In cramped rented rooms, outside overcrowded government hospitals, and inside community clinics now operating only once a week, people living with HIV in Telangana are being forced into impossible choices every day — whether to buy medicines or food, skip treatment or borrow money to survive.
More than a year after the United States Agency for International Development (USAID) cut funding — following policy changes after Donald Trump assumed office as President in January 2025 — affected individuals across the state continue to struggle for access to treatment, medicines and basic survival support.
When TOI spoke to affected individuals, many described an inability to afford even the basic nutrition required alongside antiretroviral therapy (ART). In some cases, HIV has progressed to AIDS, the advanced stage of infection. Telangana has an estimated 1.2 lakh people living with HIV, according to the Telangana AIDS Control Society.
"I have lived with HIV for 26 years, but this is the first time I genuinely feared I would die because I could not afford treatment," said Priyanka, one of the affected individuals whose haemoglobin recently dropped to five, requiring four units of blood transfusion. "I kept collapsing at home. I would faint while walking and still had to go alone to the hospital again and again. Finally, they asked me to pay Rs 12,000 for blood. Earlier, NGOs would somehow arrange help. This time there was nobody. I borrowed money just to stay alive," she added.
The interruption of funding has led to the collapse of counselling and outreach networks that once helped patients access medicines, nutritional support, emergency care and regular follow-ups. With these systems weakened or gone, many organisations have been forced to shut clinics, reduce staff or scale down services drastically.
Patients say the crisis extends far beyond medicines. "ART alone is not enough. We need proper food, protein and regular monitoring. But many people cannot even afford two meals a day now," said Mahesh, who has been living with HIV for over 15 years.
"When medicines are taken without a proper diet, people become weak quickly. Some stop treatment because the side effects become unbearable. Then infections begin — tuberculosis, severe fungal infections, pneumonia. Many people I knew, who were supported by NGOs, are deteriorating rapidly," he added.
Twenty-eight-year-old Miheeka, also living with HIV, is now preparing for a second major surgery after spending nearly Rs 1.2 lakh on treatment last year following an accident. "It took us months to arrange the money. We sold jewellery, borrowed from friends and exhausted every possible source of support. Now doctors are saying another surgery is needed. We have no idea where the money will come from this time," said a volunteer associated with a foundation run by HIV-affected women and children.
Across Telangana, around 33 clinics that once catered specifically to people living with HIV are now struggling to function. Many NGOs and drop-in centres are either operating with skeletal staff or have shut down entirely.
Neethu Nampalli from the Mathroochaya Foundation, which works with HIV patients in rural districts including Mancherial, said many organisations can no longer afford salaries for doctors, counsellors or outreach staff. "Our office shut because we could not afford rent. Some clinics now open only once a week and often function without doctors or private counselling spaces," she said.
She added that districts including Mancherial, Karimnagar, Peddapalli, Adilabad and Mahbubnagar are experiencing increasingly inconsistent HIV support services.
The transgender community, categorised as one of the most vulnerable groups for HIV, has been particularly affected. Rachana, founder of the Telangana Hijra Intersex Transgender Samiti, said outreach systems have largely collapsed. "Earlier, outreach workers would regularly meet people, ensure testing, distribute preventive medicines and provide counselling. Now most of that network has collapsed," she said, adding that PrEP (pre-exposure prophylaxis), used for HIV prevention, has also become irregular.
Her organisation, which earlier received Rs 8 lakh to Rs 10 lakh annually, now survives on small donations and intermittent CSR support. "Today, we somehow manage Rs 30,000 or Rs 40,000 a month. That is not even enough to pay rent, let alone run programmes," she said.
Volunteers warn that the biggest risk now is silent treatment failure. "Government hospitals still provide ART medicines. But adherence is collapsing because there is nobody left to track patients, counsel them or even check if they are alive. People stop taking medicines due to stigma, side effects, depression or hunger. Earlier, outreach workers would physically bring them back into treatment. Now there are barely enough people left to do that," said Salman, who has worked on HIV-related programmes in the state.
