Shoved, cursed and ridiculed, Nisha’s hospital visits were always stressful as a transgender woman and got worse after she was diagnosed as HIV-positive.
But a new app introduced as part of a drive to end an HIV epidemic in India by 2030 is providing her and the transgender community better access to doctors, lifesaving drugs – and hope – although it has raised concerns about digital privacy.
India has the world’s third largest population living with HIV – 2.1 million people – according to UNAIDS, with recognition that help is needed in the transgender community where the prevalence is 3.1 per cent compared to 0.26 per cent among all adults.
Nisha tested HIV positive last year after earning a living as a sex worker in New Delhi. On the job, she said, condoms would often break or she would not use one for more money.
“That was a bad idea. I ended up with HIV. I felt suicidal after I found out,” Nisha, 29, a trans woman who goes by one name, told the Thomson Reuters Foundation.
“It didn’t help that going to the hospital was torturous. People made faces, passed lewd comments … a doctor even kicked me out.”
Despite the Supreme Court recognising India’s two million transgender people as a third gender with equal rights in 2014, they are often kicked out by their families and denied jobs, education and healthcare, leading them to begging or sex work.
Trans women like Nisha say they face “double discrimination” and the risk of being shunned and abused – first because of their gender identity and then because of their HIV status.
But a counselling programme along with a new app is helping health workers track down HIV-positive transgender people, monitor their treatment and link them to doctors and antiretroviral therapy (ART) to suppress the AIDS virus.
“I have found new strength. I don’t feel depressed or nervous anymore,” said Nisha, who now begs at traffic lights.
“The app helps keep me physically healthy and she ensures I’m mentally and emotionally (healthy),” she said, pointing to her outreach worker Samyra, an HIV-positive trans woman.
The eMpower app – developed by IBM in partnership with India HIV/AIDS Alliance and the Global Fund to Fight AIDS, Tuberculosis and Malaria – monitored more than 1.2 million people between January 2018 and March 2019.
‘HALF THE BATTLE WON’
With mobile tablets in hand, HIV-positive transgender outreach workers keep a tab on others in their community living with HIV and counsel them and accompany them to see doctors.
“I tell them ‘I’m like you. I’m HIV-positive and I’m taking medicines too. You’re not alone’,” said Samyra, who works with Vihaan, a national initiative to expand counselling, outreach and follow-up programmes to people living with HIV.
“That makes a huge difference because it’s coming from one of your own. Half of the HIV battle is won when you have someone to hold your hand along the way.”
Health experts said transgender focused initiatives like this and the launch in March of India’s first HIV treatment clinic in Mumbai city run for and by LGBT+ people were pushing the country towards its target to end the epidemic by 2030.
But to achieve this target they said it was critical for patients to stick with ART. Sometimes stigma and side effects can cause them to drop out of the treatment.
That is why health workers follow up with clients every few months and record information on the eMpower app, including their weight, viral load and CD4 – white blood cells that fight HIV – and advise them on everything from their diet to safe sex.
They also note whether a client has faced discrimination, and arrange for partners and family members to get tested.
Sonal Mehta, head of India HIV/AIDS Alliance, said the app has helped boost Vihaan’s outreach numbers as well as the confidence of trans clients and workers, who often come from poor, semi-literate backgrounds.
“The trans clients definitely feel much more secure … but the outreach workers themselves also feel very empowered. They are professional officers working on the field, talking to doctors, government officers, engaging with various organisations,” she said.
While such technological advances are seen as key in the HIV/AIDS fight, health and software experts warn they can come at the cost of privacy.
The eMpower app creates a profile for each client with personal information including name, biometric ID number, occupation and monthly income, and a map pinning their location.
Without proper safeguards, such an app runs the risk of data breach and sharing information with third-parties, which can further ostracise an already marginalised community, said Ambika Tandon, a cyber security expert.
“The potential to monetise is definitely a risk factor,” said Tandon, policy officer in gender-based research at the Banaglore-based Centre for Internet and Society.
“Another is informational privacy … (clients) may not necessarily know where their information is being stored, who will have access to it … There could be multiple points at which their data could be vulnerable.”
Saravanan RM, a senior technical officer at India HIV/AIDS Alliance, said the eMpower app a “fool-proof system”.
He said all sensitive data was stored on the organisation’s server, which could only be accessed by specific workers through a password-protected system.
None of the information can be seen by any partners – not IBM, state or federal governments. It is further beefed up by a mobile device management (MDM), he said.
“For example, if any device is lost or has gone into someone else’s hands, what we can do through MDM is clean out the entire tablet and the data will not be acquired,” he said.
Dr. V Sam Prasad, India programme manager of the AIDS Healthcare Foundation, said the app should not be dismissed because there was a privacy risk as it came with major benefits.
Several HIV-positive transgender people like Swati, a trans woman who contracted HIV after injecting drugs, felt the same.
“Even if it (personal data) is leaked, what’s the worst that could happen? I’ve faced unimaginable things. Nothing scares me, at least not such things,” said Swati, 25, after a follow-up meeting with her outreach worker at her one-room home.
“It is (eMpower) saving me. It is not an enemy.”