September 23, 2010

Dukhni Bai's Story - Diabetes and the Vortex of Poverty

A tale of illness and disability that have brought a good family to the brink of despair. 

Dukhni Bai, 36, ravaged by diabetes for eight months

Duhkni Bai at the JSS hospital, skin and bones
Dukhni Bai, 36, first presented at the JSS hospital in Ganiyari in January 2010. She spoke of falling ill in November 2009, at the time of the rice harvest. At first, she noted weakness in her legs and a growing, ultimately disabling, weariness. Both were accompanied by constant thirst and frequent urination. A gnawing backache tormented her throughout the day and night. She progressively lost weight despite a good appetite.

Landless laborers sewing paddy, rural Chhattisgarh
Until then, she worked in the fields in the vicinity of her village, Nevra, in the Bilaspur District of Chhattisgarh. Every year, beginning in July with the onset of the monsoon season, like most other day laborers in central India, she sowed rice seedlings in the fields around her village, weeded the growing plants and then, in October and November, harvested the mature paddy (rice stalks). Like others around her, these months, Dukhni Bai could be seen all day bent over at the waist, much of the time exposed to the brutality of the sun and high humidity.[1] These relentless daily assignations earned her 40 rupees daily – less than a single U.S dollar.

Dukhni Bai's husband, Jai Hari
Her distinguished-looking husband, Jai Hari, earns a few rupees more than his wife at hard labor and fieldwork, gaining often 50 rupees daily. Such marginal employment is available most months, September being the usual exception. In July and August, it’s sowing seeds and plowing. Following harvesting in October and November, in December and January, it’s threshing season, turning dhan[2] into edible rice. The rest of the year, February through May, when there is no fieldwork, Jai Hari looks for work “digging things up”. When available, he hires on to plant vegetables in other people’s fields.

If showers come in June, Jai Hari can plow the fields of landowners. He owns a massive wooden plow. Owning no animals, like most other farm laborers in these villages, he shoulders this massive beast and takes it a kilometer to the fields of his employer. 

Another farmer with a plow like Jai Hari's on the road, Chhattisgarh
That’s a good question
Since Dukhni Bai became profoundly weak from diabetes, their income has been cut in half. I asked him the inevitable: How have you managed financially since November? At first, no answer was forthcoming. Just silence while Jai Hari thought how to put it. Finally, after a forever pause, he replied in a measured, almost inaudible, voice: That’s a good question.

Half of nothing is nothing
The cost of diabetes treatment alone for an insulin-dependent patient averages 1,000 rupees a month ($20), annualized, a fortune for a poor village family.[3] Medical treatment is the second largest source of debt burden in rural India, the first being indebtedness to merchants for agricultural supplies and food. And who can afford a death in the family – four to five thousand rupees for a proper village funeral? The answer: more indebtedness.

An observation by Dr. Ravi da Silva, a JSS physician: As the price of dal[4] has zoomed, those that ate it once or twice a week can’t even do that any more. 

No one helps
Jai Hari’s family includes Dukhni Bai, their three children, his 80 year old mother and himself. To cope with his catastrophic loss of income, he has been taking advances from the farmer he works for. When he and Dukhni Bai both had earnings, they’d just get by. As a Below the Poverty Line (BPL) family,[5] they are eligible for a government subsidized 35 kgs. of rice monthly. This lasts a scant two weeks of the month. Then, it’s skimping and going hungry. Vegetables are unaffordable, except in absurdly small quantities. We watched them eating scraps only one day. Prices for rice and dal in the market have almost doubled in the past two years.[6] The family of six used to have two kilograms of rice a day; now it’s one. Dal is unaffordable. Think of it, after a full day’s hard labor for him and the exhaustion of diabetes for her, only small portions of rice and bits of vegetables.

Jai Hari is by disposition an impressively uncomplaining and reserved man. He does not raise his voice. Does family help out?, I asked.  Without a trace of bitterness, he replied: No one helps. My three brothers are concerned with themselves, their families.

The exterior of Dukhni Bai's home, one room of several (on right)
Their home is one small, mud-walled room in an extended family compound of five rooms. The government provides an electrical connection, one bulb and a single light socket, the usual subsidized set-up for rural families designated below the poverty line. The family has one additional bulb, freely, almost proudly, admitted as stolen, but to this end, the wiring has to be shifted from one room to the other, allowing only one light to be on at a time. Like most homes in the villages of Central Chhattisgarh, theirs has no latrine. Sometimes it’s to the forest, a kilometer away; at other times, they find a place next to their mud house. There is, however, an abundant supply of water available at all hours from a public school just across from their house.[7]

Jai Hari with two of his children. Daughter is crippled by polio.
Before Dukhni Bai fell ill, over five years, she was able to save several hundred rupees by carrying heavy loads of grain on her head, a kilometer distance. Finally, the savings were sufficient for her husband to buy a second-hand bicycle. But like many bicycles in India, it is idle now for want of repairs.

The moral of the story: an incapacitating chronic illness, has tipped this family into  desperate poverty.  Once Dukhni Bai’s insulin-dependent diabetes is well controlled, perhaps their extreme suffering will be mitigated and that then they may return to a life of hard labor allowing simple year-around, below-the-poverty-line penury. Is this too much to hope for?

[1] With the harvest, the rice shoots, cut down first with scythes, are then dried, bundled and carried, 30-50 kgs in a load, often a few kilometers to an area where the grain is threshed
[2] Dahn or paddy are the names of the unprocessed rice plants as harvested.
[3] Dr. Yogesh Jain, a founding member of the JSS staff, says that 1,000 rupees is a conservative estimate of the combined monthly cost of laboratory tests, physician visits, and insulin kits.
[4] Dal, a mixture of a variety of lentils and spices, is a staple of the Indian diet.
[5] BPL, a complicated story. Vast numbers of rural poor do not qualify. For those that do, government subsidies are absurdly inadequate. Of promise, is the National Rural Employment Guarantee Act of 100 days of labor, at the minimum wage, for a family in a year. As yet, 100 days remains an unattained right for most. Jai Hari hasn’t even applied for the benefit as the enrollment in his village has been only when he has been away working in the fields.
[6] Three years ago, 2007, dal cost 45-48 rupees/kilo in the market and now 80 rupees; rice in two years has gone from 19 rupees/kilo to 35. Source: Dr. Rachna Jain, a JSS physician.
[7] A 2007 JSS study, however, on the water from randomly selected bore wells in villages of the region showed that 40% contain significant titers of pathogenic e-coli, due to fecal-oral contamination. This water, as well as lack of hand-washing facilities for the handling of food, are major sources of gastroenteritis causing disability and life-threatening dehydration in infants, small children and the elderly. In 2010, JSS has in development additional resources and initiatives to address these problems.

September 17, 2010

Sonarin Bai's Story - Death in Delhi

Sonarin Bai, Chronic Myelogenous Leukemia

Dead in Delhi: At Whose Door?

Sonarin Bai (on the left), Eeswari, 10, her daughter, and Leela Bai, her aunt
July 12, 2010, JSS hospital grounds, Ganiyari, Central Chhattisgarh
Terrible forebodings
I first met Sonarin Bai, 30, mother of three, on July 12, 2010. With worsening health, she had traveled for two days from her village in the neighboring state of Madhya Pradesh to Jan Swasthya Sahyog (JSS) located on the outskirts of Ganiyari Village[1]. Neighbors and relatives advised that it would be worth the arduous journey to see a good doctor. She and her husband, landless laborers, borrowed 3,000 rupees for the trip to Ganiyari.

She arrived at the JSS hospital accompanied by her mother, Sumantri Bai, her aunt, Leela Bai, and her middle child, Eeswari Bai, a cherubic-looking 10 year old with outsized dark, inquiring eyes. Though the child remained silent throughout, Sonarin explained that Eeswari had been terrified by her illness. She was crying and would not leave her mother’s side. So Sonarin had to bring her along. The child had terrible forebodings.

A steep decline
Sonarin spoke of ten or more episodes of fever and cough over three years, each lasting a week or more. But since January 2010, she had noted pain and swelling on the left side of her abdomen. Both got progressively worse. By the time she sought help, she had lost a great deal of weight, suffered back pain and felt feverish many days. Progressively weak and exhausted, she had to give up working in the fields. With any exertion, she could not catch her breath.

A diagnosis and hope
The doctors at JSS quickly determined her problem – a rare form of bone marrow cancer called Chronic Myelogenous Leukemia (CML)[2]. They noted huge enlargement of her spleen that accounted for the swelling in her abdomen.[3]. A simple blood test revealed the countless millions of cancerous white blood cells that are characteristic of this disease.

The only hope for her survival would be an anti-cancer drug, Glivec, controlled and marketed by Novartis, a pharmacological giant. For years, Novartis had been battling the Government of India to gain patent protection for this product. The penultimate legal action took place in 2007 in the High Court of Chennai in the southern state of Tamil Nadu. Novartis lost again though it appears still to be planning further appeals. Perhaps to appease the public and presumably the courts, Novartis agreed to provide Glivec[4] free of charge to all poor Indian patients in need of the drug[5]. The catch, however, has been that these near-indigent patients would have to make their way either to Delhi, Mumbai, Calcutta, Vellore, or another major cancer treatment center of Novartis’s choosing, to get the drug. Every three months, they would have to return for another round of treatment.

Death in Delhi
So it is that Sonarin Bai learned that she would have to travel to the All India Institute of Medical Sciences in Delhi to get the medicine that would hold her otherwise fatal illness at bay. Her physicians at JSS advised that she return in a week to join seven other patients with a variety of ailments for the trip to Delhi. On July 28, Sonarin came back from her distant home, this time accompanied only by her mother, Sumantri Bai.

Jai Kumar, a member of the JSS staff, had guided patients from JSS to Delhi on two prior occasions.  He knew the ropes.  But this time, for one of the 8, Sonarin Bai, tragedy lay ahead.

Jay Kumar recalling Sonarin Bai's final hours

Jay Kumar's account - Don't cry mother. She's no more.

Day 1 - On July 28, the eight patients and their relatives, numbering 19 in all, boarded the train in Bilaspur. The 24-hour trip to Delhi proved uneventful.

Day 2 – We arrived the following evening and checked in at the darmsala hostel for patients and family.

Day 3 –  I  took Sonarin Bai to the AIIMS Hospital. But she was one of four patients who could not be seen by a doctor as she had no prior registration and we ran out of time to get this done.

Day 4 – The following day registration was closed. “It was an Outpatient Day”.

Day 5 – Sonarin Bai finally got her registration card. But the oncologist to whom she was referred left word that, before she was to be seen, blood tests and x-rays had to be done.

Day 6 – Only the blood tests could be done. Sonarin complained of fever.

Day 7 - We went for the x-ray. The clerk advised: “Go back to the doctor and request that the x-ray be without charge.”

Day 8 – The doctor wasn’t in his office. We went to the Outpatient Department but we couldn’t find him.

Day 9 – We returned to the X-ray Department and paid 30 rupees and the x-ray was taken but no report was given. We were told to return the following day.

Day 10 - We returned to the X-ray Department and got the report. Then we went to the doctor’s waiting area and got in a queue. By then, it was 2 in the afternoon. At 7PM, the oncologist finally saw Sonarin. He examined her abdomen and prescribed some medicine. He explained, however, that he could not be her physician, nor follow her, as his specialty was limited to cancer in children. Therefore, he advised that he would refer her to an oncologist for adult patients. The appointment would be the following week.

Day 11 - I went to a pharmacy and got the medicine. On my return, Sonarin Bai said: “I don’t feel well at all.” I told her that the medicine had come. “Take it”, I advised. Towards evening, she developed stomach cramps and diarrhea. She had a fever and appeared quite ill. We decided to take her in a wheelchair immediately to the hospital emergency room, a fair distance to go on foot. When we got there, she saw a succession of three physicians. They placed an intravenous line. While her mother waited outside on the hospital veranda, one of the physicians came to me and said: She is seriously ill. Soon they informed me that her condition was critical. Then they took her elsewhere in the hospital.

Day 12 - At four in the morning, one of the physicians returned. He approached me and said: Tell her mother, she’s no more. I went to her mother on the veranda outside of the hospital and spoke to her.  Mat ro mataram sonarin ab duniya mai nahi hai. -  Don’t cry mother. She’s no more.

Sonarin Bai's mother, Sumantri, recalling her daughter's recent death in Delhi
Why did this poor woman, mother of three, die in Delhi? Here is what I think and have learned to date.

Sonarin Bai did not have to die. She could have received Glivec at JSS and avoided the trip with all the delay, systems failures and fatal neglect in Delhi.

For reasons unknown, Novartis has refused to provide this life-saving medicine to qualified oncologists, and other physicians capable of administering chemotherapy, at reputable medical institutions, like JSS, throughout India where poor patients have ready access and can receive treatment without delay.

Novartis insisted that she, and thousands of others like her, come to a treatment center they have authorized in one of India’s major cities, e.g. Delhi, Mumbai, Calcutta. It is alleged that Novartis may be motivated in part to restrict access points in order to do clinical research on the referred patients at these centers.[6]

Qualified oncologists and general physicians who administer chemotherapy exist in many smaller cities throughout India who could administer Glivek competently.[7]

Novartis on its own web sites makes contradictory statements about which among India’s poor receive Glivek free of charge:
“The price of Glivec is almost irrelevant in India as 99% of the patients who need the medicine receive it free from Novartis...” [8]
Contrast that with the following statement by Novartis: “…In India, 99% of patients prescribed Glivec receive it free.”
Which is truthful?

Is Novartis claiming that it reaches 99% of the patients in India with CML who need Glivek to survive? This is patently absurd. Novartis itself claims that it has treated 6,600 individuals with CML in India. However, S. Srinivasan, an authority on pharmaceuticals in India has written: There are “over 30,000 cases of …CML…reported in India every year.”[9]

Thousands among them are poor. Many are undiagnosed. Only a minute fraction could afford to buy Glivec on the open market or the generic, far cheaper but still prohibitively costly. Others have no way to travel from their villages to the designated treatment centers. They are too poor and may know nothing of the program or how to gain access.

And what awaits patients who do make it to a treatment center after many days and weeks of delay, an arduous journey and a system that fails them on arrival, as it did Sunarin Bai?

When I first interviewed Sonarin Bai, I asked her if she knew why she had to go to Delhi and could not be treated at JSS in Chhattisgarh. Her reply was immediate: Because I am poor. There is no medicine here.

Death in Delhi. At whose door?

Eeswari Bai, 10, July 12, at JSS in Ganiyari
She would not leave her mother's side.

[1] Ganiyari is the headquarters site of JSS in the Bilaspur District of Chhattisgarh. All levels of health care are offered by JSS. Patients come from 1,500 villages and an intensive medical and public health program is offered in 53 remote forest villages where JSS has 3 subcenters and over 100 volunteer, trained village health workers and midwives. There is a demonstration agricultural program as well to help farmers produce more organic produce with greater yields, free of chemical fertilizers.

[2] “Chronic myelogenous (or myeloid) leukemia (CML), also known as chronic granulocytic leukemia (CGL), is a cancer of the white blood cells. It is a form of leukemia characterized by the increased and unregulated growth of predominantly myeloid cells in the bone marrow and the accumulation of these cells in the blood. CML is a clonal bone marrow stem cell disorder in which proliferation of mature granulocytes (neutrophils, eosinophils, and basophils) and their precursors is the main finding. It is a type of myeloproliferative disease associated with a characteristic chromosomal translocation called the Philadelphia chromosome. It is now treated with imatinib (the generic name of Glivec) and other targeted therapies, which have dramatically improved survival.” – Wikepedia

[3] 15 cms. below the left costal margin. Even minimal enlargement of the spleen below the rib cage is abnormal. The spleen is the principal graveyard for abnormal blood cells. With a daily huge outpouring of cancer cells from her bone marrow, the spleen became progressively engorged.

[4] Novartis comments: “Sustainable access to medicines in developing countries is complex and requires much more than the availability of generic drugs. Generics alone do not solve the issue. For example, in India the cost of a one-year treatment with the generic imatinib is USD 2,100, or 4.5 times the average annual income. Even our critics recognize that generic versions of Glivec are not the solution for the poor in India. Furthermore, generic makers in India have yet to come forward with an access program for generic imatinib…Glivec is not an exception. As a matter of business principle, Novartis is deeply concerned that patients have access to the medicines they need, as demonstrated by our well-regarded record in social responsibility.”

[5] Novartis reports: “Novartis has secured access to Glivec both in India and globally.
When we launched Glivec, Novartis committed that no patient in need should be denied this life-saving cancer treatment. We fulfilled this commitment by establishing the Glivec International Patient Assistance Program (GIPAP), which is one of the most far-reaching patient assistance programs ever implemented on a global scale.

“In India, Novartis currently provides Glivec at no cost to more than 6,600 diagnosed patients… For more information, please visit the Max Foundation which administers the program,” - Novartis’s official web site.

[6] Personal communication: Dr. Gopal Dabade

[7] Personal communication: Dr. Yogesh Jain, staff physician at JSS; oncologist trained at AIIMS.

[8] Novartis publication “Fact vs. Fiction”

[9] Battling Patent Laws: The Glivec Case, S. Srinivasan, Economic and Political Weekly, September 15, 2007, p. 3686.