A new year reminder: India's HIV Bill does little to ensure access to treatment

Since pressure to draft the HIV and AIDS (Prevention and Control) Bill, 2014, began to be mounted more than a decade ago, socio-political circumstances have considerably changed. Yet, the contents of the bill do not reflect this change and are inadequate in addressing the needs of people seeking to access treatment, which has become increasingly privatised and unaffordable.

People involved with HIV/AIDS issues have pointed out serious deficiencies in the bill that was approved by the Union cabinet on October 5 and is now pending Rajya Sabha approval. While overtly focusing on prevention and tackling “stigma-discrimination” faced by the 2.4 million HIV-positive people in the country, the bill dilutes their right to treatment. It reiterates the lack of political will of successive governments to ensuring the right to healthcare of citizens, a right laid down by the United Nations Declaration of Human Rights. This right includes universal access to a healthcare system and receiving comprehensive, affordable and appropriate care.

Making of the bill

The HIV/AIDS bill was conceptualised at an International Policy Makers Conference on HIV/AIDS, held in New Delhi in 2002 in the hey-day of funding for HIV/AIDS. Though it was drafted through a wide-ranging consultative process in 2006, the political class ignored it.

After much pressure and persuasion by civil society groups, the Congress-led United Progressive Alliance government tabled it in the Rajya Sabha in February, 2014 at the end of its decade-long rule. By this time, however, the sheen of HIV/AIDS as a development problem had faded and international funding for HIV/AIDS had already dried up in India. India claimed that new HIV infections had dropped 57% in 2012from 2001 and 66% in 2015 since that year.

During this period, funding from multilateral, bilateral and philanthropic organisations to the National AIDS Control Organisation reduced by almost 90% during 2012-15. The NACO IV programme between 2012 and 2017 proposed a budget outlay of Rs 13,415 crore, of which Rs 4,909.85 crore was expected to come from external donors. An annual average of Rs 1,700 crore was budgeted for. However, figures since 2012 onward indicate that the government average annual spending has been Rs 930 crore-Rs 960 crore even as the pool of external funders has dwindled drastically. For example, funds from World Bank, DFID, USAID, UNDP was “nil” for the year 2012-’13.

Addressing stigma, ignoring access

Historically, this bill marks a step forward as being the first legislation explicitly stating its intent of protecting of human rights of HIV-affected persons. It seeks to address the two major demands of people with HIV and AIDS – the eradication of discrimination, and access to treatment. The overwhelming emphasis was on the former. Some of the therapeutic concerns were taken care of through funding almost to the tune of Rs 1,000 crore annually from UNAIDS, the Bill & Melinda Gates Foundation, the Global Fund to Fight AIDS, Tuberculosis and Malaria, The United Kingdom’s Department for International Development and the United States President’s Emergency Plan for AIDS Relief.The bill does not account for this drying up of funds since it principally focuses on the issues of stigma and discrimination faced by PLHAs more than access to healthcare.

The bill primarily seeks to curtail discrimination against people with HIV and AIDS and those living with them – mostly children ­– in matters such as employment, education, healthcare, right to privacy and right to reside in shared households. In this regard, one of the most important provisions of the bill is the appointment of an ombudsman in every state to inquire into complaints on the breach of rights granted in the bill. However, the bill aims to legally protect civil rights of PHLAs leaving very little to the realm of social rights like access to nutrition and healthcare services, which require welfare measures and allocation of financial resources.

Other countries with newly industrialising economies such as Brazil Russia, China and South Africa spend between 3.5% and 8.5% of their GDP on public health to ensure available, accessible and effective healthcare. India’s twelfth five year plan document had proposed a conservative 2.5% of GDP for public health expenditure. However, successive governments in India including the current ruling dispensation have failed to increase spending on healthcare beyond 1.15% of GDP, according to the National Health Accounts 2013-14. The public per capita expenditure lies at a shocking Rs 1,042, among the lowest in the world.

No political will

Along with confronting stigma and discrimination, people with HIV and AIDS must fight a life-long battle against diminishing immunity giving rise to opportunistic infections. They need a regular supply and dispensation of anti-retroviral therapies, opportunistic infection management, and adequate nutrition to live a healthy and productive life, in order to enjoy the civil rights bestowed on them through this bill. Given the regressive funding situation for healthcare in India, the absence of any additional legal rights for anti-retroviral therapy is certain to affect PLHAs’ access to treatment.

The lack of political will to make a difference in HIV/AIDS management is evident in Sections 13 and 14 of this bill, dealing with the treatment requirements of people with HIV and AIDS. Section 13 states that the government “shall take all such measures as it deems necessary and expedient for the prevention of spread of HIV or AIDS, in accordance with the guidelines” and Section 14 supplements this by stating that such measures will include “guidelines and protocols for providing, as far as possible, ART and Opportunistic Infection Management to people living with HIV or AIDS”. These sections do not bestow any legal right to treatment to people with HIV and AIDS.

The government has stated that “there are no financial implications of the bill. Most of the activities are being already undertaken or can be integrated within the existing systems of various ministries... The Ombudsman need not be a separate entity, but any existing State Government functionary can be deputed or given additional charge.” Having an autonomous ombudsman would be crucial to addressing grievances against the rights proposed in the legislation and bill’s position of allowing an existing government functionary to fill the post raises questions of whether people with HIV and AIDS will only be thrown back into the same machinery that has, so far, perpetuated discrimination.

The public health community has argued for a robust comprehensive primary health care system with universal access, complemented by an efficient referral system as the foundation for health rights and the HIV/AIDS bill could have laid the ground for such a system. Unfortunately this opportunity seems to have been lost.

The writer is an advocate and PhD scholar at Centre for Social Medicine and Community Health, Jawaharlal Nehru University and is a research associate at Centre for Health and Social Justice, New Delhi.