CAG Success Story - Eben Esser
Eben Esser CAG has plenty of reason to celebrate
Namibia has made immense strides in combating the HIV epidemic in the country. It has almost reached the international UNAIDS 95-95-95 goals for 2010, were 95% of its HIV-positive people are tested and know their status, 95% of those tested positive are on anti-retroviral treatment (ART), and of those on treatment, 95% are virally suppressed, which means it is practically impossible for them to transmit the virus. Latest figures show that Namibia has reached a commendable 94-96-95. However, in any race, the last mile is the longest and the hardest, and the United States Agency for International Development (USAID) is committed to supporting Namibia in its effort to find the remaining few percent to close the last gap. Despite the many people now on lifesaving ART treatment, taking the medication properly every day is still a challenge and burden for many people in rural communities, and USAID is funding efforts to make HIV medication easily accessible for those living in remote areas.
Visits to the nearest health facility, which may be several kilometers away, to refill medication are costly and time consuming, and appointments can disrupt the vital work schedules of the household, such as livestock herding, planting, harvesting and processing of crops. For many rural people in Namibia, livestock and subsistence cultivation of millet is the primary source of income and food, so interruption of these tasks places a heavy burden on families. The Community Adherence Group (CAG) program works to alleviate this burden by enabling two members of a community to visit the clinic and pick up refill medication for those patients registered in the program, and bring and distribute the medication in the village. This reduces the cost of transportation for the families on ART, congestion at clinics, and strengthens the community support for these families.
This model is implemented in some areas by the government of Namibia, however, to bring this service to more people, USAID has partnered with Tonata, a grass roots Namibian Non-Government Organization (NGO) that maintains a Support Group Network for People Living with HIV (PLHIV), to screen, register and enroll rural community members into Community Adherence Groups (CAG) to organize their refills less strenuously and more efficiently. Although the success that Tonata and USAID have achieved with this program can be measured by viral load counts and numbers of refills of ART, the real value and impact of this program can be seen on the faces of its participants, and felt in the gathering of the CAGs to which they belong. Meetings begin with singing, dancing and prayer, and the group meeting is full of joy.
“As I stand in front of you here today, I am saying we are well-off! We are fulfilled,” says Ottilie of the Ebben-Esser Community Adherence Group. “The oshana next to our community is often flooded during the rainy seasons and one cannot cross it. At the same time, ART treatment requires that we go and collect our medication. You might have heard clinic staff complaining that some patients are failing to collect their ART. That was us. Now, we are well-off thanks to our CAG refill group. We don’t have to spend N$20.00 each on transport to the clinic anymore. We only make a contribution of N$2.00 from each member and one of our members collects and delivers our medication. Meaning, others can stay home doing their daily work. Most houses are nearby this meeting place, therefore we are well-off because we do not have to travel or walk long distances or stay long hours in congested queues at the clinic anymore.”
CAG members are overjoyed with the services they receive,
and encourage others to form or join CAGs
Mr. Hendrik shares the same sentiment: “We reap great benefits from being members of the Ebben-Esser CAG. We used to walk a long distance to collect our ARVs at the clinic. You could not do your work at home as usual. But now we are fine. Now I can just be at home, doing my work, while at the same time waiting for my medication to be delivered here in my community - for that I am very grateful. In addition, I would like to appeal to all men not to shy away but to join CAG refill groups. There is a lot of benefits for them.”
Ebben-Esser was founded as a PLHIV support group by a community member in 2007, before ART was accessible (or available?) in the region. The group organized itself and chose a tree in the village as a meeting point. From the onset, the group provided much needed emotional support to its members, encouraging them to make positive choices and persevere in the face of stigma and discrimination. At that time, deaths caused by HIV/AIDS were commonly attributed to witchcraft, and when the founder and chairperson’s husband passed away from AIDS related illnesses, she was accused of witchcraft and forced to leave the area. Despite this, the group continued to meet twice a month under the tree, and to this day its members are an invaluable support and resource to each other.
“Being a member of a CAG Group, we support and counsel each other, something that individuals who are not members of support groups would not experience. But here in our CAG, even if a member was mistreated at home, by the time he or she leaves this meeting place he or she would have already forgotten all those mistreatment. Here we leave our meeting place with peace of mind,” shares Ndesheetelwa, and Miriam adds: “Some of us are illiterate, but our members in the CAG assist us in reading our health passport for us, especially regarding appointments and follow-ups. I am therefore grateful to be a member of this group.”
Albertina shares her story: “I am grateful to the creation of CAG Refill Groups in our communities. Personally, I used to be isolated, just at home. The CAG members encouraged me to join and now I feel supported, and no longer alone.” Stigma is still a painful reality, as Laina recalls: “In the past, a nurse at the clinic would call out my name to collect my ARVs, but because there are people I would not want to see me collecting ARVs, I would just hide. But here we are all open with each other, and freely collect our refills. I tell you that there are people who collect their refills from far way [clinics] for fear of being spotted by their neighbors. I therefore encourage people to join CAG refill groups.” Expressions of gratitude resonate throughout the meeting and in the songs they sing. Each member has a story to tell about how the program has impacted them. “In the past, I would have sleepless nights just thinking about the next day’s journey to the clinic. It was a long and costly journey, there were long queues and other inconveniences. By the time I would return home, it would be very late, so that the next morning I would not be able to do my work. Now I am just doing my work at home and do not have to worry about the journey to the clinic anymore since the services are delivered to our meeting place.”
The community based distribution of ART is now part of Namibia’s treatment guidelines for the nation, but the program has yet to be completely implemented in the entire country. The program is reaching more and more families and communities, relieving the burden on patients and care providers. In a country where approximately one in eight people live with the HIV virus, and will require a lifetime of Anti-Retroviral Treatment to maintain their health and wellbeing, the improved access and dignity that this program provides to families yields immense dividends in the health, stability, and prosperity of families, communities, and the nation. So far, the program has enrolled 2,818 patients and is projected to reach 32,000 people by 2023. In the struggle to put an end to AIDS related deaths, USAID together with Tonata, is working to close the last mile.