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Empowering community systems to return clients to care

When Anita Nalule (not real name) tested positive for HIV, she was distraught. “I wondered if I could hang myself. I returned home and went to bed because my head was not working properly.”

It was a difficult and painful period for Anita and she took a long time to start taking the anti-retroviral treatment she was given as she battled with her acceptance of the diagnosis combined with a fear of taking medication. At the clinic after getting her diagnosis, Anita had put the drugs in her bag and left them. Eventually, Anita retrieved them and started her treatment course.

“It was a nightmare. The side effects from the medication were unbearable,” she says. Anita was vomiting, dizzy and had what she called “unbearable nausea”. She stopped taking the drugs and decided not to return to the ART clinic.

“My health deteriorated and I was later admitted to hospital. At this point, my CD4 count had reduced to below 250.” But even still, after getting discharged, she would not take the medication.

The hospital where Anita was initiated though is within the network of facilities in the Mubende region that are supported by the CDC-funded Accelerating HIV Epidemic Control project. This 5-year project is implemented by Mildmay Uganda in partnership with Program for Accessible health, Communication and Education (PACE).

When Anita had only made one encounter within a period of 6 months after her initiation on treatment, she was recorded at the facility as a lost-to-follow-up (LTFU) client. The list of these lost clients is generated and given to community resource persons under the project who in turn go into the communities, to follow up and find out what happened to the people who are not coming for treatment.

When the community owned resource person tracked Anita, he found when she was unwell. The two of them talked through her health and the importance of adhering to treatment. They discussed side effects of medication, their management and the possibility of changing treatment course. Anita is now back on treatment and adhering.

Many HIV-positive clients, like Anita, fail to adhere to their treatment for one reason or another, and often extra effort is required to return them to care. The project has worked to identify different ways to support clients who have been lost to the healthcare system. The Community System Strengthening model has community members referred to as community owned resource persons (CORPs) who track patients who have not been to the ART (and TB, for TB patients) clinic for at least 3 months. This is combined with e-referral systems that allow for reminder messaging and follow-up so that clients remember to go to the health facility for their appointments and refills whenever required.

With better adherence and retention of clients, there can be less AIDS-related deaths. To achieve the UNAIDS 95-95-95 goal, this project is making sure that for all those people that have been tested positive, there are immediately linked to ART and when they are linked, they are able to adhere to treatment. Community linkages can play a crucial role in making sure that Uganda reaches the 95-95-95 global goal.

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