Citizen data and freedom: the fears of people living with HIV in India

India has the world’s third-largest population with HIV, after South Africa and Nigeria. A World Health Organisation report (December 2016) put the number of people living with HIV (PLHIV) in the country at 36.7 million. Since 2008, after years of pressure from activists, the government has been providing free Anti Retro-viral Treatment (ART) at government facilities. UNAIDS data from 2018 estimated that just about half the infected - 56%, are receiving treatment.

Many poor patients have trouble accessing healthcare facilities of a satisfactory quality; the stigma attached to sex work, for instance, makes women who might be at risk feel reluctant to expose themselves to testing and diagnosis. The fear of stigma also delays treatment, and the poor sometimes end up at hospital with multiple infections and complications. Medecins Sans Frontier, which runs a programme for PLHIV in partnership with the state of Bihar and other states in the country, noted that the discrimination against PLHIV was found even among health service providers, and often the only treatment available was at government ART centres. MSF noted, in an advertisement seeking to recruit a nurse in Bihar posted on website DevNetJobs in April 2020, that those seeking treatment were “refused admission, ignored and ultimately sent home to die.” In Bihar alone, on average, about 7,000 deaths were attributed to AIDS annually.

Patients accessing ART at public facilities must now furnish the Aadhaar, a 12-digit number that is a form of identification of all residents, now made mandatory by law to access government-run schemes and subsidies that draw on the Consolidated Fund of India.

This study was made urgent after initial conversations with PLHIV showed that they were fearful of their medical condition being widely known, especially after it became mandatory for them to produce Aadhaar for accessing healthcare services at government facilities in 2017. The report describes interactions with PLHIV in Bangalore and discusses precautions they take to ensure their privacy is protected.

The report describes interactions with PLHIV in Bangalore and discusses precautions they take to ensure their privacy is protected.

As the government enforced a lockdown to contain Covid-19 in March 2020, among the most affected were PLHIV; adversely affecting their access to ART centres. In some cities, community networks of PLHIV were able to ensure that the supply of medicines was smooth, while in others, access dropped drastically.

This study discusses barriers created by inadequate or exclusionary data systems in access to ART services for PLHIV, made critical in the current pandemic. It explores the problem of excessive “datafication” of health; while it is assumed that big data can serve as a tool in preventive medicine, recent experience with the COVID-19 pandemic showed that excessive reliance on data that is near impossible to verify can be detrimental to science.

Methodology

When the study was planned in February, it was assumed that fieldwork would be undertaken in Bangalore and Pune, However, with the lockdown and curtailment of movement that came into force in March in the wake of the pandemic, the plan was altered – fieldwork was undertaken in Bangalore in early March, and activists and PLHIV from Chennai and Mumbai were interviewed on the phone.

I began talking with PLHIV in Bangalore in March, starting with two men living with HIV at a private clinic where they would arrive for counselling and medicines. I also visited the largest government facility in the city at Victoria Hospital, where I interacted on different days with seven people who waited for their turn to get their monthly stock of medicines. I also remotely interviewed 5 activists working across India to document their perspectives on the surveillance of PLHIV.

Privacy risks post-Aadhaar

Operational Guidelines from the National Aids Control Organization in 2012 seek that ART centres protect patient privacy: “Confidentiality should be maintained at all levels irrespective of HIV status as per accepted medical ethics and the law. Maintenance of confidentiality should help to reduce discrimination against PLHIV during the management of the patient in the hospital.” Some of those under treatment at these centres, though, confided that they did not feel secure about their privacy.

The Aadhaar project was initiated in 2009 and the requirement of Aadhaar for ART was first introduced in 2015; the mandatory Aadhaar linking for all services was challenged in court, but in 2018 the Supreme Court ruled that Aadhaar could be used for the provision of all services and subsidies by the government. Officials sometimes insist Aadhaar is not sought mandatorily for HIV treatment; however, the NACO wrote to ART centres in 2017 to ask them to link the Aadhaar cards of PLHIV with their treatment for “effective monitoring and to duplication”.

There are news reports of patients dropping out of ART treatment at centres for fear that their status as PLHIV will be disclosed to the wider community, through the link with Aadhaar. Such instances of exclusion were brought up in front of the Supreme Court as well, to no avail. Many patients who have dropped out are also too poor to afford private services, leading to negative consequences for their health. It is also challenging for PLHIV, including sex workers, to acquire supporting documentation such as electricity bills and address proof to get the Aadhaar card made, due to associated stigma.

For proper follow-up, many government centres also insist that the patient offer details of the family. This is challenging for patients who might not like to reveal their gay status or their identity as sex workers. The PLHIV face discrimination even among health service providers.

As the Aadhaar linked to bank accounts and all other databases too, the most marginalized are among the ones to feel at greater risk of exposure. Sex workers, for instance, find that once the Aadhaar is linked to the mobile wallet that they use to accept payment for their services, their identity could easily be exposed.

The heavy reliance on biometrics – iris scan or fingerprints – in the Aadhaar ecosystem also introduces rigidity in the definition of identity, making it appear immutable. The lived reality, however, might not align with this fixed identity, especially as transgender people may not have identification documents in their preferred gender. Government databases treat gender and sexual identities as fixed, and are unable to capture their fluidity.

Government databases treat gender and sexual identities as fixed, and are unable to capture their fluidity.

Exercising one’s autonomy in disclosure of information is vital to the setting of boundaries in our negotiation with the state and society, and indeed with each other.[1] Maintaining privacy translates into an exercise in boundary setting, which is often made impossible for those living with HIV.

For many PLHIV the need to protect themselves from being ‘outed’ is far more important than access to the full spectrum of citizenship rights. As citizens, PLHIV are entitled to privacy; however, for a sex worker in need of ART medicines, for instance, the demand of Aadhaar for access to medicines comes with the risk of being exposed as a sex worker, especially if she also uses electronic modes of payment for her services.

In the early years of the HIV infection in the 1980s, scholars coined the term “social death” to indicate how people who lived with the virus might be physically alive, yet as good as non-existent socially. Although legislation has now gone far in asserting the citizenship of PLHIV, and medicines are now available that make HIV positive status like other chronic medical conditions, comparable to diabetes, for instance, the attenuation of citizenship rights remains.

Who owns personal data?

As Anja Kovacs of the Internet Democracy Project notes, the fact that proper consent is taken while people are registered on a database does not mean much when the databases are all linked to each other, and one’s data might be used for purposes other than what consent was initially offered for.

It might be worthwhile to dwell for a moment on personal information – data – and the question of its ownership. Lawyer Usha Ramanathan holds that the “eminent domain” – the power of the government to take private property and convert it to public use – is problematic when associated with personal data. She has asked whether a state exists for the people or people for the state.

At a time when the government acts with little transparency, it also seeks complete access to citizen data for contact tracing. Data of a personal nature – who one has met in recent times, health status, biometrics or history of one’s monetary transactions – cannot be accessed by the government without eroding privacy and giving the state greater power over individuals. This could result in augmenting the power of the state to curtail dissent, even when it is peacefully and democratically expressed.

At a time when the government acts with little transparency, it also seeks complete access to citizen data for contact tracing.

An attempt is currently ongoing to create a health database, the National Health Stack, ostensibly aimed at more efficient healthcare service provision. Initial presentations made as part of this effort mention a “payments level,” as part of the system, clearly indicating that data would be monetized.

What curtails the freedom of ordinary citizens could be even more detrimental to the welfare of PLHIV, who might not want to disclose sexual orientation, for instance. Abuse of such information can be traumatic.

Fear of exposure and being outed

One young gay man said he had shifted from a government ART centre to a private clinic, as he found the government centre careless in handling patient data. “I would find the register with patient names, photographs and other data lying about, for anyone to flip through. It was scary, that our phone numbers and other information were there for all to see. It inspired no confidence at all, and I shifted to a private clinic where I feel much safer. I know that no one would breach my privacy here.”

At the Victoria Hospital, PLHIV waited patiently for hours for their names to be called so they would get their monthly ration of medicines. Some of those I met had travelled long distances to get to Victoria Hospital. For some of those I spoke with, the fact that the distance was long was itself a protection against being found out. They did not wish to be treated closer home, for that might mean a greater chance of being found out.

These concerns of informational privacy are scarcely understood among law enforcement agencies. In 2018, NGOs Sangram, Rights4Change and Veshya Anyay Mukti Parishad (Prevention of Injustice to Sex Workers) brought out a report about the raids conducted on places where sex workers operate, and attempts to “rescue” women, even though many of the women themselves did not seek “rescue”.

One instance cited is of a raid at Miraj in South Maharashtra. After the raid, the women were put through mandatory medical tests and the HIV positive status of one of them was disclosed widely. The fact that she was HIV positive was used as a reason for housing the woman in a “rescue home”. One woman recalls this incident in the report, “Raided”, and adds that the woman living with HIV died soon afterwards, in trauma.[2]

A gay man, 47 years old and working with an IT firm in Bangalore, mentioned his fear that his office would find out about his HIV status. “That I am gay, I think, is known. People do not ask me, and I do not explain myself. But I tested positive for HIV two years ago, and I would not wish my office to know about this condition. When I underwent surgery in Mangalore, I paid the bills in cash and then produced only the bills back at the office for reimbursement from the health insurance provider. If my medical papers had all gone back to the office, my HIV status might have been difficult to conceal.”

If my medical papers had all gone back to the office, my HIV status might have been difficult to conceal.

Trade-off for the marginalised

However, among those who struggle for bare necessities, informational privacy might seem no concern at all. Eldred Tellis of Sankalp Rehabilitation Trust, Mumbai, who works with injecting drug users, said the people he cares for are largely unconcerned about maintaining privacy. “We have trouble getting the next meal,” he explained.

Tellis was attempting to regularly supply meals to the people in his care when I spoke with him in early June. In the lockdown, his staff was unable to commute and attend to their tasks, so Tellis was himself doing much of the work that in the normal course others would take care of. “I can only take care of one meal; the sponsors we used to have earlier are drying up now,” he said.

He mentioned one case of a man in his mid-30s who was ready to leave the rehabilitation home, but his brother was worried about having him back home, for fear the HIV positive status would affect his little child and wife. With no skills to earn a livelihood and no place to go, privacy would be the last thing on his mind, Tellis explained.

The primacy of technology

It is pertinent to mention that in recent years the government has thrown its weight behind technological solutions for problems that cannot be resolved through technology alone. Contact tracing over smartphones, for instance, was seen as one sure-shot way to deal with the spread of the novel coronavirus, even though a 2018 survey showed only about 17 per cent of India’s population own smartphones. This faith in technology as a solution is detrimental to democracy, especially in countries with poor digital access and literacy, like India.

This faith in technology as a solution is detrimental to democracy, especially in countries with poor digital access and literacy, like India.

For PLHIV, access to medicines, nutritious meals and work that is not stressful would go a long way in ensuring health and longevity. WHO has studied nutrition and chances of healthy living with HIV. “Observational studies indicate that low blood levels and decreased dietary intakes of some micronutrients are associated with faster HIV disease progression and mortality, and increased risk of HIV transmission.” Poverty and the fact that HIV strikes where malnutrition might already be endemic makes the chances of a healthy life for PLHIV in India not very bright. Universal access to a nutritious meal might be a more effective and less expensive solution, but it would not offer similar “returns to investment”.

At a policy level, offering greater access to quality meals and timely medical intervention might make for a less expensive and more efficient response to the HIV situation in India. However, there is little to suggest that this is as high a priority as data-gathering. The health system, not just in India but globally, seems under the influence of global corporations and international non-profits with a vested interest in pushing technological solutions. Technological solutions are also sought after because they offer potential to harvest data.

HIV infections figures not properly recorded?

Despite all the ostensible importance that is accorded to data, however, there is an evident shoddiness in the maintenance of government data. And this is perhaps not unique to India. A startling report in The Guardian exposed how studies on COVID that influenced government decisions across the world were conducted by people not qualified, and on the basis of dubious numbers.

At the ART centre in Bangalore that I visited, a board detailing the number of infections detected had data from November 2019 even though I was visiting in March 2020. There was initial reluctance to share data, and I was later told that the figures would be updated and I could return to look at the latest figures the next day. Data for November 20, 2019 was only faintly visible on the board: There were a total of 5821 male registrations and 4493 women in November last year. When I returned the next day, the figures updated were for March 16, 2020. There were 5951 male registrations and 4675 female. In four months, there were 130 new male registrations and 182 female ones.

The website of the National Aids Control Organisation (NACO) has not updated annual reports since 2016; this last report is about work undertaken in 2013-14. Activist Daisy David, herself HIV positive, mentioned that NACO data could be misleading – although it claims a declining trend in fresh infections, there are a large number of people registering at the different ART centres, she says, adding that compiling the information from ART centres across the country might reveal discrepancies with figures put out by NACO.

NACO also continues to operate in a manner suited to social conditions two decades ago. Gay men now have dating sites on the internet and paid sex too can be found online. NACO’s paradigm does not take into account “target groups” that are internet savvy.

A perusal of the websites of different state AIDS control organizations across the country also showed varying degrees of efficiency in uploading information – while Kerala had regular newsletters too, Bihar and UP did not seem to have populated the website after about 2013, and even reports of fresh infections could not be found. India’s policy of offering treatment to all living with HIV will flounder if those recently infected are not proactively found and offered access to treatment. A WHO report of December 2016 showed that only about half the 36.7 million people living with HIV in the country had access to treatment.

The complexities of health insurance

A robust public health system could proactively identify the emergence of new disease clusters and do what is necessary to contain the spread. This was witnessed in Kerala, where a high level of decentralization – district level doctors working in collaboration with representatives of the local government – led to prompt decision-making at the time of the first reported cases of novel coronavirus infection. Even though the Joseph Bhore Committee that was formed ahead of Independence had suggested that the government provide for healthcare, the neoliberal state has increasingly vested this responsibility in private institutions. 

One way in which the government has fobbed off its healthcare responsibility on private providers is by offering health insurance to the poor. The Ayushman Bharat scheme, launched in September 2018 offers coverage of up to Rs5 lakh to 10 crore poor families; in May this year, the government announced that one crore people had benefited from the scheme, and Rs14,000 core had been spent on it – a sum that the poor did not have to pay for healthcare, and which the government bore.

It might be pertinent to note that the total spend on healthcare in India was about Rs2.3 lakh crore in 2019-20, this is a significant sum, and might have been better utilised indirectly improving facilities in the government sector. Premium payout to private insurance firms may not be the best way to allocate government budget for health.

The Covid-19 crisis exposed the glaring lack of facilities; if there are no hospitals, insurance serves little purpose. Many like Dr. Narendra Gupta of the Jan Swasthya Abhiyan have contended that the government would do better by spending the money on improving facilities offered to those who reach government facilities for treatment.

The Covid-19 crisis exposed the glaring lack of facilities; if there are no hospitals, insurance serves little purpose.

The enactment of the ‘Human Immunodeficiency Virus (HIV) and Acquired Immune Deficiency Syndrome (AIDS) (Prevention and Control) Act, 2017’, prohibits insurance companies from discriminating against PLHIV. In particular, Section 3 (j) of the Act states that “no person shall discriminate against the protected person on any ground including any of the following, namely—the denial of, or unfair treatment in, the provision of insurance unless supported by actuarial studies”. Despite this, insurance for PLHIV remains a distant dream – there are almost no private insurers who will cover someone who declares himself or herself HIV positive. Insurance companies perceive such patients to be “high risk”, due to relatively expensive treatment plans. The Insurance Regulatory and Development Authority of India (IRDAI), has stated that the HIV positive cannot be denied health insurance cover “unless supported by actuarial studies”. This “support” from such studies is not hard, activists say. Some insurance companies have excluded HIV from specific exclusions without providing cover. In June 2020, the IRDAI directed insurance companies to disclose underwriting policy with regard to disability, HIV, and mental health, in an effort to promote the inclusion of these conditions.

STAR Health Insurance was the first company to provide insurance for PLHIV [which year?]. However, access to the Medi-Classic Insurance scheme is dependent on CD (cluster differentiation)-4 count (a low CD-4 count is considered “risky” in PLHIV). Most government insurance schemes also do not offer cover for HIV, including the flagship Pradhan Mantri Jan Arogya Yojna (PMJAY), which provides a coverage of Rs. five lakh per family annually for hospitalisation. As recently as March 2020, in the midst of the Covid-19 pandemic, more than 500 PLHIV as part of an effort by the Global Alliance for Human Rights submitted a plea to be included in the PMJAY. Such advocacy efforts have previously ensured inclusion of PLHIV in some state-level schemes, such as the Kalaignar Kappeettu thittam in Tamil Nadu, Mukhya Mantri Jeevan Raksha Kosh in Rajasthan, and Palak Mata Pita in Gujarat.    

Certification of HIV status and CD4 count is one of the key barriers in accessing these schemes. In Rajasthan for instance, all PLHIV must get certification from a panel of 3 doctors to certify their positive status to avail of concessions on travel from the State Roadways Travel Corporation.

Rashtriya Swasthya Bima Yojana, RSBY, is meant to offer insurance cover to those under the poverty line. Even under this scheme, though, one must pay Rs30 as registration fee. Although the website of the RSBY says “Beneficiaries need to pay only Rs30 as registration fee,” to be used towards the administration of the programme, there are instances in the press where people have not been able to pay even smaller sums for access to treatment.

For PLHIV, apart from the expense, there is also the concern that they do not want to disclose their medical condition. Activists too cannot often raise demands themselves if they are HIV positive, without divulging their identity. There are, however, activists like Chennai-based Daisy David, who allows the media to use her name and champions the cause of access to proper healthcare for all PLHIV.

During the lockdown imposed to prevent the spread of the novel coronavirus, those needing ART treatment found themselves having to come to the aid of each other, as the government machinery and other systems of support were overwhelmed with rising cases of Covid-19. Shruta Rawat of Hamsafar Trust in Mumbai described how the PLHIV were themselves driving scooters through the city, reaching fellow PLHIV medicines they needed under the lockdown. What is clear is that although the status as HIV positive may be something that the infected wish to hide from the wider world, there is a shared sense of solidarity among those who are positive, and the bonds of community between them have served them well when the government has failed.

Conclusion: less data is more freedom

This essay discusses various components of the landscape of institutional health care for PLHIV. It particularly looks into barriers produced by exclusionary or broken data systems, which can constrain the exercise of citizenship rights of PLHIV. This happens in various ways - systems that demand intimate information without adequate protections, or that create odious requirements that are difficult to meet for patients. A mix of sociocultural factors, including the stigma surrounding HIV, sex work, and sexuality, act as barriers to accessing ART treatments, either private or public, and schemes such as health insurance.

The introduction of the Aadhaar as a mandatory ID at ART centres has forced many PLHIV to drop out of treatment, which outweighs any benefits of de-duplication that might be achieved through this process. That this could prove not just exclusionary but also detrimental to public health seems not to be appreciated. What could move the government to consider the evidence, though, is unclear, given that these arguments were also presented in court while Aadhaar was challenged in the Supreme Court. Instead of centralised repositories, governments bodies such as NACO must design better statistical systems and update national-level data regularly. This must then be streamlined to inform policymaking and strengthen local implementation and be made publicly available through existing disclosure mechanisms.

Simultaneously, the focus must shift back to diverting budgets to build health infrastructure and staff government hospitals adequately instead of diverting precious resources into propping up private players with insurance schemes. A move towards such a campaign seemed to have begun when calls were made for the government to take over private health service providers who were either refusing treatment or overcharging patients during the Covid-19 pandemic. Sustained public funding can reduce reliance on large corporations and international organisations, which have their own vested interests. In the case of HIV/AIDS, there was a surge of activity while the Bill and Melinda Gates Foundation was involved in the area in India. With that funding having ended in 2013, the research and other activities appear to have tapered off.

The clinic had become a site of community support for PLHIV and transgender population in that area.

The private clinic that I visited in Bangalore was my entry point into this study, where doctors were piloting a new system of patient care. They would visit patients at home, and this service was beginning to get greater recognition as those availing it were telling others in the city about it. The clinic had become a site of community support for PLHIV and transgender population in that area. Such alternate models of patient care and community support must receive greater attention in future research, along with strategies of building and sustaining community networks such as the ones mobilised to ensure access to treatment during Covid-19, as public systems failed.