“This is the end,” doctors told Maitri and her husband in 2000 when they tested positive for the Human Immunodeficiency Virus (HIV). Her brother and uncle rushed to Mumbai from Kolkata to pay the couple a final visit. “I cried a lot that day,” she recalls. “I thought I would never see them again. I was 28 years old then.” As soon as her in-laws found out, they threw the couple out of the house along with their four-year-old son. It was Maitri’s fault, they said. Two years later, the couple decided to move to Kolkata. But even her family of lawyers and engineers turned them away, scared that they would get infected if they allowed the couple to stay in their home.
The couple moved into a rented house. Maitri visited her family sometimes, but they never allowed her to eat with them. In 2004, after her husband’s death, her neighbour — a HIV-positive woman — introduced her to the Bengal Network of Positive People, a support and advocacy group for HIV survivors. That marked a new beginning in her life. She started working on creating awareness about the disease. Now, she is employed with the Delhi Network of Positive People (DNPP). She remarried and has two sons, both of whom tested negative for HIV.
Maitri is among 20.89 lakh people in India in the 15-49 age group who are living with HIV. Since 1988, 1 December is observed as World AIDS Day. There is still no cure for AIDS, but it has become possible to prolong the lives of HIV-positive persons and prevent their infants from contracting the virus. All it takes is a combination of anti-retroviral (ARV) medication, proper nutrition, hygiene and adequate precautions.
India has the third largest population of HIV-positive persons in the world, after South Africa and Ghana. Between 2000 and 2007, efforts of the National AIDS Control Organisation (NACO) and community-based groups led to a 57 percent drop in the prevalence rate — the percentage of the population detected with the virus. However, the prevalence rates in Nagaland, Manipur and Mizoram are more than double the national average of 0.3 percent. Andhra Pradesh, Karnataka, Chhattisgarh, Maharashtra, Gujarat, Delhi and Punjab also have substantially higher prevalence rates than the national average.
The National AIDS Control Policy (NACP) was formulated in 1992 and aimed at raising awareness in the first phase. “The HIV/AIDS programme of the Union health ministry succeeded in halving HIV prevalence in just a decade,” says prominent LGBT rights activist Ashok Row Kavi. It managed to involve more than 2,500 NGOs and community-based organisations of female and male prostitutes, hijras, intravenous drug users and men-who-have-sex-with-men.
In the subsequent two phases — NACP II and NACP III — the focus shifted to encouraging appropriate behavioural changes. “Not even in the US has the cost per intervention been calculated in so much detail,” says Kavi. “Upsetting that balance could lead to aids mortality in India spinning out of control, making it the worst-affected nation in the world.”
Now in its fourth phase, the NACP aims at reducing the number of new cases and providing comprehensive treatment, care and support to all HIV-positive persons. In 2004, the Union health ministry rolled out its free ARV therapy programme. But activists have begun raising serious concerns about the worsening situation on the ground in the past few years. “Earlier, there was a synergy between NACO and the stakeholders, but that is not the case anymore,” says Anjali Gopalan, executive director of Naz Foundation, an NGO working on HIV/AIDS. “Shortage of drugs is another grave area of concern. It leads to interruptions in treatment, which cause drug resistance among people living with HIV. As a result, they have to be put on the much costlier next line of treatment sooner than would otherwise have been necessary.”
There have been reports of shortage of drugs and ARV kits across the country. In August, the DNPP sent a legal notice to the Union health ministry over the shortages. Through the notice, they sought the strengthening and streamlining of drug forecasting, procurement and supply chain management to prevent shortages in the future. In numerous cases, HIV-positive persons have had to visit government-run ARV centres repeatedly to collect the medicines. The worst-affected centres are in Delhi, Manipur, Gujarat, Maharashtra and Karnataka. There have been also cases where due to the unavailability of drugs, the patients have been prescribed substitute drugs on an ad-hoc basis or their treatment has been stopped.
In September, the National Human Rights Commission (NHRC) issued a notice to the ministry, asking it to submit a report within two weeks on the shortage of drugs and the short-term and long-term measures proposed for preventing such shortages in the future. The ministry did not respond. Then, on 28 October, the NHRC gave it four more weeks to submit its report. According to the NHRC notice, ARV centres in Mumbai and New Delhi are the worst-hit.
Apart from drug shortages, the lack of sensitivity among hospital staff is also an area of concern. “Many patients from remote areas flock to the National Capital in search of better counselling and treatment,” says Lakshmi, who works with the DNPP. According to Dr Nalin Nag, a New Delhi-based internal medicine specialist, counselling is crucial to ensure that people living with HIV are motivated to adhere to the regimhivf treatment, nutrition and hygiene. Most individuals living with the virus admit that adherence is possible only with support, which is still difficult to find as stigma and discrimination continue to prevail.
A law to protect the rights of people living with HIV has been in the making since 2006. The Human Immunodeficiency Virus and Acquired Immune Deficiency Syndrome (Prevention & Control) Bill, 2014, was tabled in the Rajya Sabha and referred to the Parliamentary Standing Committee on Health and Family Welfare. The standing committee has now invited public suggestions. Given this scenario, there are many questions that remain unanswered. Despite repeated attempts to get in touch, senior NACO officials remained unavailable for comment. Clearly, India has a long way to go before people living with HIV are ensured a life of dignity.