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Redefining Diabetes: Youth Initiatives Transforming India’s Health Landscape
More children and young people live with Type 1 diabetes in India than anywhere else on earth, according to estimates from Life for a Child. Through the nonprofit, Direct Relief is supporting thousands of young people living with diabetes with the insulin and supplies they need to live their best lives.
When Dr. M.V. Jali started practicing medicine in the mid-1980s, about 19 million people – a number seen by him as an undercount – were estimated to be living with diabetes in India. Still, “things have changed tremendously since then,” said Jali, CEO, Medical Director, and Chief Diabetologist at KLES Dr. Prabhakar Kore Hospital & Medical Research Centre and a leading professor of diabetology.
Today, an estimated 11.4% of people in India, equal to 101 million people, have Type 1 or Type 2 diabetes, with the latter being far more common. This percentage is similar to the U.S., where an estimated 11.6% of the population is living with diabetes. Jali’s highly-cited 1988 study in the BMJ showed the prevalence of diabetes at 5% in a south India township across all ages. For those between 55 and 64 years old, the figure was 41%.
People diagnosed with Type 1 diabetes, an autoimmune disease caused by different factors, including genetics and some viruses, make little to no insulin, a hormone that regulates blood sugar levels and helps the body convert food into energy. Without taking insulin, it can become fatal, and limited access to supplemental insulin can lead to disabilities. Globally, about 8.4 million people had Type 1 diabetes in 2021, a figure that could double by 2040, according to a Lancet study. It currently has no cure.
Type 2 diabetes generally occurs in people older than 45 years old. Excess body fat and other factors cause blood sugar to be too high due to decreased insulin production and because cells show increased resistance to insulin and take in less sugar. Other types of diabetes, including during pregnancy, exist as well.
Jali said that three major challenges facing diabetes care in India are population size, awareness, and access to healthcare. The number of patients across the subcontinent presents policymakers and doctors with several issues. India has 28 states and eight union territories, each with diverse local cultures, languages, and foods. This impedes the standardization of policies to address diabetes care since what might work in one area might not be relevant elsewhere, Jali said.
In terms of awareness, Jali said the situation has improved over the last two decades as a result of dedicated campaigns such as World Diabetes Day. But, he said, the campaigns have been less effective in some rural communities, which still lack knowledge about the disease and the importance of seeking care to help manage it.
Gayathri, 6, attends a Life for a Child-supported healthcare facility in India. (Photo courtesy of Life for a Child)
However, even with education, people in rural areas also face some of the greatest access-related obstacles. Jali pointed out that rural access is limited due to various factors, including lack of facilities. He is optimistic that government programs, notably the National Programme for Prevention and Control of Cancer, Diabetes, Cardiovascular Diseases and Stroke, will help address these disparities.
Across many sectors of India, from rural to urban, medicine affordability remains a challenge for many patients and their families, especially if a patient is working through multiple chronic diseases.
Insulin Finds a Way
Seeking to support children and youth who have Type 1 diabetes, Life for a Child, a nonprofit focused on increasing access to insulin worldwide, currently serves over 50,000 children and youth in 48 countries. The group, based in Australia, estimates that there are more children and youth living with Type 1 diabetes in India than in any other country. Four hundred thousand children and youth are estimated to lack sufficient access to insulin and other aspects of care, with at least 50% of these in India.
The nonprofit anticipates an increase in the number of beneficiaries to 15,000 by the end of this year, with a long-term goal of reaching 90,000 people by 2030. Globally, Life for a Child’s goal is to support around 150,000 people with Type 1 diabetes in 65 countries by 2030.
A major challenge related to insulin is that it must be shipped and stored cold, between a temperature range of 2 degrees and 8 degrees Celsius. This challenge can prevent access to insulin in places without reliable power or refrigeration facilities. Delays related to importation and logistics can further complicate shipments.
Parshwa was diagnosed with TYpe 1 diabetes at 14 years old. Today, he is studying medicine at university. (Photo courtesy of Life for a Child)
Faced with these challenges in India, Direct Relief looked to examples in other countries that could provide insights regarding the successful import and distribution of insulin to multiple locations in-country. Pakistan and Sri Lanka provided such examples. Both nations also have a substantial need for charitable insulin shipments and necessitated a decentralized distribution model since no single group, hospital, or government agency could serve as a central hub.
Using lessons learned with Life for a Child in those two countries, last August, Direct Relief was approved by India’s Ministry of Health to send 80,000 insulin cartridges, enough to support 5,630 youths, to 15 healthcare facilities across 12 cities in India, including Dr. Jali’s facility and others in Ahmedabad, Aurangabad, Bangalore, Belgaum, Coimbatore, Kota, Nagpur, Navapur, Pune, Srinagar, Trivandrum, and Vellore. This shipment was followed in October by the delivery of 16 single and double-door pharmaceutical-grade refrigerators to ensure the safe storage of insulin as part of Direct Relief’s Global Cold Chain Initiative.
The successful game plan to ship this amount of insulin involved the combined efforts of Direct Relief, its contracted warehouse in the Netherlands, and various freight forwarders, which together have been acting as the “hub.” A single entity in India, Samatvam, applies for and receives all importation permits and tax exemption documentation. Direct Relief and its freight forwarders then work to have the shipment imported, cleared, and delivered safely to each individual dispensing facility.
In combination with these programs, Jali said insulin pens, especially in rural areas, can also present a type of solution since they do not need to be refrigerated after they are opened and are good for about one month.
Winning the Race
Assessing current trends, Jali said that while prevailing social factors, like preserved foods and more sedentary lifestyles, might be leading to an increase in the number of patients diagnosed with Type 2 diabetes, other tools can help address the disease, even as programs focused on outreach, education, and the encouragement of lifestyle changes are ongoing.
Diacare is a Life for a Child-supported clinic in Ahmedabad, India. (Photo Courtesy of Life for a Child)
A major development, Jali said, is the vastly increased speed by which a person can check their blood sugar. He recalled receiving results in the early 1980s took about one day. Now, results are instantaneous, and some solutions, which are still quite expensive, offer a constant reading.
Jali also said that personalized treatment plans based on precision medicine are emerging. He estimated that in five years, he and his colleagues will have a genomic lab that will allow them to tailor care to individuals based on their genes.
While high-tech options are emerging, a major help in recent years when it comes to patient care is a simple text message. “By sending them messages or calling via mobile to remind and encourage them to attend appointments, they reciprocate positively and see that we care for them,” he said. Recognizing the importance of making patients feel comfortable and increasing the chances of patients engaging with the hospital, it offers yoga and other traditional programs.
Another way Jali and his team care for patients, specifically younger ones, is via a free summer camp the hospital organizes with support from Life for a Child, Direct Relief and the EU. The camp, which mostly includes children from rural areas, enables screenings, education, and strategies to help people delay the onset of Type 2 diabetes. Besides health factors, Jali noted that the financial aspect of diabetes “can put a lot of pressure on a nuclear family.” The team also goes to local schools to do diabetes screenings.
Beyond these health-based initiatives, Jali said the fight against diabetes also requires other tactics. Penpals United was a successful program he referenced, which helps connect kids living with Type 1 diabetes worldwide via video-based support groups. He also said it’s important to tell kids and parents about people who have been successful despite having diabetes, from becoming doctors to running ultra marathons and winning medals.
“We want to empower children from the beginning,” he said. “So they understand they’re not alone in society and that others with diabetes can achieve.”
Direct Relief has provided insulin, diabetes management products, and cold-chain refrigeration for temperature-sensitive therapies to support children and young people through Life for a Child in 44 countries, including India.
Additional reporting was contributed by Kelsey Grodzovsky.
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