It is estimated that 230 million people worldwide have diabetes. Some cope well with this disease, managing to live a relatively normal life. Many don’t. In large parts of the world the onset of insulin dependent diabetes is a death sentence. John Yudkin and David Beran, at the International Insulin Foundation, have done a tremendous job in raising awareness of the many people in developing countries for whom a diagnosis of insulin-dependent is a sentence of death. For these people, mostly young children, the situation is unchanged from what it was before Banting, Best and their colleagues discovered insulin in 1921. Steadily, over a period of about 18 months, they waste away and eventually die. Yet even in wealthy countries many people with diabetes face almost insurmountable problems. Death rates from diabetes among young people in the USA, with its fragmented health system and its failure to provide more than the most basic care to 40 million people, are many times higher than in the much better integrated European countries. And things do not always get better. We have previously shown how death rates from diabetes have increased in most former Soviet countries (with detailed studies in Ukraine and Kyrgyzstan) as once functioning (albeit at a basic level) systems fell apart.
For these reasons we have increasingly seen diabetes as a lens through which we can observe the functioning of health systems. In essence, if health systems are working well, then people with diabetes survive; if the systems fail, then they die.
This was the subject of a talk I gave in Oxford on the 28th June. I was speaking at one of the now famous seminars organised annually at Exeter College by David Matthews. I began by looking at the enormous variations in outcomes of diabetes among industrialised countries, drawing on our earlier work relating mortality to the incidence of diabetes, before describing the reality for people with diabetes a variety of dysfunctional health systems in the former Soviet Union. The problem we face is that you need to get a lot of things right if people with diabetes are to receive effective care. You need trained staff who actually understand diabetes, reliable supplies of drugs (and not only insulin) as well as all the equipment to administer insulin and to monitor control, systems of referral when complications arise, and social support so that people with diabetes are not thrown on the scrap heap. All of this is discussed in detail in a new analysis of the management of chronic diseases led by Soji Adeyi at the World Bank, to which we were privileged to contribute.
However, as I mentioned above, things are not so good even where resources are plentiful. As the picture shows, death rates vary enormously within the United States. Unsurprisingly, the situation is much worse for African Americans, although the racial gap in outcomes varies considerably among states, with some surprising results. It is relatively narrow in states such as Maryland and Mississippi but wide in Tennessee and Louisiana.
Of course, I was talking to an audience of experts in diabetes. Do these findings have a wider relevance? Yes, they do. I also showed the close correlation, among US states, between deaths from diabetes and those from overall deaths that could be avoided if there was timely and effective care, a concept that my colleague Ellen Nolte and I have been revisiting over recent years (see our book for more details). However, looking beyond this, it must surely now be apparent to those trying to scale up treatment of HIV/AIDS that they face exactly the same challenges as those trying to put in place effective care for diabetes. The two disorders are both complex chronic disorders. They both need certain basic drugs – insulin/ anti-retrovirals. But they both need a lot more, in terms of an integrated system to deliver care. Furthermore, both diseases exemplify the way in which the traditional divide between communicable and non-communicable diseases is breaking down. People with diabetes develop long term infectious complications, such as a higher risk of tuberculosis or infected foot ulcers. People with AIDS are increasingly developing vascular diseases because of the atherogenic effects of anti-retrovirals. So yes, diabetes is a lens through which we can view, and understand, the health system.
The good thing about speaking at seminars such as this is the opportunity it gives to hear other people. The other speakers were, without exception, superb and I now know a lot more about the mode of action, and thus the effects, both positive and negative, of the new oral hypoglycaemic drugs. I also know probably more than I need to about erectile dysfunction, thanks to some graphic slides by Jonathan Levy! However two rather different presentations stood out from the rest. The first was by Helen Lloyd, a former BBC producer and now oral historian. In a Wellcome Trust funded project with David Matthews, she had interviewed 50 people diagnosed with diabetes between 1927 and 1997. Their stories can be read, and heard in their own words, on a superb project web site. Those diagnosed before the creation of the NHS faced incredible obstacles, with their families scraping together the money for insulin. So many of the stories from the 1920s-1940s echoed those I had heard in the former Soviet Union. Several people described how, as children, they had been excluded from education. Even in the 1980s, people in the UK with diabetes were being discriminated against, excluded from many jobs that they could perfectly easily have done, recalling contemporary practice in the former Soviet Union where children with diabetes are educated separately and, as soon as they reach adulthood, are labelled as disabled and excluded from the workforce. Anyone interested in the human aspects of health systems really should visit this web site. The project is now in a second phase, interviewing those who cared for people with diabetes. We had a preview; the interview that struck me most was with Harry Keen, who described the realisation that insulin was not a panacea and long term treatment was associated with increased risks of cardiovascular and other diseases, an observation with much contemporary relevance given my earlier comments about the cardiovascular consequences of AIDS.
The other noteworthy presentation was by Sir Michael Hirst, former Chair of Diabetes UK and now vice-president of the International Diabetes Foundation. He described the struggle to get a United Nations Declaration on diabetes. Now of course a declaration about a disease is just that, no more and no less. Yet for those struggling to tackle this disease, these things are important and highly symbolic, not least because of the way in which diabetes and many other chronic diseases are often effectively ignored.
It is a story that I hope he will publish sometime. The heroes are the governments of Portugal and Ukraine. The villain was the British government. It is a story of intrigue, duplicity, and deceit. Fortunately, following the recent cabinet reshuffle, some of those involved are now on the back benches. However, it did have a happy ending as the other EU governments, mystified by the hostile position of the British, one by one moved from not understanding what it was all about to active support for the Declaration. This is a story that should be heard by anyone trying to get health on the international agenda in the face of apathy or worse (especially when it is from one’s own government) outright hostility.