A Report From the Diabetes Capital of the World
The second Diabetes Blogging Week (May 9-15) is upon us, giving bloggers who write about diabetes to come together and exchange views. Today we are writing about the different perspectives of diabetes bloggers in different countries and different socio-economic-cultural settings.
If asked, I’d say most of us agree that the diabetes epidemic sweeping many parts of the world must be met head on. Where we differ is our perception of the challenge. Nevertheless, bloggers and diabetes activists like Jenny Ruhl, Manny Hernandez, Scott Strumello, and Amy Tenderich, not to forget countless others, have made tremendous contributions in bringing the fight against diabetes to the forefront in the mainstream media. I’m grateful to all of them for enlightening me about diabetes care. Indeed, they are one of the reasons I began blogging about diabetes.
Unfortunately, however, there’s a tendency amongst writers (unless warranted otherwise) to treat all people with diabetes (PWD) as a general category without appreciating the fact that there is a significant diversity amongst them. To researchers and bloggers alike (including myself), it doesn’t matter that diabetics live on different continents, or belong to different ethnic groups, only the disease is important. Even within the ethnic groups, the divide between rural, semi-urban and urban areas is hardly taken into account to formulate policy, not to speak of wide socio-economic disparities. So even I end up endorsing CGM when a majority of diabetics cannot afford an HbA1c test.
After blogging about diabetes for one year this month, I have come round to the view that while the ultimate goals of all diabetes care programs may be the same, these differences and diversities must be taken into account when drawing up specific plans and guidelines so that the challenge posed by the worldwide diabetes epidemic can be met effectively. This post has inadvertently become lengthy, but I’m using Karen Graffeo’s’s platform in an attempt to educate and inform fellow diabetics about people with diabetes beyond US shores. Of course, I’m laying myself open to well-meaning criticism, but nothing is worse than uncontrolled diabetes.
Take the case of India, a vast and diverse country, which is home to the second largest number of diabetics after China (India may still have more diabetics as millions of cases go unreported). Not only is India a vast and heavily populated country, but the people who live here are ethnically heterogeneous, which is manifested in significantly different religions, communities, castes, cultures, languages (18 major languages and more than 200 dialects!), food habits, lifestyles and genetic endowment. It would be fair to say that India has more diversity than the whole of Europe. It is this diversity that must be taken into account when planning any program for diabetes care in India.
Diabetes in India has long passed the stage of an epidemic and numbers have given the country the dubious distinction of ‘Diabetes Capital’ of the world. To put it simply, it has crossed the stage of a problem associated with individuals to become an astronomically growing large public health problem.
It may surprise many of you, but the type of diabetes which we see here in India is considerably different from that described in the western literature. Although the estimate of Type 1 is around 1% of the total diabetics, the vast majority of Type 2s differ significantly from their western counterparts. Only about one third of these would be considered obese; 10-15% would be underweight and the rest would be of normal weight or just slightly over the acceptable weight range. The propensity to become a diabetic is higher in Indians as we have a low threshold for the risk factors ‒ Americans develop diabetes when the body mass index (BMI) is 30 and 35; Indians develop it when the BMI is only 25.
What is of considerable interest is not only that the number of diabetics is increasing in leaps and bounds, in India, compared to the US, diabetes appears not only earlier in life (with many Type 2s being diagnosed at the age of 20-30 years), but the chronic long-term complications occur earlier, progressing more rapidly and reaching the hard end points in diabetics who are relatively younger as compared to the picture seen in the past.
To put India’s diabetes epidemic in perspective, the crude prevalence rate of diabetes in the country’s urban areas is about 9% while in rural areas it has increased to around 3% of the total population. If one takes into consideration that India’s population is more than 1 billion, the country is home to around 40 million diabetics. Surveys have also shown that the prevalence of Impaired Glucose Tolerance (IGT) is high. It has been reported that the prevalence of IGT is around 8.7% in urban and 7.9% in rural areas.
Another study has shown that the prevalence rate in urban areas is around 6%, whilst the figure in the rural areas is around 5%. Given the observation that around 35% of those with IGT will develop full blown diabetes within five years, the sheer numbers of those living with diabetes is overwhelming.
Screening has also shown that the unknown to known diabetes ratio is about 1.8:1 in urban areas, whilst it is as high as 3.3:1 in rural areas.
Whilst the high rate of prevalence of complications is disturbing, the picture is rendered all the more gloomy with reports that more than 35-40% of people show the presence of some diabetes related complications at the time of diagnosis.
It is therefore, a major concern to those involved in diabetes care that India has no major initiative available, or even planned, to try and face this problem. Even the central (federal) government’s announcement last year to conduct India’s first diabetes census is yet to take off.
India has a distinct need for a comprehensive diabetes care program that is workable. It needs to continuously be examined and reevaluated so that one is sure that the objectives are being achieved. Without such an objective evaluation, there is always a possibility that such programs will be high on “percept” and abysmal in “practice”.
It is crucial that for any program to succeed, it must be rooted in ground realities present in India. The program should have an infrastructure that makes it AVAILABLE, both in terms of technology and expertise, ACCESSIBLE even to the common man with diabetes, and AFFORDABLE.
The per capita income of an Indian has been estimated to be less than $400. In view of the significant disparity in incomes, more than 75% people earn much less. Economic realities have to be taken into consideration. This includes, both, the finances to make comprehensive and acceptable diabetes care services available to the people, and more importantly, the capacity of the people to afford these services.
It is widely accepted that the health, socio-economic and personal costs of diabetes and its attendant complications in India is unacceptably high, not only to the individual, but also to the nation as a whole when one considers the sheer number of people who are already known to be diabetic. This burden can only increase with the projected increase in the numbers of people with diabetes.
Unfortunately, the Indian government still does not consider diabetes and other non-communicable diseases as a priority area. The feeling is that we still have a long way to go in dealing with communicable diseases, which are again seeing a rise in numbers, immunization, providing clean drinking water and sanitation to the majority of the people, which get most of the funds allocated to the public health sector. As it is, the central (federal) government’s annual budget for health is a mere 1.2% of GDP, meaning a spend of just 25 cents per capita.
According to a recent paper in The Lancet, health services in India’s public sector, which can be accessed free or for a nominal fee, are grossly inadequate. Consequently, most Indians have to access private healthcare that is expensive, unaffordable and even unreliable. Good-quality healthcare in the private sector is also not available, particularly in rural and other remote parts of the country.
Even if the finances necessary for providing the basic modicum of services is made available, can the average person afford it? To paraphrase what 1998 Nobel Prize winner in Economics Amartya Sen said in the context of famines ‒ “the root cause of starvation in famines is not the lack of food, but the capacity of the average person to buy the food” ‒ it can be said that the root cause of a failure of a diabetes program is not only the availability of services, but the capacity of the average person to afford these services.
With the constraints that the government faces, and also the fact that the costs of therapy will increase by leaps and bounds, will optimal diabetes care become beyond the reach of most of our people with diabetes?
In the absence of any diabetes care program available in India, the question is often asked that if India does not have its own homegrown program, why doesn’t it “import” a program from abroad? There are many countries and regions which have good diabetes-related programs and one of these should be used in India.
Given India’s size and complexities, such imported diabetes care programs will rarely succeed. Programs based on the St. Vincent Declaration or the Declaration of the Americas, though excellent in themselves, can only act as beacons and not as the ultimate goals. India has to evolve its own program based on the ground realities. Based on this and the perceived needs and lacunae in diabetes care, India has to draw up a realistic plan to combat the diabetes. Sure, high sounding charters and programs look impressive on paper; but they achieve little, if anything, on the ground.
Therein lies the rub.
Based on the Statement of the ‘Indian Task Force on Diabetes Care in India’, which I endorse.