Shillong, Dec 12: A new study carried out by Indian Institute of Public Health (IIPH) Shillong has found that more than 1,000 people living with HIV (PLHIV) in Meghalaya have stopped visiting antiretroviral therapy (ART) centres, raising concerns over treatment interruption and the risk of further HIV transmission.
The mixed-method study, conducted by a team of researchers including Carinthia B Nengnong , Melari Shisha Nongrum, Wallam Bok Langstieh, Safeeda G Warjri, Herman Nadon and Iadaphiralang Wriah, examined why 1,168 patients in the state had become “lost to follow-up” (LFU) as of May 2024. The highest numbers were reported from East Khasi Hills, East Jaiñtia Hills and West Jaiñtia Hills.
Researchers surveyed 208 PLHIV who had discontinued treatment and interviewed 30 healthcare providers from different districts.
The study shows that the majority of LFU patients are young adults between 27 and 35 years. Women make up slightly more than half of those who stopped treatment. Most participants reported low education levels and modest incomes, with 85 percent earning less than Rs 21,913 a month.
More than 90 percent of participants reported regular tobacco use and 45 percent consumed alcohol. Only a small number had participated in HIV awareness programmes.
The most common reasons for dropping out were linked to travel difficulties. Around 81 percent said high transport costs prevented them from reaching ART centres, while many reported having to travel long distances on poor roads.
Healthcare workers confirmed this challenge, saying clients often spend up to Rs 300 one way to reach Shillong from rural areas. Many eventually stop visiting hospitals due to the financial burden.
Fear of being recognised at local health centres, stigma from communities and concerns over confidentiality were also major reasons. Some patients preferred travelling to Shillong instead of visiting centres in their own districts to avoid being identified.
Healthcare workers reported disturbing instances where frontline staff themselves spread misinformation. In one case, an ASHA worker told villagers that HIV could spread by sitting together.
Many participants also struggled with disclosure at home. Women, in particular, feared telling their HIV-negative partners, leading them to hide their status and stop treatment.
Patients often said they felt “tired of taking daily medication,” especially when they no longer had symptoms. Others stopped ART after being influenced by traditional healers promoting herbal cures.
Side effects, irregular work schedules, and long waiting times at hospitals also contributed to poor adherence.
The researchers have recommended several steps to reduce LFU among PLHIV in the state. These include: Improving financial and transport support for ART visits. Training healthcare workers to reduce stigma and ensure better counselling. Strengthening confidentiality and patient-friendly services at ART centres. Regular review of ART regimens to manage side effects. Providing mental-health support for patients facing stress or stigma. Creating smoother systems for migrant patients who move between districts.
The study was approved by the IIPHS ethics committee, and all interviews were conducted with informed consent. Researchers say the findings can help Meghalaya strengthen its HIV control efforts and move closer to the UNAIDS 95-95-95 targets, which aim for early diagnosis, treatment, and viral suppression among all PLHIV.
