Life for a Child - San Francisco Media Event | Life for a Child with Diabetes

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Phil Riley: [0:01] I'd like to welcome everyone to the first of our Diabetes Circle Media Fora. Hopefully, this will become one of a series in themes related to the World Diabetes Day theme that takes place every year on November 14th.

[0:16] Now, of course, diabetes doesn't last a day. Diabetes is every day. And there are two people with me today that can tell us a lot about what it's actually like to live with diabetes in the developing world. And I think this is a very important message to share.

[0:33] We have two real champions of diabetes, particularly for children and other people living with diabetes in the developing world. We have with us Graham Ogle. Graham is the Program Manager of the International Diabetes Federation's Life for a Child Program. And we have Ron Raab. And Ron Raab is the President of the Insulin for Life program.

[0:56] What I'd like to do is-I won't spend too long introducing them. I'd like to hand it over to them, to let them just tell you a little bit about their respective programs, what they do, a little bit of their view of diabetes particularly type 1 diabetes in the developing world, and then open that up for the possibility of questions. My role will to be facilitate some of those questions and ask a few questions that I think might be poignant and helpful, and if other people are here that can help bring out some of the facets of these programs during questions.

[1:30] So, with no further ado, I'll hand it over, then, to Ron Raab, first. Ron?

Ron Raab: [1:35] OK. Thanks, Phil. Well, you've asked me what Insulin for Life does and why it does it. The reality is that you could almost call type 1 diabetes that's the insulin dependent diabetes that has onset in young people you could almost consider it to be a luxury disease. So, people in developed countries have access to this life saving medicine. But most people in developing countries, where they have to pay the full price or for other reasons, lead a very tenuous life and die, often, a very painful and sad death, because insulin is an essential medicine to stay alive for these people.

[2:27] So, having done some international work in my professional life, and also perhaps understanding it from the perspective of a person with diabetes, as I have had diabetes for 50 years and often imagined what it would be like not to know that there was another vial in the fridge it must be a terrible feeling I became aware that insulin is often being wasted developed countries, for all sorts of reasons. So, in 1984, I set about collecting what I thought would be small amounts of insulin and sending them to organizations which I knew to be reliable.

[3:12] Well, from the first vial in 1984, the insulin pretty much flooded in, which was telling us that there was a lot of insulin available that would otherwise end up in the rubbish bin. So that's the basic idea of Insulin for Life. It collects Rolls Royce insulin or Lamborghini insulin if you like in date, unopened, and no longer needed. So it's really, the next destination is the rubbish bin.

[3:40] Now, you might ask, "Why is it being wasted?" Well, insulin is wasted for all sorts of reasons. There might be leftovers from children's camps. There might be supplies that the nurses have ready to give to the patients which are beginning to approach their use by date. And then there might also be people who have changed their types of insulin, and the nurse carefully screens that person and asks them to bring in their in date, unopened, no longer needed insulin.

[4:13] Now, that's the basis of the program. And I guess it's a very simple idea, but what we've been able to do is organize that, very professionally, high standard of quality control. Every vial's batch number is recorded. We're very carefully where we send it. We have a signed agreement before we send these things overseas.

[4:39] So it's a simple idea, but I think we've turned it into a reality. And it's actually saving significant numbers of lives in developing countries people like me. People who are listening to this broadcast, if they are living in a developing country, they would be struggling, and they may not be alive. For the numbers of people we've been able to supply, it's this insulin that's keeping them alive. And it's also test strips as well. We focus on insulin and test strips.

[5:09] So that's the basic model. Insulin that would otherwise be wasted is collected by us in six centers around the world: UK, Austria, Germany, United States, New Zealand, and Australia. The headquarters are in Australia. And we're able to respond to emergencies. We always have a supply ready to go the next day. And we also have long term, sustainable programs some countries we've been involved in for many years.

[5:38] And that's it, in a nutshell.

Phil: [5:41] Thanks very much for that overview, Ron.

[5:45] This year is the International Diabetes Federation's Year of the Child, and that's where the focus is. So we'll go to Graham now to hear about your program. And perhaps, Graham, you could give a sense of how many children there are in the developing world with diabetes at present.

Graham Ogle: [6:02] Thanks, Phil. Children who develop diabetes, they'll be quite well. And then, over a period of a couple of months, they'll start to lose weight and pass a lot of urine and drink a lot. And then they'll go into a state called ketoacidosis, and coma. And at that stage, the diagnosis is usually made. And then, without insulin, these children will die within a week. And then they face that peril all through their lives, that if insulin is withdrawn for more than a few days, they will die.

[6:34] And we know, from reports in many developing countries, that some children die undiagnosed. Other children die well, the diagnosis is made, and then the family has to make the choice: can they afford to pay for the insulin? In some countries, the government's able to pay for insulin, but in other countries, the government can't. And some families have to make the terrible choice between: do they educate the other four children in the family, or do they provide insulin for the child with diabetes?

[7:08] One of the countries our program helps, for instance, is in Bolivia. And the average wage in Bolivia is 70 US dollars a month. And the support that we provide, in partnership with Insulin for Life, is worth $84 a month. And so you can just look at the numbers. And do the families spend all their income on medical care for one particular child, or do they spend their income on food and education and health care for the whole family?

[7:34] So it's a terrible dilemma. And the IDF Life for a Child program started seven years ago in response to this. And we started in three pilot countries in the Western Pacific, and now we help children in 17 countries around the world. And we're supporting close to 1, 000 children now, total, in these countries.

[7:51] And what we do is we support existing diabetes centers. We don't try and go in and set up a new program in these countries. There are doctors and nurses in these countries who know what to do, who just don't have all the resources to do what they'd like to do. So we raise funds, which are then used to purchase insulin and test strips or pay for diabetes education services in these countries. And then these centers are able to care for their children adequately.

[8:20] And then what's happened is that once we get the capital going, they're able to then move out and help centers in their regional areas as well. And so, in some of the countries where we work, like Bolivia and Rwanda, it's now helping all the children and youth with diabetes in the country.

[8:35] And we also provide funds for capacity building. We help them set up diabetes registers to help with getting their data together, and to take whatever care they can provide to take them to a new level. In some countries, children with diabetes have never been able to do self monitoring, to be able to check their blood sugar level two or three times a day, which is standard treatment in the rest of the world. And so we've been able to introduce self monitoring in some of these countries as well.

Phil: [9:06] Thank you very much. Are there any immediate questions? I have, perhaps, some obvious questions, but I'd like to, obviously, open it up. Yes, please?

Kaku Armah: [9:17] Thanks for a great...

Phil: [9:19] Can you just state your name?

Kaku: [9:20] Sure. My name is Kaku Armah, and I write for a diabetes patient newsletter that's based in San Francisco. It's called "diaTribe." The website is www.diatribe.us. And first of all, thank you both for a great introduction to the program. My question was, well, how are the countries chosen, that you have these programs, and what was the selection criteria?

Graham: [9:46] Partly it's self selection, that the country will approach us with a need. And then it has to be a recognized diabetes center that we cross verify a few different ways. And then we send them a questionnaire. They have to explain what their needs are. And then, if we see a match, we'll come to an agreement with them about what we provide.

[10:07] And we provide a specific set of supplies for a specific set of the most needy children, and they provide a list of those children. And then, each year, they have to provide us with an annual data sheet on each child, which actually helps their records and improves their data collection, and also a financial acquittal of the funds and other reports. And then, if it goes well, we'll continue our support.

[10:32] Because we're working with reputable centers in these countries, and sometimes we work through Rotary or HOPE Worldwide, but usually we work directly with the hospitals concerned. And the financial side of the process has gone very well so far.

[10:47] And so we welcome requests from countries where we're not helping. And we're currently exploring. For instance, we're helping in 17 countries, but we're just about to start in Vietnam. We're looking at Honduras as well. And yesterday, I learned about needs in Uganda. So we'll be looking at extending the care to those countries.

Ron: [11:09] Sorry. In the case of Insulin for Life, we supply about 10 countries on an ongoing basis. We also respond to emergencies, in conjunction with the International Diabetes Federation. The countries we supply on an ongoing basis, the organizations involved, a significant number of them are diabetes associations, member associations of the International Diabetes Federation. And also, we supply a number of hospitals and clinics again, recognized organizations, reputable.

[11:48] And because I've worked professionally in diabetes and have quite good networks, it's fairly easy to work out if an organization is reputable. We don't supply individuals directly. We only supply organizations. And we've found, as long as you do sifting that way, it's quite manageable in terms of reliability of people at the other end. People are always concerned about inappropriate use and so on. To the best of our knowledge, that hasn't been a major issue for us.

Alicia Jenkins: [12:36] Alicia Jenkins from Melbourne, Australia. I am a diabetes specialist, looking after adults, mainly, with type 1 diabetes. And in Australia, where there's excellent medical care and availability of insulin and other related diabetes drugs and supplies, I have patients who are well after, as Ron, 50, 60, 70 years with type 1 diabetes. I'd like to ask Graham to give us an estimate: within the countries where access is not so available, what's the life expectancy of children diagnosed with type 1 diabetes there?

Graham: [13:17] It's been estimated in rural Mozambique that it's seven months, on average. I think my estimate in Africa would be no more than a couple of years, on average, in these countries. Even in countries where the children can access insulin, if they have insufficient insulin or they can't be monitored, by the time they're 16, 18, 21, 22, they're developing eye complications and kidney complications.

[13:45] And I was in Bolivia a couple of weeks ago, and I saw 16, 17 year old girls who had already had treatment for laser retinopathy. I saw a boy in his early 20s that had to drop out of law school because he had cataracts and couldn't see to read his papers. And I saw a young lady in her 20s who had significant renal disease, who most likely will be dead in five or eight years from her renal disease. And so, even when there is insulin available, without monitoring, the complications come quite quickly.

[14:21] But I think, in some African countries, there are almost no long term survivors. If you're looking for children who have survived for 10 years with their diabetes, there's a handful at best. But that's changing now with the program.

Ron: [14:38] If I can just add to that. I mean, as Graham said, there's a sort of situation where a child has some supply, but it's not enough. So the situation then is that they're taking much less than they need to stay healthy. And then the process of eventual death or complications, in the late teens, early 20s, is a terrible journey.

[15:12] I have experienced having not enough insulin, or not taking insulin by noon the next day. I take four shots of insulin a day. And on the occasion I didn't have my insulin with me and so on, and by 12:00 the next day, you can feel the body closing down. It has a particular sensation. And it's a very unpleasant way to live, of course. And having then projecting that one would live with the fear that there's no insulin around in the fridge, there's no insulin to be had for the next month.

[15:50] So you go through this process for a month. And then your parents, who love you and so on and have got three or four other children, are able to get another vial, which takes you through another month. You try and stretch it out.

[16:05] I remember hearing a story of a group from developed countries who were traveling through Africa, and they knew of a family that needed insulin. And so, before they left Europe, they bought two or three vials, something like that, and they took it in their backpack.

[16:24] And they ended up in this dusty, old road in a village. And this kid was waiting for this insulin. And just as they went to give it to her, they dropped it and it broke. And that really gives you the feeling of what's involved. I mean, that child died, I understand, the next year. That story was written up in "Diabetes Forecast, " a magazine of the American Diabetes Association, in the 1980s, if I recall.

[16:56] I mean, these stories are going on all the time, of course. And the challenge, I think, is to find viable ways of improving this sort of situation, and that's what we're trying to do.

Manny Hernandez: [17:10] I am Manny Hernandez, with Tu Diabetes and EsTuDiabetes.com. They're two communities who have people touched by diabetes. And certainly, in the case of the first one, it's one where most of the members are from developed countries: US, UK, Canada. The second one, we have a number of people who are from developing countries. How can people in these communities, and other people outside, regardless of having or not diabetes, help each of your missions? What can the individual do to help you accomplish what you do? That's one question.

Graham: [17:45] I think, for the Life for a Child Program, if they're in a developing country which has great need, they can speak to their center about approaching us to see whether we can provide resources to the center. And once we get a new request, we then have to go and find funds. But we've been managing to find the funds as we go along. So we can't help individuals in developing countries; it becomes too problematic. But we can help centers, which can help those individuals.

[18:12] For your members in the developed world, if they'd like to financially help, they can sponsor a child. And that takes a dollar a day, $365 a year. And they can sign up over the website, www.lifeforachild.org. And in America, the donation's tax exempt. In some other countries, it's tax exempt as well.

[18:37] And then, if they become a sponsor, they don't actually sponsor one individual child and get a picture of that child because it's too problematic ethically. Some of these children are very marginalized, very unwell. A few of them die. And so we don't want to link individuals up with individual children. But we can link people up with individual countries and provide updates for them.

[19:00] And that's the bedrock of our program. The Life for a Child Program receives financial support from various associations and companies, but the fundamental funds that we have come from individuals and their families with diabetes. So these are people in Australia or America or other countries with diabetes who have decided to sponsor a child. And that's how we got going, and that's how we continue to move forward.

Ron: [19:28] And in the case of Insulin for Life, we of course are seeking insulin and test strips, in date, at least for months to go, unopened and no longer needed. We have a center in the United States, so we're very pleased to be able to receive the insulin there.

[19:52] We seek some contributions toward operating costs. But we also seek contributions from recipient countries towards the operating costs. This particular model is a partnership model, so the recipient country usually makes a contribution to the transport and handling costs, which come to about $2.75 US, something like that, per 10 mL of insulin so, for just under a month's insulin. So we partner with organizations in that way.

[20:27] But we also send supplies in emergencies. And we cover all the costs. We are happy to start up new projects in countries and cover the costs until they can get to a stage where their patients, or the person with diabetes, might make a one or two or three dollars' contribution. Perhaps the one who has got a bit more financial ability will make a little bit more, and that will subsidize the one who doesn't have as much. And that's organized by the organization we supply; we leave those details to them.

[21:00] But I think one of the very positive aspects of the way Life of a Child and Insulin for Life work is that we partner in countries, in some countries, as well. So our insulin, we will send the insulin to certain countries, and Life for a Child will fund the transport and handling costs. So, in those sorts of situations, the patient may not be making any contribution, and the centers are getting the insulin effectively for free. And Life for a Child is able to source insulin at a very reasonable, or cheaper, price than I think is able to be sourced elsewhere.

[21:41] So it's a wonderful partnership. And we have certain abilities, which we focus on, and Life for a Child has certain abilities that they focus on, and by cooperating, we make a whole package, which has a lot of strengths.

[22:00] One of the big strengths for us is that we don't have the focus on detailed monitoring of what happens to the insulin and who gets it and so on, whereas Life for a Child has wonderful monitoring programs, so that we know that our job is to collect it, store it, and send it. And we know that when it goes as part of a Life for a Child project, at the receiving end, everything is in order, and there's a very robust monitoring.

[22:32] So we really have a wonderful, complete package that way. I mean, if we took on that role we have limited staff and so on, and so it's wonderful to be able to cooperate in that way. By cooperating in this way, the person at the receiving end is the beneficiary, and we can do things much more efficiently and cheaply.

[22:57] And I also think that the model we have put together has great potential to grow. We've got systems in place. We've done the hard work to establish the rules and the infrastructure and so on. And now, I think we've got a clear, blue sky ahead of us where we can grow.

[23:17] And I do think there are unique factors about the way our organizations work, which really are a model for many other programs. I mean we're living in a very changing world. We all know there are enormous issues of resource usage, resource wastage, the whole green issues, climate change issues, we're very aware of. And I think we are also a model for the sensible use of resources.

[23:54] And it doesn't make sense to buy a car and then, because the person who purchased it can't use it, you don't go and then put the car in the tip. It doesn't make sense. You'd be regarded as stupid. But yet we do that, to some degree, with medicines.

[24:11] I mean, you can't generalize, because all medicines are different, but in the case of insulin and test strips, I mean, in our own country, Australia, as part of the general government system for the use of blood test strips, the established systems were that when these strips couldn't be used, and there was perhaps something wrong with the packaging but the strips were OK, or they're approaching their use by date, or they're a withdrawn model, the protocol was to destroy them, and to pay a lot of money to destroy them, because the accountants wanted to make sure that this hadn't being abused and so on. So these quite large quantities of test strips would go to a place where they were incinerated.

Phil: [25:02] Manny, you have a second question.

Manny: [25:06] It was real brief, to Dr. Ogle, major challenges you have run into while trying to set up assistance programs in certain countries, like political or economical or any other kind.

Graham: [25:20] I think there are challenges with customs, with sending supplies in, and with actually getting care around the country as well. But they're challenges that the local doctors will knock off bit by bit.

[25:37] But there are still problems, like we had an offer last week. In South Africa, at the moment, there's 140, 000 vials of insulin on offer, at a very cheap price, and this insulin will expire in eight to nine months. And the question is: can we get that into other countries where it can be used? And some countries have already told us, unfortunately, they could desperately use the insulin, but their government will not approve. It'll just take too long to get the supplies in.

[26:08] I heard yesterday, Bolivia can take some of this insulin. So I have all this insulin that I'm trying to use. And this company has offered this insulin at $2 a vial, which is very inexpensive. And it's perfectly good insulin from one of the major manufacturers that's going to expire in eight months. But I know already that there are certain African countries I won't be able to get that insulin into because the government rigmarole is too long; $20 million of insulin.

Kaku: [26:43] So this is a question from diaTribe once again. I wanted to find out about the rate of increase of type 1. I mean, you probably can't generalize for the whole of Africa, but maybe you could pinpoint certain countries where it's really high or really low, and just try and get a sense of sort of the next steps for both projects. And maybe you can speak to the sustainability of the projects.

Graham: [27:08] Type 1 diabetes is increasing about three to five percent a year in almost every country where there's data. In many African countries, we don't have data. We also know that the incidence of type 1 diabetes, it's much more common in the temperate Western countries than in Africa. And that's good. So that the incidence of diabetes is possibly five or eight times higher in America than it is in many African countries.

[27:35] And that's good because it means that there is fewer children and youth with diabetes, but of course if you are the one who gets diabetes anyway, those number don't mean much to you.

[27:44] In terms of the long term sustainability, we are working with companies. One of the strip manufacturers has agreed to provide strips for us, to provide free meters and strips at 10 cents a strip for three years for three countries. And this is quite a break through. We're hoping that other companies will follow through with similar initiatives.

[28:09] At 10 cents a strip, that's becoming affordable, while at 70 or 80 cents or $1.00, generally for these families to buy strips, they have never been able to buy. You might have heard that by 50 or 25 for a vial and they don't have that sort of money, but at 10 cents a strip, we can sustain that.

[28:29] So there's a longer term plan to work with the major insulin and strip manufacturers to reduce the price to a point where the countries concerned or where a program such as ours can pay for these supplies on an ongoing basis.

[28:44] We know the numbers will rise as more children, as the incidence rises, but also as more children stay alive. That's a problem that we'll have to manage as we go along.

Ron: [28:56] In our case sustainability, what we try to do with the recipient organizations is that we reach an agreement on how much insulin we will aim to supply for the year. Then we just allocate it and send it. We do that from year to year. So, once we have the structures in place, our job is just to continue obtaining it and storing it and sending it. It becomes just a very straightforward logistical operation.

[29:31] There is quite a bit of work in setting it up in the first place. We send a trial amount to make sure it works and then we build on that. I recall a country in Africa, Tanzania, where we were sending supplies that each time they went there, the doctor involved had to go to the customs authorities. It would be a different person one day and another person. It was all lots of red tape and that sort of thing.

[29:59] But then he got access to the Minister of Health, who was convinced of the viability of the program and then gave him a dispensation. So that now, whenever the supplies go in, there's no bureaucracy. There's no red tape. It's just within the customs log if something comes from Insulin for Life, it's allowed in.

[30:19] So, once you establish these routines, it's just a matter of just ticking over.

Kerrita McClaughlyn: [30:26] Hi, Ron. We have a Skype Cast question for you. You mentioned a collection center in the US for insulin. Can you tell where that is and how individuals can send in insulin?

Ron: [30:38] OK, well thanks very much for that question. It's wonderful to know that there are people out there who want to help in that way, because it really does mean saving lives. We have a center in Oklahoma. I'll give you the address.

[30:56] Insulin for Life, USA.

[31:03] University of Oklahoma.

[31:05] Harold Hamm Diabetes Center.

[31:11] 941 Stanton L. Young Blvd.

[31:22] Oklahoma City, OK 73104.

[31:28] And that center is headed by one of the board members of Insulin for Life who lives usually in Australia. She's a diabetes specialist and she is doing some projects in the United States. She manages that particular center.

[31:45] It will be in good hands. It will be stored at the University of Oklahoma. It will be sent. Generally, we are sending from Oklahoma to Central America, although some does go elsewhere as well. But we've been very careful about setting up a US office. We want to do it properly. We probably reached the, as they say, the tipping point now, where we can deal with these sort of offers that are coming through in an organized way.

[32:14] We've got government charity status in the United States. We're hoping to go for tax deductibility in the United States, which will be a marvelous achievement. I believe that the forms you have to fill in are about the size of a telephone book, but we'll take that journey. It will be interesting to see where it goes.

Phil: [32:33] Ron, can I ask you a follow up question, then. I've heard you asking for in date insulin and strips, but any strips. What about the monitoring devises themselves?

Ron: [32:44] Right well, I think as Graham has also experienced, the absolute priority is the insulin and the strips. There are often a lot of monitors available. The problem is the ongoing supply of strips. We actually have a large number of monitors sitting in Oklahoma, which we can't use. There's no demand for them.

[33:10] So, one of the scenarios might be a clinic in Equator supporting say, five or six people with type I diabetes and the clinic may have the monitors. They will distribute those monitors to those five patients and when they need more they will call on us, but it's always the strips. People rarely ask for monitors. They ask for strips and ask for insulin.

[33:37] We incidentally get monitors and insulin pens and syringes and finger sticking devices and lancets, incidentally. It just floods in. And we do send those often by sea mail because it is cheaper. But we don't overtly ask for those items. It's the insulin and the strips.

Phil: [34:02] Another question in the room.

Kaku: [34:05] So this question is regarding just the economics. So in the US, the developed country, where sort of resources are not scarce, there's problems with reimbursing principle primary care physicians and endocrinologists because treat diabetes is not really a procedure driven thing.

[34:27] So, it's great that the insulin is getting to these countries where it is needed, but what guarantees are there that we not going to have to deal with a bottleneck where we don't actually have to teach how to use the insulin. Insulin initiation is really hard.

[34:46] For Type Is it's absolutely necessary so that they... It's more of a "you take this or you die." About type 2s, I'm not sure there is any focus with either program for type 2s. Maybe you could speak to that as the whole issue of finding physicians who are willing to spend the time to teach insulin initiation.

Graham: [35:10] We only work with diabetes centers that are already established. There's often not many, but there are doctors in every country who know how to prescribe insulin and who are passionate about caring for people with diabetes. And they will often educate themselves or in most cases have at least one or two diabetes educators with them.

[35:31] So they are the ones that we support. And then essentially evangelize the rest of the country, by bringing in doctors, by training them. They'll hold courses and send out education materials. I've been to, like I know...

[35:47] For instance, in the Congo, which the Democratic Republic of the Congo, one of the most poorest and troubled in the world, they are producing their own education materials with their own graphic design, in French and in the local variant of French for both children and adults with diabetes. And they do that on a very low budget. They have the capacity and the passion to do that.

[36:12] So there are these champions. You're right. They're often not there and when I was in Bolivia, in one city the five youth with diabetes were essentially caring for each other. There was no doctor in the city who had any interest or knowledge in insulin treating. But one or two of those can go to another center that had been down there for training and these are lay people with diabetes and then they go back and they educate the other youth with diabetes.

[36:38] So, people will find a way.

Ron: [36:40] Could I just also give two examples? I remember doing some work in the Philippines, and I went to the leading hospitals in Manila. The people who were in charge of education there had been to the best education courses in the West. Canada, Australia.

[36:58] And they had patients who were able to some of them were able to afford insulin but there was that group at the bottom who, even though they were the most wonderfully educated people in diabetes, they just couldn't access strip insulin. So you can have wonderful education and just don't have the money for the ongoing supply.

[37:18] So that was one example of sort of one extreme of the sort of situation that occurs. Another example is in Uzbekistan, where a very large number, a very high percentage, of children die. And it's like it's fallow, the soil is dried out and there's no life for people with diabetes in some of these places, Type I diabetes.

[37:45] But once some insulin gets there and we're actually sending insulin to six centers in Uzbekistan once insulin gets into those outer areas, suddenly it's like life springs up, because people see an opportunity. And I think that's what Graham is saying as well.

[38:04] These four or five people with diabetes who are supporting each other. People want to live, if they're given a chance. And they'll clutch at straws and they'll want to find ways doing it. So when we started to deliver insulin to these remote areas in Uzbekistan or just remote cities, not even country areas and people knew it was there, they started to organize themselves. And diabetes associations came into practice. People are clutching, they want to live.

[38:33] So the insulin, I guess, is sort of like the water that's allowing the new seeds to grow. But it's no good going in there for six months or a year. The commitment is for the long term.

Phil: [38:50] I'd like to make a couple of comments. You talked about a changing world Ron, and I would agree. But behind you we have the World Diabetes Day logo, marks 14th of November, which is Banting's birthday. And the discovery of insulin was in the early '20s.

So we've had this product available for more than 85 years, and it's still not getting to the people who need it the most. So I'm hearing a lot about the costs, so I guess one question would be: [39:06] is there a magic bullet that would look after all the world's children, Graham? And how much is it? If there were a donor out there that wanted to take care of this problem, could they, and how much would that cost?

That's one question. And the other is: [39:29] beyond those economic issues, what other barriers might exist? I heard Ron talking about some red tape.

Graham: [39:40] We estimate that in the 50 countries in the world that are in most need, there's around 60, 000 children with diabetes, up to the age of 18. And to provide insulin for a year at a decent price, you would be looking at around $10 million a year for insulin.

[39:59] Now as I said, we're approaching the major insulin companies to see if we can reduce that price down to around $4 million or $5 million. But $10 million is a lot of money, but it isn't that much money. And it would be a similar cost to provide strips for those children as well.

Ron: [40:18] Can I just add a couple of comments about that? You mentioned the discovery of insulin, and I think some of the listeners or Skypers would be interested to know just a few reflections on that.

[40:31] When insulin was first discovered, there wasn't enough around for all those people that were desperate for it. And doctors in those days, including in Australia, used to make in their surgeries. They'd make it themselves. Actually, in principle, it's not hard to make an insulin that will keep you alive. It may not be particularly pure.

[40:50] But they would take the pancreases from pigs and cows. And they'd add a bit of hydrochloric acid and centrifuge them, and they'd get something that could keep them alive.

[41:01] And there's a very interesting story, and it is interesting, because it's motivating and it tells you what the people want, to emphasize that people want a chance at life. And that is that in Shanghai during the war there was a particular lady with Type I diabetes, and suddenly the insulin supply to the whole city stopped.

[41:18] Her husband was a textile chemist and he was able to go to the abattoirs and get a supply of pancreases. And with a school science laboratory apparatus from the 1930s, made enough insulin for, what I understand, was 400 people, 'till the end of the war.

[41:38] I remember my own early days with Type I diabetes in the mid 1950s. I was on animal insulin; I was doing urine tests. And yet here I am, I'm still alive. So there's all sorts of very interesting aspects to all of this. I think what we're trying to do is just guarantee a supply that will keep people alive. It doesn't have to be the Rolls Royce stuff, and so on.

Kerrita: [42:12] We have another question from SkypeCast. The question is, "I would like to know something about screening of GDM."

Kaku: [42:21] Gestational diabetes.

Kerrita: [42:22] OK.

Graham: [42:30] That's not my forte. I do know that in developing countries women aren't screened for gestational diabetes. So we're working in Papua New Guinea, that's one of the goals of our program we're aiming to introduce there. And if you don't screen for gestational diabetes, there's no doubt there's recent data that there's no cut off for an elevated blood sugar level in pregnancy in terms of an impact.

[42:58] So even a slightly elevated blood sugar level in pregnancy will increase the risk to the mother and baby at delivery. Its' imperative that there's' screening for pregnant women, and then treatment. There are good treatments now for gestational diabetes.

[43:20] But in terms of particular regimens in America, they'd have to speak to their physician.

Ron: [43:32] The consequences of gestational diabetes are quite a significant source of insulin for our program. And it's something that we want to give more attention to, because a lot of women who do need insulin during their pregnancies only need it for a short period of time. And so when they finish with that insulin, when they have their baby or their gestational diabetes subsides, they may have quite a large amount of insulin.

[44:02] So we try to focus on some of the to the extent that we've got resources on some of the hospitals which specialize in that because it's a source of supplies for us.

Phil: [44:16] I'd just like to come back to what you talked about the monitoring of the supplies. You said that Graham had a particularly useful model. Could you just explain that, how you are monitoring? If I want to donate to the program, how are you going to monitor my money? How do you do that? What's going to happen?

Graham: [44:37] Well, the money's collected and then we have budgets each year and we assign certain amounts of money to particular programs, and then we check that through. And individual donations are individually receipted, and people will receive two updates a year on what is happening with their funds.

[44:58] And all the funds donated to the program, whether it's in America or Australia, are properly audited and accounted for and reported out.

Phil: [45:07] And in this International Diabetes Federation's Year of the Child, what if any activities are they involved in to highlight these issues that you know of?

Graham: [45:19] There are a couple of activities. One I mentioned before about diabetic ketoacidosis, which many children, particularly when they're first diagnosed, end up in ketoacidosis. And if that isn't treated properly, the child can die at that very time. And so the IDF is looking to reduce the incidence of diabetic ketoacidosis in various countries around the world.

[45:46] And that depends on education and the needs are different countries. And it depends on the age.

[45:53] In Italy a couple of years ago, they had a very effective campaign about bedwetting. Saying, if the child had stopped bedwetting and then started bedwetting again, then the family or the GP should think of diabetes. But it's different in different countries. So one is that the campaign for ketoacidosis.

[46:10] The second one is to try to increase the number of children that are supported but currently almost at a thousand. We would like to increase that by another 500 within the next 12 months.

[46:20] I think the third one is the wider initiative that I was just talking about before, where we are aiming to approach companies to see if they will provide insulin and strips on an ongoing basis for children in these least developed countries.

Phil: [46:37] Thank you. Thank you for that. Do we have any further questions in the room?

Kaku: [46:46] This may be a slightly esoteric question, but I wanted to figure out is there any way that you can get the people who are in these countries, especially the academic institutions, maybe to start doing more research into more cost effective ways of dealing the program at the local level?

[47:05] Or just raising the awareness? I understand that infectious disease is more acute problem. Acute problems tend to take more precedence, but how do we sort of bring people around to thinking that, to understanding that, even now, but in the next five or ten years, this is the complications around this and this are going to be worst. They are going to create a scenario that is worse that we are seeing for the infectious disease setting?

Graham: [47:34] That's a good question. I think in many of these countries the doctors are working hard with the government already. And we hear good news. Like, I know that the Sudan, which is a poor country, I received an email a couple of weeks ago that one of the states in the Sudan has agreed to provide insulin for children in that state, which is a breakthrough.

[47:54] If one state does that then they can go and say to another state, well, this state does it, would you consider doing it? With type 2 there's very strong case to be made for adults. That if you treat, if you prevent diabetes or if you treat it well, it's much cheaper to the nation and much more effective in terms of output, of work output than letting complications ride.

[48:19] Unfortunately, with type I you could probably make the economic rationalist argument that it is cheaper for the country to let the child die than to treat them. But on the other hand, people have a heart. And we can see certain countries taking steps, one by one. But some countries are a long way from that.

[48:39] When I was in Bolivia I thought well maybe we could just approach the government and ask them to provide insulin for children. Then I find out that the health system only covers pregnant women and children under five for respiratory and gastrointestinal problems. So, if a four year old has a head injury, the family would have to pay for the child to be cared at the hospital.

[48:58] If a ten year old has pneumonia, which is very common, or tuberculosis, the family would have to pay. And so, it's a long way yet for the government to provide insulin. But on the other hand, the government can put another doctor into the clinic or provide an education service. So, it's an incremental progress. I think within these countries the doctors and the patient associations are very strong advocates for change. Step by step the change is happening.

Manny: [49:27] Question came to mind: in the US we are observing more and more cases of call it type 1.5 or la da. What are the trends you are observing worldwide in regards to this and the fact that I understand when you are allowed... the earlier you start getting treated with insulin, the better. The more you postpone it, you are basically like eventually your pancreas will stop producing any insulin.

[49:56] So what are the trends you are seeing worldwide?

Graham: [49:58] It's a little hard to tease out moderate and type 1.5 in these countries but we know that type 2 is appearing in children in these countries. And, for instance, in Fiji the annual data sheets, it was clear to me they had all these children labeled as type 1, but three of the children didn't have type 1 they had type 2.

[50:20] There is very strong data from Japan that the complications clock starts ticking as rapidly in type 2 as in type 1 with elevated. And so, it's imperative to find the children with type 2 or type 1.5 and to start treating those.

[50:37] They're a harder group to find. Even in America there are many children with type 2 who don't know that they've got type 2 yet. And so, it's harder in these countries, but they are starting to appear. And type 2 is actually less expensive to manage than type 1 because you can get away in the first instance with diet and exercise and then with Metformin.

[50:58] So, it's a nicer one to have in some ways.

Phil: [51:03] I want to start bringing things to a little bit of a close now with a couple of questions for you. One will be: what will be the dream for your program when it comes to that?

[51:16] The other will be: I'm a person with type 1 diabetes with a commitment to this. I feel very committed to the plight of children in other countries. So I'm in a position I guess to support both your programs.

[51:28] So, in summary as well, what is the immediate thing that I should do to help you out? So, that would be my question to you: first the dream for your program and then, immediate practical steps for someone like myself to help you.

Graham: [51:43] I think our dream for children is that no child should die of diabetes. So, that all children in the world should have adequate access to insulin and to monitoring and to diabetes education.

[51:54] I think that where we can't promise to realize that for every child, but I think that the wheels are turning now that we can have a global commitment to many countries, hopefully, in the next couple of years to achieve that.

[52:09] In terms of helping the Life of a Child program, financial support is what we need. It costs money to look after these children. If you would like to sponsor a child, or as a group sponsors a child, then you can do that over our website: ww.lifeforachild.org. That can be done in various countries.

Phil: [52:35] Thank you. Ron, the dream?

Ron: [52:37] Our dream is to open more Insulin for Life affiliated centers. As I said we have six now. Three in Europe, one in the United States, one in New Zealand, one in Australia. So, we want to enlarge the number. We don't want them to be individually large; we want them to be manageable size but a lot of them.

[52:57] Our dream is also to ultimately to collect every vial of in date unopened insulin that would otherwise end up being wasted. We want to see that get to a person with diabetes that needs it. That's our aim.

Phil: [53:12] A practical step for me then, Ron? How can I help you?

Ron: [53:15] The in date unopened insulin test strips sent to the address I said with at least four months to go. Don't send anything else. It'll just make it more complex for us.

[53:26] And also, if you want to sponsor some of our activities in certain countries, we can look into that as well. I don't really see our program as competing for funding. When we are with Life for a Child, we are making Life for a Child's efforts, let's say, more... the dollar will go further because we are able to supply insulin cheaply. We have those abilities.

[53:57] I don't really see us asking for money is sort of foreign. I believe that Life for a Child does a wonderful job in that aspect. I see ourselves as supplying them with insulin at a very effective rate.

[54:12] We have a number of organizations that sponsors us, diabetes associations in different parts of the world. Our particular model is unusual, I suppose, that we are collecting these supplies. So there may be particular groups of individuals and organizations out there that particularly see our model, our green model, as a model for other things.

[54:35] There are computers. There are all sorts of things that are thrown out in western countries. And again, if we are really going to tackle this climate change issue, if we take it seriously, we're going to have to go down to this sort of level. It doesn't make sense to produce things and throw them away. And to waste as we do in the west. When you see children dying in developing countries I think it just emphasizes how we must learn to find these.