Interview: Insulin for Life
20 Aug 2013, 6:36 p.m. in Global Stories, Interviews by Elizabeth Pfiester
I had the pleasure of interviewing Ron Raab, the founder and president of Insulin for Life (IFL), and his daughter Tali Raab, who manages some of the media for IFL. Insulin for Life is one of the first projects I heard about when I began searching for programmes supporting people with diabetes around the world. As you can imagine, I was very excited to get in touch with the people behind the project and thrilled to hear first-hand how the programme started, what it does, and its potential to help more and more people who do not have access to or cannot afford insulin and diabetes supplies. One of the best parts about IFL is that it re-assigns insulin and supplies that would otherwise be wasted.
Ron, can you offer some information about your personal background and why you are interested in diabetes and the developing world?
I’ve had type 1 since I was six years old and I wanted to work in the area for a non-profit. So I got a job at what became one of the larger diabetes centres in Australia. When I joined it, the organization was fairly young and there was a lot of room to be developmental. I was what they called the Executive Officer and had a number of other roles including overseas projects in developing countries. My background is in economics, statistics and mathematics.
Can you tell me about the origins of Insulin for Life and how it has grown since it began? What does it take to keep the organization running?
At the organization where I worked we began getting input that stimulated Insulin for Life. We got information about a child that was about eight years old in one of the African countries. The mother wrote a letter that said ‘my child has type 1 diabetes and her wish is to live until Christmas’, which was about eight more months. At the same time I was aware that we were throwing away a lot of insulin. When patients change types of insulin, go onto the pump, go from a vial to a pen, or have gestational diabetes or pass away, there are often many vials or cartridges of insulin left that would be otherwise thrown away.
So that is the basis of the programme. Insulin for Life Australia and Global (www.insulinforlife.org) collects unopened, no longer needed and in-date (with at least 4 months to use-by date) insulin and test strips. These are donated overseas, following specific requests from recognised organisations and with an agreed protocol. We also get supplies from other sources, such as excess clinical trials supplies, etc.
We started to tell the diabetes educators and people at the clinic that when they put a patient on different insulin they should ask the patient to give us their excess insulin. It would otherwise be wasted. That’s the key thing. So we sent some to Africa, and then we got flooded with insulin and other diabetes supplies. I was interested in innovative cost-effectiveness approaches. From then it was a matter of organizing it and multiplying it, building it to get a team of people together.
We have a very good Board with a doctor, nurse, humanitarian aid worker, lawyer, and me. We have been together for over twenty years so it’s a very stable Board that works well. We all have other things going on so we aren't in it as a “normal” job but we all believe in it and we can see that we can save lives in a very efficient way and also learn a lot about the world. Our travel costs are either paid for by sponsors or by ourselves. We are a lean machine and our budget is less than about £60,000 a year which covers all transport costs and everything else.
The whole programme grew so eventually it came time to take it out of that organization and have its own name, etc. We became a legal charitable organization in 1999. Then the job was really to spread the word and to try and find people, like you, who respond to this sort of programme. It started to multiply by itself because there are people who look at the programme and say that they want to do it as well. They were motivated and interested and we would mentor them on how to do what we were doing on a daily basis – how to sort and store the insulin, how to deal with packaging issues. We would also help coordinate a place to send it to, somewhere that we knew was legitimate, and then let them do it on their own. In that way, others are then taking ownership of their own programmes.
Through the programme we began to realise that the majority of type 1s in the world actually die because they cannot access insulin. We are the lucky minority. Only the few survive. Families in the developing world often have to make a choice if they pay for the insulin or not. The cost of insulin is a huge percentage of a family income.
You mentioned that IFL works in various countries and partners with organizations who take ownership of their aspect of the programme. Can you tell me a bit more about the organizations you work in conjunction with?
We have 7 affiliates in Europe and North America. They are doing it at their own pace, choosing their own countries, asking us if they can’t find a place to send to. If there’s a crisis we might combine together and send. We help each other and keep each other informed, but at the same time we are all driving our own programmes with IFL Australia being the headquarters and IFL Global. We’re currently producing a handbook that we will be able to give new affiliates. It is growing and we want to keep it as a horizontal structure that is also grassroots.
IFL works also with International Diabetes Federation (IDF) member associations and clinics and hospitals in the developing world. We work with the IDF Life for a Child programme, as well as other sponsoring organizations. People come out of the woodwork and who want to work with us and support us, which is wonderful.
You also help out diabetics in emergencies. How does that work?
We have a formal agreement with the IDF for emergencies. The IDF decides what an emergency is. They will then ask Insulin for Life for help and they pay transport and associated costs for us to send the donated supplies to get to emergency locations as soon as possible. We can get it there very quickly, within a few days faster than many others who may send supplies for many medical needs because we are focused on things like insulin and strips. These emergencies include natural disasters, or man-made disasters such as economic disasters and wars.
Before IFL got involved in the camp in Ecuador, these kids were dying because there was no insulin.
-Ron Raab
IFL works with a diabetes camp in Ecuador which sounds similar to a camp I attended as a child. Can you tell us about the camp, how IFL supports it, and what attendees gain from the experience?
You were lucky enough to attend a camp that had supplies and that probably wasn’t even an issue. These kids at the camp in Ecuador would have died otherwise, without the supplies we donate. And the camps are a lot of fun, just like any other kids camp. They get an experience that is positively associated with their diabetes. In some countries children undergo a very negative experience. Some are taken out of school and left at home – they become debilitated because they don’t have insulin or have insulin only sporadically. Obviously this doesn’t allow them to function well. In the camp environment, though, they can meet other kids who have diabetes and, most importantly, they get supplies on an on-going basis. The kids also get the first diabetes education they have ever received. Their parents also get a break which is really important – they get a break from a disease they don’t understand.
Before IFL got involved in the camp in Ecuador, these kids were dying because there was no insulin. But we connected with the Fuvida group, who puts on the camp, and IFL is now keeping approximately 200 kids alive through this connection.
Insulin for Life has stories of inspiration and hope to share about the struggling children it supports. Here is an excerpt from the story of a 13-year old boy with Type I Diabetes and pulmonary tuberculosis. Before being treated by the pediatric endocrinologist who wrote to IFL, his blood sugars were very poorly controlled and he suffered the symptoms with no means to check his blood sugar levels.
‘’On my exam, I found Vishal to be thin-built and very skinny, with a weight of 32kg (the average weight for a 5-year old in the US). He has a bright face with beautiful big eyes, which stand out against his emaciated body. He has some shortness of breath and a fair amount of coughing, and has difficulty breathing at night, but does not complain about anything. He proudly tells me that he draws his own insulin, and gives his own injections.
I spoke with Vishal and his family, and asked if they would be willing to take four injections per day. They emphatically agreed, but made it very clear that it would not be affordable for them. I asked if they could buy a home glucometer, but I was told that with their limited resources they could barely spare Rs. 300 per month for his insulin (about $7 USD). I made a deal with them: I would pay for Vishal’s insulin if they paid for the glucometer test strips. I had several sessions with Vishal and his family, educating them about diabetes.
For the next few days in the hospital Vishal took complete charge of his diabetes. He drew his Lantus insulin along with Novolog, and gave himself five shots per day. He bought a sugar check home glucose monitor, and checked his blood sugar five times per day. He participated daily in the decision making process for his diabetes. He learned that the more food he consumed, the more insulin he needed, whereas if he exercised, his need for insulin would be less. He mastered the symptoms of hypoglycemia, and alerted the nurses appropriately for its treatment.
I also realized that he had significant shortness of breath and a cough, which required minor treatment. He appreciated being relieved of his shortness of breath and coughing, and started to enjoy a good night’s sleep. I feel that Vishal has a bright future. The only obstacle in his way is the cost of his anti-tubercular medicine, and an expensive disease: Type I Diabetes. It is hard for me to deny a good life to Vishal because of their economics situation. Unfortunately, the Government of India has no plans to provide free insulin for Type I Diabetics like Vishal.
I am appreciative of Insulin for Life for providing me with samples of Lantus and Novolog insulin, and syringes. Their support has made it easier to treat patients like Vishal, and to help provide a brighter future for many impoverished diabetics suffering from a very treatable disease. ‘’
How incredible to hear such feedback about what a difference IFL is making. Thinking about Vishal and others like him, do you think 100% access to insulin is feasible? Is this best attempted through sustainable health system improvements or continued/increased donations?
The most important determinant is cost. There is cheaper insulin but there are issues of quality assurance, etc. Animal sourced insulin, which is much cheaper, is acceptable in many situations. The best thing that could happen to type 1 diabetics or insulin-requiring diabetics in the developing world would be for a significant decrease in cost. Beef insulin in India used to be about $3-4 for a month supply, but then this was withdrawn and the next cheapest version was pork insulin and was about double the price. That led to deaths due to affordability issues. Therefore, making generic type insulin would be a major breakthrough. If insulin became a cheap product it would be a completely different dynamic.
What do you think is the most important struggle facing type 1 diabetics in the developing world that we need to be aware of?
Essentially most people do not have the luxury of enough insulin. The main issue is cost and availability. Many who live in countries where the cost of insulin and supplies is not an issue do not understand that insulin is an (unaffordable) “luxury disease” for most. For these kids in the developing world it is an issue of life and death.
What kind of progress do you hope to see in the future for type 1 diabetics in the developing world who do not have access to insulin, supplies, or education?
When it comes down to providing insulin and supplies to people in the developing world there are no organisations we know of, apart from ourselves and Life for a Child, that does this type of work. There’s some talk about providing cheaper insulin worldwide, but these programmes need to keep up the momentum. There’s a lot of room for expansion to more countries and to help more people. It’s also exciting because there is still so much room for creativity and innovation.
Do you think that there’s any hope for a sort of big grassroots movement, as there was with combating HIV/Aids, to raise more awareness and funds? It just seems like such a do-able thing, to get access to insulin for everyone. Of course it’s not simple because there needs to be continual treatment, but is there anything we can take from other movements?
Absolutely. I think the thing with, malaria, for example, is that it is preventable through things like selling nets. But I think what you’re getting at is that with HIV, the movement became viral, in a sense. Everyone knew about it and I think that is what we need. We need people to realize how little access there is to insulin, especially given the size of the T1 and T2 epidemics. We need to connect with people in a way that they can also become emotionally invested.
How can readers help and get involved in Insulin for Life or make a difference to IFL’s cause?
People can do two things to support IFL. Firstly, visit our Facebook page at: www.facebook.com/InsulinForLife. We just started to energise it and are amazed by the accelerating growth. We obviously have a winning cause and this is because people like you are finding ways to get the word out to their Facebook contacts, so please do this by sharing, posting, commenting and just generally engaging with us and providing feedback.
Secondly, consider contributing the sum equivalent to two cups of coffee a month (about US$8) for a period of time you are comfortable with via our web site. We’re after people who want to help and be involved in this way, so keep getting the word out there!
Thanks so much to Tali and Ron for taking the time to talk with me and tell me more about this amazing programme that is saving so many lives.