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HIV/AIDS: The response to the epidemic

By Sandhya Srinivasan

There are 5 million HIV-positive people in India today. But there is a slight drop in the rate of growth of HIV infection, and the overall prevalence remains below 1%. An overview of HIV/AIDS in India

With the latest estimate (according to 2003 figures released on July 2, 2004) of over 5 million people with HIV, India might be seen as the setting of an impending if not ongoing crisis, affecting national and household economies and putting intense pressure on an already weakened public health system.

However, the National AIDS Control Organisation (NACO) argues that there is a slight drop in the rate of growth of HIV infection -- only 520,000 were added last year compared to 610,000 in the previous year. Overall HIV prevalence remains below 1%.

According to NACO, figures for prevalence in antenatal clinics (presumed to represent the general population) in the six high prevalence states -- Maharashtra, Andhra Pradesh, Karnataka, Tamil Nadu, Manipur and Nagaland -- may be plateauing. Further, there has been no significant increase in prevalence in states with moderate and low prevalence.

The 2002 figures for the high prevalence states are: Maharashtra (7.6% in Sexually Transmitted Diseases clinics and 1.25% in antenatal clinics), Andhra Pradesh (30.4% in STD clinics and 1.25 in ANC), Karnataka (13.6% in STD clinics, 1.75% in ANC and 2.26% in Injecting Drug Users), Tamil Nadu (14.7% in STD, 0.88 in ANC, 33.80 in IDU and 2.4% in MSM), Manipur (39.06% in IDUs, 9.6% in STD, 1.12% in ANC) and Nagaland (10.28% in IDUs, 2.42% in STD, 1.25% in ANC).

The 2002 figures for Mumbai are the highest, with 54.5% of commercial sex workers HIV-positive, 14.84% of STD clinic clients, 0.75% of antenatal clients, 39.42% of IDUs and 16.80% of MSM). It is recorded lowest in the North Indian states such as Uttar Pradesh (0.80% of STD clinics, 0.25% of ANC) and Bihar (1.60% of STD, 0.25% of ANC).

A national expert on the HIV/AIDS scene, who was formerly with NACO and would not like to be quoted, says that the higher prevalence in some states could be a result of a combination of factors -- the levels of multipartner sex, the time the virus first entered the community (earlier in metropolises like Mumbai than in Kolkata), the link between these metropolises and the rest of the country, the levels of migration, etc. There are exceptions like Kerala which has a very high rate of migration but among the lowest prevalence in the country -- apparently because of its higher awareness of HIV, the modes of transmission and means of protection, and a relatively accessible health system.

It is also possible that HIV gets hidden in states with poor health systems. Further, even if, for example, Madhya Pradesh has a low overall prevalence (2.35% of STD clinic clients and 0% of ANC samples), there are pockets of very high prevalence. And even if UP has a very low prevalence its population of 160 million (16 crore) is more than that of Brazil. Therefore he does not recommend focusing on aggregate figures but suggests looking at site-wise analysis.

Indeed, the latest data indicate a rise in intravenous drug use in urban areas, mainly of migrant and mobile people and street children, Meenakshi Dutta Ghosh, project director of NACO, was quoted as saying.

However, official HIV estimates have long been criticised as based on inadequate and skewed sampling and an outdated algorithm -- especially from low prevalence states with poor public health services. Interestingly, the 2003 estimates were not announced till more than 10 months after the survey. More credible statistics and transparency in their reporting would benefit the programme.

While reportedly there have been no dramatic changes in prevalence in the last year, there have been some major steps in the response to the epidemic -- still at varying stages of development.

Response to the epidemic: Works in progress

A draft of a comprehensive national legislation on HIV/AIDS was circulated for discussion before being finalised and sent to the National AIDS Control Organisation to present before Parliament, according to Vivek Diwan of the Lawyer's Collective, a legal NGO in charge of the draft.

The new law was drafted to address lacunae in existing legislation. While a number of judgments have been won on workers' right not to be tested for HIV, there is no law preventing the health sector from discriminating against people because of their HIV status. There is no law guaranteeing access to treatment. Health care services, government and private enterprises routinely flout NACO guidelines.

According to a June 2004 press report on ongoing consultations on the draft legislation, the draft includes comprehensive sections on the rights of people with HIV/AIDS, the rights to access to treatment, confidentiality and employment.

The draft was partly a result of lobbying efforts sponsored by NACO and UNAIDS, apparently cutting across political parties, to get governments to make the programme a priority. However, activists working with marginalised groups point out that lawmakers have refused to take a stand on contentious issues like the legal status of sex work, or of same sex activity. As a result, they argue, peer educators working with sex workers and MSM are routinely harassed by the police, committing human rights violations and jeopardising the programme.

Phase I trials of the modified vaccinia Ankara, a collaborative venture of the International AIDS Vaccine Initiative, NACO, Government of India and the Indian Council of Medical Research, jointly developed by the US-based Therion Biotech, the National AIDS Research Institute, Pune, and the National Institute of Cholera and Enteric Diseases (NICED), Kolkata, were expected in April 2004 but have been postponed further. Dr Sanjay Mehendale, director of NARI, Pune, states that they are awaiting the results of further animal studies, but in any case, "we really do not know at this stage if this vaccine is going to be the final answer but it will teach us lessons about future HIV vaccine trials in India. We are also looking at other candidate vaccines."

Need to provide care

One pressing challenge has been the need to provide treatment to people with HIV. In the private sector, which dominates health care in India, patients with HIV are routinely refused treatment. The public sector is often the only option, though it does not respect patient confidentiality and often treats patients badly. In Mumbai's Cooper (government) Hospital, a sex worker admitted for treatment was slapped by the doctor when he learned that she was HIV-positive. AIDS activists say such behaviour is common.

The government is duty-bound to act to assure people's access to health care -- whether by expanding its services or ensuring that private care is affordable and accessible, notes Dr Amar Jesani, Mumbai-based public health researcher. However, with just one government doctor for every 25,000 people in the rural areas, its reach is very limited. Second, the quality of care is uneven. Studies report rampant absenteeism and corruption among doctors even in district hospitals, the apex of rural care. Inadequate drugs and basic supplies are a problem at every level of the system. Poor patients must increasingly also pay user charges for public services, and bear the cost of drugs and tests not available in the hospital.

The national government's commitment to health care has always been inadequate by WHO standards and has declined further over the years. Public health expenditure was the highest at 1.3% of per capita GNP in 1990, declining to 0.9% in 1999 -- compared to a WHO-recommended 5%. Public health services are crumbling with cutbacks in investment and maintenance. The common minimum programme of the new national coalition government promises that expenditure will go up to 3% of GNP but does not specify where it will come from or exactly which areas it will be spent in.

Finally, the under-development of government services has encouraged a private sector which is unregulated and rife with unethical practices. With negligible insurance coverage, health care expenses are a significant cause of indebtedness in India. For example, Dr D Narayana of the Centre for Development Studies found that 9% of Kerala respondents reported spending more than their annual income on health care -- they had had to sell assets or go into debt.

The international movement for treatment access was reflected in positive people's networks in India. There are, at present, at least two writ petitions on the right to non-discriminatory treatment and to anti-retrovirals (ARVs) as part of the constitutional right to health care.

Anti-retrovirals

The arrival of cheaper ARVs in India some years ago could have changed the outlook for people with AIDS in India -- particularly since Indian companies launched the war in 2001 which sent prices toppling from $10,000-$15,000 per person per year to $350 per year (rate for developing country governments and NGOs). However, initially retail Indian prices remained high at Rs 136,000 (about $3,000). They came down in India eventually, to Rs 24,000 or about $500 a year, but even this is high in a country where per capita expenditure on health is less than $25. As pharmaceutical companies started eyeing the Indian market for ARVs, unethical behaviour by drug companies and doctors promoted irrational prescribing practices, exploiting patients' ignorance and poverty and encouraging resistant strains of the virus.

In a survey of people with AIDS in Kerala, researcher Rakkee Thimothy found patients spending huge amounts on treatment. One in four had used ARVs but stopped, presumably because they could no longer afford them. A number tried out 'miracle cures'. Sixty-five per cent were forced to sell their assets, 22% lost their homes and 46% their land. Thimothy conducted her research as part of an MPhil thesis.

Government programme for ARVs

In December last year the Indian government announced a programme presumably based on the WHO's 3 by 5 initiative. Slated to start on April 1, 2004, by the end of the first phase the programme would provide free ART to 100,000 sero-positive mothers, children under 15 and those seeking treatment in government hospitals in the six high prevalence states.

The government initiative has been lauded by public health experts and groups including The Affordable Medicines and Treatment Campaign, a coalition of legal and other NGOs. However, they also express fears about the disastrous consequences of a poorly-thought-out programme implemented without transparency. Some of these:

  • Will the public system ensure that people take treatment only after proper understanding of the drugs' toxic side-effects, the need for life-long treatment and the possibility of resistance? The five-day training programme for staff is inadequate for imparting technical information as well as ethical principles such as confidentiality, informed consent and non-discrimination. A badly-run programme will be counter-productive and also encourage drug-resistant strains.
  • Where is the infrastructure to provide treatment according to the protocols? According to experts like Dr J P Narain of the World Health Organisation, the programme should not start without uninterrupted drug supplies; laboratory capacity for CD4 monitoring; expansion of voluntary counselling and testing; training of healthcare workers; monitoring of resistance to antiretroviral drugs; and strengthening of the health system's capacity to deliver the drugs. These elements are not in place in India.
  • How will the programme succeed unless the government ensures rational and ethical practice from the private sector as well?
  • Where will the money come from? The programme is expected to cost about $100 million annually (Rs 45 to the US$), besides the increased infrastructure. The programme was started from WHO funds but reportedly there are drug stocks only till the end of this year after which there is no information on how the drugs for the programme will be funded.
  • Who will get treatment and on what basis? An estimated 750,000 people need ARVs but not more than 150,000 will be eligible in the current phase of the programme. People without access to government health services in urban centres are automatically excluded. As are those in the low-prevalence states -- though for some reason the capital, Delhi, has been included as a low-prevalence 'high vulnerability' state. Mumbai's JJ Hospital has a waiting list of 15,000 -- and a handful of patients on treatment.
  • Will other important elements of support -- such as treating opportunistic infections, providing adequate nutrition and giving psychosocial assistance -- get low priority?

Vertical programmes have always got results of some sort through money and coercion -- whether it is family planning or pulse polio -- notes Dr Jesani. These are not long-term and have a disabling impact on the health system by emphasising one activity to the exclusion of others. However, this is no reason to oppose the ARV programme, he points out. One must look for ways to strengthen the system.

"The challenge is to develop systems for the provision of ARVs that heed all the warnings and minimise the drawbacks," writes public health specialist Dr Ritu Priya in the Economic and Political Weekly, December 13, 2003. "If the health system gets a boost in the process, that will contribute to the programme and to health care in general."

InfoChange News & Features, December 2004