What Public Health Looks Like: Community Health Volunteers in Mumbai

Despite her limp, Priya* navigates quickly and steadily through the narrow lanes and puddles of the slum. When she reaches a door,  she leans against the frame and uses her cane to pound against the door shouting “Baaabi, eh baaabi!!” The people next door laugh. They tell me that everyday she wanders through the community. From her shouting, they can anticipate her arrival long before she gets there.

Priya is a community health volunteer (CHV) at Shivaji Nagar slum. I accompany the CHVs into the community to help identify people to work with for my research, but I find it fascinating to see them working daily to promote health in their communities.

On the day I followed Priya, she was going door to door to make sure the children of the community were vaccinated, especially against polio. India has very recently eradicated polio and through efforts of women like these, India stays polio free.

We would visit some homes to have the families roll their eyes. Yes, we got the vaccine like you told us to. Here is the vaccination sheet. Priya would quickly jot down the vaccination dates and carry on to the next house. Some homes, however, would shamefully admit they hadn’t gotten the vaccination yet, giving some excuse or another. Priya would admonish them to go to the health center that very afternoon to get vaccinated.

After spending so much time reading negative portrayals of public health in India, it is encouraging for me to see people doing such a good job improving the health of their communities. I regularly read about the alarmingly low amount of money spent on health in India and the alarmingly high prevalence of disease and malnutrition, especially in comparison to countries with lower average incomes.

Walking around with the CHVs presents a different story: health matters and these women are invested in it.

I accompanied another women, Ash, who was trying to find a patient who had been admitted to the hospital for severe gastrointestinal problems. We searched and searched throughout the community, with only the name of the woman and neighborhood (one in which several thousand people live) on hand. After lots of nos and perplexed looks, Ash finally came across one woman who heard the name and immediately recognized it. She led us to a very narrow lane and we came across a green painted metal house. Despite the time spent looking for the woman, the conversation was quick and then the CHVs immediately started asking the neighbors about whether they had the same disease symptoms.

Ash explained to me that they needed to search for the woman to make sure there was no disease outbreak. Polluted water or contaminated food could potentially lead to a devastating outbreak if not curbed early. They wanted to make sure that this was an isolated incident.

Many of the women have been doing this work for over twenty years. They tell me that it was very difficult before. They struggled to get people to listen to them. Now people are more aware of the importance of their advice.

Following the CHVs makes me appreciate the kind of effort it takes to address health inequalities. I often think or hear about public health on such a huge and abstract scale: numbers, percentages, growth rates, etc. But walking around with the CHVs, I can’t help but think: this is what public health looks like, real, raw and day to day

*Name changed

Food as a Gift: Chronic Disease and Culture

“Take more! You have eaten too little!”

Is perhaps the mantra of gracious Indian hosts. In many families, it is considered an act of generosity and the duty of a host to insist that their guests continue to eat, no matter how much has already been consumed. While I always appreciate the hospitality, I can’t help but feel a little unnerved when I get goaded to overstuff myself. As someone who has struggled with my weight for the majority of my life, I resent being pressured to act in a way that harms my health.

In a paper on diabetes among Emeratis in Dubai, Rosslyn Badar  wrote about how the culture of food as a gift is contributing to a rise of chronic disease in Dubai. Giving guests large amounts of food when they visit is considered expected, and the greater quantity and richness of the food, the better the host. As Dubai’s economy has boomed and processed foods have become increasingly accessible, this food culture has contributed to the growth of diabetes and chronic disease. The food culture also makes it difficult for those with the disease to maintain a healthy diet.

Indian meal

This culture exists, not because hosts want to make sure their guests get fat, but because it developed in a time of food scarcity. In the past, the quantity of food available was generally smaller and of higher nutritional quality. People also did plenty of physical labor, and were in need of large quantities of food.  Getting your guests to eat more food really was a gift that contributed positively to their health.

Now, there is a mismatch between environment and culture. I am fortunate that I get to control my own food intake on most days, but there are people who face such cultural expectations around eating food from their families everyday. In this environment, it is easy to lose a sense of what foods are healthy and of how much food is enough. It’s no wonder that obesity and chronic disease are rapidly growing in India and in the Middle East.

I have also noticed that sometimes the idea of eating for health, especially for young people without a chronic disease, simply does not exist among many of the older generation.

Last week at a meeting, my host served me some very sugary mango juice. I took a small amount to be polite, but the host insisted “Drink more! drink more!” I thanked him for offering but told him that the juice had too much sugar for me. He then said “Oh, I should have brought Pepsi.” I realized in his mind, he conflated sugar with sweetness, which was not what I meant. The idea of not drinking something because of its sugar content seemed foreign to him.

Another time, at a conference chai break, I saw “sugar free chai” and I went for it, given that I had already had a few servings of sugary chai that day. The older man who preceded me in line stopped me and said “No, this is sugar free chai” and I replied “Yes, I know.” He gave me a strange look and baffledly asked “You like drinking this?”

Last week, the maid at our apartment saw my leftover oatmeal, made without milk and sugar and got angry with me. “This is not good!” she said, “Do not eat it like this!” I tried to explain that I liked it that way, but she took my oats and made a sugary soupy concoction. “This is much better,” she said. I admit it was tasty, but I had trouble explaining that for me, “good” means healthy not tasty.

It seems to me that in many older Indian adults’ minds, it makes no sense to control one’s diet when young and healthy. Controlling one’s diet is something one does after being diagnosed with a chronic disease like diabetes or hypertension. Few realize that preventing a disease is much easier than managing or treating it. I have a family history of diabetes, so I know I am at high risk. I know that the best I can do is to develop a healthy lifestyle now, rather than later.

I realize I am also viewing these issues with my own cultural biases. Anthropologists have written about how many communities in the United States view being fit or thin as a cultural measure of one’s value as a person. People who appear more fit gain more respect and admiration in our culture. In a sort of social ritual, women especially, often discuss what they eat and how much they exercise to boost their image. Refusal to eat unhealthy food is highly admired, and eating excessive quantities of unhealthy food is shamed (especially for people who appear overweight or obese).

Ironically, our culture does not necessarily lead to better health. It can contribute to fat shame: feelings of inadequacy and hopelessness among people who struggle with controlling their weight. That sense of shame can make it even harder to change one’s habits. The American culture around food can also lead to obsessions about food and weight that result in eating disorders.

Worldwide, we need to find a way to think about food and our relationship to it in a healthy way: a way that celebrates food for the life it gives us, but ensures we eat it in a way that sustains us.

What do you think an optimal food culture would look like?

The east-west academic divide

Recently, I attended a lecture at Tata Institute of Social Sciences (TISS) on epistemologies of the global south. For those of you who scorn academic speech, it was basically about how people who live in developing countries (the global south) view truth and create knowledge differently (epistemologies). For anyone with an anthropology/social science background, the talk was pretty elementary: it was about how social science is too dominated by western scholars. Many communities in the developing world see the world differently, and those viewpoints need to be captured to produce better scholarship and solve social problems. 

But the talk left both my friend and I feeling uncomfortable. Here was a man from Europe, lecturing to an audience of Indian social scientists at one of the best institutions in the country about how their voices needed to be heard on the global stage. Yet, who was talking? The question and answer session revealed that the audience was full of scholars who thought about the issues he was posing on a deeper and more nuanced level. 

Spending time in the Indian university setting, especially at a social science based institution, has made me more aware of the big divide between western scholarship and that of developing/non-western countries. 

TISS produces a lot of great work and there are many people here with deep knowledge about social problems in India. Yet, these scholars often only publish in Indian journals or do not publish at all. Confined to these publications, it is hard to gain exposure outside of Indian academia.

Then, there are western scholars from the United States and Europe who publish work about India, exploring the same issues, but often getting more “credit” for publishing and presenting their work in the western world. 

I have done a lot of reading on alternative systems of medicine in India, and I’ve seen two different conversations that barely acknowledge each other: that of the Indian academics and that of the western academics. I remember one Indian paper even used the world “sketchy” to refer to sociological and anthropological work on Indian alternative medicine produced by scholars in the west.

There are many reasons why Indian scholars may not be publishing in western journals.  Anthropology, like any other field, requires scholars to frame their work within existing theories. Many of the major theories are created by dead white men who were involved in colonization. 

Why should an Indian scholar, working to boost the cause of the oppressed frame her work through the lens of an oppressor?

To quote the lecturer mentioned at the beginning of this post: “The theories we have developed do not allow most people in the world to conceive of them as their own”

There’s also the general problem of being institutionally excluded from the academic dialogue in the west. Often, I find an article that looks relevant to my research and then click on it only to find that the university does not have access to the article. This happens even with major journals. I find it surprising that even a great institution like TISS has limited access to journals, but it makes sense. Journal access is expensive. 

Without proper journal access, it can be hard for an Indian academic to have a full sense of the ongoing debates in social sciences. 

Finally, the whole project of people from the west coming to the east to “study the Indians” is itself problematic. It ignores the ability of Indians to construct their own evaluations about their society and its problems. It is a continuation of an ugly history that positions people in the west as “the researcher” and people in non-western countries as the “studied.”

Understanding more about the issues around academics in India has made me rethink my Fulbright grant. At first, I dreamed of producing “original” or “cutting-edge” research. I’ve realized I need to be more humble. There are many people around me with much, much more knowledge than I have. There are people who have explored the issues I am interested in, in much more depth than I will by the end of this grant. The mission of the Fulbright program is “to create mutual understanding amongst people around the world.” I’ve realized that I should rather use this time to listen to the expertise of the people I meet and work with them to elevate their voices on a larger scale. 

Pills, poison and profit: Problems with patient awareness and counterfeit prescriptions in India

This week I’ve spent time shadowing the doctors at Shivaji Nagar. The place is packed in the mornings. Patients in line hover over the patients who are currently sitting with the doctor. The doctor sees each patient in less than five minutes, asking them about their symptoms and then writing a prescription. 

At the geriatric clinic, the one that treats many of the diabetes patients, the doctors often talk to their patients about the pills they are taking using physical descriptions such as “big pill” or “pink pill.” They ask if the patient is taking the big pill or the small pill in the morning and how many times the patient takes the pill. I have not heard them refer to a pill by its name or what it does. One of the patients even asked at the end of the appointment, “So, which one is for diabetes?”

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It makes sense that the doctors do not talk about pill names and what they do with a relatively uneducated population, many of whom cannot read the name of the drug written on the package. But in general, even in more educated populations in India, there is a problem of lack of consumer awareness about the drugs. As a result, the pharmaceutical industry profiting from that ignorance. 

I’ve noticed this with my own treatment. In Jaipur, I had some serious stomach issues twice. When I went to the doctor, he quickly wrote down medicines and then the pharmacist handed me the the number of pills I needed. Unlike the orange bottles we receive in the U.S., there were no warnings on the pills, lists of ingredients or the literature that my science nerd self often likes to peruse about the drug and what it does. 

I once googled the name of one of the drugs I was taking here only to find that absolutely no information was available. The only thing I found was the drug name on a pharmaceutical company’s stock list. Another time I googled a drug I was taking and found that the wikipedia article for the drug had one sentence about how the drug was for chickens. 

Given the prevalence of counterfeit medications and harmful chemicals in drugs in India, I get very nervous about taking drugs here. India and China are the world leaders in producing counterfeit drugs. The World Health Organization estimates that 20% of drugs sold in India are fake. In milder cases, the drugs are substandard and have lowered quantities of active ingredient in and in serious cases, they contain toxic ingredients that cause death or serious injury. 

Counterfeit drugs are mostly produced by some of the many small pharmaceutical firms in India. The drugs are often in fake packaging that perfectly imitates the packaging of drugs produced by major multi-national brands. It is important to note that not all small Indian pharmaceutical firms produce fake drugs. Many adhere to strict quality standards. These companies also often produce social good by greatly reducing the cost of drugs, making them affordable to the average Indian consumer. This pharmaceutical industry is hugely profitable in India, and while some efforts have been made to regulate the industry, they have not been able to tackle the extent of the problem. 

Let me be clear, Shivaji Nagar’s health center is likely not distributing counterfeit medications: because they are a government hospital, they are subject to more regulation and scrutiny than private health centers. However, the majority of India’s poor do not exclusively go to  public clinics, most go to private clinics with doctors who often do not have medical training. It is from these clinics that counterfeit medications are most prevalent. 

This is why the medical culture, where patients are kept ignorant about drugs and what they do is toxic. While regulation is important, consumer awareness is also crucial. People need better education so they can understand how to identify potentially fake drugs and awareness to pay attention to whether they feel drugs are working. Currently, patients are expected to listen to the doctor’s advice and accept drugs from the pharmacist with minimal questioning. 

Thankfully, there are initiatives to help reduce counterfeiting. Many medications contain a barcode and a number to which an SMS can be sent to confirm that the medications are properly manufactured by the company listed on the package. What is needed now, is consumer awareness to make sure they verify the legitimacy of the drugs they take. 

Read more about counterfeit drugs in India:

http://articles.economictimes.indiatimes.com/2013-06-16/news/39993454_1_anti-malarial-drugs-counterfeit-drugs-fake-drugs

http://www.washingtonpost.com/wp-dyn/content/article/2010/09/10/AR2010091003435_2.html?sid=ST2010091105590

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2755136/

Shattering my Expectations: My First Week at Shivaji Nagar

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This week I have started doing fieldwork at the urban health center at Shivaji Nagar. Shivaji Nagar is a very large slum of on the east side of Mumbai. It is located near a large city dumping ground. Large is no exaggeration. I took a walking tour of the place, and encountered the huge mountain of trash beyond the fence to the community. Around and on the dumping ground are ramshackle homes of many poor migrants to the city. Unlike the concrete, brick and tile homes of the main areas, these homes are generally constructed of sheets of metal and large pieces of plastic tarp. As I was told by Dr. Velhal from Nair Hospital, this is one of the poorest areas in Mumbai.

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Dumping ground in the distance with a non-notified home in the foreground

On Tuesday, I accompanied two social work students from TISS out into the community to talk to some people for my project. We stumbled upon a group of women who were sitting on their doorsteps chatting, and so we stopped to ask them about diabetes. The woman told us that her husband had diabetes and another woman told us that she and her daughter had diabetes.

“There are people with diabetes in this house, and that house, and that house…” said one of the women, gesturing her hand down the long row of homes.

I asked her if diabetes was growing in the community and she said yes, but when I asked why, she didn’t know, but thinks it has to do with people doing less labor intensive work than they used to.

We talked about her husband’s condition. His vision was darkening and so they went to the doctor and found out he had diabetes. Since then, he’s has stopped eating white rice and sweets and goes to yoga classes every Saturday. He works long days as an autodriver, so he barely gets time on any other day to care for himself. She said the disease was now more under control than it had been before.

The other woman, whose daughter also had diabetes,  said that diabetes was quite prevalent in her family. Many of her older relatives ad siblings have the disease. She told me that the manage the disease by also avoiding sweets and exercising regularly.

I was impressed with how these two women both knew quite a bit about disease management and took initiative to change their lifestyles. I wondered if it had to do with the strong diabetes program around the corner in the BMC clinic.

Another interesting thing was that when I asked one of the women if she felt any shame about her diabetes, she said no. Other studies had found that women often “suffer silently” and don’t like to reveal their condition to others.

The woman found my question ridiculous “Shame? Why would there be any shame? We talk openly about our problems here! The only shame would be if someone had done something bad, then there would be shame.”

It was amazing how those two conversations shattered my initials expectations: to find a community with poor knowledge and limited open about the disease. Instead, the women were taking control of the disease and openly sharing their experiences with others. I look forward to talking about these issues with more people in the upcoming months.

Emergency Chai: My Meeting at a Mumbai Hospital

“Get us two chais. It’s an emergency. There’s a guest here”

Anyone who has worked in India knows that meetings do not happen without serving chai (black tea with milk, sugar and sometimes various spices). Still, I found it funny that in one of the largest hospitals in Mumbai, getting chai for our meeting was an “emergency.”

ImageI had come to meet with Dr. Velhal, the author of a paper about a slum based diabetes intervention in Mumbai. I emailed him in an effort to find out where to conduct my project and learn more about the issue of diabetes. It turned out to be one of the best meetings I have had thus far.

We spent a long time talking about the issue of diabetes in Mumbai.. He estimates that the overall prevalence of diabetes among the adult population in Mumbai is around 20%, a much higher estimate than I had previously read. He explained that the growth of diabetes in the slum areas is due to changing eating habits and lifestyles, though there is also a genetic component. The hospital runs an outpatient clinic that specializes in diabetes in a major slum area in Mumbai. They provide diagnoses, follow-ups and medicines for free in the clinic, and see somewhere between 450-500 patients per day.

While the clinic dispenses medicines, Dr. Velhal is uncertain about people’s level of compliance with the medications. The clinic also gives people advice about diet and exercise, but again, little is known about how the patients understand and incorporate this advice into their daily lives.

That’s where I come in.

Their group in the community heath department is trying to conduct lifestyle interventions among people living in slum communities. However, as Mr. Velhal mentioned, they have a very shallow understanding of people’s day to day lives with diabetes.They need to understand what needs the people have and what stands in their way of implementing changes in their lives. In order to do a long-lasting intervention against the disease, they have to understand how the disease fits into people’s daily lives.

Health is often not the priority of the people he works with, especially in the case of diabetes when it does not interfere much with daily life until complications arise. People generally put financial interests ahead of their health needs.

Doing exercise is very difficult for people living in slum areas. In a crowded city like Mumbai, there are few parks for exercising, especially in slum areas. A health intervention in a slum area would have to require teaching people about exercises that can be done at home.

Dr. Velhal acknowledges that diabetes is a difficult disease to treat. Once people are diagnosed, they must manage the disease for the rest of their lives. He has to keep the goals of the clinic realistic: to be be able to delay the use of insulin and the emergence of complications once diagnosed.

My meeting with Dr. Velhal mostly confirmed many of the lessons about diabetes in India that I have learned through my readings. More importantly, I’m excited to get to visit their urban OPD and do some observational work next week!

The Wait: Lessons Learned from The Unglamorous Side of Research

It’s easy to romanticize field research; when I think of an anthropologist, I think of someone living in a verdant village in a tropical land who spends their days connecting deeply with people about their lives and their dreams. I rarely think of someone sitting at their computer and sending emails, which is what my life has looked like lately.

Real Anthropologist:

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Famous anthropologist, Bronislaw Malinowski

Me:

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I often fall into “the dream of the glamorous researcher” and think my blog needs to be about my successes: about my revelations or life changing moments. When I haven’t had those idyllic experiences, I dismiss all my current life as mundane and un-noteworthy.

But I’ve made a decision to try to write a blog post every week and so far I’m sticking to it.

So what have I been doing lately? Mostly waiting and making phone calls (and doing lots of reading in between). I’m trying to find an NGO or a health center to do field work with, but I’ve been realizing it takes a long time to connect with people. I’ve been sending lots of emails and phone calls to NGOs and doctors here in Mumbai, with a few successes but many setbacks.

Here is what I have learned:

1) Send an email. if you don’t get a response in 1-2 days, call them.

I made the mistake earlier, especially when I was in Jaipur, of sending emails and waiting for weeks to get a response. Sometimes I would send a follow-up email, but if that did not work, I often considered it a lost cause.

Many organizations in India, especially NGOs, don’t check their email very often, so it’s important to call. Usually when I called, the person would tell me that they saw my email but didn’t have time to answer it. In a place like India, talking to someone in present time is so much more valuable than email. It shows that you are actually committed to your goals and are not just some random person who sent an email.

2) Better yet, show up at their office

Last week, fellow Fulbright friends were visiting from Delhi and since I was still in project limbo, I accompanied them to meet with some doctors for their research. We first met a tobacco researcher, and then she referred us to a cancer doctor for my friend Sara (read her blog or my previous post about her work).  We went straight to that doctor’s office and got a meeting appointment for the next day. Showing up works.

Through them, I got connected to an endocrinologist with whom I am visiting this week.

3) Sell yourself

I made the mistake earlier in this process of simply sending people my proposal and waiting for a response. After discussing my tactics, I realized that I really needed to spell it out for my contacts how my project could be of use to them and why they should help me with it. I previously thought that once they saw my proposal, we could later negotiate how to make the project mutually beneficial, but I’ve realized how important it is to show my willingness to want to help them with their work early.

4) Contact everyone.

A few months ago, a friend told me about how she emailed an author of a famous book related to her project asking for advice. She actually got a reply. My thought was “You can do that?!??” Now, if I read a paper I find interesting, I go ahead and email the authors to tell them about what I’m doing and ask for advice. I often don’t get responses, but that’s okay because it’s worth for when I do. I’ve been able to get some meetings and advice out of this tactic. To quote the cliche: You miss 100% of the shots you don’t take. 

5) Strike a balance between patience and persistence

I can’t believe it’s already been a month since I’ve been here. I get anxious when weeks pass and I feel like I’m still in the same place. But it’s important to learn to strike a balance between being patient and persistent. When coordinating with others, you have to work with their schedule. NGOs in India are often limited with time and resources so it’s important to be patient.

At the same time, I have to be my own advocate  and seek opportunities. When I was feeling stuck a few weeks ago, I got an email about a conference at the university  where I am affiliated. I went ahead and submitted a presentation and got a five minute slot to present. It was a great way to meet people, practice public speaking and talk about issues that matter to me. I even got connected to an NGO with whom I may be doing work.

6) Regularly evaluate your productivity and goals

It’s also important to keep track of how time is used. Every week on Sunday, I make time to make a list of the accomplishments I’ve made this week, however small. I then I make a table in my journal where I write my ongoing difficulties in one column, confounding factors in another column (forces outside of my control, that contribute to those difficulties) and an action plan in another column for tackling those difficulties. It helps me stay in a mode where instead of dwelling on my ongoing problems, I take an active stance in addressing them.

7) Just go

I’ve recently realized that while I wait for a more formal arrangement with an NGO or a a health center, I might as well take advantage of more accessible resources. When I was walking to the hospital yesterday, I realized that there were rows upon rows of pharmacies selling drugs. I might as well stop ask about the drugs they sell for diabetes, whether ayurvedic or allopathic and about the number of patients that come. On Monday before I go back to the hospital to try to stalk the doctor I’m trying to meet, I’m going to come up with the questionnaire to ask the pharmacies.

The biggest hurdle is to take the leap: forget my fear and shyness and get out there.