In mid-January, Farzana Jan heard from a friend that Divya, who only goes by one name, 25, a transgender woman from Bunner District in Khyber Pakhtunkhwa, was critically ill. When Jan and a friend arrived at Divya’s flat in Nowshera, they found her lying motionless on a single bed in a dark room. The washroom door was open, with clothes and shoes strewn on the carpet. It looked as if no one – not even people from the adjacent two rooms -- had visited the space for a long time.
As the president of TransAction Alliance, the first organization to represent transgender people in the province, Jan is used to helping people in her community cope with difficult situations. Still, Divya’s situation caught her off guard. “I was distressed after looking at her condition,” she said. “She was not in this position to sit with us and talk with us.” After coaxing her to stand, Jan and a colleague took Divya to Peshawar for treatment. At Lady Reading Hospital, doctors tested Divya’s urine and antibodies. Later that evening, Jan heard the shocking news: Divya had HIV. If untreated, it could lead to AIDS.
According to TransAction Alliance between nine and ten thousand transgender people reside in Khyber Pakhtunkhwa (KP). But only around 400 of them are registered by NADRA and few of them have National Identity Cards. As a result, many are defied the right to government including healthcare through the Sehat Cards Plus program. Sehat Card Plus is a health insurance program initiated by the government of KP for all citizens in the province. The program aims to provide free treatment for accidents and diseases including diabetes, kidney disease, cancer, liver and kidney transplants, Hepatitis B and C, and heart disease in 701 public and private hospitals around the province.
Through this program, about 7.6 million families in KP are getting free inpatient healthcare services. But since data for beneficiaries is sourced through NADRA, a database controlled by the Interior Secretary of Pakistan, most transgender people don’t qualify for Sehat Cards because they don’t have CNIC. Since many transgender people are ostracized from their relatives, they aren’t listed in the NADRA database with their families, either.
Going at it alone
Around ten years ago, Divya went back to her family’s home in Bunner but was turned away because she was transgender. When she came home again after her HIV diagnosis, her family initially refused to accept her again. But after conversations with a council of elders and a cleric in the area, they agreed to take her back. Divya is now registered for treatment at the Hayatabad Medical Complex (HMC) in Peshawar, along with 24 other transgender HIV-positive patients from KP.
Dr Riaz Tanoli, the CEO of the Sehat Card Plus program, said that anyone who resides in KP and holds CNIC is automatically registered for insurance. But he said there are only 19 transgender people registered for Sehat Cards. He said fractured relations with family members and lack of awareness about the importance of CNIC among the transgender community are among the reasons for low Sehat Card Plus registration.
Namkeen, who also only goes by one name, a transgender woman and social activist based in Peshawar, said the main reason people from the transgender community fail to receive government benefits is lack of awareness. She said many transgender people in Pakistan are illiterate and don’t know about their rights. Some feel insecure in public settings, which stops them from seeking the services they need.
Namkeen graduated with a degree in political science and now works at a non-profit organization. But she said she also feels insecure sometimes because of how people behave around her, even in the office.
Namkeen has a CINC and got treatment for her kidney stones at HMC in November 2021. She submitted her NIC information, prescription, and receipt from hospital intake and got her medication free of cost.
In a private hospital, Namkeen said her surgery would have cost her Rs 2500, which she wouldn’t have been able to afford. She said the Sehat Card Plus program is a great initiative from the government, especially for low-income and transgender people, but they need to have the right information to take advantage of the program.
Societal exclusion
Qamar Naseem, the program coordinator for Blue Veins, an organization based in KP working for transgender rights, said transgender people are the most marginalized group in Pakistani society. Due to cultural and social norms, they are often disowned by family members for their gender. They live anonymously, he said, with neither national nor social identities.
Generally, transgender people are deprived of the most basic things in Pakistan, such as citizenship identity, education, shelter, employment, and healthcare. They are excluded from many cultural, religious, and social happenings and society does not respect them because they don’t hold a clear gender.
Misunderstanding about the transgender community is perhaps most evidenced by 2017 official census numbers, which account for only 1,000 people in KP. Naseem said the transgender community believes the true number of transgender people in the province is closer to 50,000. Naseem said social issues are the biggest factor creating this discrepancy. Although the Sehat Card covers all treatment, it does not cover transitional health care for transgender people. Naseem said he strongly encourages authorities to consider including this in the program's coverage to make it more inclusive.
Dr Subhan Khan, a senior doctor of HMC, said his hospital has a proper unit for HIV/AIDS patients. He said there are 2,776 patients registered in the unit, including 25 transgender people. The hospital has a facility to test people for the disease and once a person is diagnosed as HIV positive, it can provide treatment for them on the premises. Patients are required to come in monthly after their diagnosis for a checkup about their physical health and for advice on which medications to take for their condition. Khan urged patients from the transgender community registered with NADRA to come forward for free treatment that could change their life.
Dr Tanoli said the Sehat Card Plus program is willing to adjust its requirements if NADRA registers transgender people as individuals. This way, he said, no one from the transgender community will be deprived of benefits from the program as a result of not having a family tree in the NADRA database. He said the Sehat Card Plus program will cover all issues faced by transgender people if they can register themselves.
But for Divya and others, it might be too little too late. She said she wasn’t aware of the Sehat Card Plus program when she started to get sick. She is still living in her family’s home in Bunner District while waiting for a spot at the hospital – taking regular pain killers because her family can’t afford medication or a doctor’s visit to get her a prescription. She comes from a family with limited means and her relatives are struggling to give her the care she needs.
Jan worries there are many more transgender people in Divya’s condition. She fears they won’t seek treatment because of the cost and the stigma associated with aids and other diseases. “Now we can only pray for Divya’s recovery,” she said.