, shortness of breath and reduced lung function. The effects on the individual can vary, but it often hinders the ability to carry out everyday tasks and can also cause anxiety and depression. While COPD is a progressive disease, early detection and diagnosis allow for timely intervention and management strategies that can help slow disease progression, prevent avoidable complications and improve quality of life.2
As of 2019, it is estimated that over 391 million patients had COPD worldwide and COPD is the third leading cause of death globally.1,2 Despite this immense impact, there has been no substantial improvement in mortality rates over the past two decades.5,6 In Europe alone, it was responsible for more than 300,000 lives lost in 2019.7 The costs associated with COPD globally are projected to rise to $4.8 trillion by 2030.8 It is clear urgent action is needed.
“The number of deaths due to COPD is extremely high every year. The number of patients with COPD is high at present. COPD causes people to experience symptoms such as difficulty in breathing, which makes their daily life very difficult, and this will decrease their quality of life.”– Policymaker Survey Respondent, South Korea.3
Lack of public awareness and far-reaching consequences
Unfortunately, awareness of COPD among the general public is alarmingly low. A recent Ipsos poll* across 14 countries revealed that a staggering 45 percent could not correctly identify COPD as a lung disease.3
This lack of awareness extends to understanding the risk factors and severity of COPD,3 which likely contributes to perpetuating a cycle of indifference and inertia. While public awareness of the link between smoking and COPD is relatively high, there is a lack of understanding about other risk factors3 and the fact that COPD is the third leading cause of death.2 Misconceptions about COPD and the prevalent assumption that it’s a smoker’s disease exacerbate existing stigma, which can inhibit individuals from seeking timely help for symptoms and contribute to the under-diagnosis and under-recognition of the disease.9
“The reason why this disease does not have as high of a priority as it should is because I believe that it is perceived as less dangerous compared to others.” – Policymaker Survey Respondent, Italy.3
Furthermore, only one-third of the public sees COPD as placing an ‘extremely serious’ burden on their country’s health system.3 In reality, COPD ranks among some of the leading causes of emergency hospital admissions, exerting a significant toll on already fragile health systems.10-12 This burden is likely to increase further due to ageing populations and continued exposure to COPD risk factors such as environmental pollution, poor air quality and climate change.13
“Since it’s not one of the best known illnesses, it’s not attended to with the speed and the efficiency it should, plus it causes other illnesses, so making it a priority would mean making savings for the healthcare system long term. The main barrier is the lack of knowledge about the disease.” – Policymaker Survey Respondent, Spain.3
From awareness to action
However, we have the power to change this by redefining policy. It’s heartening to see that the majority of the public – once informed about the scale of the burden of COPD and its consequences – agrees that more should be done by their government and health systems.3
Sixty-five percent of the surveyed public believe that COPD should be a priority for their health system, while more than 60 percent agree that governments need to do more to prevent unnecessary deaths and hospitalizations from COPD.3
This sentiment is echoed by polled policymakers, with 58 percent believing that COPD should be given a higher priority, especially in the context of the COVID-19 pandemic.3 Surveyed policymakers also recognize the importance of early detection and diagnosis as effective in reducing the burden of COPD.3
At the same time, polling highlights the need to ensure that more policymakers are made aware of evidence-based resources and “expert blueprints” for enhancing COPD care, such as the COPD Patient Charter and Global Quality Standards.14,15 These resources provide frameworks that may help countries establish consistent and effective standards for COPD care to ensure timely and accurate diagnoses, as well as treatment plans aligned with global recommendations. By following these standards, the risk of exacerbations can be reduced, leading to lower COPD-related costs and preventing premature death – but support at the policymaking level is a key component for enacting change.16-21
“The significance of the illness is not fully appreciated by everyone. Prioritisation should be given to COPD patients.” – Policymaker Survey Respondent, United Kingdom.3
Proactive measures underway
Significant progress has already been made in implementing quality standards at national and regional levels to improve COPD care and address disease burden. Notable policy measures promoting a more proactive stance toward COPD can be seen in Belgium, where the parliament passed a COPD-focused resolution in 2022 to initiate research on the impact of air pollution on COPD risk, to review medication reimbursement for COPD patients and to advocate for a smoke-free generation.22
Key examples also include the European Commission’s Healthier Together — EU Non-Communicable Diseases (NCDs) Initiative, which emphasizes the importance of comprehensive care to address comorbidities.23 Yet it’s essential that we, as the patient community, continue to voice our concerns to ensure chronic respiratory diseases like COPD are prioritized within the NCDs outlined by the European Commission to receive proper political attention and funding within national NCD strategies.
This is why the global COPD community is calling for policy prioritization through initiatives such as the Speak Up for COPD campaign, built by a group of advocates, clinicians and industry partners striving to establish COPD awareness and action as a public health priority.
Since its inception in 2021, Speak Up for COPD has grown into a worldwide movement amplifying the voices of those living with COPD. The coalition published a Joint Declaration on World COPD Day 2022, signed by 20 patient advocacy groups, non-profit organizations and healthcare practitioners to call on governments, healthcare systems and policymakers for policy action to address the growing burden of COPD.24 We’re expanding our footprint this year and call for policymakers, such as the voices quoted in the Ipsos poll, to join our movement to make COPD a public health priority.
The time for action is now
These early results serve as a wake-up call, exposing the need for greater awareness of COPD and urgent policy action to implement evidence-based care. We need a coherent, holistic approach to tackle the burden of COPD on healthcare systems and the challenge of early diagnosis, while at the same time addressing the unmet needs of those living with this disease – because people living with COPD need and deserve better.
We invite you to Speak Up for COPD and join our growing movement by sharing this article with the hashtag #SpeakUpforCOPD to spread the message far and wide. Working together, we can raise public awareness and drive policy change to alleviate the burden that COPD places on patients, societies and healthcare systems across the EU and the globe.
*Poll initiated and funded by AstraZeneca. Act on COPD. Common, Preventable, Treatable: Has COPD been underprioritised? (2022) Accessible at: https://qrcgcustomers.s3-eu-west-1.amazonaws.com/account21372441/30986798_2.pdf?0.16088484869497655 [last accessed July 2023]
Speak Up for COPD is supported by a coalition of partners** across industry and the non-profit sector to raise awareness and understanding of COPD amongst policymakers and healthcare decision makers by amplifying the voices of patients, the COPD community and the public. All partners contribute time and expertise to the coalition actitivies. Our one critical goal is to establish COPD as a public health priority.
**Coalition partners: Global Allergy & Airways Patient Platform (GAAPP), International Federation of Ageing (IFA), COPD Foundation, International Coalition of Respiratory Nurses (ICRN), International Pharmaceutical Federation (FIP), with funding from AstraZeneca, Roche, Sanofi and Regeneron.
Veeva ID: Z4-55604
Date of Preparation: July 2023
References
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