“Government Will Protect Me from the Stigma, But Only If I Am Alive”: The Struggle to Remove Four Words From the HIV/AIDS Act

04 May 2017
Amidst other serious implications of the bill getting passed, the HIV movement in India still focused on removing four words from the bill because of its necessity for effective treatment.
Parveen Negi/India Today/Getty Images
Amidst other serious implications of the bill getting passed, the HIV movement in India still focused on removing four words from the bill because of its necessity for effective treatment.
Parveen Negi/India Today/Getty Images

On 11 April 2017, the Lok Sabha passed the Human Immuno Deficiency Virus and Acquired Immune Deficiency Syndrome (Prevention and Control) Bill, 2014 or the HIV/AIDS Bill. Since the Rajya Sabha had passed the bill on 21 March, this day marked the passage of the bill by the parliament. JP Nadda, the union health minister, hailed its passage as “historic,” and a plethora of politicians in both houses lauded the bill and the health minister. Shrikant Shinde of the Shiv Sena congratulated the health minister for bringing forward an “important bill.” Ratna De, of the Trinamool Congress, called it a “landmark bill,” while Jairam Ramesh from the Congress expressed his support for the bill by saying it would be passed “unanimously and enthusiastically.” However, the bill received a tepid reception from those it is intended to benefit—people who are living with HIV—and the civil society organisations that support them.

The main contention that these people and organisations have with the bill is the phrasing of Clause 14(1), which states that the central and state governments are required to provide antiretroviral therapy, or ART, “as far as possible.” This aspect of the bill was also criticised by the same parliamentarians who praised its passage—such as Shinde, De, and Ramesh—among others. “It is an escape route for the government, which should not be in the bill,” D Raja, a Rajya Sabha member of the Communist Party of India, said in Rajya Sabha. He continued, “If that is there, it will defeat the purpose of the bill.” Members of the Rajya Sabha from the Congress, such as Husain Dalwai and T Subbarami Reddy, moved amendments to delete the phrase from Clause 14. But upon a verbal commitment from Nadda that “nobody would be denied [ART] on any count,” the legislators withdrew the amendments. The bill was passed in both houses of parliament and enacted into law on 21 April.

The HIV/AIDS Act had the potential to make a remarkable difference in the lives of people living with HIV, but its non-committal provisions on treatment has meant that it falls short on many counts. Although the act provides protection against discriminatory practices, it does not ensure the availability of diagnostic and ART treatment to people living with HIV. Its commitment to to providing medical assistance for HIV/AIDS treatment only goes “as far as possible” for state or central governments. The inclusion of these four words is being criticised because HIV drugs and treatment have to be taken by those living with HIV throughout their lives, without any interruption. Missed dosages can cause drug resistance in the body over a period of time and lead the virus to spread faster. Based on a diagnostic test, people who are HIV positive are required to take a combination of medicines used to treat HIV, which constitutes the first line of ART treatment. The person living with HIV may be shifted to a second line of treatment—which has harsher side effects on the body and is more expensive—in case they develop resistance to the first line. As a result, a positive person who did not receive the necessary drugs during the first line of treatment will need the second line of treatment sooner.

According to the India HIV Estimations Report 2015, put together by the National Aids Control Organisation—a body under the Ministry of Health and Family Welfare, which leads HIV/AIDS control programmes in the country—India has 2.1 million people living with HIV. This is the third-largest countrywide HIV epidemic across the world. While the virus was practically untreatable in the 1990s, it is now possible to arrest its impact as a result of pharmacological advances in combating the disease. The NACO report states that since 2007, India has recorded a decline in new HIV infections by 32 percent as well as a decline in deaths caused by HIV/AIDS by 54 percent.

The success in reducing the HIV epidemic rate can be partially attributed to the free ART initiative that the first United Progressive Alliance central government launched, in 2004. Although India succeeded in halting and then reversing the growth of the epidemic, the initiative suffered from shortage of essential drugs. This shortage continues to plague the existing ART programmes and the government needs to find effective measures to combat the issue. The Indian government’s inability to provide ART drugs to its citizens is ironic considering that almost 90 percent of the global supply of ART drugs come from the Indian pharmaceutical companies.

Shivangi Misra is a legal officer at Lawyers' Collective.

Keywords: Drugs medicine HIV/AIDS NACO