Interview with Erin Little: Sucre Blue and Diabetes in India

It hasn’t been long since I began this project and started my full-on search for people and organizations dedicated to helping type 1 diabetics in the developing world, but already I am discovering more and more individuals and initiatives that have a passion for this aspect of diabetes advocacy, which is both exciting and encouraging. One of those people is Erin Little, founder of the Sucre Blue project. Erin hopes the project can serve as a pilot for diabetes health diagnosis and management in Bangalore, India that could possibly be transferred to other parts of the world. Erin is a type 1 diabetic with a wide variety of experience in social entrepreneurship and social media marketing. During our conversation we discussed the roots of Sucre Blue, the issues faced by type 1 diabetics in India, and where she hopes to see the project go in the future.

Can you tell me a bit about your background and why you are interested in diabetes and the developing world?
I grew up in a fairly conservative society in Kansas. I was diagnosed with type 1 diabetes when I was a little kid and I didn’t meet another diabetic until I was much older. I never spoke about it. A lot of my friends didn’t know I had it. I had to be inconspicuous in school and work environments because they weren’t very sensitive or supportive, which caused me not to talk about it very much. So in some ways I am the least likely person to be doing this work, but I co-founded a company in Chicago called Portapure that designed and manufactured affordable water purification products. I had been doing that and had done healthcare consulting previous to that and was also involved with some international development organizations that do impact investing and social enterprises. I was really interested in doing something diabetes-related in India, where I was going for my fellowship, but it’s a very small group of people that do anything at an international space, which can be frustrating.

When did the Sucre Blue project begin, and how did it come about?
As a type 1 diabetic I was having my own issues finding adequate and affordable care in Chicago. I thought, “If this is what it’s like for me…,” so I started doing research about what it’s like for people around the world that have diabetes. I was finding a few videos and learning that 60,000 a year in Kenya are dying thanks to type 1 diabetes. In India they don’t even have access to that kind of data. It’s a very different kind of set-up in both India and China, as with most places in the developing world. They are lacking data for type 1 diabetes. Often, because of the symptoms that are shown, you die before anyone realizes you have type 1. They think you have the flu, and they put you on an IV that is full of sugar and then you get even sicker.

We realized with Portapure that it was very difficult to sell products if you don’t understand the environment specifically. Country-to-country there are so many adjustments that need to be made and it is very difficult unless you’ve spent a lot of time in each country. Anyway, I had friends in the start-up community who knew I was looking for something that was related to international development and was hands-on and on the ground. My friends at Northwestern had done research into affordable diagnostics for diabetics, so things like reducing the price of blood glucose testing and seeing what kind of results would come out of that, for example, or how to build a business model around it. Two friends of mine that were part of that research team approached me with the data about two years after it had been conducted. They are management consultants working at big healthcare companies now and they were unable to do anything with the research. By that time I had been offered my fellowship to live in India, but they asked if I wanted to use their research to make this happen and I did.

What are some of the obstacles you found for type 1 diabetics in India?
It is crazy to think that even now the oldest diabetic living with diabetes in India is 65. She is famous and seen as a success story; although in other parts of the world more diabetics live much longer.

I even had to re-train myself to handle my diabetes in India. You can’t even buy the same products there. I was on an insulin pump but decided to go back on injections of Lantus and Humalog before I left in case the pump broke down. In India, most diabetics cannot afford those types of insulin so they are on regular insulin which is still too expensive. NovoNordisk has a programme that helps children with access to free insulin until they are 18, but unfortunately the same kind of problem continues where you ask “what do you do after you’re 18?” Most people do not have insurance. I feel like I’ve dealt with access and affordability in the states, but it was so shocking to see diabetics working against so many different issues. No one has the money for these blood strips so most of the patients I worked with in India would show up and would have no blood glucose numbers. The doctors can give them a checkup, but you can’t really guide someone’s regimen that well if there is no affordability and no education or awareness.

Eighty percent of people in India do not have insurance so the prices are much lower because of the lack of insurance. Still, for one insulin pen of Lantus you would pay about $20, but for the amount of their income they have to spend on the medication it is not affordable. Regular insulin is cheaper so it is what most people are on unless they are pretty affluent. I met a few type 1 diabetics there that had started on the pump and I would say that they were paying cash for everything. In terms of diabetic treatment, specifically blood glucose strips, you cannot even buy products outside of Mumbai, Deli, and Bangalore. On top of that, they are selling it in a way where someone cannot even afford an entire container of blood glucose strips. The average price is about 50 cents per strip.  The products are also made in Scotland or other countries and there is the cost to ship them over as well.

In the developing world there are also a lot of issues with corruption and doctors egos as well as getting people to work with different stakeholders. India is very political. To get permissions to go into these villages I had to get permission from 30 or 40 people. Even if you are doing something entirely positive for the community there are a lot of barriers. The public health system needs to be involved enough or else they will shut you down, for example. Doctors are also required at the end of their residency to go spend two years working in a village. A lot of doctors will collect their money and not actually stay in the village, so obviously there are not enough doctors in rural areas.

Is that what you would hope Sucre Blue would do, provide supplies?
The biggest thing we are doing is training and employing women in low-income communities to be able to screen and diagnose for these non-communicable diseases, so specifically diabetes, hyper-tension, and cardiovascular disease because you use very similar diagnostics for those diseases. It is very easy to screen for type 2 diabetes and you can tell fairly easily if someone is at risk. For children, I think it is more about the awareness and the education. We do screenings for children but it is a lot more difficult because India really functions as a family unit and through communities. If you are educating an adult on diabetes, telling them the risk factors and costs and diet, there are likely going to be three or four children nearby listening. So being able to talk to the entire family is really important.

Can you tell me about the organization in India that you work with?
Jnana Sanjeevini is the organization I partner with. It is based in Bangalore but works with surrounding villages. It is a leading institution in diabetes care and prevention in India with comprehensive and multidisciplinary treatment of diabetes and other endocrine metabolic disorders. My friends at Northewestern knew the organization and it really has the local knowledge and tools to make this issue better. They have an amazing reputation. The man that runs the clinic is Dr. Srikanta. He doesn’t have any family or children of his own but spends every hour helping his patients, sometimes seeing them until 2am. He is so dedicated and is an excellent doctor. I think what really sets doctors about is their ability to care about people.

The clinic has a view of “sufferers as healers” and they staff a lot of medical professionals who are also diabetic. They are focused on making sure that their patients can work with medical personnel who understand and empathize their struggles. If you don’t have people that really care and see this as an opportunity to be leaders within their community and understand how badly this is needed, it won’t work. It breaks your heart when you go and talk to patients who have no opportunity to get married, for example, because their diabetes is thought to be a curse. So we are only working with women right now, the clinic is 80% staffed by women, which is a big deal in India because most women don’t get those opportunities, and they really care about doing something positive in their communities and changing things.

What is the most challenging thing about trying to get this project off of the ground?
This model is meant to be self-sustainable within four years, so totally self-funded. But it takes a long time to get access to the data. We are training women and sending them out in the field to screen and diagnose these diseases. They follow up with education, coaching, talking to them on the phone, and helping them get affordable products. On top of that, all the women have an SMS technology. Whether you are recording someone’s daily logs or taking a patient history, the information will go into an open-source software so that any researcher in the world will have access to the data. So we’re trying to build a database to access more information about people in villages because they are so hard to reach otherwise. Thirty percent of the population we were working with in the villages is being diagnosed with type 1 or type 2 diabetes, which is so different from the four percent statistic that the government is going off of. We are also seeing how this pilot can be transferred into other cultures.

So right now it is a model that you are exploring to see if it is transferable?
Yes. And the thing is, diabetes education can be transferred anywhere. What is difficult is the financial model. The programme is set up to be very lean because we work with existing clinics so that we do not need a lot of extra financial support. We want to reach the maximum amount of people and that is the priority. The Indian government recognizes that this is a problem and they have developed a low-cost prototype, but working with the government is not easy and there are many challenges with that. There are also not NGOs that work with diabetes. There is one that does screening, but there are no follow-ups, so there are multiple issues here but right now we are in the stage of collecting data and getting organized.

I have a million more questions, but it’s time to wrap up for now. Thank you so much for taking the time to chat with me about your experiences and efforts. Good luck with everything.

You too, and thanks.

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2 thoughts on “Interview with Erin Little: Sucre Blue and Diabetes in India

  1. Pingback: Reflections after the Young Leaders in Diabetes Training | T1International

  2. Pingback: T1D Hero / Erin Little | Upside Down Plane

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