Field Note

Never Mind the Numbers: India's HIV/AIDS Crisis is Large Enough

By Smita Baruah, Senior Policy Associate, Global Health Council

HIV/AIDS was added to the list of India’s major health challenges in 1986 when the first cases were discovered in Chennai, India – which experts believe were transmitted through contact of sex workers with foreign tourists. Since then, India’s AIDS epidemic has been second only to that of sub-Saharan Africa as the focus of international attention.

Think tanks, policy analysts and HIV/AIDS experts worldwide paid particular attention to India at the beginning of the 21st century after it was estimated to house nearly 6 million people living with HIV. Along with Russia and China, India was grouped as a ‘second wave’ country – one whose epidemic was still contained on the margins of high-risk groups but was in imminent danger of an explosion into the general population. Last year, India made headlines again when revised epidemiological data brought down its projected HIV prevalence to 3 million people from 6 million. That the epidemic in India was less severe than had been assumed was due more to improved data than to a decline in infections. Yet the debate continues as to whether the HIV/AIDS crisis has the potential to morph into a full blown generalized epidemic, rivaling those of sub-Saharan Africa.

But we can’t let the debate become a distraction. Whatever the numbers, 3 or 6 million – they still constitute a crisis, which India must acknowledge and use its formidable resources to combat.

What Do The Revised Figures Tell Us and Not Tell Us?
These revised UNAIDS figures give us an overall number but do not indicate trends or tell us what is happening or where. Other data suggest that India’s epidemic is widely diverse and that the prevalence rate is falling in some parts of the country, while rising in others. Recent studies conducted by the government, World Bank, and others show that the southern states have experienced a gradual decrease overall, while in other regions it has not declined or may in fact be rising. In the northeastern states, especially among high-risk marginalized populations, such as injecting drug users (IDUs) or truck drivers, HIV rates are rising at a troublesome rate.

NACO’s Response to the Crisis
India’s response to the HIV/AIDS crisis is largely driven by the government – the National AIDS Control Organization (NACO) – which has just introduced the “third phase” of its program.

The first phase began in 1991 with a primary set of interventions promoting blood safety, prevention among high-risk populations, raising awareness in the general population, and improving surveillance.

The second phase began in 1999 when NACO began to decentralize and form State AIDS Control Organizations (SACO). In its third phase, NACO aims to halt and reverse the epidemic over the next five years. Its goals are to expand treatment, care and support for people living with HIV, continue to target prevention interventions among high risk groups, and focus on building infrastructure and human resource capacity.

NACO, in partnership with the SACOs and many NGOs, continues to focus its effort most heavily on prevention. Successful targeted interventions in sex worker communities have led to the decline in HIV prevalence among this population in some areas. Interventions include an aggressive effort to educate the sex worker population about the importance of using condoms through different media: plays, radio, film stars and local festivals.

Funding for these efforts comes from a variety of sources ranging from state governments to foundations to international donors. A variety of UN partners, such as the World Bank and bilateral donors including the U.S. Agency for International Development (USAID) and the U.K.’s Department for International Development (DFID), have largely provided technical assistance. More recently, the Bill & Melinda Gates Foundation and the Global Fund have increasingly financed a number of HIV/AIDS projects in both treatment and prevention.

The potential to halt the epidemic is there, but the end Stigma Reaches into Politics result will largely depend on whether and how India musters the political will. To do so, it must capitalize on the momentum created by an economy growing at explosive rates, a burgeoning pharmaceutical industry, and a private-sector health-care boom to overcome its many challenges, the most serious and pervasive of which is relentless stigma and discrimination against marginalized groups.

India’s Economic Success Still Out of Reach for Most Indians
A booming economy: India finished the year 2007 with an economic growth rate of nearly 8 percent, placing it among the world’s fastest growing economies. Foreign investors and businesses are flocking to cities like Mumbai and Bangalore, according to Indian news sources, and foreign investment in 2007 was expected to total $30 billion. Indian companies invested nearly $50 billion in the acquisition of foreign companies.

Increased resources in the country should lead to greater investments in the health sector and to a wide range of accompanying benefits, including free treatment for people living with HIV who cannot afford private care, the expansion of health clinics and staff, basic education, and employment opportunities for the rural and urban poor.

However, many observers note that resources from India’s economic explosion are not trickling down to the poor, most particularly the rural poor and women. Disparities between rich and poor, in fact, are widening as growing wealth is concentrated in urban areas, while more than one-third of India’s population still live on less than $1 a day. India’s health budget accounts for about 1 percent of its total national budget. The rural poor still lack access to the most basic services including clean water and sanitation and education, at unacceptable rates.

Generic pharmaceutical market domination: India is also enjoying a pharmaceutical boom, particularly for generic HIV/AIDS drugs. Over the last several years, India’s drug companies have been filing more and more applications to sell their medicines abroad. Currently, Indian drugs treat half the HIV/AIDS patients in the developing world. For example, in 2007 India’s drug maker CIPLA introduced new HIV drugs for patients that cut the annual price of treatment from $11,000 to $400, enabling one in three Africans living with HIV to take these drugs.

India should, therefore, be well poised to provide treatment to all of its own people living with HIV, but the irony is that less than 25 percent of those in need have access to treatment. Public sector free treatment is limited and the vast majority of Indians living with HIV cannot afford to buy drugs privately.

The Indian government has taken some steps to increase the number of free ARV centers, but they are still few and far between, and the government is not doing anything to lower the drug prices in the private sector. (See India's HIV/AIDS article). Although NACO did introduce second-line drugs to AIDS patients in 2008, it has set a target of only 3,000 people – which AIDS treatment activists argue is far too small. A lack of scaled-up free-treatment facilities, high drug prices, inadequate health infrastructure and human resources all counteract the drug market boom.

Privatization: India is also enjoying growth in privatization of its health-care industry, including hospitals and clinics, leading to low-cost, high-quality facilities that attract foreign patients. In 2006, they drew nearly 200,000 international patients for affordable heart surgeries, cancer treatments and other health services.

Increasingly, these private health-care facilities have also begun to implement their own ARV programs, enrolling a number of Indians and increasing access to treatment for some. But they are mostly in urban areas and unaffordable for the vast majority of Indians living with HIV.

Coordination among NACO, SACO and private healthcare facilities is poor. One unified, clearly-guided treatment implementation plan adopted by all health-care facilities and community-based organizations is urgently needed to help to alleviate some of the crisis.

Decentralization This lack of coordination is exacerbated by the increasing decentralization of government programs. NACO has been complimented for decentralizing its HIV/AIDS efforts, enabling states to tailor the epidemic to their own needs based on local norms and cultural mores. But decentralization has also led to imbalanced HIV/AIDS efforts and results throughout the country.

Some states, such as those in the south, deemed critical to reversing the epidemic, have been well-funded and supported by NACO. Others, such as Kerala and West Bengal, have been able to invest in HIV/AIDS prevention, care and treatment with their own resources. Poorer states, such as Bihar or Orissa, have been able to do very little and have yet to implement a state plan. This lack of a unified, or even coordinated, approach is likely to create a large imbalance between states which lowering their prevalence and those which are not, adding up to a net change in overall numbers of close to zero.

Most Affected Populations: Stigma and Discrimination
India’s most affected populations are also the most marginalized – commercial sex workers, migrant workers, MSM and drug users. Among these groups, India has focused most intensely on the sex worker industry, resulting in a number of successful prevention and outreach education models in brothels across the country. However, the story is far different for drug users who are targets of India’s harsh laws and punitive treatment. For example, harm reduction, including needle exchange programs – a proven HIV prevention method for drug users – is not even incorporated in government policies.
Pushed even further from sight are MSM – whose sexual practices are illegal – making it all but impossible to reach them with information. HIV outreach workers and peer educators are frequently harassed or even jailed for working with this population. This also increases the risk for the general population to contract HIV, due to the large percentage of MSM with female partners and/or wives.

In addition, stigma and discrimination against women remain deeply entrenched as women lack adequate access to human and economic resources, which only further weakens their ability to protect themselves while increasing their vulnerability. As in other countries, gender inequality remains a significant problem in the fight against HIV/AIDS.

And finally, stigma toward people living with HIV is still widespread in India. The misconception remains that AIDS only affects a certain segment of the population due to socially deviant behavior, which makes them responsible for their disease.

An illustration of the consequences of this stigma is the case of HIV/AIDS activist, Jahnabi Goswami, who was kept from running for state office because of her HIV status (see related story.)

India’s Potential Fulfilled or Unfulfilled?
India’s epidemiological data suggest that India’s HIV/ AIDS epidemic may be less devastating than once thought, and may indeed not be spreading rapidly into the general population. India is well-positioned to mobilize its own resources, from the growing private sector, the government and donors. NACO’s comprehensive third phase, which includes an increased focus on care and treatment, is also a positive sign that the government is serious about dealing with HIV/AIDS.

At the same time, millions of Indians still lack access to the health facilities that provide ARV treatment and who are unable to afford ARV drugs. They also lack basic necessities such as water and sanitation and food that will help them adhere to medication. And, as discussed, widespread stigma and discrimination remain without policies to protect women or marginalized groups, such as MSM, sex workers and drug users.

These are challenges that India must overcome if it will indeed combat the spread of HIV over the next five years. These are also challenges that go beyond the national and state AIDS control organizations and even the control of HIV/AIDS. They are the common challenges of poverty and equity that the Indian government must address as a whole.

Stigma Reaches into Politics Jahnabi Goswami is a prominent HIV/AIDS activist in northeastern India. Her story illustrates the story of millions of people living with HIV in her country. Lack of awareness first cost Jahnabi her family. Then, stigma and discrimination cost her the chance to represent her political party in the state of Assam’s legislature. In 1996, she became the first woman in northeast India to declare her HIV status. Jahnabi was infected by her husband who had contracted AIDS before their marriage, a fact that her in-laws had concealed. She only found out months later after her husband’s death from a “mysterious disease.” By then, she was thrown out of the house by her inlaws and refused custody of her daughter, who also later died of AIDS. After her daughter’s death, Jahnabi founded the Assam Network of Positive People (ANPP), whose mission is to build capacity and skills of people living with HIV and to wipe away discrimination against them. In 2006, she was asked by India’s Congress Party leaders to run for the state legislature. Jahnabi was touched and excited by the prospects of representing not only Assamese women in government, but HIV positive people as well. Stigma associated with HIV/ AIDS, however, would cost her the opportunity. Soon after she was nominated, negative campaigning against her began – even from her own party members. They questioned how a person living with HIV could work as an elected official. Some were afraid to sit next to her for fear of contracting HIV/ AIDS. The Congress Party eventually denied her the chance to run for office, which dashed all hopes for Jahnabi who was banking on using her seat in government to help HIV-positive people overcome stigma and discrimination. Today, Jahnabi continues to run the Assam Network of Positive People. Her story illustrates the stigma that people living with HIV continue to face at all levels of society. It also highlights the long road ahead in raising awareness about HIV/AIDS. O ne of Jahnabi’s quests is to mandate HIV testing before marriage so that individuals, especially women, are protected in the future.

For more information contact sbaruah@globalhealth.org.

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