A Discussion with Nicholas Makau, Program Manager, Lea Toto Program, Nairobi, Kenya
With: Nicholas Makau Berkley Center Profile
May 25, 2016
Background: As part of the Education and Social Justice fellowship project, undergraduate student Khaliyah Legette interviewed Nicholas Makau, the program manager of the Lea Toto program at Nyumbani Center in Nairobi, Kenya. In this interview, conducted in May 2016, Makau discusses the administration, challenges, and successes of the Lea Toto program for HIV positive children and young adults, which means “raising a child.”
What is your name and role at Nyumbani?
I’m Nicholas Makau, the program manager of the Lea Toto program.
What are your responsibilities as the program manager?
The key responsibility is the day-to-day oversight of how the activities are running, but before that I’m actually the key person in terms of designing the program, working around what is the implementation strategies that we are to be taking, and taking the lead in monitoring the day-to-day activities. When you talk about designing, every program has a cycle. We go through a cycle, like, for example, we start with young people, what they go through. They become adolescents, they pose a new challenge, and how are they going to counter the new challenge—what are the strategies and approach to that. Once they are adolescents, then they will then be young adults; they will need to go to the community and work with the people there. So, basically working along the program, trying to see how best do you overcome the challenges that people are coming across, and one of the things that we do since we work with the communities is actually that they understand what we are doing, and not assuming that we know what they are going through.
What does “Lea Toto” mean, and how was that name established?
Lea Toto is actually two shortened Swahili words: lea, which is short for kulea, which means "to raise" a child; toto is watoto, which means “a child.” So Lea Toto is "raising up a child.” Now, this name was brought in for a purpose when we came into the community back in 1998, to see how we could integrate within the community in a way they would identify with us. If you recall or if you’ve read the history of HIV in Kenya, in 1998 the stigma was quite high. And therefore to entice people in the community to embrace bringing up a child, we thought, "Let’s have a name that will really mean something to the locals," so that’s how the name was established.
What are some of the greatest challenges you face in your role?
Well, the greatest of all is first ensuring that the program is implemented according to the promise to the donors, because each donor will have his or her own requirement, and we promise to follow those tenets. For example, one of our key donors is USAID, and they have very stringent accounting systems, where we have to make sure every dollar we receive from them is properly used and taken care of. And not just used, but prudently used. For example, if you buy something, did you buy from the best priced seller possible?
The second one initially is that the staff that I work with are well-motivated. And, you know, when you are working with people who are facing a lot of burnout, it’s really hard for you to keep it moving. For example, working in the field of HIV, a few years ago we used to have a lot of fatalities in the communities; we used to have a lot of deaths. So they work so hard for a child to save their life, but then the child dies, and another one dies, and eventually they start losing it, you know? So keeping them knowing they’re doing a good job is not a very easy thing.
Stigma is also very challenging. We’ve worked with it, we don’t want it, but still it’s there. It keeps on mutating; that’s another challenge.
Living to the standards of the community is really, really hard. For example, we don’t serve the whole community. We serve a subset of the community of HIV-positive people, and some of them are poor. They are equally poor like their other neighbors but can’t understand: “Why are you supporting these other people and leaving us out?”
The other one is ensuring there is good adherence and monitoring along the way. For example, right now the government of Kenya is having us study “90-90-90” for HIV/AIDS. We test 90 percent of the population, we put 90 percent of those who tested positive in treatment, and ensure 90 percent of those people who are on treatment are suppressed. So basically, when we are doing the program we are saying: do we have 90 percent of our children in treatment? Yes, we do. Do we have 90 percent of those ones suppressed? And that’s becoming a real challenge. Because, you know, they are living with their families, and since they also want to live to the standards of what the country’s going towards, that’s what we are moving into. And to go towards 90 percent of the population being tested...right now my greatest challenge is to reach as many young children as possible.
What are some of the greatest successes?
Wow, I would say one of the greatest successes was seeing the program grow from 200 children to now over 10,000 kids we have supported. And we did have a period of time where a lot of things have happened. We have strengthened our nutritional system, so that HIV treatment and nutrition go together. Now we have a full-fledged department of nutrition. We also have strengthened our pharmacy department. You know, for proper administration of treatment, we need a good pharmacy for counseling and all that, so we have a pharmacy department. Our social services department is also strong. So each individual part of the program is strong.
But the other greatest success is the health of the children. I’ve seen kids grow healthier right from the beginning. I would say, way back in 2005 and 2006, we were losing close to 16 kids a month. We have seen since that—because in 2005 we initiated our first anti-retroviral treatment—we have seen that number go down to almost zero. Now months will go by without a single death, and when I say that, I mean HIV-related deaths, dying because of HIV complications, because people have other issues.
I will have you visit some of our adolescent programs, like if you choose to interview some of the young people, and you will be surprised because they look like any other normal child. You won’t be able to tell anything; some of them have accepted their status. So nowadays they don’t really feel stigmatized. If you have any issue with HIV, that’s your problem, not my problem—that’s how they take it. And I’m very happy to say they are now coming back to support their other colleagues, you know, to bring them up, and I’m seeing that as great input.
We have seen children grow from childhood to maturity, and that’s why right now we have the adolescent program, so that we can prepare them to go to the community and feel empowered to do something. I’m happy to say some of the young people I started with went through university; they are now working. One of them is a web designer. He does quite a good job. So when you see that, you feel good. Well, there are challenges, but there’s also fruits out of the work.
What is the connection between Lea Toto and Nyumbani Home?
The official name of the whole organization is Children of God Relief Institute. But Father [Angelo] D’Agostino started first with the Nyumbani Children’s Home, way back in the 1990s—it was terrible with HIV. Nobody knew what it was. Everybody was running away. And there would be kids who were abandoned at the hospital, on the streets. So he started something to rescue those children, and in the back of his mind he knew there was no way he was going to pull all of the kids into one unit, because that unit could also be stigmatized. After Nyumbani was established and we had the first number of kids being taken care of there, we went to the community, and the purpose of going to the community was to empower the local communities to be able to take care of their HIV positive people without stigmatizing them.
Because, when you have a chronic disease, in most cases you need the people around you to give you moral support. But when they stigmatize you, they push you so much to the wall. So, when you come to the Lea Toto program, there are four objectives I look into. One, I’m here to take care of HIV positive children, medically. Second, while I’m here to ensure they’re getting all the medical and all the other care services, we also need good nutrition. Good meals are locally available foods that they can access. The caregivers and the children are well-informed why they should take the drugs and why they should eat. And then three, which is very important, that they have what you call emotional support. We have a very strong counseling department, which is open anytime, that you can walk in and talk to our counselors with all the issues you are dealing with, and you are ensured of confidentiality.
And then, finally, is to do what we call organizational capacity building. We cannot just jump into a community and start working with them, you know? Besides having 104 staff, I have 140 community outreach workers, distributed all over Nairobi. So these are the roots of the program. They know what the program is doing, they tell the community what is happening and how they can benefit, and through them we are able to communicate with the community. And therefore, that is our pillar, to make sure the community is well-informed.
In what ways does Catholic faith play a role in the treatment of these children?
First of all, you know any general religion is out there to provide physical care, emotional, and spiritual care for the people. Just like the Bible says, you cannot live on bread alone. The ministers have always been good and preached the good news, but also attend to other people’s needs. And I think that’s what Father D’Agostino did. Although he did this completely outside the Church because it is an independent entity, we have seen quite a lot of religious support. Most of our team leaders are actually religious nuns like Sister Mary [Owens], and we have seen that commitment of the Catholic Church into missioning to other areas of human needs. Most of the schools in Africa were started by the Catholic Church, and most of the hospitals. The same spirit is going on with saying we aid people’s spiritual needs. What other needs do they have? And one of them is that the ministers speak to us about HIV, stigmatization, people being discriminated against. Sister Mary would always ask: "If Jesus was here today, would he discriminate against HIV-positive people?"
What is the children’s understanding of their condition?
It varies depending on their age. If you are 1 to 7 years old, you will have a rough idea that: “I’m not well. That’s why I’m taking drugs.” One, you don’t understand, two, you don’t understand, three, you don’t understand. Five years old, you start having questions. From 8 years old, we have what you call “life skills,” which starts addressing your life, your body, your experiences, and all that. But we don’t tell you until you are 13 years old what you have. Of course, they pick up from older kids: “We are here because of a disease.” So, we journey with them, and when we are journeying with them we are also journeying with their caregivers, or whoever is the parent at that point. And we prepare them for an eventual disclosure, because we don’t take it upon ourselves as a program to disclose to the children.
They are not our legal kids, so the kids belong to somebody. We help this person to one day wake up with the kids and say: “You know, you are in this situation.” And that is done while our counseling department is watching, and therefore once the disclosure is done, kids will react differently. If they are very negative about it, then we go back with another follow-up session. If they take it positively, then we can just continue with that. So I would say the kids who are 13 years and above know they are HIV positive.
The reactions are totally different. I am happy to say that those who are 16 years and above—I can assure you there are about 200 of them—piloted the adolescent program, and they took it positively. They are even now talking a lot about it. One of them is actually a writer, and she’s doing a book about her experience with HIV. They speak publicly about it. So some of them take it positively, and some of them attribute it to the work we’ve done. So I would say yes, we have a few cases of those who are having a negative attitude, but the good news is their colleagues are now picking at it and saying: “Why are you so negative?” I remember there is one who was actually refusing to take drugs, about 14 years old, and it was taken by one of his colleagues who said: “You know, we have been here together. We are moving on. Why are you going backwards?”
What is the most rewarding part of your position?
Seeing them grow. Seeing the kids who are now—there was this notion of kids with HIV that they would not grow beyond their fifth birthday. I feel we’ve proved people wrong.
What is one of the long term goals of Lea Toto? Do you hope one day there will be so few HIV/AIDS kids that it won’t be necessary?
Yes, that’s actually...literally, that’s our target. And that’s why when the government called for RI, that is, Rapid Initiative, to go and get as many children as possible, one of my desires is to reach as many babies as possible. Because out of 300 babies we have in the program who are exposed, only 10 percent are positive. The rest will be negative, only if the mother follows what we direct, because we refer them to government facilities to ensure they are doing what they are supposed to do, and when the child is born they give birth in the rightful places and the right conditions and all that. So with that, we are believing one day we will have an HIV-free generation where set programs will not be necessary. We’ll have a duration of time because, for example, if we were to stop today, we still have some work to do over the next few years to ensure that those who are positive are being supported. So that’s one of our goals.
The second goal is to work as much as possible to reduce stigma and discrimination. I would say, as a country we’ve done quite a lot with that, but we still have a problem, especially in some pockets of the country, some communities. And then, of course, there is a continuous campaign for people to accept HIV positive people and think of them positively. We do still have people questioning: “Am I safe here?”
I’m Nicholas Makau, the program manager of the Lea Toto program.
We have seen children grow from childhood to maturity, and that’s why right now we have the adolescent program, so that we can prepare them to go to the community and feel empowered to do something. I’m happy to say some of the young people I started with went through university; they are now working. One of them is a web designer. He does quite a good job. So when you see that, you feel good. Well, there are challenges, but there’s also fruits out of the work.
And then, finally, is to do what we call organizational capacity building. We cannot just jump into a community and start working with them, you know? Besides having 104 staff, I have 140 community outreach workers, distributed all over Nairobi. So these are the roots of the program. They know what the program is doing, they tell the community what is happening and how they can benefit, and through them we are able to communicate with the community. And therefore, that is our pillar, to make sure the community is well-informed.
They are not our legal kids, so the kids belong to somebody. We help this person to one day wake up with the kids and say: “You know, you are in this situation.” And that is done while our counseling department is watching, and therefore once the disclosure is done, kids will react differently. If they are very negative about it, then we go back with another follow-up session. If they take it positively, then we can just continue with that. So I would say the kids who are 13 years and above know they are HIV positive.
The reactions are totally different. I am happy to say that those who are 16 years and above—I can assure you there are about 200 of them—piloted the adolescent program, and they took it positively. They are even now talking a lot about it. One of them is actually a writer, and she’s doing a book about her experience with HIV. They speak publicly about it. So some of them take it positively, and some of them attribute it to the work we’ve done. So I would say yes, we have a few cases of those who are having a negative attitude, but the good news is their colleagues are now picking at it and saying: “Why are you so negative?” I remember there is one who was actually refusing to take drugs, about 14 years old, and it was taken by one of his colleagues who said: “You know, we have been here together. We are moving on. Why are you going backwards?”
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