Two Journeys, One Box of HIV Medicine

Presenting two stories that tell another tale.

Presenting two stories that tell another tale.

A village woman from interior Maharashtra changes buses four times to reach a hospital in Mumbai.

AT 18, NANABAI, a mother of three, became a widow. Everyone in her village in Jamkhed district of Maharashtra knew he had passed away because of AIDS. Her in-laws, who had been caring for their ailing son uptill then, declared her infectious and forced her to live in the cowshed outside their house. She was not allowed to see her children, and often given less than one meal a day. When she went to draw water from the well, other women of the village sneered and forced her to leave. They feared she might infect the water. This was 14 years ago.

After 11 years of working relentlessly on neighbouring farms to provide for her children, Nanabai (not her real name) first began to show symptoms of HIV in late 2005. Frail from repeated episodes of diarrhoea, and ashamed of the visible rash on her face, she visited a local doctor fearing the worst. News that the government provided medicines free of cost brought some relief. She was lucky. Just a year earlier, in 2004, the National AIDS Control Organisation (NACO) had introduced this life-saving policy of providing free first-line antiretroviral therapy (ART) for patients with symptoms that Nanabai had.
ART is a combination of at least three drugs that can suppress the progression of HIV. Nanabai was able to start her medication in a government-run ART centre in Ahmednagar. She didn’t have to worry about paying for it. But such first-line HIV treatment has several toxic side effects. Unfortunately, Nanabai suffered most of these. It was tough working all day in the fields with gnawing headaches and intense nausea, and this made her stop the medication eventually. She had developed resistance to it anyway, and was no longer responding to the drugs. Her body was vulnerable again. Even a simple cough or cold could lead to a life-threatening condition such as pneumonia.

But then, Nanabai got lucky again. In 2007, NACO set up 10 ART centres across the country to provide free second-line treatment for patients who had become resistant to first-line drugs. To get access to these drugs, Nanabai had to prove that she had been receiving first-line drugs through a government-run programme for at least two years. She also had to be below the basic poverty line. The recent expansion of eligibility criteria has made second-line treatment freely available to all patients who received first-line treatment before 2004 and are now resistant to it (irrespective of whether they were receiving treatment at a government or private centre). However, the long list of ‘criteria’ leaves the poor at the mercy of an intricate maze of officialdom. Educated only till the second grade, Nanabai had to seek assistance to help her navigate her way through heaps of paperwork and bureaucracy. Three months later, and significantly weaker, she finally managed to prove her eligibility to receive these drugs.

So began Nanabai’s monthly journey from her village in the remote interiors of Maharashtra to the city of Mumbai. To reach JJ Hospital, one of the ten centres in India where HIV positive patients get free second-line treatment, she must walk for over two hours and change buses four times. Though the government has decided to increase the number of ART centres offering second-line drugs from 10 to 17, realistically, only a handful of these services trickle down to the rural poor, who constitute some two-thirds of the country’s population.

Once at the centre, Nanabai waits from early morning to late evening hours amongst a swarm of over 400 patients waiting to receive their medication, some of whom have travelled long distances from the interiors of Goa, Gujarat and Madhya Pradesh. The second-line drug is available free of cost only on one pre-set day a month. Given that these drugs are prohibitively expensive, at over Rs 35,000 per patient annually, government handouts are the only option for many. For Nanabai, the long and cumbersome travel to JJ Hospital is not only physically taxing, but also a day of lost wages. Even after having visited the hospital several times, she admits to feeling “rattled and lost in such a big place”. She wishes she could go to a smaller clinic closer to her village.

Every evening, as Nanabai walks to her house from the farm, sometimes dragging her feet in fatigue, often covering the rashes on her arms with her sari, she is still grateful for every day that she can spend with her grandchildren. Seeing their playful faces is all the motivation she needs to keep fighting.

(Smisha Agarwal and Sharleet Mahal are working with the Comprehensive Rural Health Project in Jamkhed, Maharashtra)

A man from Turkey relies on a stranger to take him to a chemist in Mumbai

SHE WAS SURPRISED to find a three-line message on Facebook from a Turkish man she had never met, who happened to be a common friend of some of her European friends. He had been searching with some desperation for someone who lived in Mumbai, and had to trawl through friends’ lists on the social network website. In his first line, he introduced himself and said he would be visiting Mumbai. In his second line, he asked her, ‘I need your help, could you help me when I’m in Bombay?’ In the third, he thanked her in advance. And that was it. When she asked him the kind of help he needed, he said he had a friend who was ‘sick with HIV’. ‘Some of my friends say the medicine is cheaper in India. So I am coming to buy them and look around,’ he wrote.

The Turkish national had met a few Turkish people through an HIV support group who regularly travel to India to buy medicines, and was certain this was the best way to procure them, though the Turkish government provides treatment for HIV and AIDS free of cost. According to a doctor at the Infectious Diseases Department at Hacettepe University in Ankara, the social stigma of HIV is a strong reason why patients prefer not to register themselves with the government, opting instead for private treatment. “If diagnosed with HIV,” he says, “it is hard for them to live with families who don’t treat them well. The families are also victims of social stigma.”

So the Turkish man needed her help in buying the medicines privately in India, finding a good tattoo artist, and photographing temples, all in two days. She agreed. She figured no one would lie about such a thing, especially if willing to spend Rs 50,000 to visit India on a weekend to smuggle back two boxes of medicines. Within four days, the Turkish man had arrived in Mumbai, checked into a hotel near the airport, and immediately joined her to search for Efavir 600, Emtricitabine 200 and Tenvir 300, all second-line medicines for HIV. He was taken aback by the traffic and time it took to commute from the airport to Colaba. The air was hot and muggy too, and auto-rickshaws particularly unstable. Above all, he was conscious of being a foreigner.

Chemists in Mumbai are accustomed to foreigners visiting India for cheap medicines. Since such customers buy medicines in bulk, they are usually welcome; although a doctor’s prescription is mandatory, chemists are only too pleased to fudge these details for their records. And so it was with the chemist the Turkish buyer eventually went to. The Indian Government, the chemist said, is only keen on keeping track of sleeping pills and Viagra, since these can be misused. “At Mumbai airport, it is difficult for you to carry back Viagra, not these medicines,” he casually told his weekend customer from Turkey.

The chemist gave him a year’s supply of the drugs in huge Chyavanprash boxes, since Turkish nationals can legally carry herbal pills back to Turkey without prescription. It is a small risk for the money one saves. According to AVERT, an international HIV and AIDS charity, pharmacy companies in India have revolutionised treatment by making low-cost, quality antiretroviral drugs, the main treatment for HIV. A revolution, it is. The entire package of HIV medicines for a year cost the Turkish national only about Rs 45,000 in Mumbai, roughly what he would pay for a single month in Turkey. It is cheaper for people like him to fly to India for a weekend, buy the medicines, visit temples, photograph ladies in colourful saris and cows on the road, than pay for a year’s treatment privately back home.

While the chemist repacked the medicines, the two decided to have a meal nearby. The man hadn’t eaten since he arrived in Mumbai, preoccupied as he was. Relieved at last, he ate a full meal, and toured the city like any other tourist. She suggested some places to visit, especially temples. She also said she would pray for his friend. “For whom?” he asked. “For your friend with HIV,” she replied. She didn’t know the compulsions that brought this foreigner to India on a desperate search for affordable medicines, tattoos and temples. She didn’t know what the truth was, if the ‘friend’ was just a front. But in India, prayers are as important as medicines for any recovery, and she wished the person his best shot at life.

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