20 Years Living with HIV and Still Going Strong: Esbon Makumi’s Story

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Esbon Makumi, a CHS-supported peer educator at Kangema Sub-District Hospital in Murang’a considers himself a conqueror, having lived with HIV for the last 20 years.

While it was difficult for him to accept his status in the beginning, Makumi has been living positively since he started medication in 2006. His vocation as a peer educator has given him gratification in knowing that he is creating impact in the community.

Makumi’s Story

Makumi first learnt of his HIV status in 1989.  This was shocking for Makumi who describes the period following the revelation as a ‘horrible’ time for him. His wife was HIV negative. They later separated and she took their three children with her. This served to further devastate Makumi and his health deteriorated over time considering that there was little knowledge on anti-retroviral therapy in the 90s and early 2000s. Only those with adequate cash could afford treatment, as it was not subsidised or as accessible as it is today.

Makumi had to battle all of life’s challenges on his own which often left him feeling destitute and abandoned, coupled by strained finances brought about by the frequent cost of treatment for opportunistic infections and work related issues due to regular absenteeism whenever he fell sick.

Makumi eventually lost his job in 2002 because he could not account for the time he spent away from work. The stigma afflicting people living with HIV at the time did not allow Makumi to disclose his status to his employer.

Makumi began anti-retroviral therapy in 2006 and was among the very first people to be enrolled onto treatment at Kangema Sub-District Hospital. Stigma was so rife that he had to use an alias when he first visited the clinic due to fear of being recognised as HIV positive.

Acceptance and Going Public

In 2007, Makumi decided to go public with his HIV status and use this to offer encouragement and hope for a full life with adherence to treatment to others living with HIV.  He acknowledges that this was certainly not an easy process and that disclosure took a lot of courage. Makumi had been selected to lead the Hospital’s first support group for people living with HIV and thought that he would not be a good leader without disclosing his status. He pondered, “Whom would I lead them as?”

In order to help people living with HIV, he had to identify himself as one of them through disclosure and this he says was how he eventually achieved his inner freedom. He later went public about his status to wider audiences and in different forums including during the World AIDS Day commemoration in 2008.

Making a Difference

Makumi appreciates the role that CHS has played in equipping peer educators like him with the right knowledge, training, financial support and materials to reach out to others in the community. Through support from CHS, peer educators are empowered to promote adherence at community level through psychosocial support groups, steering the treatment ‘buddying’ system, defaulter tracing, home visits, referrals and community mobilisation. They conduct outreach activities aimed at reducing stigma, increasing HIV treatment literacy, strengthening referral uptake and tracing patients who have defaulted on treatment.

Esbon MakumiAs a peer educator, Makumi considers himself an ambassador within the community and therefore strives to empower HIV positive individuals to live fulfilling lives. This is done through psychosocial support groups which bring together individuals with HIV in a common forum where they can interact with their peers, share their challenges, encourage each other and help one another in maintaining adherence.These groups are a source of hope for many and Makumi uses the groups to give trainings on HIV treatment, opportunistic infections such as TB, positive living, how to avoid transmission especially among pregnant women and discordant couples, fighting stigma, disclosure, income generation activities and care giving among others. These groups are good for accountability and he often does home visits to encourage members whenever they fail to make it to the facility for their medication.

A typical day for Makumi involves engaging HIV positive individuals at the community level, holding health talks including one-on-one conversations, home visits, delivering prevention with positives messages, escorting clients for check-up and various other duties at the hospital’s comprehensive care centre (CCC).

Four adult HIV support groups have been registered and through assistance from various NGOs, financial service organisations and well wishers, these groups have been able to start income generating activities including poultry farming, rabbit rearing and making of energy saving jikos (Jiko Kisasa). These activities play a significant role in promoting sustainability of the groups. Adherence among members in these groups is also very high.

Makumi appreciates the role played by financiers of income generating activities through NGOs and spiritual leaders who provide guidance to the affected persons.

Challenges of a Peer Educator

According to Makumi, psychosocial support groups are not easy to maintain because people often come in with expectations of financial benefit. If this fails, they pull out and thereby miss out on other benefits associated with such groups.

Different groups come with diverse challenges and these must be dealt with in a sensitive manner to bring out desired outcomes. Among discordant couples for example, psychological issues and reluctance among the discordant couples to participate in psychosocial groups are common. Adherence issues are common among adolescents and there is also the challenge of disclosure where caregivers face difficulties when they finally have to disclose HIV status to children living with HIV.

In addition, many of these caregivers are often elderly people and a proper understanding of dosages and effective follow up of the children may be difficult.

Alcoholism is also a major challenge as it highly affects adherence and the effectiveness of drugs. This is however being addressed by engaging religious leaders to address the issue, and the hospital also strives to give a common appointment date for these patients where they are given a health talk on alcoholism as they receive their medication.

Makumi often encounters desperate cases of families who cannot afford clinical fees such as lab tests besides their basic needs including food, clothing and shelter. They see him as their helper and source of hope but unfortunately, he cannot personally finance them but only offer advice on how to take care of themselves or of their relatives living with HIV.

Keeping Hope Alive

Makumi advises that being HIV positive is not a ticket to failure. He revisits how far he has come and how well he has embraced positive living.

“I waited to see if something good would come out of my life and it sure did. Now that medicine and services are freely and easily accessible, it is this coupled with hope and adherence to treatment, that people living with HIV can make it happen.”

In tandem with the vision ‘A world of healthy families through universal access to health interventions and services,’ CHS acknowledges that peer educators continue to play a great role in promoting adherence and reducing HIV transmission.

CHS currently supports 118 adult peer educators, 30 adolescent peer educators and 28 mentor mothers across Central Kenya.

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