The East Jaintia Hills district administration has been working overtime to try and track down and reach out to HIV-infected people who have slipped under the radar of the authorities.
A government study found that there were 231 individuals who were HIV-infected in the district but who had slipped through the net of the local anti-retroviral therapy (ART) centre. Subsequent tests revealed that the spouses of 32 of them as well as two children were also infected.
East Jaintia Hills, a district that had a high number of migrant labourers during the height of the coal boom, is also a transit spot for drugs entering or passing through Meghalaya from other states. The highway that connects the rest of India to the Barak Valley of Assam, Tripura and Mizoram also passes through the district.
It is therefore not surprising that EJH is the worst-affected district in Meghalaya for HIV prevalence.
The 231 identified in the study were listed as ‘Lost to Follow Up’ (LFU), meaning that they had not contacted any health facility for the last 180 days. They chose not to undergo treatment for reasons such as stigma associated with the disease, transportation cost and distance of the treatment centre.
Finding these individuals was a big challenge as data was incomplete and confidentiality an issue to contend with.
With a mountain to climb, the District Magistrate, Abhilash Baranwal, sought the help of Barry Leslie Kharmalki, the programme manager at Project Ahana, which works towards preventing parent-to-child transmission of HIV. From this, a project called ‘Finding the Missing Link’ was launched in September with three team members doing the tracing.
It took three months of effort for most of the 231 to be tracked down. Sadly, however, 27 of them had already passed away by this point. A few others had migrated and some could not be traced as they had provided incorrect addresses during their initial registration with the ART centre.
Most of those still alive, 160, chose to get back on the ART programme but a few dozen still resisted.
The district administration is striving to overcome the resistance and hopes that a proper ART centre (the current one is only a ‘linked ART centre’) will help. HIV/AIDS workers, doctors, ASHA workers and other healthcare professionals have all been onboarded with the aim of persuading those infected to come forward for treatment.
Kharmalki, a social activist who has been living with HIV for the past 12 years, said that there are some people who profess not to care about the disease as long as they are healthy.
“We faced a lot of challenges,” he said of the tracing process, of which he was project director. “Firstly, we had incomplete data. Secondly, we had to answer a lot of questions from village authorities when we visited them. Furthermore, some areas that we visited were virtually inaccessible. My mission is to tell such people that they can lead a healthy life like me by undergoing treatment for the disease.”