Abstract
International organisations come together to raise awareness of bronchiectasis on 1 July 2022: World Bronchiectasis Day https://bit.ly/3tPH7EU
Introduction
On 1 July 2022 we celebrate the first World Bronchiectasis Day. The day is an opportunity to raise awareness of the disease globally, provide information and support to patients, and to promote improved clinical services and more research into this neglected disease.
World Bronchiectasis Day 2022 is being organised by an international planning committee comprising patient advocates, representatives from collaborating patient advocacy organisations, professional societies and leading experts from around the world. World Bronchiectasis Day will become an annual event acting as a focal point for stakeholders to promote awareness of the disease.
Why do we need World Bronchiectasis Day?
Bronchiectasis remains under-recognised, underdiagnosed, under-treated and under-researched [1, 2]. Studies have consistently found a long delay from the onset of symptoms to diagnosis of bronchiectasis, estimated at an average of more than 10 years in several studies [3, 4]. Many patients with bronchiectasis are misdiagnosed with another respiratory condition prior to a diagnosis of bronchiectasis, potentially leading to inappropriate treatment [5, 6]. Despite bronchiectasis being far from a rare disease, the awareness of the condition among the general public is minimal in most countries [7, 8]. Patients may find it difficult to access appropriate care due to a lack of specialised services. The lack of awareness and limited services in many countries is inappropriate given the high clinical impact and healthcare costs associated with the disease [9]. Early diagnosis of bronchiectasis provides the opportunity to positively impact the natural course of the disease and, ultimately, improve the long term outcomes for patients who carry a heavy burden of disease and treatment.
It is important to recognise that many aspects of bronchiectasis, including its prevalence, aetiology and clinical presentation, are different in different regions of the world [10, 11]. Awareness of bronchiectasis and resources for treatment may be particularly limited in low and middle income countries, and it is important that initiatives to raise awareness of the disease and research initiatives such as registries have a global impact.
Available treatments for bronchiectasis are inadequate to the burden. There are currently no treatments licensed by regulatory authorities for the treatment of bronchiectasis [12, 13]. There is an urgent need for new treatments that can reduce or relieve symptoms, improve quality of life and prevent exacerbations, which contribute to disease progression and healthcare burden. There is a growing evidence base for the efficacy of some treatments, including maintenance oral and inhaled antibiotics, but these treatments are not available in many countries [12, 14–16]. There is also a need for greater access to basic interventions, such as diagnostic testing, testing for underlying conditions (such as immunodeficiencies), airway clearance treatments and rehabilitation, that have proven benefits for this patient population but are not accessible to all [17, 18].
The COVID-19 pandemic has reminded us all of the impact of respiratory infectious diseases and the stigma associated with cough [19, 20]. In common with other serious respiratory diseases, for patients with bronchiectasis, access to benchmark clinical care such as pulmonary rehabilitation, bronchiectasis clinics, physiotherapy, CT scanning, pulmonary function tests, nebulised medicines and clinical trials have all been severely limited as a direct consequence of public health measures to limit the spread of COVID-19 [21–23]. These all have direct negative consequences for new diagnoses and longer term management. The pandemic has put unprecedented strain on respiratory services and the clinicians who deliver these.
Research into respiratory diseases is, overall, poorly funded. There has been a major drain of research funding away from all medical research to COVID-19-specific projects. We need to strategically review some of the extraordinary gains in understanding of the basic mechanisms of inflammation, virology, vaccine responses, airway remodelling and adaptive clinical trial design, and translate this to bronchiectasis, to build on the momentum generated.
The way forward
Throughout the world, children and adults with bronchiectasis carry a huge burden of illness with enormous unmet clinical needs [24]. The international community is calling for greater awareness, improved access to effective treatments and large scale investment in new treatments. Advancing the science of bronchiectasis must include addressing the underlying causes of the condition, where in most series >50% of patients are classified as idiopathic or have poorly characterised post-infectious aetiologies [11, 25]. Translational science is key to unravelling both the underlying causes and the subtypes of disease that require different treatments (phenotypes and endotypes) [6, 26].
World Bronchiectasis Day represents the coming together of patients, clinicians, researchers and professional organisers from across the world with the aim of improving the lives of patients with bronchiectasis. Great progress has been achieved in the past 10 years through large scale collaborative networks and registries that have helped to give bronchiectasis a higher profile within the respiratory field [10, 27–31]. Working closely with patients and patient organisations, these networks have improved our understanding of the epidemiology of this disease, as well as contributing to the establishment of national and international guidelines and clinical trials.
The theme of the first World Bronchiectasis Day is “bringing the world together to raise bronchiectasis awareness” throughout the year, with this becoming an annual event on 1 July each year with a different theme. A feature of the global clinical and research community in bronchiectasis is collaboration [6, 32] and our commitment, as we come together for World Bronchiectasis Day, is for this global network to work together to make a real impact for patients with this disease.
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Acknowledgements
World Bronchiectasis Day is supported by the US COPD Foundation, the American Thoracic Society, EMBARC: the European Bronchiectasis Network, the European Lung Foundation, NTM Information and Research, the Lung Foundation of Australia, the American Lung Association, Lovexair Foundation, the Japanese Respiratory Society, the Chinese Thoracic Society, Global Allergy and Airways Patient Platform, the Indian Chest Society, the American College of Chest Physicians, the American Association for Respiratory Care, the South African Thoracic Society, the US COPD Coalition, Running on Air and the Cystic Fibrosis Foundation.
Footnotes
L.C. Morgan is the Chair of Lung Foundation Australia. J.D. Chalmers and T. Aksamit are co-chairs of World Bronchiectasis Day 2022 international planning committee. T. Aksamit is the Director of Bronchiectasis and NTM360, COPD Foundation.
Conflicts of interest: J.D. Chalmers reports personal fees from AstraZeneca, Boehringer Ingelheim, Chiesi, GlaxoSmithKline, Grifols, Insmed, Janssen, Novartis, Pfizer and Zambon; and grants from AstraZeneca, Boehringer Ingelheim, GlaxoSmithKline, Gilead Science, Insmed and Novartis, outside of the submitted work. S. Aliberti reports personal fees from AstraZeneca, Bayer Healthcare, Chiesi, GlaxoSmithKline, Grifols, Insmed, Menarini, Zambon and ZetaCube; and grants from Chiesi. All other authors report no conflicts of interest.
- Received June 18, 2022.
- Accepted June 20, 2022.
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