‘Self-Verified Adherence’ - A support system for PLHIV

In honor of Worlds AIDS Day, we wanted to write up about a project we're proud to work on with the public health program supporting people living with HIV (PLHIV).

Medicine for treating HIV has progressed greatly over the past years, and it is now absolutely possible for a person diagnosed with the virus to live a long and healthy life. Anti-Retro-Viral Therapy (ART), leads to the HIV virus being suppressed in the blood, by preventing it from multiplying and eventually from being transmitted. The most common version of this treatment is in the form of a pill to be taken every day. The last three words of the previous sentence cannot be overemphasized.

Doing anything on a daily basis is a challenge, and especially for large communities that have immense challenges. It is in this context that Everwell, along with like-minded partners working to support PLHIV communities, started an intervention called Self-verified Adherence (SVA) at select ART centers in India.

Self Verified Adherence (SVA, which is also a Sanskrit term for ‘self’) is a low-cost ICT based intervention that supports newly enrolled ART patients self-verify their adherence and enables staff to virtually support them. It is a mechanism that enables patients to communicate the consumption of their daily doses, and consequently allows staff to prioritize, intervene and counsel patients as needed. This timely intervention influences patient’s behaviour, positively affecting their immediate and long-term health.

How does it work? By adapting the 99DOTS technology (originally developed to empower self-monitoring and patient-centered care for adherence to anti-Tuberculosis medication) to an HIV setting, SVA allows patients to record their daily dose of medication through a basic mobile phone.

When a patient is initiated onto ART, he/she is given a toll-free number to which they place a free call everyday after taking their medication. If they haven’t called by a particular time, an automated SMS reminder is sent to them. If the patient still does not call before 11:59 pm, a notification is sent to the corresponding staff member at the ART centre the next morning, who then follows up with the patient. Every month, when the patient returns to receive free medication, they are given a new toll-free number. This is continued for the first six months of their ART treatment. The daily calling behavior of a patient is accessible to healthcare through a dashboard, to the healthcare workers, in the form of a calendar.

The goal for this intervention is NOT to enforce a burdensome monitoring tool on patients, who have the option to be a part of this initiative or to voluntarily stop the project - the goal is to provide PLHIV with a low-cost, low-burden way of engaging their healthcare provider daily, and received targeted, personalized counseling as they start their treatment. As patients on ARTs have to take the medication for life, the engagement model envisioned as part of SVA is meant as a scaffolding intervention at the beginning of treatment to support the daily habit of taking medication, and ensure patients newly on treatment get the best counseling and care.

In all the ART centers run by the National Aids Control Organization (NACO), patients receive free testing, consultation services, as well as medication. They are provided with medication for one month at a time, after which they return for a brief consultation and pick-up their medication for the next month. However, in between visits there is no formal way to engage patients and staff are not able to identify which patients may need more support until the next refill visit - occasionally, some people may not come back for their refill and it's much harder to engage patients at that point.

This intervention allows for healthcare workers and patients to better connect with each other, and for patients to receive valuable support on a daily basis. It helps with the early identification of irregular drug consumption behavior, which helps reduce the number of patients who end up defaulting, or letting go, of their treatment (LFU or MIS). MIS and LFUs among PLHIV is especially high in the first 6 months of treatment.

Currently the pilot is being run in 20 ART centres with 1800 patients enrolled on the program. It will soon be expanded to include an additional 3500 patients.

From our experience till date, it has been viewed as a valuable way to build the relationship between the patients and the healthcare staff - something that is invaluable for treating HIV. The staff at ART centers can now understand which ten or fifteen of the hundred patients they cater to simultaneously require extra counseling or support on a certain day. This timely support greatly impacts patients’ adherence to the medication, and their perception of the treatment itself.