Challenging the Surge of Inflammatory Bowel Disease: The Role of the China Crohn’s and Colitis Foundation in the Healthcare Landscape of Inflammatory Bowel Disease

Abstract

Inflammatory bowel disease (IBD) is a chronic and life-long disease, and patients must ultimately learn to live with and manage the condition. With advances in diagnostics and treatment in IBD, healthcare professionals (HCP) and patients are now concerned with both quality of care (QOC) and quality of life (QOL). China Crohn’s and Colitis Foundation (CCCF) is committed to improving the QOC and QOL for IBD patients by garnering social resources. This paper details how CCCF has worked for better IBD management over the past five years. The foundation has four main projects: education programs for IBD HCPs and patients, support activities, public awareness and advocacy, and research programs. CCCF is an increasingly influential public welfare organization providing advocacy for IBD patients in China. The foundation is now entering the next stage of its development in pursuing professional operations and helping to solve the social problems experienced by IBD patients. CCCF ultimately plans to pioneer reforms in China’s medical system and hopefully provide a successful example of IBD advocacy for developing countries to emulate.

Landscape and predictions of inflammatory bowel disease in China: China will enter the Compounding Prevalence stage around 2030

“…These risk factors include improved hygiene status, air pollution, greater exposure to antibiotics, diets containing high levels of fat and refined sugars, and other lifestyle changes such as cigarette smoking and discontinued breastfeeding ( 26 ). Secondly, economic advances contribute to better access to health care systems, more widely available diagnostic tools, increased awareness of both patients and physicians, and improved disease surveillance, all of which drive a higher diagnosis rate ( 6 , 27 ).…”

“…The fatal burden of IBD (mortality and YLLs) attenuated in China from 1990 to 2019 and remained relatively low, whereas the non-fatal burden (YLDs) increased steadily. The overall decrease in mortality reflects the improved survival of patients with IBD in China, which can be attributed to the establishment of consensus guidelines for IBD management, increasing education of IBD specialists, earlier introduction of biological therapy, improvements in surgical techniques, and raised awareness of colorectal cancer surveillance ( 27 , 28 ). Moreover, with the consolidation of the health insurance schemas in China, individuals become financially protected and get increasingly equitable access to health care ( 29 ).…”

“…Moreover, with the consolidation of the health insurance schemas in China, individuals become financially protected and get increasingly equitable access to health care ( 29 ). For example, the most widely used biologics, infliximab, became available under Chinese medical insurance schemes in 2020, helping to reduce the economic burden for patients with IBD ( 27 ). Despite recent progress in therapeutic approaches, IBD is still an incurable lifelong condition that can greatly compromise both the physical and psychological dimensions of life.…”

“…While there are shared pathophysiological and clinical features of IBD between China and western countries, the management of IBD in China is faced with distinct challenges, including limited medical resources, inadequate patient education, and the lack of standardized training programs for IBD specialists ( 27 ). There are currently only 63 referral centers for IBD in China, which fails to meet the sharp increase in IBD prevalence ( 27 ). In the last 5 years, the China Crohn's and Colitis Foundation (CCCF) has made great efforts to satisfy the rapidly growing need of IBD patients.…”

“…Nearby certified IBD specialists can easily be found via the CCCF website or the WeChat (the most popular Chinese social media application) platform to facilitate early diagnosis and treatment. By December 2020, 371 CCCF specialists had been certified, covering 27 provinces and 178 hospitals, forming a comprehensive network of IBD specialists in China ( 27 ). Given the considerable heterogeneity of socioeconomic status across regions in China, it is essential for healthcare systems to prepare their infrastructure and personnel to provide an equitable, affordable, and accessible distribution of care for IBD patients in China, especially with the Compounding Prevalence challenges ahead ( 47 ).…”