The Speak Up for COPD campaign was created by a coalition of advocates, clinicians and industry partners striving to bring urgent attention to the human, societal and economic impact of chronic obstructive pulmonary disease (COPD). Today, we issue a joint declaration to urge policymakers and healthcare leaders to address the tremendous burden of COPD in Europe and across the world.
Results from an Ipsos MORI survey, which was funded by AstraZeneca, show COPD remains largely unknown by the general public and policymakers globally. Only 37 of policymakers know at least “a fair amount” about COPD, while nearly half (45) of the general public do not know that COPD is a lung condition.
A lack of understanding[i], stigma associated with tobacco dependency[ii], and a perceived lack of severity[iii], have contributed to global misconception surrounding COPD management, including the under-recognition and under-diagnosis of the condition. Despite affecting 384 million people worldwide[iv], and more than 36 million people[v] in Europe alone, COPD is under-prioritied, underfunded and undertreated in comparison to other noncommunicable diseases with similar risks[vi],[vii],[viii],[ix]. The sheer financial costs associated with COPD are predicted to rise to almost $4.8 trillion in 2030.[x]
COPD should not be prioritied over other illnesses, but we firmly assert that the disease and subsequent impact to a person’s livelihood and their contribution should receive the political attention proportionate to its clinical, societal and economic burden. As health systems recover from the COVID-19 pandemic, and preventive care for noncommunicable diseases is in sharp focus, today and into the future we must think differently about COPD. We must act now and together to ensure the rights of people with COPD are prioritied on the health agenda.
The human burden
Beyond the burden on healthcare systems[xi], there is also a significant burden on patients and their caregivers managing the disease and its impact on everyday life.[xii],[xiii] At GAAPP and IFA, it is the emotive, personal COPD patient stories that we encounter every day that are the driving force behind the work we are doing. Pauline Masters is living with COPD and describes it as “quite depressing at times, particularly when you’re having an exacerbation. Life is miserable when it’s like that”
Beyond that, there is considerable financial burden on patients and their families. This is often caused by the loss of work productivity patients experience in managing their COPD[xiv] and compounded with time taken off work by caregivers[xv]. These financial issues are further exacerbated by the significant impact on both physical and mental well-being, with approximately 40 of COPD patients known to have depression.[xvi]
For decades, COPD has been stigmatied as a smoker’s disease and because of this many people delay seeking treatment they desperately need.[xvii] A Lancet Commission report published in September 2022 shows there are many factors contributing to a COPD diagnosis, including environmental and genetic causes, rather than just being tobacco dependent.[xviii]
It is critical that we reframe the narrative around COPD to improve understanding of the disease and ensure patients and their families are empowered to access the management and treatment they deserve.
COPD is a neglected disease that needs urgent policy reform
More can be done to improve the burden patients feel of having COPD; however, this will require improved awareness, education, and access to management and treatment of the disease. So, how do we ensure adequate care for COPD patients?
We propose a holistic approach to COPD patient care within the larger healthcare system and collaboration among policymakers, healthcare professionals, patient and advocacy groups and industry. For example, given the comorbidities associated with COPD and the prevalence in an ageing population, lung cancer screening with a low-dose CT scan could help improve COPD diagnoses, while patients undergoing lung cancer screening would benefit from concurrent screening for COPD by spirometry.[xix] This could address the significant burden on patients and society across the EU and also improve respiratory care in a sustainable manner, especially as we strive toward making healthcare systems more resilient against future pressures.
Once an individual is diagnosed, we need to make sure they have easy access to the mostappropriate care throughout their treatment journey. Effective treatments exist. Recently experts have published a roadmap for effective COPD management[xx],providing guidelines that include: early and accurate diagnosis improved disease education improved follow-up care and access to treatment following hospital discharge for an exacerbation. Enabling coordinated care across specialists and primary care providers would also reduce the risk of repeated hospitaliations.
The European Commission’s Healthier Together EU Non-Communicable Diseases (NCDs) Initiative also aims to support European Union ember es on the development, introduction and implementation of national respiratory strategies, including for COPD. Gitta Vanpeborgh, a member of Belgium’s Federal Parliament, is leading the way in the Belgian government with policy proposals aimed at improving COPD care pathways, prioritiing multidisciplinary specialty care, and improving access to prevention and screening initiatives[xxi][xxii].
Now is the time to harness this momentum at all levels to develop and implement strategies on respiratory health and healthy ageing — and make sure COPD is at the cent of these conversations.
Lend your voice
If you are a government policymaker, member of a patient advocacy group or non-profit organiation, researcher, clinical expert, or just someone who wants to be involved, please endorse our declaration by sharing this article on your social networks with the hashtag #SpeakUpforCOPD. To learn more about our initiative, visit www.speakupforcopd.com. This campaign has been funded by AstraZeneca with support from Chiesi Farmaceutici, the International Federation on Ageing and the Global Allergy and Airways Patient Platform.
It is now time we Speak Up for COPD to help the many patients around the world, who cannot speak up for themselves. Lend your voice to support our joint declaration below.
[i] Quaderi, S. A., & Hurst, J. R. (2018). The unmet global burden of COPD. Global health, epidemiology and genomics, 3, e4.
[ii] Woo et al. Stigma Experiences in People with Chronic Obstructive Pulmonary Disease: An Integrative Review. Int J Chron Obstruct Pulmon Dis. 2021 Jun 4;16:1647-1659.
[iii] Make B, Dutro MP, Paulose-Ram R, Marton JP, Mapel DW. Undertreatment of COPD: a retrospective analysis of US managed care and Medicare patients. International Journal of Chronic Obstructive Pulmonary Disease. 2012; 7: 1.
[iv] GOLD. Global Strategy for the Diagnosis, Management and Prevention of COPD, Global Initiative for Chronic Obstructive Lung Disease (GOLD) 2022. [Online]. Available at: https://goldcopd.org/2022-gold-reports-2 [Accessed November 2022]
[v] Benjafield, A., Tellez, D., Barrett, M., Gondalia, R., Nunez, C., Wedzicha, J., Malhotra, A. An estimate of the European prevalence of COPD in 2050. European Respiratory Journal 2021 58; DOI: 10.1183/13993003.congress-2021.OA2866
[vi] Make B, Dutro MP, Paulose-Ram R, Marton JP, Mapel DW. Undertreatment of COPD: a retrospective analysis of US managed care and Medicare patients. International Journal of Chronic Obstructive Pulmonary Disease. 2012; 7: 1.
[vii] Quaderi, S. A., & Hurst, J. R. (2018). The unmet global burden of COPD. Global health, epidemiology and genomics, 3, e4.
[viii] Yorgancioglu A, Khaltaev N, Bousquet J, Varghese C. The Global Alliance Against Chronic Respiratory Diseases: journey so far and way ahead. Chinese Medical Journal. 2020; 133: 1513–1515. doi: 10.1097/CM9.0000000000000851.
[ix] Ballreich et al. Allocation of National Institutes of Health Funding by Disease Category in 2008 and 2019. JAMA Network Open. 2021; 4(1): e2034890.
[x] Bloom, D.E., et al. (2011). The Global Economic Burden of Noncommunicable Diseases. Geneva: World Economic Forum.
[xi] GOLD. Global Strategy for the Diagnosis, Management and Prevention of COPD, Global Initiative for Chronic Obstructive Lung Disease (GOLD) 2022. [Online]. Available at: https://goldcopd.org/2022-gold-reports-2 [last accessed November 2022]
[xii] Nakken et al. Informal caregivers of patients with COPD: Home Sweet Home? European Respiratory Review 2015 24: 498-504
[xiii] Halbert et al. Global burden of COPD: systematic review and meta-analysis. European Respiratory Journal 2006 28: 523-532.
[xiv] WHO. Fact Sheet: Chronic obstructive pulmonary disease (COPD). Available here: https://www.who.int/news-room/fact-sheets/detail/chronic-obstructive-pulmonary-disease-(copd) [Last accessed November 2022]
[xv] Nakken et al. Informal caregivers of patients with COPD: Home Sweet Home? European Respiratory Review 2015 24: 498-504
[xvi] Ivziku, D., Clari, M., Piredda, M., De Marinis, M. G. & Matarese, M. Anxiety, depression and quality of life in chronic obstructive pulmonary disease patients and caregivers: an actor-partner interdependence model analysis. Qual. Life Res. 28, 461–472 (2019).
[xvii] Woo et al. Stigma Experiences in People with Chronic Obstructive Pulmonary Disease: An Integrative Review. Int J Chron Obstruct Pulmon Dis. 2021 Jun 4;16:1647-1659.
[xviii] Stolz, D., Mkorombindo, T., Schumann, D., Agusti, Alvar., Ash, Samuel, Bafadhel, M., et al. Towards the elimination of chronic obstructive pulmonary disease: a Lancet Commission. The Lancet Commissions. Vol.400 Issue 10356 (Sept. 2022); pp.921-972.
[xix] Goffin, J., Pond, G., Puksa, S. et al., Chronic obstructive pulmonary disease prevalence and prediction in a high-risk lung cancer screening population. BMC Pulmonary Medicine 20, 300 (2020). https://doi.org/10.1186/s12890-020-01344-y
[xx] Bhutani, M. et al., Quality Standard Position Statements for Health System Policy Changes in Diagnosis and Management of COPD: A Global Perspective. Adv. Ther. 2022 Jun;39(6): 2302-2322 https://pubmed.ncbi.nlm.nih.gov/35482251/
[xxi] Alsof je 5 mondmaskers draagt: patienten en artsen vragen aandacht voor longaandoening COPD (‘Like wearing 5 mouth masks: patients and doctors draw attention to lung disease COPD’) November 17, 2021. Accessible at: https://www.knack.be/nieuws/gezondheid/alsof-je-5-mondmaskers-draagt-patienten-en-artsen-vragen-aandacht-voor-longaandoening-copd/ [Accessed November 2022]