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Access to ART in a rural setting

The government provides free anti-retroviral treatment, but when government run services are so poor and inadequate, people have difficulty accessing it. Sandhya Srinivasan travels to Chhattisgarh which has just one ARV centre, and to Sewagram in Maharashtra, where patients prefer to pay for treatment rather than avail of free treatment at a government hospital

A long line of people winds along the covered passage outside the Jan Swasthya Sahyog (JSS) clinic in Ganiyari, a dusty village an hour’s drive from the town of Bilaspur in Chhattisgarh. The out-patient clinic (OPD), held on Monday, Wednesday and Friday, opens its doors at 8.30 in the morning. Dr Ramani Atkuri says that 240 tokens are issued each day but the very ill people wait anyway; they have travelled too far to go back without seeing a doctor. Some will spend the night outside the OPD if they need follow-up. What do they do for food? “They might bring food and cook it. They may buy something from across the road. A few go to the canteen where they can get a meal for five rupees. Some just do without.”  

Infectious diseases are not the only health problems of the poor, says Dr Anurag Bhargava. A 35-year-old man is unable to walk because of peripheral neuropathy (damage to the nerves on the feet). His eyes have been affected by retinopathy (damage to the eyes). These are common complications of diabetes, especially uncontrolled diabetes. There is the man with kidney failure due to hypertension -- preventable with inexpensive medicines that should be available at any government hospital. The woman who is sitting outside the clinic has heart disease caused by untreated rheumatic fever. 

“We get so many people with conditions that are considered ‘lifestyle’ diseases, but which, in these people, are related to poverty and malnutrition,” says Dr Bhargava. The government’s health system doesn’t reach a majority of the poor who need it so any one who can, comes to a clinic like this one run by the JSS. But by then their illness has often progressed too far.  

HIV, says Dr Bhargava, is another disease of poverty. Chhattisgarh is a “low prevalence” state for HIV. Less than 1% of blood samples from pregnant women collected during the surveillance period (surveillance is monitoring of disease trends; in the case of HIV, it is done by collecting a specified number of blood samples from specified centres during a specific period each year) tested positive for HIV. These samples were collected at 17 antenatal (ANC) clinics in government hospitals.  

“But the quality of your health care system determines the quality of your surveillance,” says a government official. “In places like Chhattisgarh, Jharkhand, Bihar, and Uttar Pradesh, nothing much is happening in prevention. The state AIDS control societies are not active and the health services are not trained to undertake good quality surveillance.”  

When public health services are inadequate and private services expensive, people often just make do without healthcare so they won’t get counted in the surveillance. Monitoring for HIV in the state is restricted to the 17 ANC clinics and two sites for female sex workers. There are no sites for injecting drug users or men who have sex with men, both groups at high risk of HIV. “Surveillance sites for high risk groups are set up at NGOs but there has been no mapping of these populations in Chhattisgarh – where they are, how many, and what their needs are – and thus no targeted interventions for them.”  

Forests cover almost half the state’s area. Mining companies fight for its coal, iron ore, limestone, bauxite and other mineral reserves. Power projects, steel companies and cement factories are scattered across the state. But such wealth does not trickle down to the people. The majority of Chhattisgarh’s 20.8 million men, women and children live in poverty. The state’s per capita income is among the lowest in the country and the vast majority of the population lacks access to basic services such as clean water, sanitation and health care.  

To take just one example, less than 30% of deliveries are “safe” -- conducted in institutions or at home by trained health workers.  

In the absence of basic services, innovative concepts such as the mitanin or unpaid village-based “change agent” have had limited impact. The same is true for the Accredited Social Health Activist or ASHA, of the National Rural Health Mission, modelled on the mitanin.  

Even basic food requirements are not met. More than two-thirds of the women in Chhhattisgarh are anaemic and one out of two is undernourished. Fifty-five per cent of all children under the age of three years are underweight, almost the same percentage is stunted and 81% are anaemic. Of every 1000 children 75 die before reaching their first birthday.  

The patients at the JSS clinic are united in their poverty, ill-health and desperation. In a room behind the clinic, boxes full of patient records for the last decade record the range of illnesses they experience. They suffer from multiple problems including TB and HIV, cancers and diabetes. Malnutrition is the most visible problem. “We see adults who weigh 33 kg,” says Dr Bhargava.  

He describes the predicament of a 22-year-old woman with HIV who was on treatment for two years at the JSS clinic. “She has been through so many emotional and physical ups and downs. She used to live with one sister but has now been sent away and stays with another family member, 40 km from here. Tomorrow, Tuesday, she has to visit the ART centre at Raipur. For this, she must find a place to spend the night in Bilaspur in order to catch a train to reach the centre in time – it closes at 2 pm.” 

JSS has had about 100 positive people on its registers over the years. One-third of them have died.  

“We practise the new policy of provider-initiated testing and counselling, that is, offering testing when we suspect HIV infection – and HIV is a possibility in anyone who comes in with TB and wasting. Patients who are found to be HIV-positive are evaluated for ART and we support them in whatever way we can.”  

Manish (not his real name) is 38 years old. He coordinates a positive people’s network for JSS. His village is about three hours from Ganiyari by bus. “For about eight years I used to work in Jaipur with a contractor. My difficulties started with a persistent cough and weakness. I came home where I was told that I had TB.”  

Treatment for TB is meant to be available free in government clinics but Manish was shunted from one department to the other to get medicines. “After one month of this, I went to a private doctor. I spent money on medicines and doctors’ fees for six months, but I didn’t feel much better once the treatment was completed. Eventually someone told me to go to Ganiyari.” That is where he learned that he was HIV-positive.  

Manish’s wife sells vegetables in the village market. The couple and their 18-month-old son are all on ART and the treatment has made an enormous difference to their lives. “I used to be 32 kg; today I’m 49 kg,” he says. Manish is very careful about taking his drugs on time, “every 12 hours on the dot”.  

The positive network at JSS is about five months old. At present, it has five couples, two with children under three years, who live 10 to 60 km from the clinic. A major concern is to make the ART programme accessible to all those who need it. ART was started in Chhattisgarh in January 2007. There is only one Art centre in the state, at the medical college in the capital of Raipur. While it is much needed, it is means travelling long distances and is also expensive.  

One of Manish’s jobs is to accompany people to Raipur for ART. The youngest of these is his 18-month-old child.  

“The first time I went there I spent Rs 705 because my wife, my child and I did not have a BPL (below poverty line) card. So we had to pay for the CD4 count tests.” (The test must be done before treatment is started. The government’s guidelines provide ART to asymptomatic people only if their CD4 count is below 200. Those with a CD4 count above 200 may be offered ART if they also have opportunistic infections.) 

“CD4 counts used to be done just once a week till we protested. Even now, they are done only on Tuesdays and Fridays. If you don’t know this the first time you go to the centre, your trip is wasted. Now we have organised our work so that a patient can get the CD4 test on Tuesday, receive the results on Wednesday, and can be put on the medicine immediately.” But sometimes the doctor doesn’t turn up. “Then, even if the test gets done, we can’t get the results and start treatment.” 

The ART centre in Raipur is open from 10.30 am to 2 pm. People coming from distant parts of the state must spend the night in Raipur – sometimes sleeping outside the centre – if they want to get their medicines.  

“Even if the drugs are free, it costs money to travel, to stay overnight. You have to show your face every month in order to receive your medicines. Each visit to the centre costs the three of us Rs 400,” says Manish.  

“When the compounder comes in at 9.30 in the morning there is a line of 50-60 people. He collects our cards and at 10.30-10.45 the doctor comes and gives us our medicine for the month. There is no check-up to see how the drugs are affecting us. He just asks me if everything is okay.” Though Manish has been going to the ART centre for nine months, he says no one has checked him after he was put on treatment. 

Whether it is an underdeveloped state like Chhattisgarh or a comparatively better developed one like Maharashtra, health care in rural areas is inadequate. An overnight journey from Bilaspur and an hour away from Nagpur city is the town of Sewagram. The Mahatma Gandhi Institute of Medical Sciences (MGIMS) was set up in 1969 by Sushila Nayar, one of Gandhiji's disciples. MGIMS was an experiment in promoting rural-based medical education so that the doctors trained here would provide health care in rural areas. Today, the hospital's patients include people from small towns and villages. The hospital charges for its services, though at a substantially lower rate than private hospitals. 

Nagpur district has a high HIV prevalence of over 1% among the rural population in 2006, the last year for which figures are available.  

“I must have seen about 50 out-patients and 50 in-patients for HIV-related problems over the last year,” says Dr S P Kalantri, physician at MGIMS. “At any given time, about 3% of patients in the medical wards are there for HIV-related problems.”  

Most people living with HIV/AIDS come to MGIMS only when they are seriously ill. “They are severely immuno-compromised. TB is the most common opportunistic infection we see. Most present with a fever and weight loss. Over the years, the threshold for ordering an HIV test is that any severely ill patient, especially with TB, gets an HIV test, those with TB, severely malnourished, unexplained fevers...” 

MGIMS patients come from the villages around Sewagram, Nagpur, Chandrapur and even across the state border from Andhra Pradesh which is a high prevalence state. “These are the rural poor, many are petty land owners. Most of them are in their 20s and 30s, when they would be the family's economic support. Most are malnourished. There are many children. At least 20% of the couples are co-infected. We try to counsel the family,” says Dr Kalantri. 

He estimates that one in five knows or suspects that they have HIV. “But they've had bad experiences with other hospitals. Once we confirm the diagnosis, we do a CD4 count and then advise on treatment.” The CD4 test at MGIMS costs Rs 250 which the patient pays. It is free at the Wardha government hospital, but this can be less convenient as samples are collected from patients only every Tuesday and the test results are available a day after. The Wardha hospital started free ART six months ago. Earlier, patients would go all the way to Nagpur for ART. 

“It was extremely frustrating getting ART through the government. There were all the problems of a public institution: doctors would change, sometimes they were absent, the tests were not freely available, so patients sometimes got them done at private clinics for a fee. Thankfully, the scenario has changed now.  However, there are many hidden costs. Patients must pay for transport, in lost wages, etc. Further, patients co-diseased with TB have to endure side effects of combination therapy.” 

The adherence rate is low, says Dr Kalantri. “Some patients drop out once they feel better. Others give up on the government system and go to either practitioners of alternative medicine or quacks.” 

Infochange News & Features, March 2009