About the author:
Veruschka Pandey is a 10th grade student studying in The International School Bangalore (TISB). She is a published author of the book ‘Tween Twilight’. As a child author from the age of 12, her articles have been featured in the Times Of India, Deccan Herald and Outlook Magazine. A social activist with a keen passion for public health, she leads the project ‘Suryanayak’, a mass movement on empowering ASHA workers in rural India by training them in CPR. She has been featured on Aaj Tak news channel for this work. Veruschka is working towards positive impacts in the field of public health through research and field projects.
Abstract
India’s rising incidence of pediatric diabetes presents a significant public health challenge, prompting a critical examination of the existing policy frameworks designed to manage and mitigate this disease among children. This research paper systematically reviews India’s health policies, regulatory guidelines, and intervention strategies specific to pediatric diabetes. It evaluates the effectiveness of these policies in screening, diagnosing, and treating juvenile diabetes, and assesses their alignment with international best practices. Key findings suggest that while India has made considerable strides in increasing awareness and access to diabetes care for children, significant gaps remain in early diagnosis, rural healthcare delivery, and affordable access to essential medicines and technologies. The paper advocates for a multidisciplinary approach involving healthcare providers, policymakers, and community organizations to create a cohesive and sustainable strategy against pediatric diabetes in India.
Introduction
India, often referred to as the ‘diabetes capital’ of the world is home to the largest population of children globally. Regrettably, this accolade extends to pediatric diabetes, a condition that carries a significant and growing burden within the country. India boasts the second-highest number of diabetics globally, surpassed only by China (Kalra, Sanjay, and Mudita Dhingra, 2018). But a disproportionate focus on adult diabetes, especially the more prevalent type 2 diabetes, has cast a shadow over the critical issue of pediatric diabetes, particularly type 1 diabetes.
The statistics underscore the urgency and criticality of the situation. Presently, India grapples with nearly 95,600 cases of type 1 diabetes among children below 14 years, with an additional 15,900 fresh cases emerging annually within the same age group (Kumar, 2015). These numbers serve as an unequivocal and undeniable reminder that the pediatric diabetes landscape in India demands immediate and concerted attention from policymakers, healthcare providers, and society at large.
As every parent worldwide grapples with concerns about their child’s nutrition, the spectre of pediatric diabetes casts a unique shadow. Today, it is estimated that approximately 98,000 children in India have been diagnosed with Type 1 Diabetes Mellitus, formerly known as juvenile diabetes or pediatric diabetes (Gomber et al, 2022). In light of this context, this research paper delves deeply into the policies that govern pediatric diabetes in India. It will meticulously examine the existing policy landscape, identify gaps and challenges in policy implementation, draw lessons from international case studies, and ultimately offer comprehensive policy recommendations. This research aspires to contribute significantly to the ongoing efforts aimed at addressing and combating pediatric diabetes in India, ensuring the well-being and future prospects of the young population grappling with this challenging condition.
Implications of Untreated Pediatric Diabetes
Pediatric diabetes, both type 1 and type 2, poses significant health and economic challenges. Untreated diabetes can quickly lead to life-threatening diabetic ketoacidosis (DKA). DKA necessitates emergency medical care, incurring immediate healthcare costs.
Uncontrolled diabetes can impair physical growth and cognitive development in children. Developmental delays can have lifelong consequences, affecting a child’s potential.
There are elevated risks of diabetes, as it significantly raises the risk of cardiovascular diseases such as narrowed blood vessels, high blood pressure, heart disease, and stroke later in life. Managing cardiovascular complications requires ongoing medical care and treatment, contributing to long-term economic costs. The development of complications not only affects physical health but also reduces overall well-being. Coping with chronic complications can take a toll on mental health, necessitating psychological support and counselling (Gomber et al, 2022). The management of pediatric diabetes involves frequent hospitalizations, medications, and the use of specialized equipment like insulin pumps and glucose monitoring devices. Direct medical costs can constitute a substantial portion of a family’s income.
Amidst the undeniable impact of pediatric diabetes, the epidemiological landscape in India and South Asia has been skewed toward adult diabetes, overlooking the substantial challenges faced by children. Nonetheless, commendable efforts have been initiated to address this knowledge gap. Karnataka embarked on a multicentric registry project spanning over 13 years, shedding light on the incidence rates of pediatric diabetes. The findings revealed incidence figures of 3.7/100,000 boys and 4.0/100,000 girls, although it is crucial to acknowledge the potential influence of incomplete reporting from various parts of the state. India’s unique physiological composition, characterized by a higher percentage of body fat and visceral fat compared to Caucasians with a similar body mass index, has led to the identification of a distinctive “thin fat” Indian diabetes phenotype, manifest from birth and potentially exacerbated by accelerated childhood growth (Narayan et al., 2023). This unique pathophysiological state is speculated to contribute to the early onset of type 2 diabetes and metabolic syndrome in Indian children.
Recognizing the imperative need for comprehensive data and insights, the Indian Council of Medical Research (ICMR) undertook a ground-breaking nationwide study on pediatric diabetes in 2022. The findings from this study were eye-opening, revealing a substantial surge in type 1 diabetes cases among Indian children. Moreover, it highlighted a narrowing urban-rural disparity in the diabetes burden, emphasizing the pervasive nature of this issue (López-Bastida, Julio, et al, 2017). Despite the prevalence of type 2 diabetes, the study also brought to light an alarming increase in the number of children being diagnosed with type 1 diabetes.
Globally, the burden of pediatric T1DM is substantial, with an estimated 78,000 children under the age of 15 developing T1DM each year. It is noteworthy that India, with its large population, holds the majority of T1DM cases in the South-East Asian region. Despite the challenges posed by this growing prevalence, India’s pediatric T1DM incidence remains in line with the global trend. India is grappling with a growing prevalence of pediatric T1DM. The country stands out as a significant contributor to the global burden, with approximately 3 new cases per 100,000 children (Kalra, Sanjay, and Mudita Dhingra, 2018). Understanding the global trends and prevalence rates of pediatric diabetes, encompassing both T1DM and T2DM, is of paramount importance. These trends shed light on the evolving landscape of diabetes among the world’s youth. In the case of India, acknowledging its contribution to the growing burden of pediatric T1DM and T2DM can aid in the development and prioritization of policies for effective diabetes management among children and adolescents. This approach is crucial to ensure the well-being and future prospects of the young population affected by this condition in India and around the world.
Existing Policy Landscape in India
India has initiated several healthcare policies to address the challenges posed by pediatric diabetes, including both type 1 diabetes mellitus (T1DM) and type 2 diabetes mellitus (T2DM) among children and adolescents. These policies encompass various facets, including the provision of essential tools for diabetes management, such as insulin shots and glucometers, as well as efforts to identify diabetes cases within the school system.
Launched by the Indian Council of Medical Research (ICMR) in 2006, this registry initially involved eight collaborating centers across India, later expanding to ten. While it doesn’t exclusively focus on T1DM, it collects extensive data, including age of onset, treatment patterns, insulin regimens, complications, infections, and causes of mortality (Kalra, Sanjay, and Mudita Dhingra, 2018).
A milestone achievement by the Uttar Pradesh state government permits students with type 1 diabetes to carry insulin into classrooms. This move promotes inclusivity and raises awareness about type 1 diabetes, impacting over 8.5 lakh children across the nation. Furthermore, allowing children with type 1 diabetes to bring essential items to board examinations is a significant move to ensure their well-being during critical academic assessments (Gomber et al, 2022).
The NCPCR has played a crucial role in advocating for the rights and well-being of children with type 1 diabetes. It has communicated with education boards across states and union territories, emphasizing the importance of schools providing proper care and necessary facilities (López-Bastida, Julio, et al, 2017). The advocacy efforts of the NCPCR are essential for ensuring the rights of children with type 1 diabetes are upheld in schools. The effectiveness of this policy will be measured by the extent to which schools adhere to guidelines and provide necessary support.
Despite these initiatives, several challenges persist in the policy landscape related to pediatric diabetes in India. Children and adolescents with type 1 diabetes continue to face barriers, including the cost of insulin, glucometers, and related supplies. Additionally, there is a need for structured diabetes education and counseling, along with the proper training of healthcare professionals (Kalra, Sanjay, and Mudita Dhingra, 2018).
Addressing juvenile non-communicable diseases (NCDs) like type 1 diabetes is urgently required. While some progress has been made, existing support from non-government organizations and pharmaceutical companies remains fragmented. A structured, implementable, deliverable, replicable, scalable, and pharmaco-economically viable national healthcare policy is imperative (López-Bastida, Julio, et al, 2017).
To address these policy gaps, a pilot model project for the management of type 1 diabetes has been initiated in selected districts of West Bengal (Narayan et al., 2023). This innovative project leverages the existing healthcare delivery system and integrates with the National Programme for Prevention and Control of Cancer, Diabetes, Cardiovascular Diseases, and Stroke (NPCDCS). The key components of this program include upgrading existing NCD clinics to T1DM clinics, providing comprehensive healthcare services, including detection, management, referrals, and rehabilitation, delivering structured diabetes education and counselling, creating a registry of type 1 diabetes patients, training human resources and building capacity at the community level.
Policy Recommendations
This section delves into the policies implemented by the United Kingdom (UK), Sweden, and Canada, focusing on pediatric diabetes care and management. These international case studies offer valuable insights and lessons that can be applied to enhance India’s policies related to pediatric diabetes.The examination of international policies offers valuable insights and strategies that can be applied effectively to the Indian context.
The UK’s emphasis on comprehensive strategies to prevent Type 2 diabetes and address risk inequalities is noteworthy. Their approach to reducing the overall risk of diabetes aligns with India’s growing concern regarding lifestyle-related factors leading to diabetes. India can adapt similar preventive measures, with a specific focus on addressing its unique risk factors, such as a genetic predisposition to diabetes and the increasing prevalence of childhood obesity (Prasad, 2011). Collaboration with schools, community centers, and local government bodies to promote physical activity, healthy eating habits, and obesity prevention programs can be an effective approach.
The UK’s commitment to empowering individuals with diabetes through shared decision-making and lifestyle promotion underscores the importance of education in diabetes management. India can develop culturally sensitive and easily accessible educational materials that cater to diverse populations. Leveraging technology and community health workers to reach remote areas, along with promoting diabetes education through multimedia campaigns, local health fairs, and community workshops, can help disseminate crucial information to those in need.
The UK’s focus on high-quality care standards for both children and adults highlights the importance of setting clear clinical guidelines. India can establish evidence-based clinical care standards that reflect its healthcare resources and patient population. Furthermore, the emphasis on comprehensive risk factor management can be adapted to address India’s specific healthcare challenges effectively.
In the case of Sweden, its use of data registries for informed decision-making demonstrates the significance of tracking diabetes prevalence, outcomes, and policy effectiveness. India can establish robust data collection systems that are scalable and accessible, even in resource-limited settings. Collaboration with research institutions to analyze data and refine policies based on real-world outcomes can lead to more effective diabetes management strategies.
On the other hand, Canada’s policies supporting children with diabetes in schools showcase the importance of ensuring the safety, well-being, and participation of students with diabetes. India can collaborate with education boards to integrate diabetes management guidelines into school policies, providing comprehensive training for teachers and school staff (Venkatesh, 2021). This would help recognize diabetes-related emergencies, handle blood sugar testing, and administer insulin effectively.
India can tailor preventive strategies to address its unique risk factors, such as genetic predisposition and the growing burden of childhood obesity (Milton, B., et al, 2006). Collaboration with local bodies, schools, and community centers can help promote physical activity and healthy eating habits among children, effectively reducing diabetes risk. Furthermore, India can develop evidence-based clinical care standards that reflect its unique healthcare resources and patient population. Cost-effective strategies for regular surveillance, blood glucose control, and complications management should be incorporated.
Collaboration with education boards and comprehensive training for school staff can integrate diabetes management effectively into school policies, ensuring the safety and well-being of students with diabetes (Gomber et al, 2022). Culturally appropriate antenatal care programs should be developed for pregnant women with diabetes, involving maternal and child health centers to provide specialized support and education. Establishing a network of healthcare providers and support groups for comprehensive care, particularly for those requiring multi-agency support, will improve outcomes.
Implementing scalable data collection systems and collaborating with research institutions to analyze data will contribute to evidence-based policies and effective management. To ensure successful policy implementation, investing in healthcare provider training is crucial (Kumar, 2015). Offer workshops, seminars, and continuous medical education to equip healthcare professionals with the knowledge and skills needed for pediatric diabetes management. Finally, leveraging community health workers to bridge the gap between healthcare facilities and remote communities is essential These workers can play a pivotal role in educating families about diabetes, helping with regular check-ups, and monitoring treatment compliance.
Conclusion
This paper identifies the lack of robust, data-driven policymaking as a major hurdle in crafting targeted interventions. Recommendations are made for enhancing policy frameworks by integrating comprehensive diabetes education programs, improving healthcare infrastructure, and fostering public-private partnerships to boost research and development. By implementing these strategies and engaging various stakeholders, India can effectively execute and monitor its pediatric diabetes policies. This will ultimately improve the lives of countless children and adolescents living with diabetes in the country. Periodic reviews and necessary policy adjustments ensure that policies remain responsive to the evolving healthcare landscape and the needs of the pediatric diabetes population.
References
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