NOTE: I am still working through all my data and conclusions, so everything here should not be regarded as academic data driven arguments, but rather general observations
When I started reading about the growth of diabetes in India, all the public health literature boasted about the impending doom of growing chronic disease among the urban poor in developing countries. In fact, the Hult Prize social enterprise challenge, created jointly by PepsiCo and the Clinton Foundation, for this year was a “call to improve chronic disease care in slums by 2019,” on the basis of the fact that chronic disease is growing in slum communities all over the world. Their call to action can be read here: http://www.hultprizesix.com/pdfs/2014-Hult-Prize-Challenge.pdf
The call to action, while important is a bit problematic because one, it assumes that all people slums all around the world face the same issues (and that only poor people live in slums). Two, it assumes that the government or private sector are not finding solutions for chronic disease (not true in my experience). And three, it makes claims despite the fact that there has not been much research done in the reality of diabetes in slum areas, especially from the perspective of the slum dwellers. We do not know a lot about what people think of the disease and what strategies they are already using to cope with the disease. While I understand that the Hult prize competition is well-intentioned, it seems to make a lot of broad sweeping generalizations about slum communities and chronic diseases in those communities without attention to the diversity of circumstances across all countries where the urban poor live in slums.
After interviewing over 70 diabetes patients and about 20 private doctors in a slum area in Mumbai, I have come to the conclusion that the slum dwellers are not victims of their disease but rather people who navigate a range of financial and health considerations to manage their diseases and live a normal life. People speak openly about diabetes in the community, share information about the disease with one another and together find ways to address the issue.
That is not to say that there are not any problems, or areas for intervention . Most people I talked to only found out about their diabetes after they developed some symptoms, which is a sign that they likely had high glucose levels in their bodies for a long time that were harming their internal tissues. People unfortunately are not in the habit of going to the doctor regularly for a health check-up. However, there was plenty of good news, everyone was taking medication currently or had taken it in the past, got their glucose levels under control and are now managing the disease through diet, exercise and/or alternative treatments. Thanks to Mumbai’s diabetes program, people can get free diabetes medicines in the government hospitals, but they have to return to the hospital every fifteen days for a check-up to receive their medicines. Because of this program’s structure, people are regularly up to date with the medicines and frequently check their glucose levels. The vast majority of the people I talked to were taking advantage of this program, even though they have to travel for quite a long time to get to many of the government hospitals.
The result? Only one of the people I talked to was taking insulin injections (a sign that the disease has progressed pretty far) and few had ever been admitted to the hospital or undergone any operations for complications due to their diabetes. The conclusion: people are working to actively keeping their diabetes in check. Everyone had received diet advice and most had received exercise advice from their doctors. While most people struggled to maintain a perfect diet on limited means and to exercise in a community with few public spaces, most said “Jitne hum kar sakte hain, hum karthe” As much as we are able to do, we do. Many of the doctors I spoke to in the community confirmed that community members were managing their diabetes well.
There are definitely some limitations with my study. I did my interviews during the daytime, so most of the people I spoke with were women who did not work during the day. Therefore my respondents had more time in the day to go to the government hospitals, wait in the long lines and get the care they needed. It would be interesting to explore how working adults are managing their diabetes and where they are getting their healthcare from (unfortunately, the timings of many government hospitals are not suited to long working hours). But it’s pretty hard to catch people who work 12-14 hours a day, so I’ll leave it to someone else to tackle that question. It would also be interesting to explore the knowledge about diabetes among people without the disease to see if people are aware of preventative measures and risk factors for the disease.
Of course, there are probably places that fit the circumstances that the Hult prize aims to alleviate: limited access to healthcare, formidable costs for diabetes and widespread ignorance about the diseases. After doing my research I still think it is important to look critically at the resources and knowledge on the ground before designing any type of intervention.
In our well-intentioned but sometimes naive quest to help people, we often underestimate people’s abilities to understand complex information, access resources and address their needs. Sometimes, all people need is for the resources to be within physical and financial reach.