Litigation as TB Rights Advocacy

One thousand people die every day in India as a result of TB, a preventable and treatable disease, even though the Constitution of India, government schemes, and international law guarantee available, accessible, acceptable, quality health care. Failure to address the spread of TB and to provide quality treatment to all affected populations constitutes a public health and human rights emergency that demands action and accountability. As part of a broader strategy, health activists in India employ Public Interest Litigation (PIL) to hold the state accountable for rights violations and to demand new legislation, standards for patient care, accountability for under-spending, improvements in services at individual facilities, and access to government entitlements in marginalized communities. Taking inspiration from right to health PIL cases (PILs), lawyers in a New Delhi-based rights organization used desk research, fact-findings, and the Right To Information Act to build a TB PIL for the Delhi High Court, Sanjai Sharma v. NCT of Delhi and Others (2015). The case argues that inadequate implementation of government TB schemes violates the Constitutional rights to life, health, food, and equality. Although PILs face substantial challenges, this paper concludes that litigation can be a crucial advocacy and accountability tool for people living with TB and their allies. Kerry McBroom, JD, is a reproductive rights activist and the former Litigation Director of the Reproductive Rights Initiative at the Human Rights Law Network, New Delhi, India. Please address correspondence to Kerry McBroom: [email protected]. Competing interests: None declared. Copyright © 2016 McBroom. This is an open access article distributed under the terms of the Creative Commons Attribution NonCommercial License (http://creativecommons.org/licenses/by-nc/3.0/), which permits unrestricted non-commercial use, distribution, and reproduction in any medium, provided the original author and source are credited. Health and Human Rights Journal HHr HHR_final_logo_alone.indd 1 10/19/15 10:53 AM K. McBroom / TB and the Right to Health , 69-84 70 J U N E 2 0 1 6 V O L U M E 1 8 N U M B E R 1 Health and Human Rights Journal Introduction State failure to adequately treat and prevent tuberculosis (TB) constitutes a human rights violation. In India, the Constitution, Supreme Court judgments, and international law commitments uphold the fundamental rights to life, health, equality, and dignity. At the same time, policies and legislation including the Revised National Tuberculosis Control Programme (RNTCP, 2005), the National Food Security Act (2013), and the Consumer Protection Act (1986) ensure treatment, related services, and legal protections for individuals living with TB. Despite legal guarantees, data indicate that in New Delhi individuals living with TB, especially women, and TB affected people in marginalized communities, cannot access quality testing services, adequate treatment, or the minimum nutrition they require. Tuberculosis Control (TBC) India reports that 1,000 people die every day from TB across India.1 The statistics on TB and TB-related deaths represent a fraction of TB’s impact in India. For example, the 2015 World Health Organization Global TB Report shows that India accounts for 23% of the world’s TB cases and for 54% of the reported multidrug resistant TB (MDR-TB) cases.2 TB affects millions of Indians. As part of a broader strategy to combat TB, activists in New Delhi use the legal system to close the gap between government policy goals and obligations and realities on the ground. This paper argues that legal advocacy is an essential component of a human rights-based approach to TB. It draws on a case study from New Delhi to outline a broad array of legal tools and arguments Indian activists use to advocate for the rights to life, health, and equality in the context of TB. The case study also highlights limitations and challenges of litigation. Part one describes how legal activists and lawyers in New Delhi use a rights-based approach to TB to document fundamental rights violations and government failures to implement schemes. Part two provides an introduction to public interest litigation (PIL) in India and outlines right to health judgments and impacts that inspired activists to use litigation in the TB context. Part three examines the legal arguments lawyers advanced in the TB PIL in New Delhi and the outcome at the Delhi High Court. Finally, part four explores the challenges these activists faced and the broader constraints of legal advocacy in India. Part One: Using human rights to evaluate TB policy in New Delhi India and Nigeria alone accounted for one-third of the 1.5 million global TB deaths in 2014.3 In 2013, New Delhi reported 3,239 medically certified TB deaths, almost 10 deaths every day.4 For human rights activists, this represents more than a public health crisis, it constitutes a state failure to uphold basic human rights to life, health, and equality. As part of a wider strategy to hold the government accountable for ensuring the right to health, activists at the New Delhi-based Human Rights Law Network (HRLN) developed a legal strategy to improve TB treatment in the capital, culminating in a legal case at the Delhi High Court. HRLN is a collective of lawyers and social activists committed to using the law for social change and to pursuing justice for victims of fundamental rights violations.5 This section illustrates the first step of HRLN’s legal advocacy strategy, documentation. Documenting fundamental rights violations: desk research, field research, and right to information requests Investigating and documenting health rights violations creates a record of key issues, improves awareness among communities and activists, and lays the foundation for further advocacy. As the first component of the TB legal advocacy strategy, researchers and lawyers in New Delhi gathered information from diverse sources to create comprehensive analysis of TB treatment and care in New Delhi. To evaluate TB services, the legal team employed the Available, Accessible, Acceptable, and Quality framework, known as the “AAAQ” framework, outlined in the General Comment No. 14: The Right to the Highest Attainable Standard of Health by the UN Committee on Economic, Social and Cultural Rights.6 Availability requires functional K. McBroom / TB and the Right to Health , 69-84 J U N E 2 0 1 6 V O L U M E 1 8 N U M B E R 1 Health and Human Rights Journal 71 TB facilities, goods, and services.7 Accessibility demands that TB facilities, information, goods, and services are non-discriminatory, physically accessible, and affordable.8 Acceptable TB services, goods, and facilities respect medical ethics and culture while quality obligates states to provide scientifically and medically appropriate heath facilities, goods, and services.9 India’s RNTCP has five key components aimed at fulfilling each of the AAAQ requirements: (1) a political and administrative commitment to ending TB, (2) good quality diagnosis, (3) uninterrupted supply of good quality anti-TB drugs, (4) supervised treatment to ensure adherence to treatment, (5) systematic monitoring and accountability.10 To test and treat TB, India relies on the Directly Observed Treatment Short-Course (DOTS) strategy. Operating under the assumption that many TB patients fail to complete treatment, DOTS mandates strict observation of patients and increased outreach to communities. The government of India has established DOTS centers throughout India where health workers watch TB patients take their medication three days a week, coordinate community outreach, and perform diagnostics.11 DOTS-plus centres add MDRTB diagnosis, management, and treatment.12 To uncover specific barriers to available, accessible, acceptable, and quality TB care in Delhi, HRLN researchers and lawyers collected evidence on the RNTCP and DOTS implementation in three phases: desk research, field research, and right to information (RTI) requests. Desk research examined publicly available material including RNTCP data, World Health Organization reports, and media reports. Frequently, government evaluations and status reports provide the richest source of data and pointed criticisms. The information collected on TB uncovered a public health and human rights crisis in Delhi. Today, 40% of the capital’s population lives with a latent form of TB.13 Additional information from the RNTCP 2014 annual status report shows that 3% of all DOTS patients in Delhi switched to MDR-TB treatment, a substantially higher percentage than in the rest of India.14 Desk research also discovered underspending on TB budgets and evidence that recent health budget cuts could further gut the RNTCP.15 Moreover, desk research captured important information on TB and gender discrimination, TB and nutrition, and developments in testing technology. For instance, reports of birth and death registrations show that in Delhi, the most women die from TB between the ages 15-24, whereas the most men die from TB later, between ages 45-54.16 The team used the desk research as context for field reports. Fact-finding reports featuring testimony from communities personalize statistics and expose specific barriers to available, accessible, acceptable, and quality care. HRLN social activists conducted fact-finding missions throughout Delhi to investigate DOTS centers and to interview members of TB-vulnerable communities. The first TB fact-finding mission in 2012 evaluated four DOTS centres and found that they did not have drinking water, clean, or comfortable spaces for individuals under treatment, nor did they have adequate staff or outreach services. A DOTS provider told the team that “the government does not care about his center’s situation and ... that two out of every three months the government does not pay the staff’s salary.”17 The 2012 fact-finding team also spoke to individuals receiving treatment about their experiences. Thirty-two-year-old Vipin suffered from TB for a year before seeking treatment because “he thought he would get better by himself.”18 Another individual had undergone DOTS treatment for two years with frequent interruptions in his treatment while he took trips to visit his home village. His teenage daughter received a positive TB diagnosis on the same day that the fact-finding team interviewed him. The family could not afford to purchase adequate food and relied on the DOTS centre to reimburse his transportation to the treatment center.19 A follow-up fact-finding mission in November and December 2014 uncovered poor record keeping; unhygienic conditions at DOTS centres including sinks with “stains, spills, and dirt;” and inadequate staffing across DOTS providers.20 A February 2015 fact-finding visit to the Pul Mithai slum community revealed additional state K. McBroom / TB and the Right to Health , 69-84 72 J U N E 2 0 1 6 V O L U M E 1 8 N U M B E R 1 Health and Human Rights Journal failures to ensure the AAAQ guarantees.21 Even with a TB hospital across the road, Pul Mithai residents routinely succumb to TB. The following examples are drawn from a series of fact-finding missions to Pul Mithai. The interviews highlighted within fact-finding reports show the RNTCP has failed to address key gender dynamics and cultural norms, important components of acceptable care. For example, an interview with Poonam, aged 27, revealed that women do not visit government health facilities because of their past negative maternal health experiences, the cost of travel, and limited freedom to travel outside of the community.22 Throughout visits to Pul Mithai, fact-finding teams interviewed Munita, a widow with four children who lost her husband, Khushi Ram, to TB in January 2014. He had received treatment at a government facility, but his condition did not improve.23 In May 2014 Munita, overworked, malnourished, and without access to proper sanitation, also succumbed to TB.24 Although she lived across the street from a government TB treatment center, Munita never received TB treatment.25 Women in Pul Mithai believe that the TB hospital is cursed because anyone who visits inevitably dies.26 Suresh’s case study from the February 2015 fact-finding mission in in Pul Mithai uncovers challenges even the most dedicated TB patients must overcome. Suresh received his second TB diagnosis in August 2014.27 The February 2015 fact-finding mission reported that “Suresh feels weak, faint, has a constant cough, and sometimes vomits blood.”28 The report found that Suresh received medication from the TB hospital across the road, but with regular medicine stock-outs, he was expected to obtain the medicines at his own cost from a TB hospital near India Gate, a distance of over 6km.29 Although the treatment is free at this hospital, transportation cost him a nearly impossible sum of about Rs. 1,650 (USD 25) over the six months since his diagnosis.30 TB medicines make Suresh lightheaded and dizzy; after taking them in the morning he can only lie down and rest. Unable to work, Suresh and his six children rely on his elderly mother’s income from selling dry fruits, sweeping, and odd jobs.31 His mother also has a chronic cough, and has a severely injured foot from a road accident.32 Sometimes the effect of the medicines is so strong that Suresh forgets to take the complete dosage for the day.33 For example, the day prior to the fact-finding visit, he had taken four of six required tablets, meaning that the remaining two tablets would be wasted.34 Suresh’s TB treatment experience highlights violations of the AAAQ right to health framework. For instance, the government has failed to ensure available services where Suresh’s DOTS facility has frequent medicine stock-outs. The prohibitive travel cost to the India Gate TB hospital represents a violation of the right to accessible treatment. Suresh’s extreme reaction to the medicine limiting his ability to work and to consume the full daily dosage indicates that the government of Delhi does not ensure Suresh’s right to acceptable and quality TB care. In addition to desk research and fact-finding missions, the team used the Right To Information Act (RTI Act, 2005) to seek additional information from the government on implementation of TB programs.35 The RTI Act allows the public to submit requests to the government for information about programs and mandates that the government reply. Activists routinely use the RTI Act to investigate corruption and implementation of schemes. HRLN filed RTI requests to the State TB Officer for Delhi requesting information on DOTS centres in the state, the staff at each facility, the number of DOTSPLUS facilities (for treating MDR-TB), the number of individuals enrolled in MDR-TB treatment, the number of individuals who completed TB treatment, the number of individuals treated at DOTS centers who died as a result of TB, and the current stock of drugs at each facility. Replies to the RTI requests showed widespread failure to provide adequate treatment to individuals with MDR-TB, failure to ensure available drug supplies, and high numbers of DOTS patient deaths. For example, an RTI response from Guru Teg Bahadur Hospital, Dilshad Garden Chest and TB clinic reported 65 registered MDR-TB patients in 2012-2013.36 The RTI reply stated that just 33 patients had completed treatment and that nine K. McBroom / TB and the Right to Health , 69-84 J U N E 2 0 1 6 V O L U M E 1 8 N U M B E R 1 Health and Human Rights Journal 73 individuals died during treatment.37 Data from desk research, field visits, and the RTI requests created a strong case of government failure to adequately implement the RNTCP guarantees in violation of the fundamental rights to life, health, and equality. The team met with prominent TB activists to discuss arguments and to shape the violations and demands. The fact-finding reports and documentation constitute important legal advocacy tools themselves. HRLN lawyers and activists presented findings from their research to government representatives at meetings and consultations throughout Delhi. Activists, including the petitioner sent detailed letters to government offices outlining findings and fundamental rights violations, and requesting immediate improvements. The government never replied to any of the letters. Faced with inaction, the team began drafting a public interest petition for the Delhi High