Dr. Francine Kaufman: Diabetes Warriors: The Stories Behind the Statistics
Dr. Francine Kaufman is a highly respected and well known pediatric endocrinologist. She is the director of the Comprehensive Childhood Diabetes Center, and head of the Center for Endocrinology, Diabetes and Metabolism at Children's Hospital Los Angeles. Dr. Kaufman recently completed a six-continent tour with a film crew from Discovery Health - a collaborative effort led by Dr. Kaufman to draw attention to the plight of children and adults living with diabetes around the world. The premier of her documentary, Diabetes - A Global Epidemic, at the New York City Museum of Natural History, was the first in a series of events leading up to World Diabetes Day celebrations in New York on November 14th 2007. We believe the title of this piece speaks for itself. In this interview, Dr. Kaufman discusses the making of the documentary and compares the treatment of diabetes in America and abroad.
Kelly Close: Thank you so much Dr. Kaufman for taking time to speak with diaTribe. Could you talk broadly about your recent multi-continent trip? What were the goals of the program, how did it unfold, and who approached you to do this program?
Dr. Fran Kaufman: I actually approached them. I had the great opportunity to know Dr. John Whyte when I was ADA president. We came up with the concept that diabetes, as a worldwide epidemic, should really be shown in its entirety, including the entire globe. We then asked for and received from Novo Nordisk, an unrestricted educational grant to move ahead. And we pretty much chased the diabetes epidemic across the globe. So, we went to every continent, save Antarctica! We really went in search of the stories of diabetes, the stories of the people affected and the stories of what we now call our Warriors - the health care providers, the politicians, the people out there going into battle against diabetes every day, on every continent. We featured a residential home in Cape Town in the townships, a place where children are sent when they're diagnosed. Most of them have type 1 and can't go to live in their own homes because of lack of resources or lack of education.
Kaku Armah: Can you tell us more about those who were running the homes?
Dr. Kaufman: This home was run by nuns - a German order that has been there for a long time, taking care of children with diabetes and with other health care needs as well. So, there, the children do have access to insulin. They have meters, they have good nutrition, and good opportunities for physical activities, but of course, they're without their families. And we captured this one child who was just incredible, who talked to us about [how] he knows he's healthier in the home and he's actually crying as he's telling us, he's so genuine. And he knows it's good for his health, but he doesn't really want to be there. He wants to be with his family.
Kelly: Of course.
Dr. Kaufman: Any child would want to be. This is the effect of diabetes in countries and in areas of countries in which there aren't the resources to keep these children healthy and well. So they age out at some point and then what happens? They just go back out into an environment in which there is little access and little opportunity to be able to survive. This is particularly true in Sub-Saharan Africa, where in a country like Mali, a child lives less than a year after he or she is diagnosed with diabetes."
Kelly: Wow. Just because they don't have access to insulin?
Dr. Kaufman: They don't have access to insulin or health care providers. If they have insulin they don't have enough strips and I can go on and on. The whole health care paradigm is really not there. That is why programs like Life for a Child and Insulin for Life are so important. These programs provide insulin at a markedly reduced rate and certainly, Insulin for Life is getting a lot of donated insulin from around the world. But insulin without strips, without meters, without education, without access to health care or some kind of provider doesn't get you anywhere. It's not just, "We'll send insulin down there." That's what everybody thinks at the beginning, including me. Obviously, that doesn't solve the problem.
Dr. Mohan's mobile van with satellite linkup to transfer retinal images from rural areas in Chennai, India to urban medical centers.
Image courtesy of Dr. Kaufman
Kaku: So, do they have the same problems there as we have here, with physicians not wanting to go into diabetes?
Dr. Kaufman: In Africa, certainly, type 1 [prevalence] is much less. It's also much less common in Asia. But there are so many people in India and Asia. And actually, there are a fair number of children who develop type 1 diabetes in these areas of the world. To care for children with type 1 diabetes takes a lot training and in many areas care is not given by physicians. It's done more by nurses. So there has to be that capacity, and I think many areas of the world are overwhelmed with taking care of people with type 2.
Kelly: That's interesting. What was your next stop?
Dr. Kaufman: We went to India where we visited the clinics of two very, very well-known diabetologists - Dr. Ramachandran and Dr. Mohan - in Chennai. Each of their clinics followed 100,000 people. But they're very, very comprehensive -it's pretty amazing. You walk in, they've got dental care, and they've got a pharmacy that supplies medications and devices. They actually have food that you can buy. [And they have] shoes - shoes are a huge issue in India, going barefoot can lead to problems that put people at risk for amputation. The clinics were truly comprehensive. You get all your diabetes education, medication, and everything else that you need. So, they really end up giving you everything.
Kelly: Is this government funded?
Dr. Kaufman: No, it's private. So, obviously it's not accessible to everyone, which is incredibly unfortunate. But they are committed to going out into rural regions, so we followed them to rural India. We were in the outskirts of Chennai, hours away - you get to the village and there is almost no electricity, no running water, people are living in huts, the animals are all over. Dr. Mohan brings a mobile van out there with a satellite dish, so they're doing retinal photos and sending it back to the main medical centers. They're doing oral glucose tolerance tests (OGTTs) - with a number of positive screens - and they're out just greeting everybody.
Kelly: Could you talk about comparisons among the countries that you visited? What difference did you see in the reception to your messages in the different countries?
Dr. Kaufman: I think there is a better state program going on in Brazil. It's not perfect but at least they claim that they do allow access to insulin. There are 100 million Brazilians covered under these kinds of programs. We met with Dr. Fahdlois, who has a radio show. We went and listened to him on his show. He's got a big clinic. He has a dentist inside the clinic, there's food, medications, education, comprehensive care. He even has a choir and a dance club.
Kelly: Wow. That's amazing.
Dr. Kaufman: Yes, so it's just amazing. I mean, all these patients with diabetes dancing. And Dr. Fahdlois is committed to working in the poor areas of Brazil - the favelas. They're sending out community health workers to people who are known to have diabetes mostly to ensure that people are taking their meds, that they have food, that they have health care access and that they know what's going on.
Kelly: One other question centers on different programs to help adherence and behavioral changes, and how that varied among countries. But first, we want to find out a little more about each place that you visited.
Dr. Kaufman: Right after India, we went to Australia. In Perth we met with many people who are the descendants of the original Australians - the aboriginals. Like the Native Americans, they have a very high rate of diabetes and many people are working to increase awareness about diabetes in the aboriginal population.
Kaku: Diabetes management in Australia seems to win a lot of praise - can you talk a bit more about that?
Dr. Kaufman: Yes, they're really aware of their epidemiology. Dr. Paul Zimmet and his group have led a huge effort. They're teaching people weight training and healthy lifestyles. Plus, I think they're a bit more globally supported and promoted by their government. There's a big contrast because they've got a national health policy. I say this all the time: every kid I take care of is going to lose their insurance. And so, they have to scramble. They have to figure out some way to get coverage, and it's just insane. It's completely insane that they can have diabetes and not have access to health care, supplies, medications, and secondary preventive services.
Kelly: I know, it's really, really rough. Do you think that because there's a national health policy, there is an impact on who treats diabetes in these countries?
Dr. Kaufman: I think they've got great providers, but there are just not enough endocrinologists anywhere.
Kelly: Yes. Well, why do you think that there are not enough health care providers for people with diabetes everywhere? Why is this a global problem?
Dr. Kaufman: I don't know if there aren't enough. Most diabetes care is in the hands of primary care, and they have so many things to deal with. They've got to be sure about cardiovascular disease and a range of other issues. But on the other hand, they don't drill down as much, often because they do not have time. I think primary care physicians with access to a team are very good and can take care of most people with diabetes.
Kaku: We want to circle back to the team idea. But first tell us about the rest of the places you visited.
Dr. Kaufman: We were in Australia and then we came to L.A. [The film crew] came to my clinic and then they followed me into one of our community programs, a program called KidsNFitness. KidsNFitness is delivered in the after-school setting in impoverished neighborhoods. Half the mothers who have children in our after-school program have not graduated from high school. So, we're doing a six-week program on health, health literacy, and lifestyle change. And now, it's important because we just launched our Web site with Starlight Starbright, called Get Fit, Get Right.
Kelly: That's amazing. What was that like to put together?
Dr. Kaufman: You get enough talented people around you, you can do anything.
Kelly: How did it feel being back in the US, compared to the other countries?
Dr. Kaufman: I live in L.A., a phenomenal city, in which there are the world's wealthiest people and the world's most impoverished.
Kelly: How did you think about government support in the US compared to government support in some of the other places that you visited?
Dr. Kaufman: Well the next place we went to was Finland. There, the cities have been redesigned. They've been trying to work on reducing both their diabetes and cardiovascular rates for a decade- it's the North Karelian Project. The environment is a lot more health-promoting there. Everybody's got access to health care. Prevention is a real aspect of the health care business. So, they're really set up to be able to do it. You go to a place like Finland and you're envious. To me, the starkest contrast between the US and Finland is that Finland has universal health care. The United States is behind the eight ball and comparable, in some ways, to the developing world - South Africa - because of our lack of access to health care for everyone.
Kelly: Just going back for a second, we would love to discuss the last countries you visited.
Dr. Kaufman: We went to six continents and spent less than a week in most of them - we had done a lot of work before we got there. I think that the real issue is the story of diabetes told by the people affected by diabetes. It's the same story everywhere and it brings out the same emotions that we all have of children affected by this disease, and adults struggling too. The uniqueness of diabetes is that the management really falls in the lap of the person who's affected. They're given knowledge and access to supplies, and then we ask them to do a lot. One of these women in Brazil, for example, talked about what it's like to navigate her world and how hard it is, and this could be Brazil or India or the US or anywhere. Wherever you are, it's really tough. Just, some places it's even harder than other places.
Kelly: Did you experience any resistance from patients given that complications set in so much later after onset and people in developing countries tend to be more concerned with immediate (economic) issues?
Dr. Kaufman: Well, I think only with the children in Africa. But that's the same that you get from children everywhere else. Looking way down the road as a child and knowing what I do now has a long-term impact - that's a tough concept for children. So I think all parents will admit, "I've got lots of pressure in my life. I've got lots of issues to deal with. I've got to raise my family. I've got to put food on our table." To manage in a city like Sao Paulo or Chennai and still be able to fight diabetes, that's asking a lot.
Kaku: Given that people watching this documentary will have varying levels of knowledge about diabetes, what would you say are the main takeaways?
Dr. Kaufman: First, I hope they realize that it is a global epidemic, that there's no more time for sitting around, that we have to work as a global community improving the standards of care for everybody. We must work to enable people to live healthy and productive lives with diabetes. And at the same time, we need to work in a global scientific community to find better answers.
Kelly: Are you more optimistic about that today than, say, five or ten years ago?
Dr. Kaufman: I think I am more optimistic. I think there is an ever-increasing awareness about diabetes and its effect everywhere, although when you hear the numbers, it's overwhelming. Even with all the global awareness - the UN resolution, World Diabetes Day, the political will behind this - the sheer number of people affected is just overwhelming.
Kelly: Who is the target audience for the documentary?
Dr. Kaufman: Anybody and everybody. Hopefully, those who live with diabetes will find something that resonates with them. Those who don't know much about diabetes will hopefully gain knowledge, at least, as to the scope of the problem and realize that it affects each and every one of us in some way. No matter what, you would be hard-pressed to be on this planet without having diabetes affect your life.
Kelly: Is there going to be some sort of special push to put this in the face of policy makers?
Dr. Kaufman: Well, I hope so. I'm not exactly sure how that comes about, to be honest. Obviously, this is in the hands of Discovery Health. Novo Nordisk will have a lot of DVDs to distribute. So hopefully lots of people will have access to it.
Kaku: How did you choose Novo Nordisk?
Dr. Kaufman: They were the first people we went to and they said, "Yes" and donated an unrestricted grant. I think Novo Nordisk is an incredible company with their commitment to their triple bottom line.
Kelly: Was there anything that you personally learned that made you more curious about other research that you could do here?
Dr. Kaufman: I have incredible envy for these clinics in Brazil and in India. They're really huge freestanding diabetes centers that are comprehensive. I'm not sure that we've been able to replicate that kind of model here. Don't get me wrong, you had to pay to go to these places - they're not free and there are different levels, I think, of people who can afford it and what they end up getting, but it was pretty impressive nonetheless.
Kelly: Where do you see diabetes today versus when you started and also versus when you were ADA president?
Dr. Kaufman: I think when I first started, if you had diabetes, you kept it in the closet and you didn't tell anybody - one shot a day or one pill a day or whatever. And so it was a silent, hidden disease. Now the sheer force of the numbers has enabled us to make incredible breakthroughs in management, research, avoiding complications, and hopefully educating people with and about diabetes. The International Diabetes Federation (IDF) has become, I think, a much more important organization, leading the way for all these [national] associations. Of course, a lot of what happens is local. Local centers are unique. That's what the point of this documentary is, to show that this touches so many people - especially children. Now, the next area of focus is advocacy to raise global awareness so that we get our share of funding and attention in order to keep improving the lives of people with diabetes, and one day to prevent and cure it.
diaTribe was fortunate enough to be invited to the premier of the film, Diabetes- A Global Epidemic at the Museum of Natural History in New York to kick off World Diabetes Day celebrations. Remarked Dr. Kaufman, "World Diabetes Day in New York and at the United Nations was phenomenal. What an experience to see the world come together in blue and to recognize the effect that diabetes has on people across the globe." We wholeheartedly agree.