India: A Few Findings & Themes

After two wonderful weeks in India, I’ve started identifying several themes that I’ve heard reinforced among a number of interviews, hospital tours, and program site visits. Chronic diseases and diabetes in India have progressed in a very unique way. Largely influenced by the competitive family culture, fragmented primary care system, academic mindset, and lack of government priority in chronic diseases, India is now positioned to rapidly explode with accelerating chronic diseases related to poor lifestyle choices and obesity.

Common Misconceptions

For 95% of the diabetes cases in India (Type 2), it is 100% preventable. Conversations with patients, health care workers, and friends in India revealed that the population already has the message, loud and clear, that the disease is hereditary (unlike Type 1). However, what hasn’t been communicated is that it is preventable. YOU have control! Only in rare cases can you develop Type 2 diabetes without a high concentration of abdominal fat (i.e. you have to gain mid-section weight to trigger the insulin resistance). If you control your weight, you should be able to life a long, healthy, diabetes-free life.

Another misconception is literally lost in translation. The Hindi term for diabetes literally means “sugar” or the sugar disease. This association is made because blood sugar is used to diagnose the disease. This creates two main problems; (1) patients believe that only sugar contributes to the progression of their disease – while oil/fats is what triggers insulin resistance for pre-diabetic cases and (2) many patients cut only sugar out of their diet and believe that will control their blood sugar – ignoring breads, carbs, and starch which breakdown into simple sugars and really escalate glucose concentrations.

Lifestyle change is not easy in India. There is a lot of guilt associated with changing a family’s routine. And, people love their d­­āl, chapatti, and rich sauces (as do I!). One diabetes educator told me that there is one place where most patients compromise by far – food. Changes in nutrition are SO important and “slacking” here on a routine basis is arming a silent enemy. Also, a slight heavyset weight is traditionally viewed as “healthy” from a time when food was more scarce. Increased family incomes AND bad meal choices leads to bigger bellies. Period. Exercise is also not easy accessible as many cities don’t facilitate public spaces for walking, jogging, and other activities. Could Brazil’s “city gym” concept work here?

Finally when I ask about prevention, I hear the same response over and over. In a discussion with Dr. Sadikot, President of DiabetesIndia and VP of the International Diabetes Federation (IDF), he stated firmly, “Start with children. Start young, very young.” Educating elementary school children is a wonderful way to reach an entire family (and train the next generation). I believe that chronic disease prevention must become the “global warming” of the future. The diabetes educators could be valuable resources that could be used to help conduct these school session. What child hasn't been taught about the dangers of global warming in school? They go home, they ask their parents about it and challenge the previously accepted family norm. How long has it taken for more environmentally friendly lifestyles to take hold? Might this provide some insights for health lifestyle interventions as well?

Capacity Building in Primary Care

There is a large opportunity for building capacity for awareness, education, and early detection in the primary care setting in India. Training “family physicians” and other primary care contacts may help them recognize signs that they see in patients day after day. Building an effective referral path to specialists and diabetes educators would be essential. My perception is that working with primary care physicians with whom patients feel comfortable (or have seen years and years) may also help with the community support to support families and manage the multifaceted (e.g. emotional) aspects of diabetes. Diabetes educators could also serve as a resource to help conduct information sessions or trainings – or there may be an opportunity to craft some creative peer-education models?

Gurgaon Max Healthcare diabetes educator initiation

Today, the diabetes educator model only works when patients are referred into an outpatient / inpatient secondary or tertiary clinical setting. Diabetes educators serve an incredibly vital role in the treatment and compliance of the disease, but this is not enough. Patients have to be identified before they have visible signs or worse, complications.

Practical Messaging for Patient Education

Dr. Sadikot, VP of the International Diabetes Federation and President of DiabetesIndia could not stress this point enough. Messages like “use only 15g of oil per day” have virtually no impact on a patient. Messages for patients have to be practical and ACTIONABLE. It is far better to make prescriptive suggestions such as “don’t reuse oil in the kitchen to reduce transfats” or “use half the oil, it will taste the same and be twice as good for you.”

One of the diabetes educators in St. Thomas Hospital in Bangalore relayed a story to me that reinforced this message. When asked if they were compliant with how much oil they consume daily, the patients responded “TK of course, of course.” When shown then that 15g of oil is the equivalent to 3 teaspoons, the patient nearly fell to the floor – “but that’s how much I use in one roti!”

Acknowledging a Medically-Focused Culture

Indian culture has a reverence for academics. Doctors and engineers especially are viewed as a different academic “class” if you will. I think this is why professional development opportunities, such as the India Diabetes Educator Project, have been SO successful. Also, doctors in India are fairly entrepreneurial and constantly looking for ways to operate as a more effective business of one. Independent consultant physicians (or healthcare workers like nutritionists) are very common.

Doctors must be engaged in every aspect of an expanded diabetes program, especially if it relates to challenging the current status quo. They must be convinced that any new programs benefit their practice and the health of their patients. Some physicians and specialists may feel threatened as if their patients are being “taken away” from them by educators. This is absolutely not the case. Physicians will never have time to administer education to patients (especially if this can be done more cheaply by a less expensive and more available resource).

Diabetes is also a strange beast in countries with traditional medicine. When patients think of self-care, they think of ayurveda or homeopathic medicine. When they think of pharmaceuticals, they think of Western medicine. So where does diabetes and most chronic disease fall on this scale? In between. This requires patients and physicians to think differently about care, mentally and in practice.

I also doubt whether the peer-education model (as seen in Mexico) could be successful in India. With such a focus and trust in physicians, I’m not sure patients would trust peers to conduct any level of care or education. The best opportunity I could see now, is that the diabetes educators could identify “peer leaders” that could help educate other patients. I think it would have to be triggered from a medical angle to be successful (at least initially, this too may change!).

Government Partnerships for Long Term Development

Currently, the government provides little to no level of basic care to patients. The federal, state, and municipal facilities all run differently with varied costs to the patients. Government facilities have strong talent because many new residents are rotated though or trained in public facilities. However, MOST shocking to me was that insulin dependent children who could not afford insulin, do not have any standard system to get their medications. This made me quite speechless. “What do these children do?” I asked. I received a wide range of answers – these poor families. I would love to encourage donations from insulin manufacturers to help these children, but at some point the government has to step in here. There has to be at least a quota of free vials they could provide hospitals to help these patients. India’s healthcare budget for the public sector is shockingly low (0.8% of the government budget) and there is more that can be done.

It’s clear to me that Project HOPE’s involvement with government facilities is a must. Proving that a pilot system impacts outcomes may warrant larger government adoption and support for chronic initiatives. Hospital leads could attest to the need and benefit may become champions for expanded public coverage of treatments.

Dr. Agarwala, AIIMS

I interviewed Dr. Jain and Dr. Agarwala, a pediatric endocrinologist and dietitian in the All India Institute of Medical Sciences (AIIMS), one of the largest and most famous public hospitals in India. They reiterated that affordability is a huge issue. Almost half of their patients travel hundreds of kilometers from rural areas for better treatment in Delhi. The hospital has many wonderful resources, but many of these can’t be accessed by low-income patients because of the cost.

In the inpatient ward I saw many mothers lying in the hospital beds with their children; waiting for care, waiting for treatment, waiting for hope.

Rural Outreach

Briefly, rural outreach is going to be extremely important. Lifestyle changes in rural areas are going to trigger more obesity-related conditions and require new models for addressing patient needs. When interviewing mDhil, a health information text messaging service in India, I learned that many rural families share one cell phone (either one to family or several families). Could the same principle work with glucose meters or blood pressure monitors? If affordability limits personal access, could it enable collective access?

Additionally, pictorial educational materials will become more important for rural programs in India. Where “every kilometer the water, food, and language changes” using simple tools to convey health messages effectively are a must (no technical jargon or figures either). This would help prevent very sad cases such as a scenario described to me in Bangalore: a number of rural Type 1 patients were pulled out of school at a young age - their parents (incorrectly) thought diabetes was contagious and would endanger other children. Wow. There are many other implications for rural health initiatives in India and I wish I could have spent more time to really understand this community. This will have to be incorporated into my next visit!

An Afterthought…

Our India team’s last day together we stopped by one of the larger malls in Bangalore on our way to the airport. I looked around and saw overweight men and women right and left – was I in the US? Not only were these malls some of the largest I’ve seen in any country, but the high-calorie, high-fat foods were definitely a favorite. Most of the women over 40 definitely looked like they could be in a pre-diabetic state. Audrey Finkelstein from the J&J Diabetes Institute also mentioned to me during one of our discussion that “you have to go where people get their information.” Where do people spend their time? If it’s church, you go to church. If it’s at the market, you go to the market.

Crowded Cinnabon in a large mall in Delhi

During my time in India I learned that malls have become a favorite destination for families and young couples (in addition to visiting other family homes or friends on the weekends). Perhaps shopping malls could be a target for outreach education, prevention, or early diagnosis? As I go through my notes from India again and again, I will keep probing new ideas. We must reach these people BEFORE they become patients. Remember for many chronic conditions, prevention is better (and cheaper) than a cure!

For more information you can access the India Photo Album and all interview notes on the India Country Profile.