ACT Founder’s Story
March 28, 2022
“When I die, I want to make sure my children will be taken care of and that I will have a proper burial.” When ACT started in 2002, before any treatment for HIV was available, this was the answer Andy and Bev Warren often got when they asked someone dying of HIV/AIDS what they needed most.
The Warren’s worked across the street from Black Lion hospital, the largest hospital in Addis Ababa (population of approximately 2.7 million people at that time), and Andy and Bev were daily stepping over people on the street dying of AIDS, hoping for care at the hospital. That was when Ethiopia ACT started, with a mission to serve those dying of AIDS, and that’s where this story begins.
The HIV/AIDS epidemic in Africa peaked in the early 2000s and apocalyptic predictions were being made about what was going to happen. Countries faced major population declines and some age groups were predicted to be almost wiped out. Ethiopia never had the percentages of people infected as some countries like South Africa, Kenya, and Uganda, but because Ethiopia has the second largest population in Africa, the raw numbers of people dying of AIDS were huge.
Andy and Bev founded Ethiopia ACT in 2002, and Andy has served as the Executive Director from its beginning. Their prior experience as missionaries for 18 years, in Kenya, Hungary and Ethiopia, prepared and equipped them for this next step. Arriving in Ethiopia in 1996 working as the project coordinator for SIM Ethiopia, one of the largest mission and developmental organizations in Ethiopia, God opened their hearts and passion for starting Ethiopia ACT. They felt God leading them and trusting Him in this new journey. Their vision was to serve the poorest of the poor, the “least of these,” in this community as the AIDS pandemic was in full force alongside all the suffering they witnessed each day.
One of the first things that drew Andy and Bev to respond to the HIV/AIDS epidemic raging around them was friends coming to ask for help with the children of relatives who had died of AIDS. These friends wanted to know if Andy and Bev could help them with things like arranging for an HIV test for the orphaned children. Extended families were nervous about bringing children, who might be HIV positive, into their homes.
At the same time, the most visible response to the AIDS pandemic was prevention education, what was known as ABC, abstinence, be faithful, and condoms. As Andy researched the impact of these interventions it became clear they weren’t making the impact expected or needed. Andy was keen to understand the research on, and results of, different HIV/AIDS interventions and the impact they could make on the people in Addis.
What else could be done in these years before treatment was available? As Andy and Bev researched what was being done in Addis Ababa, they found that almost no one was caring for the sick who were dying with AIDS. There was no HIV palliative care program or strategy in the country.
Andy and Bev met a father dying of AIDS, his wife was infected, and they had two young children. Bev and Andy asked, “How can we help, what do you need, what are your fears?” They responded, “When I die, I want to make sure my children will be taken care of and that I will have a proper burial.” They started ACT with this very first family.
ACT started with the focus of beginning the first HIV/AIDS care support program in Ethiopia. That’s where God was leading them. They talked with Ethiopian health officials and others to put together a plan. A key strategy developed around home visits to connect with people, sitting on their beds and asking question to understand all their needs, which included physical, emotional, and spiritual alongside practical ways to care for families.
Almost everyone, whether they were Christian or Muslim, wanted a decent burial and they wanted to know that their children would be taken care of once both parents died. Ethiopia ACT did not differentiate between religious groups. All were welcomed. This meant connecting children to extended family, preventing exploitation, keeping them in school, and providing good nutrition, to be cared for in the early days.
One of the most important steps in ACT’s development was the building of a team. Theodros Alemayehu, known as Teddy, joined in the first year as the Project Manager and he has been a key part of ACT’s success and impact. Teddy’s training as a nurse and social worker, and his experience as the head of social work at Black Lion Hospital, the main teaching and referral hospital in the country, gave him the perfect background to help lead and grow ACT.
In its first three years, ACT Grew to care for more than five hundred families in three communities in Addis Ababa. The staff visited them in their homes, made sure they had the medical care they needed, connected them with others like themselves, making sure their children stayed in school, and often arranging for proper burials when they died.
In 2004, Ethiopia approved ARV’s (antiretroviral therapy medication) for people diagnosed with AIDS. This meant patients needed education and tools to help them adhere correctly to their treatment, critical to survival and to reducing the spread of infection. ACT began training their patients and giving watches with alarms and weekly pillboxes to help patients take their medications on time and with the correct doses.
Four children in the project, who were born with HIV, became very ill and ACT decided to purchase ARVs to treat them. The challenge was getting the right medications at the right dose for each child. They contacted Dr. Joia Mukherjee, the Medical Director of Partners in Health, affiliated with Harvard University, and she worked out the correct prescription and doses, specifically tailored for each child. This was the first pediatric AIDS program developed in Ethiopia. Kids came to the office every morning with their mothers for their first dose of the day and their evening meds were measure into tiny Tupperware containers. Three of the children are adults. One graduate from university with a degree in accounting and the others are working to help support their families. Sadly, one struggled as a teenager and repeatedly stopped and restarted his treatment and eventually died. Helping their HIV positive children navigate treatment and transitioning to being adults has been a major focus for the staff.
ACT started with a handful of the adults served by the project, sorting their meds for them, and teaching how to take them correctly, and created the first treatment adherence strategy in Ethiopia. Ethiopia ACT was the only group supporting ARV treatment before PEPFAR funding started in Ethiopia in 2006 with large-scale distribution of ARVs in Addis Ababa. Before mass distribution started, ACT partnered with The World Health Organization (WHO) to pilot their treatment adherence materials and connect them with people WHO could train as HIV positive peer counselors. ACT became the leading organization in Ethiopia on treatment adherence, and the government quickly saw that ACT’s patients were healthier and more knowledgeable about their treatment and asked ACT to create protocols for treatment, and run treatment support for 13 HIV/AIDS treatment centers in Addis Ababa. ACT hired 70 new staff members; nurses, peer counselors, and data clerks. USAID funded this work for three years and ACT help support treatment for an average of 15,000 patients each year.
Since its beginning, ACT has kept the survival rate of HIV positive members of the project over 90% and between 95-98% of people in our program are still alive. ACT continues to track viral loads, and more than 90% of beneficiaries have undetectable viral loads.
Another change happened as people with HIV started treatment and grew healthy enough to return to work. ACT developed strategies to help families become self-supporting. Savings accounts, business skills training, and grants helped more than 80% of the more than 2,000 families that have been part of the project, move to being able to meet all their own basic needs of food, shelter, education and medical care.
In 2004, US medical teams began coming to Addis to conduct home visits, hold clinics, and provide a full range of medical care needed by all the Ethiopia ACT beneficiaries. Teams came from all over the US, with physicians, nurses, social workers, and operational teams that brought medications, saw hundreds of patients per week, and provided the care needed to come alongside each family and person in need. The medical teams helped build credibility and relationships, elevated ACT in the eyes of community, and our expanded outreach. Teams brought expertise, experience, knowledge, compassion for AIDS victims, and they helped fill the gap in medical care. Five to six teams come every year, with many team members coming every year
Dr. Doug Bruce from Yale, a physician with expertise in HIV treatment, came with an early team, and provided training for the ACT staff to help launch this treatment support program.
One of the largest impacts of medical teams has been spiritual. Team members demonstrate Christ’s love and together with the ACT staff have lots of opportunities to pray with patients and often share the Gospel.
Andy’s early goal was to improve the health of people dealing with AIDS and provide quality palliative care. His was determined to be different from other NGO’s and he identified several goals to focus on. Those were:
- Generosity – Because everyone is made in God’s image, we do our best to meet all the needs as we are able.
- Impact – All of ACT’s activities should make real impact on people’s health and lives.
- Metrics, like mortality and morbidity, should demonstrate the impact in the communities and the patients they care for.
- Families and Communities – ACT wants families and communities transformed.
As Ethiopia ACT grew over time, the geography also expanded to new areas of Addis. As the government worked to develop the city, the poorest people were pushed out to the edges of the city. One of ACT’s earliest expansions was into Suki Village, near the city’s dump.
ACT also expanded beyond HIV/AIDS care. While the focus remained on the very poorest and sickest, it grew to include families impacted with other illnesses, like tuberculosis and cancer. ACT also responded to crises in the community like cholera outbreaks and Covid-19.