On a mission of hope and health
Prasanta Mazumdar catches up with IAS officer who spearheaded a project to trace HIV-infected patients going off the grid due to various reasons, and persuading them to resume treatment
MEGHALAYA: Abhilash Baranwal, posted as district magistrate at East Jaintia Hills in Meghalaya, was taken aback when he learnt that the district was home to more HIV-infected people than were reported to an Antiretroviral Therapy (ART) centre for treatment.
He ordered a survey, and relying on data shared by the ART centre, 231 such people were detected. Subsequent tests revealed the spouses of 32 of them and two children were infected as well.
On July 31 last year, during a function organized in district headquarters at Khliehriat to pay a tribute to the lives lost to HIV, the organizers shared a grim picture of HIV prevalence in East Jaintia Hills – Meghalaya’s worst affected district.
The 231 HIV-infected people in the district were listed as “Lost to Follow Up” (LFU) – 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, among others.
Locating them was challenging, for the information available was incomplete and there was the confidentiality clause to contend with. Despite the odds, the DM decided to act and asked Barry Leslie Kharmalki, the programme manager of Project Ahana (a national programme working towards preventing parent-to-child transmission), to formulate a plan to deal with the issue. Thus, the project “Finding the Missing Link” was launched in September with a four-member team – with three tracers and Barry as project manager.
It took the team three months to detect the infected ones; however 27 of them had already passed away. A group of 160 people were brought back to treatment but the remaining ones continued to show resistance. “During an interaction with the representatives of Meghalaya State AIDS Control Society (MSACS), Meghalaya State Network of Positive People and Ahana, we learnt East Jaintia Hills district has one of the highest incidences of HIV. We also learnt many of them were not taking treatment,” Baranwal told this newspaper.
He immediately held discussions with the officials to prevent the “ticking time bomb” from exploding.
“We appointed tracers on honourarium basis. After training, they started visiting places and prepared a list of the infected ones who could be detected,” the DM says.
Some people were dead by then, others had migrated to other places and a few could not be traced because they gave wrong addresses.
“Although we started with 231 names, the figure of targeted LFUs rose to 252 by the end of the project. We managed to convince 160 people to undergo treatment. In some cases, it took multiple visits due to outright resistance. Under the project, we sponsor the first two visits of the LFU to the ART centre as most of them cannot afford to travel regularly. Still, there are around 30-35 more people who did not cooperate despite being persuaded several times,” Baranwal said.
Currently, the district has a ‘Linked ART centre’. The DM has written to the government to set up a proper centre.
“We feel we can overcome the resistance when we have a proper ART centre. We are trying to coordinate with MSACS and work with PHC, CHC doctors, ANM, ASHA workers to persuade those not cooperating with us,” Baranwal said.
Kharmalki, a social activist who has been suffering from HIV for the past 12 years, says he has met people who said they do not care about the disease as long as they are healthy. He pointed out that the tracers had to move heaven and earth to be able to detect the HIV-infected people who are not on the radar of the authorities.
“We faced a lot of challenges. 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,” Kharmalki says. “My mission is to tell such people that they can lead a healthy life like me by undergoing treatment for the disease,” he adds.