Unveiling the unseen: Exploring unmet needs among people living with Human Immunodeficiency Virus in Chittoor, Andhra Pradesh, India

For decades, the story of HIV has been one of medical triumph. Thanks to modern medicine, the virus that once led inevitably to a fatal illness is now a manageable chronic condition. With daily medication, people living with HIV can expect to live long, healthy lives, much like someone managing diabetes or high blood pressure. However, surviving the virus is only half the battle. As people live longer, their needs evolve beyond just taking pills. They face a complex web of daily challenges: finding work, feeding their families, keeping a roof over their heads, and navigating a society that often fears and shuns them. In many parts of the world, the medical system is ready to treat the virus, but the social safety net designed to support the person remains full of holes. Understanding where these gaps exist is crucial, because a person cannot stay healthy if they are hungry, homeless, or too afraid to leave their house.

In the Chittoor district of Andhra Pradesh, India, a team of researchers set out to map these invisible obstacles. They focused on a group of 94 adults living with HIV who were receiving treatment at local clinics. The researchers wanted to know what these individuals needed most, what they were getting, and, more importantly, what they were missing. They spoke with the patients themselves, asking about their lives, their struggles, and their hopes. They also interviewed the people working on the front lines: doctors, community volunteers, and local government staff. By listening to these stories and counting the responses, the team built a clear picture of the unmet needs that persist even when medical treatment is available.

The most striking finding was that money is the single biggest hurdle. Nearly 60 percent of the participants said they needed financial help, either in the form of a pension or a low-interest loan to start a small business. This need was not just about comfort; it was about survival. One young mother, who had been abandoned by her husband after her diagnosis, described selling flowers at a temple before the pandemic stopped her from working. She recounted days where she ate only one meal, crying as she spoke about the struggle to feed her child. Despite the existence of government pension schemes for people with HIV, many participants reported that the system had broken down. Some said the online application forms no longer had the correct category for them to select, while others were told that recent policy changes had disqualified them from benefits they had previously received. In some cases, the government had stopped a "double pension" that allowed families with multiple members living with HIV to receive support from two different schemes, leaving them with nothing.

Beyond the wallet, the need for a stable home and food was acute. While most participants received free medication, the physical toll of the disease often made it hard to work. One woman, a daily wage earner, explained that her medication left her feeling so weak that she sometimes could not get out of bed to work. She could not afford vegetables, and the basic ration provided by the government was often of poor quality or insufficient in quantity. She expressed a desperate need for nutritional support, such as fortified powders, to regain the strength to work and care for her family. Similarly, housing was a major concern. Some participants, including young orphans who had lost their parents to the virus, lived with relatives who were uncomfortable with their presence. These individuals asked for care homes or shelters where they could live with dignity, rather than feeling like a burden.

The study also highlighted a deep fear of discrimination that kept people from seeking help. Even though the government offers various support programs, many participants were too afraid to apply. They worried that the process would reveal their HIV status to their neighbors or community. In one instance, a local official described how the village office would call out names publicly to verify eligibility, a practice that forced people to choose between getting help and staying hidden. This fear was not unfounded; some participants reported that healthcare workers had accidentally or intentionally shared their status with others. One woman refused to move her medical registration to a hospital closer to her home because she feared being recognized. Another woman was denied cataract surgery at a local hospital solely because of her HIV status, forcing her to travel hundreds of kilometers to a different district to receive care.

The researchers found that these needs were not the same for everyone; they shifted depending on a person's age and gender. Women were far more likely to ask for financial aid and housing, often because they were the sole providers for their families after being widowed or abandoned. Men, on the other hand, were more likely to ask for help with employment or their children's education. Younger adults, typically between 18 and 40 years old, were focused on finding jobs and paying for their children's schooling. Older adults, those over 40, were almost exclusively concerned with financial security and pensions. This distinction matters because a one-size-fits-all approach to support will fail to address the specific realities of different groups.

Despite the clear availability of free medical care, the path to accessing other essential services was blocked by administrative confusion. Most participants said they simply did not know what schemes existed or how to apply for them. Those who did try to apply faced slow processing times and a lack of guidance. The researchers noted that the system felt top-down, designed without considering the actual lives of the people it was meant to help. The result was a situation where people who were medically stable were still struggling with poverty, hunger, and isolation.

The study concludes that treating the virus is not enough. To truly support people living with HIV, the support system must be rebuilt to address their human needs. This means ensuring that financial aid actually reaches the people who need it, that applications are processed without exposing their private status, and that nutritional and housing support is available for those who cannot work. The researchers suggest that fixing these administrative bottlenecks and training staff to protect patient confidentiality are the most immediate steps needed. Without these changes, the promise of a long, healthy life for people living with HIV remains incomplete, held back not by the virus, but by the barriers of a society that has not yet learned how to fully welcome them back.