India’s announcement that it will roll out 'second line' drugs meant to treat those who have started showing resistance to 'first line' treatment is welcome, but, argue experts, policymakers should also urgently look at problems plaguing the first line roll-out. T K Rajalakshmi reports

The sounds of jubilation emanating from the corridors of India's health establishment following the publication this year of new estimates that show plummeting HIV and AIDS figures are leaving one Indian rather mystified.

In July 2007, Health Minister Anbumani Ramadoss, accompanied by experts from the National AIDS Control Organisation and UNAIDS, declared that India now had fewer than half the HIV cases previously thought. But Mike Tonsing, an HIV-positive person who works with the Delhi Network of Positive People (DNP), a non-government organisation, does not believe that there is much to shout about.

Tonsing has good reason not to share in the optimism. Unlike the politicians and media, the DNP operates out of a small office located in the hub of New Delhi, its nondescript neighbourhood discouraging many patients from making regular visits.

Tonsing - and many others like him who work at the grassroots - tend to be wary of the government's tom-tomming the falling HIV numbers as an achievement, saying their experience in fighting raging stigma against people with HIV or trying to access treatment for them shows the reality is rather grimmer than the figures show.

"The National AIDS Control Organisation claims that stigma has gone down to an extent, but every day PLHIV (people living with HIV) face discrimination, mostly in the health care setting," says Tonsing.

"Government hospital doctors are reluctant to treat HIV patients. It is still very difficult for PLHIV to get admission in government hospitals," he adds.

On the day the health minister announced a reduction in the estimates of people living with HIV in India from 5.7 million to 2.5 million - largely the result of new and better methods of counting - the government also launched the third phase of its National AIDS Control Programme. With a budget of around $3 million, NACP III is to run until 2012.

The dip in figures means India has now slipped to third position after South Africa and Nigeria in the number of HIV-positive people. The prevalence rate of 0.9 per cent underwent a drastic reduction to 0.3 per cent. Even more importantly, declining trends were reported in five high prevalence states - Tamil Nadu, Andhra Pradesh, Karnataka, Maharashtra and Nagaland. And condom-use and awareness of HIV among vulnerable groups showed an impressive increase.

But experts such as Tonsing argue that these gains could be reversed if stigma, which drives HIV and AIDS underground, continues unchecked.

There is little doubt that compared to any other disease in India, the attention - and money - that HIV and AIDS have received by policymakers in the last decade, has been remarkable. Yet, NACP III barely addresses the issue of stigma in spite of some recent high-profile cases of neglect, persecution and discrimination highlighted by the Indian media.

There's a growing list of horrifying cases. Most recently, a new-born baby born in the north-western city of Jaipur was snatched by the in-laws of the HIV-positive mother. A civil rights organisation intervened and went to court but mother and child are yet to be united. For every such case in India that hits the media, hundreds go unreported, experts say.

In a society where patients with tuberculosis are treated like pariahs and poverty itself is considered 'dirty', the social exclusion due to HIV is much more stark. In small towns and villages - even in states with high literacy rates - children of HIV-positive parents can find themselves barred from school.

And even though free antiretroviral treatment is available for the poor, many people living with HIV have to travel great distances - sometimes more than 500 km in remote mountainous provinces - to access treatment.

Further, many of those on treatment are developing resistance to drugs, which means they need to be prescribed new drug combinations - the so-called 'second line' of treatment - but experts say this will take some time to roll out. The government announced provision of second line only recently.

"Currently, for the treatment of opportunistic infections like tuberculosis, there is no medicine available in the hospitals. One has to spend from one's own pocket for such treatment," Tonsing says.

Stigma and shortages of drugs drive people to the unregulated private sector where scientifically unproven treatments are common. According to the government's own statistics, private out-of-pocket expenditure as a percentage of total expenditure on health in 2006 was 75.2 per cent - one of the highest in the world.

The poor are the worst hit. AIDS patients who want antiretroviral treatment have to show proof of residence such as a ration card, which entitles the poor to subsidised foodgrains, or a tax payer's card. "But many HIV patients are migrants. They do not carry their ration cards with them," says Tonsing.

After having rolled out and stabilised first line treatment to nearly 100,000 patients with considerable effort, NACO has now announced the launch of second line treatment to around 5000 patients. Yet this will be limited to only those who are currently on first line ART in NACO's ART centres and have become resistant to those.

Clearly, resistance to ART is emerging as a serious issue. The latest figure for drug resistance is not known but in May 2007, when around 47,000 people were reported to be on ART, some 3000-5000 patients had become resistant to treatment. There is hardly any analysis as to why this is happening. And if there is any analysis, it is not in the public domain. The second line treatment requires stronger systems for monitoring.

Experts say NACO will need to address the problems besetting the roll out of the first line drugs in order to save more lives and ensure that the second line roll out is more effective.

(T K Rajalakshmi is special correspondent with Frontline, an Indian current affairs magazine and writes on critical issues concerning the social sector. She is a former Panos [India] Fellow).

InfoChange News & Features, March 2008