“Government Will Protect Me from the Stigma, But Only If I Am Alive”: The Struggle to Remove Four Words From the HIV/AIDS Act
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.
One reason for the shortage of drugs is the delay in payment by NACO to medicine manufacturers such as Cipla and Mcneil & Argus Pharmaceuticals. Pediatric HIV medicines such as Opinavir or Ritonavir syrup have also been unavailable in several instances. In March 2017, Rakesh Mohan, a young man who had contracted HIV as a child, wrote a letter to the Prime Minister Narendra Modi, Finance Minister Arun Jaitley, and Health Minister JP Nadda seeking their intervention in the issue. Nearly 640 children and adults living with HIV, as well as 51 organisations working with people living with HIV signed the letter. In it, Mohan requested the government to “look into the matter of HIV drug stock out in general and in particular pediatric HIV medicines to ensure that they are not merely exported but also actually available to the children in this country.” The stock-outs of medicines directly effects people who cannot afford to buy these drugs from the private sector and are forced to discontinue it till the time it is made available at the government-run ART centres.
I spoke to several people living with HIV about their experiences at the ART centres. A 45-year-old woman who lives in Lajpat Nagar, Delhi, told me about her 13-year-old son who began receiving treatment for HIV in December 2016. She said that her son could not take the required dosages of the generic drug Abicavir because of its shortage at the ART treatment centre in Lala Ram Swarup Hospital in Delhi. She added that she has on occasions when the centre did not have the 200-milligram drug prescribed to her son, she was given the 600-milligram drug, and asked to break it into three pieces. Another person living with HIV, a 32-year-old woman residing in Chennai, told me she was denied Nevirapine, an ART drug, at a treatment centre in the city because it was unavailable. In dire need, she said, she contacted Positive Women Network (PWN+), an organisation that works for women living with HIV across the country, to ask for help in getting the medicine. PWN+ located a hospital in Tamil Nadu that agreed to give her a single dose contingent on her returning the bottle with the remaining medicines after one dosage.
Since the HIV/AIDS Act imposes an obligation on the state to provide ART treatment only “as far as possible,” it makes the provision of treatment a mere assurance from the government—which may or may not be fulfilled—instead of a statutory right. Hari Shankar, a member of the Delhi Network of Positive People, an organisation that advocates for the rights of people who are HIV positive, explained the effect that the act would have: “Before the bill, we used to go to NACO or the court if we did not get the medicines.” He continued: “Now they will give reasons to the court for not providing life-saving medicines.”
The contentious phrase was absent from the original draft of the bill that was drafted and submitted to the Ministry of Health and Family Welfare in 2007. The Lawyers’ Collective—a legal advocacy non-governmental organisation founded by the lawyers Indira Jaising and Anand Grover—prepared the draft of the bill in consultation with organisations and networks working with people living with HIV. (Disclosure: I am currently working with Lawyer’s Collective as a legal officer.) The draft provided for reinstating a HIV-positive person who was discriminated against and dismissed from employment and Chapter V introduced provisions on the right to treatment. It created obligations on the state to ensure to access to testing, treatment and counseling for people living with HIV. In the seven years that followed, the bill was passed between the health ministry and law ministry, but was not tabled before the parliament. It was eventually tabled on 11 February 2014.
Raman Chawla, an activist who worked on the bill for over a decade, discussed how the pushing the bill through has been an uphill climb since its initial stages. “In 2008, the law ministry deleted the whole chapter on treatment from the bill,” he said. “For the next three years, people living with HIV protested outside the law ministry and health ministry time and again for an improved bill.” In 2011, the law ministry circulated a revised draft of the bill, which ensured free and complete treatment to people living with HIV. “However, when the government tabled the bill in parliament in 2014, they inserted ‘as far as possible’ in the chapter of treatment,” Chawla added.
After the draft tabled in parliament became public, civil society organisatios such as the Delhi Network of Positive People conducted strong protests, campaigns and advocacy to remove the phrase. The activists demanding the removal of the phrase told me they had organised meetings with members of the parliament continuously to register their concern with legislators. Based on an assurance by Congress member PC Chacko that Congress parliamentarians would move an amendment in the Rajya Sabha, the activists were hopeful that the phrase would be removed. Anand Grover, a senior advocate and director of Lawyers’ Collective told me, “It is extremely unfortunate that despite the overwhelming support for the amendment in the parliament this was not pursued.” In the Lok Sabha, Nadda said that it was the government’s “commitment” that they would give free treatment to HIV patients. “There is no need to write this,” he said.
The enacted law creates no legal obligation on a government agency to ensure access to medicine for the people who require it. I spoke to Loon Ghangte, the South Asia regional coordinator of the International Treatment Preparedness Coalition, a global network of activists advocating for HIV treatment access. “If this bill is for me then it should serve me, not the parliamentarians,” Ghangte told me. “‘As far as possible’ does nothing for us but just gives the government an escape route.”
The HIV/AIDS Act does contain certain commendable provisions, which introduce anti-discrimination measures, including criminalising discrimination against those with HIV. Paul Lunghdim, the president of Delhi Network of Positive People, noted however that these measures are insufficient if the state does not guarantee medical attention. The “government will protect me from the stigma, but only if I am alive,” Lunghdim said.
Apart from its non-committal provision on ART treatment, the HIV/AIDS Act contains other problematic provisions as well. Unlike the original draft of the bill, the enacted law does not provide for reinstatement as a relief measure in case an individual’s employment is terminated as a result of discrimination for being HIV positive. The act also fails to provide protection for persons perceived to be HIV positive, such as at-risk persons, including men having sex with men, sex workers, transgender people or injecting-drug users. One of the HIV prevention strategies used by networks of people living with HIV is a needle-syringe exchange programme, which reduces the harm caused to injecting-drug users by providing them safe needles. In the amended draft of the bill tabled before and passed by the parliament, the programme was removed. As a result, the act fails to acknowledge—let alone intervene to reduce—the risk of an HIV infection.
Tripti Tandon, the executive director of the HIV/AIDS unit at Lawyer’s Collective, commented on these flaws in the act: “The needle and syringe exchange programme is a critical intervention for injecting-drug users, which has been recommended by WHO, UNODC and UNAIDS.” She told me that it has been a part of India’s AIDS control program for over a decade. Amid such 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.
Another aspect that must be considered is the funding of the free ART initiative in India. Over the last three years, there has been a significant cut in the central budget allocation for NACO. In the 2015-16 budget, the central government reduced the NACO budget by 22 percent, bringing the allocated fund down from Rs 1,785 crore to Rs 1,397 crore. After civil society organisations and activists criticised the slashed funding, the government increased the NACO budget in 2016-17 to 1,700 crore and in 2017-18 to 2,000 crore. However, according to a May 2016 report in the Times of India, the “HIV/AIDS control programme had been hit” because the budget cut affected its ability to pay salaries, organise capacity-building programmes, and workshops. This makes it all the more important for the government to not look for wiggle room and instead make access to healthcare the statutory right of every person who is HIV positive and needs those medicines. “Without the guarantee of treatment, HIV will once again become a death sentence,” Anand Grover said.
Members of the HIV community, along with activists and the organisations working with them, are beginning the second leg of this campaign with a heavy heart. The community intends to move the courts to demand free and complete treatment. The next few years are crucial to test the legislation. People living with HIV will have to wait and see whether the government stays true to its verbal assurance.
An earlier version of this article incorrectly identified Raman Chawla as an advocacy officer at Lawyers' Collective. This has been corrected because he is no longer working at the organisation. The Caravan regrets the error.