After Internal medicine residency I joined the Health Equity Action Leadership Initiative (HEAL Initiative) as a rotating global health fellow. I spent my first six months at Jan Swasthya Sahyog (JSS, Ganiyari, Chhattisgarh, India) which is a secondary care hospital in rural central India.
At JSS, I met Chandni (not her real name) a 20-year-old lady who grew up in one of the tribal villages in rural Chhattisgarh when she presented to JSS for shortness of breath. Chandni’s family is poor, they work and own about one acre of land which they use for sustenance leaving them well below the national poverty line. Rural Chhattisgarh, and neighboring state of Madhya Pradesh, are among the most deprived parts of the country, and the world. Forty percent of people in Chhattisgarh live below the poverty line(1). The poverty line, which some journalists call the “starvation line”(2) is approximately 500 Rs a month per person, or a paltry 30 US cents per person per day(3). 30 cents a day for everything: food, shelter, education, transportation…. Chandni’s family raised her in this crushing poverty and 8 months prior before hospital admission she married a young man from a nearby village. A few months after the wedding Chandni started having fevers, joint swellings, a facial rash followed by difficulty breathing and swelling of the legs. Her husband took her to a local healer. The healer was reasonably priced, barely a day’s salary, and gave them some concoctions but his remedies did not work. Her breathing worsened, she could barely walk out the door, and her husband dutifully took her to the local “doctor”, a known quack, but this was cheaper than a trek to the private hospital. The quack gave her a shot in each buttock and sent her off. This was more expensive than the healer, but no more effective, and her symptoms progressed to being short of breath at rest. The couple was faced with complex problem that only the poor are faced with: where to go next for healthcare that will not throw them further into destitution.
One option for Chandni would be to go to the local public health system. The local public health system is wrought with its own issues: doctors are often not present, medicines and routine medical supplies are out of stock so patients have to pay massive amounts at pharmacies(4). In fact, I recall the case of Ranbir (also not his real name), a middle-aged man from a far village in Madhya Pradesh, who had a stomach ulcer that perforated causing a terrible intra abdominal infection, a surgical emergency. There was no anesthesiologist so the public hospital placed a tube in his abdomen to drain it, and treated with him with intravenous antibiotics for a week (which they bought out-of-pocket from the local pharmacy) while he languished until his family brought him 300 km to our hospital. Another option for Chandni would be to go to a private hospital in the nearest city. Private hospitals offer all the high technology medical care as in the West but they remain inaccessible to the rural poor both due to distance ( at least a day of travel, and the associated cost of travel) and due to cost. Private hospitals require cold cash before you ever entered the door; they do not allow you in if you do not have the money. Once you ran out of money they discharge you regardless of how ill you are. Chandni remembered her distant aunt, Anika, being discharged from a private hospital after being admitted for a malignant pleural effusion still terribly ill but also now penniless because of all the expensive tests, medicines and procedures performed many of which are unnecessary(4). In my conversations with a colleague who worked in the private sector I learned that private hospitals have quotas for their physicians to meet on a certain number of expensive tests like CT scans, whether patients need it or not. Of note, in the United States and despite the affordable care act, impoverishment due to medical illness remains a significant public health issue; the repeal of the ACA without some alternative plan will bring Chandni’s dilemma to millions in the United States who lose insurance and suffer catastrophic medical illness or have preexisting medical conditions(5).
Chandni and her husband weighed their options carefully, and saved their money over 4 months, until they decided to make the journey 300 km away to Jan Swasthya Sahyog, a hospital known to give good quality care, at affordable rates. It took them 2 days to get to JSS, on a crowded bus, with Chandni pale, breathless, panting and her whole body swollen. She got in line for a new OPD appointment, usually a several days wait. Mercifully, the first night a member of the staff saw her deathly condition and rushed her to the emergency department. She was examined by several doctors and urgent tests were done. High flow oxygen was blown into her nose. A doctor put an ultrasound probe on her chest, teaching the residents what she heard to be right heart failure and severe pulmonary hypertension, probably due to a disease called lupus. She was promptly admitted to the intensive care unit. They gave her potent intravenous medicines to remove the fluid in her lungs, medicines to improve her blood pressure and chemotherapy to control the lupus. They got advice from experts using the internet on some of the details of her care. The doctors were not sure she was going to survive… In the first week, her husband came to know that because of the severity of her illness and the immunosuppressive medications she needed to survive, that she would likely not be able to bear children. He left her. Her mother remained at the bedside caring for her. She remained hospitalized for 2-3 weeks. She survived and went home, back to her parents’ village. She returned for follow-up three weeks later, much improved to get her next cycle of immunosuppressive medications to control her lupus.
Chandni’s story ( and to a lesser extent as do Ranbir’s and Anika’s stories) illustrates some of the huge hurdles and challenges the poor, in a terribly poor state, face. It is the poor who disproportionately suffer illness. Much of the illness they suffer from is readily treatable using technology we have today. However, access, cost and quality remain dismal for them. Because of limited insurance and heavy out-of-pocket expenditure the poor are particularly exposed to further impoverishment. The poor alone have to weigh the of risks, costs, benefits of seeking medical attention something that is often taken for granted in the Western world.This is a complicated calculus with many unknown variables to make an impossible decision – food for the family in the future or medical care an individual now.
My mentor Dr Yogesh Jain says “people from small places don’t’ just have small problems”. Chandni came from a small village and had a complicated life threatening disease that would typically involve many specialists in USA. In fact, looking at the Lancet global burden of disease study, South East Asia still have the usual life threatening diseases that Americans face and at the same rates- ischemic heart disease, strokes, COPD, hypertension and diabetes(6). I have seen how patients with cancers present to JSS at a younger age, but their presentation to medical care is far too late to cure. Patients with hypertension and diabetes go untreated for years and they come with complications that are exponentially more difficult to address and cope with in low resource settings (stroke, kidney failure, heart failure, limb amputations). It is tragic that many of the end stage diseases are preventable- for example, HPV related cervical cancer. Many of these shared diseases we all face are often manifest in a bizarre form, one that differs from what is seen in the West. For example, my colleague Dr Sushil Patil and Dr Yogesh Jain are publishing data about the diabetes we see in Ganiyari- a significant portion of which is non type 1, but also not type 2- there is a strong association with malnutrition and we have so much yet to understand with the goal to prevent and treat(7). Moreover, they present with complicated medical problems too– we have a sizeable cohort of patients with complicated lupus just like Chandni, or complicated pediatric surgical anomalies that require urgent/emergent surgical intervention. On top of this they face terrible diseases that are directly proportional and caused by the abject poverty they live in – malnutrition (adults weighing 30 kg is not uncommon (8)), tuberculosis, death from diarrheal diseases are only a few(9).
Access and cost are major barriers. One example is surgical care: Dr Raman Kataria at JSS is the only pediatric surgeon in hundreds of kilometers who is preferentially treating the poor. All these patients NEED medical care (and a substantial portion need surgical care like Ranbir). Care that the public healthcare system is not currently filling, and care that the private system refuse to meet without a high degree of profiteering (that patients cannot afford) as illustrated in Anika’s case. The costs of medical care astronomical: a recent study of the NSSO survey (quantitative health and demographic survey by the Ministry of Statistics) showed that medical expenditure in the last decade in India has soared, that 80% of the cost is paid out-of-pocket and for rural household 68% from savings/assets and 18% from debt(4). I implore you to reflect for a minute on what someone earning 30 cents a day has saved. Only 13% rural population received any coverage through public funded health insurance schemes(4). Patients like Chandni travel hundreds of kilometers to reach JSS for access, cost and quality medical services.
Before you get too judgmental on Chandni’s husband- I ask you for a minute to be in his place: newly married to a beautiful young woman, who is now deathly sick, cannot provide you children (no children in rural India means no helping hands in the fields), not working because you are spending your time in hospitals, selling what little property you inherited for medical expenses, only to be without a source of income to support your family. It is in this quandary that the sick and poor patients with extremely constrained resources need to make decisions that affect their health, their livelihood, their families and future. Impossible decisions, if your goal is to have a healthy family. Isn’t that what many of us want? It’s like asking a baker about to bake sourdough bread: you can only choose one- do you want water or flour to make your bread? Bakers need both.
JSS serves a particularly deprived population: 90% of patients are from disenfranchised and marginalized groups, 40% are underweight with a body mass index (BMI) less than 18.5 and roughly 40% of JSS patients come from neighboring Madhya Pradesh (two days journey of more than 200 km). JSS is among the few institutions that offer the “preferred option for the poor”, that people like Paul Farmer describe. They have found creative ways to do this but most relate to principles rooted in good medicine, high value care and compassion. Some examples that relate to Chandni’s case are
1. Encourage good medical history and physical examination to guide judicious use of expensive tests likely advanced imaging (which are offered at cheaper rates through trusted radiologists and pathologists). We sent her specialized lupus test (ANA) after suspicion from her history and exam.
2. Formulary drugs are generic and obtained and offered to patients at a fraction of outside costs. Diuretics, prednisolone, sildenafil (used in pulmonary hypertension), cyclophosphamide were much cheaper and more affordable for her.
3. Becoming generalists and training generalists by expanding their scope of practice and gaining new skills. For example, the residents are learning to interpret basic point of care echo.
4. Using technology (skype, email) to contact subspecialists for consultations where required. We discussed the case with a cardiologist in the US (who saw the ultrasound images), emailed a pulmonary hypertension specialist, and on follow-up she was skyped with a rheumatologist for their opinions.
5. Taking into account her baseline poverty status and discounting her care further to prevent further medical related impoverishment. Her care was discounted heavily ( at least 50%) after we found out her husband left her. For reference the cost of care at JSS is already at least an order of magnitude cheaper than at a private hospital, and often two orders of magnitude cheaper. For example, an ICU bed at a private hospital is 10000 Rs per night, at JSS it is 800 Rs per night.
There are numerous other ways JSS is addressing the priorities of the deprived rural poor – research epidemiology, advocacy, community health work, training and strengthening of the public health system and postgraduate family medicine training. At JSS, a group of inspiring doctors, nurses and community health advocates are pouring time, effort and love into making the calculus equation solvable.?
Acknowledgements: my entire family at JSS and specifically who read this and gave me comments: Dr. Neha Kale, Dr. Pankaj Tiwari, Dr. Reshma D’Souza, Dr. Naman Shah, Dr. Shaheen Chowdhury, Dr. Timothy Laux, Dr. Priyank Jain, Dr. Yogesh Jain and Dr. Sriram Shamasunder.
Image courtesy : Dr. Lokesh Tamghire
1. Below Poverty Line in India [Internet]. Open Government Data (OGD) Platform India. [cited 2017 Jan 6]. Available from: https://data.gov.in/catalog/below-poverty-line-india
2. It’s starvation line [Internet]. Deccan Herald. [cited 2017 Jan 6]. Available from: http://www.deccanherald.com/content/42581/its-starvation-line.html
3. Expert Group on Methodology for Estimation of Poverty [Internet]. [cited 2017 Jan 6]. Available from: http://planningcommission.gov.in/eg_poverty.htm
4. Jayakrishnan T, Mc J. Increasing Out-Of-Pocket Health Care Expenditure in India-Due to Supply or Demand? Pharmacoeconomics [Internet]. 2015;1(1). Available from: http://www.omicsonline.org/open-access/increasing-outofpocket-health-care-expenditure-in-indiadue-to-supply-or-demand-pe-1000105.php?aid=68476
5. Obama BH. Repealing the ACA without a Replacement — The Risks to American Health Care. N Engl J Med. 0(0):null.
6. Murray CJL, Lopez AD. Measuring the global burden of disease. N Engl J Med. 2013 Aug 1;369(5):448–57.
7. George AM, Jacob AG, Fogelfeld L. Lean diabetes mellitus: An emerging entity in the era of obesity. World J Diabetes. 2015 May 15;6(4):613–20.
8. Jain Y, Kataria R, Patil S, Kadam S, Kataria A, Jain R, et al. Burden & pattern of illnesses among the tribal communities in central India : A report from a community health programme. Indian J Med Res. 2015 May;141(5):663–72.
9. Murray CJL, Vos T, Lozano R, Naghavi M, Flaxman AD, Michaud C, et al. Disability-adjusted life years (DALYs) for 291 diseases and injuries in 21 regions, 1990–2010: a systematic analysis for the Global Burden of Disease Study 2010. Lancet. 2012 Dec 15;380(9859):2197–223.