My name is Rohan Arora.
I'm sharing my story because I believe Universal Healthcare should be accessible and affordable for everyone living with NCDs.
17 September 2021
Diagnosed with diabetes and debt
At age 21, I was misdiagnosed with type 2 diabetes, despite living with Latent Autoimmune Diabetes in Adults. Due to lack of appropriate treatment, over the next three years my pancreas stopped producing insulin, until I was admitted to hospital with a severely high blood sugar level of 636. I attended a private hospital due to the urgency of my condition, as local public hospitals are unorganised and unhygienic. Although I had health insurance, I was told that full coverage wasn’t provided for pre-existing diseases. Unemployed and having to pay 70% of my hospital bills, I knew my journey forward meant recovering both from the disease and debt.
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Image taken in hospital when I was diagnosed with diabetes in 2009 and had to pay hospital bills.
17 September 2021
Insulin = Life = Money
Insulin is a hormone, produced by the pancreas, that controls the amount of glucose in bloodstream. Since my pancreas has stopped producing insulin, I must inject it multiple times a day. Insulin is the sixth most expensive liquid in the world, yet alongside other diabetes supplies, it is not covered under medical insurance in India. My cost of living dramatically increased because I must pay 4000 rupees (US$53) every month for insulin, which I buy from a private pharmacy. Besides insulin, other supplies including needles, injector pens and continuous glucose monitoring devices cost me 6000 rupees (US$80) per month.
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Insulin is the 6th most expensive liquid in world and is not covered under medical insurance in India.
17 September 2021
Community care and concerns
Through the Blue Circle Diabetes Foundation (BCDF), I’ve connected with people living with diabetes from across India and have learned that cost of care is a shared concern. Medications and supplies must be paid for out-of-pocket, as national insurance only partly covers hospital fees. Free insulin is available in government hospitals, but the most sought-after insulin (the faster one) is often unavailable. Further, because this insulin is not manufactured locally, we are subject to unpredictable price increases. Inflation has also caused a rise in prices, with many people now reusing injections and needles beyond the recommendation to save money.
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Image taken at "Run for Diabetes 2020" event organized by Blue Circle Diabetes Foundation and Chellaram Hospitals.
17 September 2021
Creating awareness
The Coronavirus lockdowns in India caused significant stress to many people living with diabetes. I joined a BCDF initiative called 'The Buddy Project Helpline', where myself and 10 volunteers living with diabetes were trained to provide basic psychosocial and diabetes support in multiple languages. Uncontrolled diabetes and external stressors increase the risk of mental health conditions like diabetes distress (symptoms include stress, anxiety, and depression). Through the helpline, I learned about challenges with access to psychosocial services, particularly in remote areas; most people in smaller towns can’t afford private sessions, and it is challenging to find mental health services provided in local languages in government facilities.
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This picture gives a snapshot into the 'Blue Circle Buddy Project', a helpline where myself and 10 other people living with diabetes were trained to provide basic psychosocial and diabetes support in multiple languages.
17 September 2021
Advocating Universal Health Coverage for NCDs in India
The price of diabetes medications and supplies has been rising. There is lack of affordable and comprehensive health insurance for people living with diabetes. India, despite being a pharmaceutical giant, does not manufacture quality, affordable insulin. There is also a lack of resources and access to affordable mental health care across India.
“I call on the India Ministry of Health to: subsidise the cost of NCD medications; integrate diabetes, mental health and other NCDs into health insurance schemes; and work towards integration of NCDs into universal health coverage for all.”
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Medications needed by people living with NCDs should be affordable and available for all.
NCD Diaries
I’m sharing my story to ensure that treatment, care and support for all people living with NCDs is affordable in India. I wish to see the advancement of UHC, inclusive of all NCDs, in my country.
Rohan Arora, lived experience of diabetes, India
About NCD DIARIES
The NCD Diaries use rich and immersive multimedia approaches to share lived experiences to drive change, using a public narrative framework.