Asha*, a 31-year-old sex worker from Bengaluru, was diagnosed with having the human immunodeficieny virus (HIV) in 2018. Soon after, she began procuring ART medicines from the government-run HIV centres. The health workers there asked her to eat nutritious food and also undergo regular blood tests. They also told her to stop sex work to maintain good health. But Asha, a trans woman, had to continue as she had no other source of income.
By early February this year, cluster of differentiation 4 (CD4) had dropped drastically. According to doctors at Bengaluruâ€™s Bowring Hospital, CD4 is a glycoprotein found in immune cells, that is necessary to produce antibodies. A person with HIV must maintain a CD4 count of over 500 in order to remain in good health. Further, Asha was also experiencing side-effects of the ART medicines including vomiting and fever. She also developed rashes on her body. Though she was admitted to Bowring Hospital in Bengaluru in February, after a week, she passed away.
The HIV centres only provide medicines; however, patients from lower income backgrounds continue to struggle to maintain good health and get access to nutritious food; especially with reduced avenues as community organisations fold due to lack of funding. Further, trans patients complain that they are often turned away or treated flippantly when they complain of side effects of the medication, which affects their quality of life.
Lack of treatment for side effects
Mallu Bhajranti, a 37-year-old trans woman from Bagalkote district, contracted HIV three years ago. She has severe side effects of the ART treatment, including rashes on her body and also vomiting. Bhajranti goes to the Bagalkote district hospital once in three months to get her ART medicines. However, she says that the doctors do not bother to treat her for side effects and merely tell her that they will pass in time.
â€śMy hair is gone, I have severe rashes all over my body. I have frequent bouts of vomiting and cough. Sometimes I have a fever. The doctors keep telling us to get regular blood tests and we have to get this done by ourselves. It costs Rs 1,200 or Rs 1,500 for one test. I barely make that much money in a week. The government is not helping us with food or even treatment,â€ť she said.
â€śI have seen so many cases where doctors just tell sex workers or transgender persons with HIV to go home and sleep it off as the fever or vomiting is a side effect of the medicines,â€ť added Mallu Kumbhar, a trans woman who runs a community-based organisation called Samara in Bengaluru, and helps create awareness and provides support for sex workers and sexual minorities who have contracted HIV. â€śHow can we be treated like this? Is it not inhumane?
Lack of funds
Mallu Kumbhar says that over 200 people in Bengaluru have died in the last one year due to inadequate care for the side effects of the treatment and also due to lack of proper nutrition.
She said that since 2015, the community-based organisations and NGOs working to support those with HIV and AIDS have reduced as the government has not provided them with funds. In 2015, there were 173 community-based organisations and NGOs working under the Karnataka State AIDS Prevention Society. In 2020, there are only 68 community based-organisations.
â€śWe have to get Rs 10 crore from the government since 2015. Many of our staff have not been paid salaries for over a year. In other organisations that were helping people with HIV, this was a problem too, and they had to eventually shut down because the government was not releasing funds,â€ť Mallu Kumbhar said.
Jeet*, who also works with Samara, is also HIV positive. Jeet said that the condition of patients with HIV, especially sex workers and sexual minorities had taken a turn for the worse after the government shut down the Community Care Centres (CCC). Until 2016, the state government had one CCC in each district, which had 15 beds, just to care for patients with HIV from lower income backgrounds. These were shut down after funding for the Karnataka State AIDS Prevention Society (KASAPS) was slashed drastically. Jeet said that they too have not received salary for a year and had to take loans to survive.
In 2014, the KASAPS received funding of Rs 117 crore. This figure reduced to Rs 77 crore in 2015. In the 2019-20 fiscal, Rs 84 crore was allocated to KASAPS of which Rs 63 crore was allocated solely for ART medicines, HIV testing and targeted interventions. â€śWhere are the funds for starting community-based clinics and maintaining them? Earlier, maybe five years ago, funds were there. Now we have to focus on what to prioritise with the money that is allocated,â€ť a senior official with KASAPS said.
What action has been promised?
On Wednesday, the Programme Director of the KASAPS, Leelavati, met with several heads of NGOs and community-based organisations and gave them a written undertaking that the outstanding funds will be reimbursed within three months. However, Mallu Kumbhar said that the process is probably going to take another year.
â€śA committee has been set up to audit outstanding amount. After that, they will send a representation to the government to sanction funds. Only if the government releases it will we get the money. If this continues, more community-based organisations will pull back and the people who really need care will end up suffering even more,â€ť Mallu Kumbhar added.
Mallu also said that the communityâ€™s demands from the government are few. Firstly, to reopen the Community Care Centres, where nutritious meals are provided to patients with HIV from low income groups; Secondly, to ensure that these CCCs are adequately staffed to treat persons with HIV and AIDS, who suffer side effects.
â€śWe have only a few demands. We hope they are met, at least for the sake of our survival,â€ť she added.