As per the Indian Council of Medical Research’s September 2022 report, India is home to 77 million diabetics, the second highest in the world. Yet, the unfortunate truth is, we know very little about it. This, according to Jazz Sethi, 26, founder and director of The Diabesties Foundation, is because we tend to generalise diabetes. In this interview with The Good Story Project’s Swati Subhedar, Sethi, a Type 1 Diabetic (T1D), elaborates on how those living with diabetes, especially T1D, often struggle to deal with the endocrinological, physical, physiological, emotional, mental, psychological, and financial aspects that come along as package deal. We also touched upon a range of other topics, including the insulin monopoly, the need to educate individuals living with diabetes as well as their families and caregivers and provide them with multidimensional support, and the massive role organisations like hers are playing to fill in the gaps in our broken healthcare system until major policy level changes are implemented by the government.
Jazz Sethi, a resident of Ahmedabad, was 13 when she was diagnosed with Type 1 Diabetes (T1D). She was a midfielder in her school football team, and they were practicing for an upcoming tournament. During that time, she complained of feeling excessively thirsty and was losing weight. It was assumed it was because of her gruelling schedule. She underwent a blood test. A few hours later, the doctors advised her parents to rush Sethi to the Intensive Care Unit (ICU). Her blood sugar was at 1050mg/dL (normal blood sugar for a teenager is in the range of 19-50mg/dL).
That report changed her life and from that day, her life revolved around constantly keeping a tab on her blood sugar and adopting many lifestyle changes. It took her a decade to make peace with T1D and she launched The Diabesties Foundation. The goal of the non-profit organisation that works for “awareness, advocacy and access” is to make “every person with Type 1 Diabetes feel heard, loved, supported and celebrated”.
In 2019, Sethi, a professional dancer, and daughter of former world billiards champion Geet Sethi and educator Kiran Bir Sethi, became the first person in the country to have a Do-It-Yourself Artificial Pancreas (DIYAP), a technology that has changed her life. She hopes it becomes a norm in the country.
In this interview, she decodes diabetes for all of us.
If you have to explain T1D to a child or to a layman, how would you explain it?
It’s very important that people understand what insulin is and the role it plays. But it’s not easy to explain it to children or those who don’t have access to education. This is how I explain it to them. One needs petrol to drive a car. The petrol of our body is glucose that we get from the food we eat. It enters our blood stream – so, blood stream is the road that our car takes. When we reach our destination, we need keys to enter our homes. That key is insulin, which is produced in the pancreas. It opens the blood stream and helps the entry of glucose (energy) in our muscles. In the case of people living with T1D, our body does not produce any insulin, so we have to take it from the outside. Managing T1D is a beautiful game of balance. How much food you need to eat, how much insulin you need to take, how much exercise you need to do, your carb count – it’s all a game of balance.
One of the missions of your foundation is to address the wide gap in the healthcare system. What are the steps you are taking?
You need time to understand the nitty-gritty of any chronic condition, including diabetes. You live with diabetes for the rest of your life. In the case of T1D, you have to unlearn what you know about life and then re-learn in order to incorporate this condition into your life. It’s very complex. In India, we have an overburdened healthcare system. Doctors are not able to spend a lot of time with persons with T1D. It’s not just about prescribing insulin or setting the dose; the doctors need to guide them about the changes in their diet and give proper counselling not just to the person/child who has been diagnosed with T1D, but also to their families and caregivers. In India, we don’t have this kind of support system. We are trying to bridge this gap. The first step is to recognise that we have a broken system and to try and understand why it is broken. We must not blame the doctors. With 100 patients in the waiting room, they can’t spend one hour with each patient. That’s when we step in. We answer all the questions people may have and give them mental and emotional support. It is important to tell them that they are not alone because living with T1D is a difficult life to live.
Talking about T1D, do we have any sort of data in India?
Unlike in the West, we don’t have a system wherein persons living with diabetes can register themselves. So, the numbers that we have are not official and the data is very conservative. As per the JDRF, the world’s largest non-profit funder of T1D research, in India, there are more than 902,172 ‘missing people’ and an average of 45 ‘healthy years lost’ to T1D per person, if diagnosed at age 10. (Missing people is the number of people who would still be alive today if they had not died early due to complications from T1D, and ‘healthy years lost’, represents time lost to ill health, disability, or early death from living with T1D). This is in addition to the persons who are already living with T1D.
On an average, how much does a person ends up spending on insulin every month?
It depends on the kind of insulin you are on, but one ends up spending anywhere between Rs 5,000 and Rs 20,000 a month. In the US, a vile of insulin will cost me Rs 2,700, and in India, I will get it for Rs 1,700. But if you look at the purchasing power, that’s a lot for middle or lower-middle class families here. And then there are those who are living below the poverty line and are diabetic. In India, we don’t have a strong public health system. Some government hospitals do provide free insulin, but it’s not a very sustainable and reliable solution. For instance, you will get insulin only if it’s in stock. Also, diabetes is not covered by insurance companies.
There exists a monopoly across the world with three big pharma companies controlling the entire insulin market. In India, the price of insulin has gone up consistently in the past decade. What steps is the government taking to deal with the insulin monopoly and to control the rising prices?
The reason tackling high price of insulin is not a priority for the government is because insulin is already highly subsidised here. Ideally, it should be free, but because we don’t have any official data on the number of people living with T1D, it is difficult for the government to make this happen. Talking about insulin monopoly, dealing with issues like this requires sweeping policy-level changes. We don’t have any sustainable action plan. The government needs to understand that the cost of not doing anything is going to be far greater than the cost of doing something. If you don’t give persons living with T1D the basic standard of care (SOC), lot many people will have complications and they are going to end up in hospitals and occupy beds. Organisations like ours are happy to step in until some policy-level changes happen, but parallely the government too has to do its bit. We are giving free insulins, but that’s not enough. Educating them is equally important. When I talk about access, it’s not just access to insulin, it’s also about access to education, counselling, and peer support.
What is the one thing the government must do as a first step to spread awareness about diabetes?
In India, we generalise diabetes and there is no awareness about the types of diabetes. The government should start by spreading awareness about the two main (Type 1 and Type 2) types of diabetes. If you look at any advert or any public messaging, it just says diabetes. That is where we falter right in the beginning because Type 1 and Type 2 are completely different, they have different physiologies, different pathologies, and different treatment options. The government needs to spread awareness about the specifics of the main two types of diabetes.
Many people dealing with T1D are also those for whom arranging two meals a day is the biggest challenge. How can we help that segment of society?
The most unfortunate reality is when arranging two meals a day is a challenge, what should your priority be — getting food on the table or getting insulin. In that case, the thing you require to live becomes something you have to think about. We work with a lot of children who are below the poverty line and their stories and struggles are a whole different league. They don’t have refrigerators at home so they can’t store insulin, the electricity fluctuates, they reuse the needles over and over again. We try to be the beacons of hope to such people.
Any chronic illness is anxiety-inducing, especially for those who don’t have access to education. How do we address the mental health needs of that segment of society?
In India, the poor hesitate to ask questions to doctors, and they are the ones who have millions of questions. Our team of educators answers all their questions and this helps reduce their anxiety. There have been times when these sessions have lasted for two hours. There have been times when I have had to explain the same topic every single week to the same person. And it’s ok. It takes time. It’s about teaching and re-teaching the same concept until it gets absorbed in the subconscious and becomes second nature. We also cater to caregivers. Because T1D is more prevalent in children, it’s the parent who is taking care of the child. We have mothers who are absolutely burnt out and our caregiver counsellors help them out. Our aim is to help every stakeholder in this family by giving them adequate importance, support, and assurance that they are not alone. Also, language matters. We never say suffering from diabetes, we say people living with diabetes. We have our educational material translated into different regional languages so that it reaches more and more people.
The Diabestes Foundation |Contact: 9157721309 | Email: firstname.lastname@example.org