In December 2016, Priya*, a 30-year-old HIV-positive sex worker in Secunderabad, Telangana, stopped taking her life-saving medicines. The reason: The antiretroviral therapy centre from where she used to get her medicines every month asked for her Aadhaar card.
Priya’s husband and children do not know that she is HIV-positive or that she is a sex worker. She worries that if she submits her Aadhaar number to the antiretroviral therapy centre, that information may be leaked, revealing these details about her life.
“Can the officials guarantee that my status will not be leaked?” she asked. “My husband will throw me out if he knows all about me.”
She now frequently falls ill with fever and gastritis, possibly because her immunity has been compromised as she has not been taking medicines for 11 months.
In 2015, the National Aids Control Organisation, or NACO, began urging states to collect the Aadhaar numbers of people living with HIV. They were asked to submit these numbers to their therapy centres to be linked to their patient identity cards issued by these centres, so that they can more easily avail of social security entitlements.
This linking has been very gradual and has not been implemented uniformly across the country, within states, or even within cities. Antiretroviral centres in states like Rajasthan, Madhya Pradesh, and Karnataka have been asking patients for their Aadhaar numbers. For almost a year now, the Telangana State Aids Control Society has been collecting Aadhaar numbers of HIV-positive patients registered with it.
National and state authorities claim linking Aadhaar to HIV patient ID cards is not mandatory.
“We are only encouraging state programme officers to collect Aadhaar number, but it is not at all compulsory,” said Dr RS Gupta, deputy director general of NACO.
But patient groups say authorities push hard to get Aadhaar details, sometimes even denying treatment till this information is submitted.
Over the past year, Geeta Moorthy, an outreach worker who helps HIV patients, has seen seven patients drop out of the government’s HIV programme in Secunderabad. Moorthy works with the non-profit organisation Chaitanya Mahila Mandal, which has been working for 12 years towards the prevention and treatment of HIV among the high-risk group of sex workers.
“Patients drop out of the programme for several reasons,” said Moorthy. “But this is the first time I am seeing people drop out of the programme because they do not want to give Aadhaar.”
Moorthy claims that one such sex worker died this year. “Around this time last December, the antiretroviral therapy centre in the government hospital began insisting on Aadhaar,” said Moorthy. “She just stopped taking medicines because she was scared of her identity being revealed.”
Several HIV-positive people, sex workers, gay men and women, and transgenders told Scroll.in that they had Aadhaar cards but, like Priya, did not want to share them at antiretroviral therapy centres.
The government first began linking Aadhaar cards with food ration services. Over the past year, it has been asking citizens to link them to PAN cards and now mobile phone connections.
Activist Chandrika, who works with the Karnataka Network of Positive People, does not mind when people identify her with her work to prevent and control HIV and AIDS. However, she is uncomfortable with her identity as an HIV-positive person influencing every aspect of her life, especially something as mundane as going to a ration shop.
She said even activists like her are apprehensive about linking Aadhaar with their patient identity cards. “Everyone does not know about me,” she clarified. “I do not have the courage to stand up to the society.”
The fears are not totally unfounded. “Data mining techniques allow anonymised datasets, that are innocuous independently, to be combined together to reveal highly personalised information,” said Reetika Khera, associate professor of economics at Indian Institute of Technology, Delhi. “This is a concern that data security and legal experts have been highlighting.”
The linkage of data may not be automatically happening as feared, said Raman Chima, policy director at Access Now, an international non-profit group that works towards protecting an open internet. “But we know that databases are being formed on the basis of the Aadhaar numbers being seeded by the private sector that could be used by insurance companies, for instance,” he said.
In the absence of a privacy law protecting electronic health records, the patients have very little legal recourse in case of a breach of health information, he added. The ministry of health and family welfare was still drafting a health information privacy law. The central government has also set up a 10-member committee under former supreme court judge BN Srikrishna to draft a data protection law. It is unclear whether the health privacy law will be part of its mandate.
In December 2014, Delhi was the first state to start collecting the Aadhaar numbers of HIV-positive people, with the Delhi State Aids Control Society organising Aadhaar camps in antiretroviral centres across the city. The state government said it wanted each patient to register with a single unique identity card, which can be used to trace patients if they drop out of treatment programmes.
Since the start of the HIV prevention, treatment, and control programme in 2004, the government had insisted that people living with HIV should provide address and identity proof with two photographs, but has not been very stringent about it. A 2012 guideline for ART services states that no person should be denied registration to the programme due to lack of an identity proof.
”The need for address proof to register in the programme is for the benefit of the people living with HIV,” said Gupta. “It is to ensure adherence to first line of treatment for HIV. We do not want people to become resistant to it.”
This argument is now being extended to linking HIV patients to Aadhaar.
Many states offer financial assistance to HIV-positive people. In Delhi, such assistance is offered to HIV patients with incomes less than Rs1 lakh and orphans whose parents were HIV-positive. In Telangana, assistance is offered to all HIV-positive patients. Over the last couple of years, many state-run financial assistance programmes have asked HIV patients to compulsorily provide Aadhaar-linked bank account details.
Dr V Rajasekhar from the Telangana State Aids Control Society said that people who do not want to avail of the financial benefit scheme can drop out of it, and need not provide an Aadhaar card. He also claimed that Aadhaar will help in “data cleaning,” that is, weeding out duplicate entries to get a better estimate of HIV prevalence.
A couple of years ago, some HIV activists encouraged the move to link patient identity cards with Aadhaar.
“We felt then that Aadhaar will help the programme trace patients who are lost to follow up,” said Firoz Khan, national coordinator for the National Coalition of People Living with HIV in India. “Now, we are hearing of many cases where the medicines have been denied because the person did not give his Aadhar number. We are worried about data security.”
Bezwada Wilson from the Safai Karmachari Andolan is one of the petitioners to the case in the supreme court opposing linking Aadhaar with all government schemes. “The state has the responsibility under the Constitution to reduce inequalities in the society,” said Wilson. “By linking Aadhaar to welfare schemes, the state is (making it more difficult for) the poor to avail of the schemes. It is unconstitutional.”
Dr Parveen Kumar, additional project director of Delhi’s Aids Control Society, dismissed privacy concerns. “This idea that patients should not share details with anyone shows lack of faith in the system,” he said. “This is a media-created frenzy.”
But the list of people who worry about Aadhaar’s intrusion into their everyday lives is only growing.
Manoj Kumar in Delhi is gay and HIV-positive. He has stopped availing of a pension scheme for HIV-positive people because he does not want to give his Aadhaar details. “I cannot give up my confidentiality,” said Kumar. “I fear that someone will get my number and start blackmailing me (for being gay).”
Raju*, a 23-year-old gay man from Delhi, does not have HIV but takes a blood test every six months since he is considered to be at high risk of infection. For the past year he has been worried by antiretroviral centres asking for Aadhaar. Raju’s family does not know he is gay. If, through an Aadhaar data leak, they find out that he is getting tested for HIV, he might have to reveal why and tell them that he is gay.
“Hum aise hi theek hai. I am safer without disclosing my identity,” said Raju.
*Names changed on request. This piece first appeared on Scroll.in. We welcome your comments at firstname.lastname@example.org.