'I Will Die Without Insulin' Why Cost is Driving Some to Ration It

'I Will Die Without Insulin' Why Cost is Driving Some to Ration It

A type 1 diabetic can die without insulin. Yet, insulin costs are soaring high, making it unaffordable for many.

Imagine having to pay thousands of rupees for oxygen. Every month, without fail — or you’d die.

For around 80 million diabetics in the world, this is a reality. Insulin, essential for their survival, comes with a price tag. An unbelievably high, dent-in-your-pocket kind of price tag.

This lack and unaffordability of insulin has destroyed lives. It nearly killed 9-year-old Riya, whose parents were forced to ‘ration’ insulin so it could last longer. Fortunately, support from the diabetes community and the group ‘Diabetes India Youth Action’ (DIYA) saved her life. But she is just one among the many, waiting to be saved.

Millions like Riya need to be saved. Access to insulin is their right.

Also Read: 98 Million Diabetic Indians & a Shortage of Insulin by 2030: Study

A 2016 study evaluating insulin access in public and private health sectors in Bengaluru, India, found that the lowest-paid unskilled worker in the state would pay 1.4 to 9.3 days’ wages to purchase monthly supply of insulin, depending on the type and healthcare sector.

There are multiple reasons for the cost being high, one of them being the extremely low market competition in insulin production. Three companies – Eli Lilly, Novo Nordisk, and Sanofi – dominate more than 90% of the global insulin market by value. The World Health Organisation (WHO) is now hoping to drive down the cost of insulin by encouraging more generic drug makers to enter the market.

But the status quo demands urgent and desperate attention. Why are millions struggling to get this essential, life-saving drug, and how has it affected their lives?

Insulin — The Product

Type 1 diabetes is an autoimmune condition in which the body is unable to produce insulin, the hormone required to convert glucose into energy. Type 2 diabetes is characterized by the body’s ineffective use of insulin, and could be managed with drugs, medicines and lifestyle changes.

Dr Anoop Misra, Chairman, National Diabetes, Obesity and Cholesterol Foundation (N-DOC), explains,

Dr Anoop Misra“For type 1, insulin is the only treatment and is lifesaving. They would require daily administration of the hormone. Among type 2, about 30-40% of patients will require insulin in their lifetime.”

Naturally, part of the monthly expenditure of type 1 diabetics goes into buying insulin. It’s important to consider here that insulin is available in many types and varieties. Newer versions, called ‘analogs’, are much more expensive than regular or mixed human versions of insulin. Dr Misra says that newer insulins are 5-10 times more expensive than conventional insulins.

To quote an example, Huminsulin R cartridge (human) costs Rs 300, while Humalog Lispro (analog) costs Rs 690, more than half the former. Both contain 3 ml of 100 insulin units.

Then why not just go for the cheaper option?

Also Read: Oral Capsules Able to Inject Insulin Directly into the Bloodstream

Analog Versus Human Insulin

Much like a newer and updated version of anything, analog insulins offer some clear and obvious advantages over the older ones. While most evidence has been industry-funded and from developed countries, “It is believed that analogs help reduce hypoglycaemic events and weight gain, improve treatment adherence, reduce fear of dose adjustment, and improve patient satisfaction”.

FIT spoke to some type 1 diabetics to listen to their insulin routines and why they prefer one kind over the other.

38-year-old Harsh Kohli was diagnosed with type 1 diabetes when he was 11. His son, who is now seven, was diagnosed with the disease at the age of four.

Harsh with his wife and two sons.

Bearing the expense of two diabetics in his family, Harsh talks about his daily struggles and stresses. “I use insulin analogs because they provide better control of sugar levels. And trust me, we are being made to pay like anything.”

For example, he says that a popular insulin analog that was being sold for around Rs 900 a year ago, now costs Rs 1100. Another one went up from Rs 1600 to Rs 1900. All this in just one year.

“This cost is putting a strain on my mental health as well. I am always anxious. It’s an issue of constant concern for my entire family.”

Harsh Kohli“I am constantly thinking — what would the price be next month? Will I be able to afford it? In fact, I feel like I should start rationing insulin. But what if I end up with complications? Tomorrow when my son grows up, will he be able to afford his treatment?”

Harsh is on a ‘basal-bolus’ insulin routine. It basically involves taking a longer-acting form of insulin to keep blood glucose levels stable through periods of fasting (usually taken once a day) and separate injections of shorter-acting insulin to prevent rises in blood glucose levels resulting from meals. He buys the latter (Novorapid) online at a discount for Rs 1600 (MRP is Rs 1900). But even this is a ‘privilege’ restricted to those who have access to the internet, he adds.

He takes 50 units of insulin a day, each costs 6 rupees. His son takes 15 units daily.

Overall, Harsh spends a minimum of 7000 rupees monthly on just insulin, which adds up to almost Rs 85,000 a year. Add to this the regular check-ups, kits, other devices and comorbidities.

But insulin is available for free at government hospitals and at subsidised rates at Jan Aushadhi stores. So why is expense still an issue?

Also Read: FIT Quiz: What Are Some Common Symptoms of Diabetes?

Does This Free Insulin Really Come Without Cost?

Karan Chauhan is a 19-year-old college student. For a long time, he was procuring his insulin from AIIMS Delhi. To be fair, he had no particular problem with the quality he got, and neither was there an issue with the doctors there. Then what made him switch to private pharmacies?

He tells me that the only kind of insulin that was available at AIIMS was short-acting (which is usually used by children) when actually, most diabetics also need long-acting insulin. Moreover, government hospitals provide vials that were used in 1990s, which are now outdated. They don’t provide cartridges.

While they do claim to have a stock of insulin analogs, he has never seen them himself. “If they do have analogs, they are only available for the ‘poorest of the poor’ in very limited quantity. I’ve been told that if I can afford it, I should get it from outside.”

(Analogs may only be selectively available at AIIMS. Speaking to other people, I realized other government hospitals rarely stock these.)

Karan“I’ve seen poor people who come from far-away places, even Rajasthan, to get their insulin supplies. It’s very inconvenient for them, and they often end up spending a lot on just their travel.”

Karan made the shift to fast-acting insulin available in the market because the ones he was getting from the hospital were not working too well for him. “I am able to better control my sugar,” he says

Karan’s concerns with government hospitals are common with others I spoke to.

Dr Apoorva Gomber is a type 1 diabetic who has worked with the NGO ‘T1International’.

She tells me that government hospitals only supply basic or regular insulin, which may not be very effective today. Those who cannot afford to buy from outside, make do with whatever ‘obsolete’ version is available at these hospitals.

Her time spent at RML hospital showed her that it is common for nurses to say that they have run out of insulin. So even availability is a major concern.

Apoorva Gomber“To reduce the cost of insulin, an Indian company Biocon started manufacturing it. But again, it wasn’t as effective as the more expensive ones produced by the three mega companies.”

Another kind of insulin that is available at government hospitals is mixed insulin, where the issue is restriction and lack of flexibility in the daily routine. Mixed ratio insulins (which could either be 50:50 of short and long-acting insulin, or 70:30) are mostly prescribed to type 2 diabetics, and hardly ever to type 1’s. But why’s that?

In conversation with FIT, Nupur Lalvani, Founder of Blue Circle Diabetes Foundation (NGO), Certified Diabetes Educator and a type 1 diabetic herself, explained,

Nupur Lalvani“You are completely stuck if you are on mixed insulin. If you take one shot in the morning, you need to follow a strict and rigid schedule — eating at a particular time and only a particular quantity. Your day needs to be planned and there is no room for any flexibility. Most people end up eating what they want, which could make their health worse. In some cases, it could even lead to organ damage.”

So premixed insulin is not at advisable for type 1 diabetics. Basal-bosal is more effective, convenient and suitable.

But one thing everyone agrees on is that diabetes works differently for different individual. As Harsh Kohli says,

Harsh Kohli“No two people have the same requirements. It depends on several factors like age, gender, lifestyles, appetite and so much more.”

For instance, for a growing child who consistently feels hungry, it is difficult to adhere to the strict routine that a mixed insulin routine demands.

In such a scenario, it is absurd to expect individuals to be satisfied with the only option they are being offered. There needs to be room to make choices, to test what suits one better and to be able to afford it without worrying about having to ration insulin.

This is also why doctors end up prescribing insulin from private manufacturers to their patients, which is, as discussed, very expensive.

Also Read: “My Illness Is a Life Sentence”: Diabetics Talk Mental Health

The Way Out: Awareness, Accessibility, Affordability

With something as indispensable as insulin, the three A’s need to be guaranteed. As for anything else, the solution starts with awareness.

For instance, Nupur Lalvani explains that for many people, the regular insulin available in the government hospital might just work if they are educated about their diet. From her own experience, she has noted that a basic insulin regimen is not well-suited for a carb-heavy diet. With a low-carb protein-heavy diet, it could do its job without any inconveniences. So at least for the people who can make this shift, this is a viable option.

The WHO’s move to encourage generic drug makers to enter the market is a beginning.

Also Read: Diabetes Day: 17 Things Type 1 Diabetics Are Tired of Hearing