Miles to go before we sleep

India's first HIV/AIDS clinic was established in Mumbai. The subsequent awareness programs in the city have worked very well," says Dr Ishwar Gilada, President of the AIDS Society of India. The Mumbai District AIDS Control Society (MDACS) seems to agree with him; according to a MDACS report released earlier in the year, the city has seen only two AIDS-related deaths in 2012.

Similarly, a statement released by UNAIDS earlier this year also suggests that there has been a decline in the number of HIV infections. According to the UN report, new HIV infections in the country have dropped by 57 per cent in the last 10 years. "Earlier, the government had other priorities and didn't give AIDS its full attention," says Gilada. "But they've realised the importance of awareness and treatment and the budget to combat the disease has been doubled.

Various Indian dignitaries attend global AIDS conferences and implement the measures in the country." The UN report also praised India's contribution to manufacturing and exporting generic antiretroviral drugs which are much more affordable.

A tangled web
However, not everyone is that gung ho. While many state and city-based organisations working with HIV/AIDS patients acknowledge that there has been a decline in the number of AIDS cases, they're sceptical about the rate of success these reports suggest. "I personally know of two people who were associated with us and passed away recently due to AIDS-related complications," says Pallav Patankar, director, HIV Programmes, Humsafar Trust, a Mumbai-based organisation that works for LGBT health and rights. "So reports suggesting only two people have died in 2012 is a bit of a stretch."

"As far as official records go, the figures are correct," responds Dr Balkrishna Adsul, additional project director at MDACS, when we ask him if the statistics may have been exaggerated. "The data has been collated from all the ART (antiretroviral therapy) centres in the Mumbai district, eight of which are municipal centres and two are private."

But Adsul admits that there might have been more AIDS-related deaths in the city that went unreported. "The problem is that out of the people who register at the ART centres, only about 50 per cent show up for regular treatment," he says. "Often, migrants from other states come to these centres, and can't make it to the centres for regular treatment. They don't have permanent addresses and contact numbers so we can't get in touch with them to follow up."

Stigma, fear
According to Vinod Jambhale, program manager NMP+ (The Network of Maharashtra People with HIV), another reason why many cases go unreported is fear of the side effects - nausea and headaches - of the drugs administered to these patients. "Many people are scared off by these side-effects and are afraid they're not being given proper treatment. This makes them more likely to stop going to clinics," he says.

The AIDS-associated stigma is another reason that causes discrepancies in official records. "Some people provide incorrect contact information because they don't want anyone to find out they have been visiting these centres," says Adsul. The stigma is also why, often, AIDS-related deaths are classified under other causes. "Some doctors will fudge records and attribute deaths to secondary diseases," says Patankar.

It is a well-known fact that AIDS by itself doesn't kill patients. It causes their immune system to deteriorate, making them susceptible to infections and diseases. "Hospitals realise that it's a sensitive issue. If the family doesn't want to be associated with the disease, they don't write HIV as the cause of death in the death certificates. So these cases go unrecorded," explains Patankar.

Plus, not everyone goes to the the ART Centres. "Lots of people with money prefer to be discreet and go to private clinics," says an expert from an organisation working with HIV/AIDS patients in the city, on condition of anonymity. "How are those patients to be accounted for? They're not on the records coming from national reports. Tuberculosis has been made a notifiable disease, which means that doctors who get patients with TB have to report it to the national health authorities. But AIDS isn't notifiable, which means many cases stay under the radar," she adds.

Plan of action
"Fear is the biggest challenge patients need to overcome," says Dr Sonam Mansukhani, sociologist at KC College. "They're afraid they will be ostracised by everybody they know." Mansukhani suggests counselling to help patients cope. "Everyone in the patient's immediate environment - friends, parents, siblings, colleagues - should help in the counselling process," she says. "The fear of death shouldn't be drilled into a patient. He/she should be treated as normally as possible." She warns against laying blame on the patient for contracting the disease. "Making the patient feel guilty isn't going to help anyone. He/she shouldn't have to hide his disease from close associates. Graceful acceptance of the predicament is very important."

The Humsafar Trust, on the other hand, has turned to social media to prevent the spread of AIDS. "Through informal messaging on the Internet, dating sites and applications, we hope to reach out to more people and get the message across," says Patankar. "Many people feel they're immune because AIDS is something that only poor people get. The other incorrect assumption is that education equals sufficient knowledge. With greater access to money, people have more access to alcohol and substances, under the influence of which they are more likely to indulge in unsafe sexual practices. With the right kind of messaging, we hope to help them realise that they're just as susceptible to the disease and promote safe practices."

Patankar also hopes to provide counselling and medical services. "We want to convert this virtual population into a real world population because it's only in the real world that they can get the medical help they need," he explains. "Patients should be comfortable enough to seek diagnosis and treatment not only for AIDS but also other sexually-transmitted diseases."

Meanwhile, MDACS is working with healthcare workers to spread awareness about the disease and eliminate the stigma associated with it. "We're going to work with various colleges in the city," says Dr Adsul. "We'll train students and arm them with the necessary information so they can spread awareness too." Clearly, while HIV/AIDS experts have the disease medically under control, its social ramifications are the ones that need tackling.