Waiting for a lifeline

By Shabnam Minwalla

At Mumbai's JJ Hospital, 1,000 HIV-positive people are amongst the 4,000 nationwide who are accessing the government's free anti-retroviral therapy (ART) programme. Sixty children in the hospital's paediatric ward are waiting for a lifeline. There are around 250,000 other patients in India urgently in need of ARVs, who can neither access the programme nor afford to buy the medicines for themselves

Just four months ago, the story of Shaila Tule's life seemed to be hurtling towards a tragic end. Her husband had been diagnosed with AIDS in 2002 and had walked into the sea soon after, leaving Shaila with three children and an HIV-positive test report. As her health deteriorated, the gaunt 31-year-old seemed to be succumbing to weakness and despair.

Hope tiptoed into her Colaba shanty in Mumbai last October, however, when Shaila returned from a check-up at JJ Hospital with a box of tablets. Two months later, she felt strong enough to get out of bed; and today she is able to cook, fill water and actually dream of a future with her young children.

Shaila is one of a number of people with HIV/AIDS in the country who have regained their weight, courage and smiles. For, a 10-month-old government programme providing free anti-retroviral therapy (ART) has yanked over 4,000 people back from the precipice -- possibly bringing down their viral loads by as much as 99%, and literally giving them a new lease on life. "Our centre is already giving free drugs to more than 1,000 people and the number is going up rapidly because we have a big supply at the moment," says Dr Alka Deshpande, head of the department of medicine at JJ Hospital, one of the 25 centres appointed to dispense free drugs in the country. "It's believed that ART can increase the lifespan by 10 to 15 years."

The good news then is that the potent three-drug therapy can transform an unforgiving, fatal disease into a chronic but stable condition. The bad news is that a majority of Indians who urgently need the therapy are still unable to access it. After all, barring a fortunate few -- government employees who are reimbursed for these pricey drugs, and those who have managed to navigate the crowded OPDs and mind-boggling paperwork to avail of the free drugs programme -- most patients have to fork out anything between Rs 2,000 and Rs 7,000 a month. In a country where the per capita income per month is around Rs 2,000, most people simply cannot afford it.

Inevitably, desperate patients throng the dismal waiting area of the HIV/AIDS clinic at JJ Hospital. The Shindes from Hingoli -- an infected couple and their son -- visit Mumbai for a check-up every six months. "Between us we spend almost Rs 5,000 a month on treatment; then there are the frequent blood tests which cost another Rs 500," says 37-year-old Ramesh Shinde, whose bloodshot eyes and defeated expression betray the tremendous strain he is under. "I am a labourer in a shop and make about Rs 1,500 a month," he says.

How do they manage to pay for the medicines? "We make adjustments from here and there. But I wonder how long we will manage."

Next in the crawling queue is Ayesha Bibi, a burkha-clad woman from Kurla. "My son and daughter-in-law tested HIV-positive three years ago," she says. "They get free drugs for TB and have been told to buy medicine for HIV from outside. But how can they? We just don't have the money."

These certainly aren't isolated cases. Dr Shashank Joshi, who treats many people with HIV/AIDS, estimates a dropout rate of at least 50% because of lack of funds. Then there are those undergoing sub-optimal treatment -- either because their doctor doesn't know any better, or because they themselves discard one of the three drugs or skip a few days every week to save money.

Given that India is estimated to have 5.1 million people with HIV -- of whom approximately 250,000 urgently require anti-retroviral therapy -- the scope of the tragedy is huge. Drugs manufacturer Cipla estimates that less than 20,000 Indians are undergoing optimal therapy at the moment, which raises terrifying questions about the fate of all those other shadowy figures -- HIV-positive pregnant women who, without ART, will almost inevitably transmit the disease to their infants; HIV-positive children who will never see adulthood; and people with full-blown AIDS for whom access to the drugs is literally a matter of life and death.

NGOs and activists in the area of HIV/AIDS have been quick to lay the responsibility at the door of the government -- and have criticised the fact that the free ART programme has a short-term target of just 100,000 patients. But, detractors point out that there is no reason why a government that is unable to offer free cardiac surgery or cancer treatment must foot the medical bill for people with HIV/AIDS -- especially because it involves lifelong commitment. "Patients have to take these drugs for the rest of their lives," says Dr Deshpande. "It could become a huge financial burden for our public health system."

On paper at least the free drugs programme gives priority to patients who fall into three categories: pregnant women who are found to be HIV-positive when they access government-run antenatal clinics; children under the age of 15; and adults with symptomatic AIDS who are referred to the programme by public hospitals.

The reality is much more muddled. It's apparent that educated patients and those who are shepherded by NGOs stand a better chance of cutting through the bureaucratic and medical tangle. Also, while women are supposed to be given priority, a majority of beneficiaries at the moment are men -- purportedly because their illness is more advanced.

Shockingly, the paediatric prescription has not yet been procured by the government, which means that children under 12 cannot be treated. Around 60 HIV-positive children are waiting for a lifeline in the paediatric wards of JJ Hospital itself. Moreover the particular drugs procured by the government, when given in tandem with TB medication, can cause immense toxicity. Which means that treating people with full-blown AIDS can be incredibly complicated and has to be approached very slowly.

Identifying the most needy patients and giving them free drugs is only the first challenge.  The need for rigorous counselling is apparent -- many patients waiting for check-ups don't even know the difference between TB treatment and ART; almost none know what their blood test reports indicate. So, while the National AIDS Control Organisation claims its ART centres have "achieved an adherence rate of 96.1% among people who have been placed on treatment," not everybody is convinced. "We are dealing with people who have little predictability in their lives -- no steady job, no regular diet, no regular income," says a social worker in the Tardeo slums. "It's difficult enough to make them take an eight-day course of antibiotics on schedule. So how can you talk of lifetime compliance -- especially in relation to drugs which have to be consumed at a precise 12-hour interval and are bound to have side-effects?" Dr Joshi adds: "It's a farce. This programme will eventually propagate a drug-resistant strain."

While India's overstretched health system is finding it difficult to meet even its present modest targets, countries like Brazil are talking about taking ART to all those who test positive for HIV. "It may make sense from a humanitarian point of view, but will only makes sense from a public-policy point of view if it reduces the rate of HIV transmission -- and the jury is still out on that one," says the head of a big city NGO that works in the area of HIV prevention and counselling. "In fact, the AIDS prevention community is worried because in certain pockets -- like the gay community in the US -- easy access to ART has increased risky behaviour."

These debates mean little to J L Jadhav, however. The 55-year-old man who runs a paan-bidi shop in Belgaum is one of the lucky few to have made the grade and start free ART two months ago. Although he has to make the journey to Mumbai once a month and is experiencing a slew of uncomfortable side-effects, Jadhav is not complaining. Instead he says quietly: "I feel I have been given a second chance. I hope others get one too."

(Shabnam Minwalla is a Mumbai-based journalist. Contact: This email address is being protected from spambots. You need JavaScript enabled to view it.)

InfoChange News & Features, June 2005