Struggles of living with the invisible disease
The article has been authored by Dr Sebin Abraham, MD (Paediatrics), Lancet Citizen’s Commission on Reimagining India’s Health System. Dr Parth Sharma, researcher Christian Fellowship Hospital, Oddanchatram, Dindigul, Tamil Nadu.
“Doctor, do I really have to take insulin for my entire lifetime?” - Paediatricians treating patients with Type 1 Diabetes would have faced this question multiple times.
Patients often know the answer to this question; nevertheless, they ask out of desperation, to know if there may be an option they could explore to skip the trouble of taking an injection for an entire lifetime. Type 1 diabetes mellitus is one of the most common chronic diseases in childhood. It is a condition in which the body is unable to produce insulin. As the hormone is vital for various bodily functions, its absence can lead to uncontrolled blood sugar levels and growth failure. Although the disease may present as early as during the newborn period, often it manifests itself in the school-going age group. The unpredictability of a child’s dietary intake, physical activity, and inability to communicate symptoms, make Type 1 diabetes a challenging disease to deal with.
In 2017, there were approximately nine million children with type 1 diabetes worldwide. It not only has high mortality with one in 10 children succumbing to the illness but also has a huge impact on the quality of life. Currently, there are no oral medications that can effectively treat this condition; patients are required to take insulin injections 2-3 times daily to keep their blood sugar levels under control. In school going children, continuing regular injections becomes a challenge. Delay in diagnosis and poor treatment compliance can lead to life-threatening complications. The prevalence of type 1 diabetes mellitus in India is 10.2 cases/per 100,000 children, making it home to the second-largest population of children living with this condition.
Children and young adults who have Type 1 diabetes face many problems. The financial demands of the disease, which entail regular insulin therapy, blood tests, and home-based glucose monitoring, cannot be met by all. In addition to these factors, the stigma attached to taking injections forces patients to hide their disease from society, thus adding to the stress caused by chronic disease. The disease often takes a toll not just on the patient but on the entire family, as they learn to understand and cope with the dietary requirements, lifestyle changes, and economic burden associated with the disease.
There is enormous scope for improvement in the services provided to children with diabetes. Recognising that children with diabetes constitute a vulnerable population, and identifying their needs, will be the first steps in the right direction. These measures need to be taken on a priority basis, so that the disease may be managed in a better way, and their quality of life can be improved. While outcomes of all diseases are influenced by economic, cultural, and social factors, this is all the more relevant in the case of Type 1 diabetes.
For example, the cost of insulin, which forms the cornerstone of treatment for Type 1 diabetes, has risen by almost 50% in the last four years. While Indian companies also contribute to insulin production, multinational pharma companies own the lion’s share of the Indian insulin market and command the highest prices. This scenario calls for a greater role for the government and public health officials, in actively monitoring and regulating the price of this life-saving hormone. When market policy is driven primarily by corporate interest, the perspective of patients, who are the most affected by insulin research and its cost, tends to be neglected. Clinicians and patient advocacy groups should be consulted in the decision-making process, as improperly regulated drug prices have a direct impact on health outcomes. With only one in three houses having a refrigerator (needed to store insulin), the socio-economic aspect of the disease also needs to be considered while treating this disease.
In addition to price regulation, providing free insulin pens and glucometers should be considered. The ‘mittayi’ project executed in Kerala, which aims at providing comprehensive care for children and adolescents with Type 1 diabetes mellitus, is worth emulating. Lessons learnt from this project may be adapted to suit the requirements and resources of other states too.
Improving awareness about the disease is also an area worth focusing on. At present, many confuse Type 1 diabetes with Type 2 diabetes, seen in adults. Information campaigns via television, print and social media could dispel myths and make the general public aware of the symptoms and treatment of this disease. Such measures may also help in reducing the stigma associated with taking insulin injections at school. Currently, many adolescents struggle to take insulin at lunchtime as they feel that they may be ostracised by peers. Some even skip insulin, resulting in uncontrolled sugar levels, which lead to the life-threatening complication of diabetic ketoacidosis.
Capacity building is another aspect of diabetes care which can yield rich dividends. Almost all children with type 1 diabetes initially present to a general practitioner or a paediatrician with symptoms of increased thirst, weight loss, constant hunger or unexplained fatigue. However, as the symptoms may be non-specific in this phase, a high index of clinical suspicion is needed to diagnose the disease at this stage. Training doctors in primary and secondary level hospitals, and organising Continuing Medical Education (CME) programmes which focus on the diagnosis of Type 1 diabetes, will undoubtedly improve the standard of diabetes care. Such measures will not only decongest the workload in tertiary care centers but also help patients with Type 1 diabetes in accessing care close to their homes, thus reducing the indirect costs associated with frequent travel to medical colleges.
Having enlisted all these measures aimed at helping children with Type 1 diabetes, it is important to remember that no amount of teaching can substitute lived experiences. Hence, listening to someone who has diabetes will convey the message much more effectively than any pamphlet. Formation of support groups will help those children who are newly diagnosed to have diabetes, as they will know that they are not alone in this difficult journey and that there are those who have walked ahead of them and continue to walk beside them. These support groups will act as safety nets to keep a check on each other. They will not only ensure treatment compliance but also help in addressing common concerns related to the disease and the challenges it brings.
When these children never cease to amaze us with their endurance and fortitude, how can we settle for anything but the best for them? Right now, we are a long way from giving them what is ideal. Let us, together, strive for a day when children with Type 1 diabetes will be able to reach their potential untethered by the struggles of living with this invisible disease.
(The article has been authored by Dr Sebin Abraham, MD (Paediatrics), Lancet Citizen’s Commission on Reimagining India’s Health System. Dr Parth Sharma, researcher Christian Fellowship Hospital, Oddanchatram, Dindigul, Tamil Nadu.)