Name: Lilian Langat
Occupation: HIV Analyst
Age at interview: 43
Country of residence: Kenya
Languages spoken: Kalenjin (vernacular), Swahili, English, French (basic)
Advice to other women: "To set some goals, reasonable goals, but nevertheless, set some fairly high goals that can be achieved. Then to invest in themselves, invest in reading, invest in family and friends. Just do your very best."
Today I have the honour of speaking to Lilian Langat, who works in Kenya as an HIV analyst. In this extremely important role, Lilian works tirelessly to help educate people about HIV and to lower the rates of transmission. Welcome, Lilian. It's an absolute honour to have you with me today. Could you please start by telling us a little bit about what you do?
Thank you, Victoria. In my current position I analyse and assess relevant political, social and economic trends that affect HIV prevention in my country in order to provide input into program formulation, implementation and assessments. Generally I work in HIV prevention area because there are lots of work being done under HIV. There’s treatment, and there’s prevention, and there's also structural support that is provided to people living with HIV. Mine is mainly prevention, so putting in place structures and programs that ensure that transmission is lowered.
How did you come to be in this role? Was it something you've always been interested in?
No, I think I actually ended up in the HIV field almost accidentally. When I finished school in 1999, I've been in this field for about 17 years now, I was just looking for a job and there was a new HIV research program that was being set up in my hometown, called Kericho in Kenya.
I decided to just pay a visit and talk to the manager there, ask them what they were doing, and told them that I was interested and I was literally taken just like that.
He told me they were just assembling a team to do HIV research. The research was about establishing the prevalence, which is the number of people who are infected with HIV, in a tea plantation. I just got involved. I started managing the program and we worked on it for about a month. Recruiting people and having them tested. It wasn't such an easy thing because at that time, 1999, there was no treatment being provided at that time. People would just test, and then they would be advised on nutrition and to take care of opportunistic infections, to make sure they see a doctor if they get sick, but there was no treatment available.
After that successful research, we recruited almost 1000 people. We continued with other research. It was basically just a research centre and we went on to do vaccine feasibility studies where we were trying to test people who were not sick to see whether Kericho would be a good site ... Whether we'd get good numbers first of all and whether people would be retained because vaccine studies take a long time. We did a three year cohort study just following up people to see how many were positive at the beginning and how many convert and how many stayed on that till the end. That took three years.
After that ... Within that period I also started studying. I had an undergraduate degree at the time, so I decided to do a graduate degree. I enrolled for a Master's program in public health with the London School of Hygiene and Tropical Medicine. It took me quite a while to finish it because I was working full time, I was married and had my first baby and then I had a second one, and took off some time to study. At the end of the study, I felt that I had qualified enough, I had enough experience and qualifications that I could do something other than just research.
Some job came by, I applied and I got a job as a program manager managing a program working with young people to prevent HIV again, and also with vulnerable women and these were women who engaged in sex work to earn a living. In another town outside Kericho and I thought I could use my skills and experience I had.
From the moment I got in, I found the work fulfilling, talking to people and seeing that the rates of infection were being brought down. I stayed on until today.
It sounds like such an extensive career but also very fulfilling. How have you found the management side of things? Do you enjoy the management role?
Yes, I enjoyed the management role because then you do have some room to provide direction, to steer the vision and also see how the program is being implemented, monitoring whether you're succeeding or not. If you're not succeeding, what lessons are being learned so that you do it differently. Being in a position to be able to make some decisions to influence the direction has been fulfilling.
From there also I went to a national program, which is primarily involved in policy making and mobilising resources for the HIV response in the country, so there again I was able to gain experience in actually working on policies from drafting, to seeing it passed, and implemented.
Wonderful. How do you find the policy work? Because I have spoken to people in the past and the opinion I have been given was that they thought policy work could be quite frustrating. Has it been rewarding for you working with policy?
Yes and no. It's been both. Having come from the field and seeing the bottlenecks to program implementation, it's fulfilling to come and be able to influence that process and ensure that policies are enacted that make programs work easier. But policy work in itself can be very lengthy. It can also be very protracted because you have to involve different stakeholders and people have different views, so it takes a very very long time to actually enact a policy. In that way, it is quite restricting. I think between the two, I actually prefer the program side of work because you come in contact with the beneficiaries, with the people. You hear the human stories of the impact that the program you're running or whatever is happening is having in their life. At the policy level there is impact but it is indirect so you lose a bit of that personal touch.
When you do have contact with people within the programs, how are you received in the community?
It has been well ... Of course in the beginning the programs in ... That was in the late 90s, 1999. There was still a lot of stigma associated with HIV infection. People who were infected were viewed as people who were immoral. It was difficult for people to know that I'm working there because the assumption would be that I'm also probably infected with the virus, but over time people could see the impact of the work that we were doing had. They began to respect us. I would be invited to speak to students in schools. I even gave talks in church about HIV.
So those listening or reading who do not reside in Kenya, I was wondering if you could tell us a bit about HIV in Kenya? For example, how serious the problem is, what the life expectancy is of people who have the disease?
Yes. It is a serious problem in Kenya. In fact, it was declared a national disaster in 1999. Since then, it hasn't been downgraded yet. It's still considered a national disaster. To date we have 1.5 million people, yeah 1 million, 517 thousand people living with HIV currently. We do an annual assessment (estimate) to see how many people get infected every year. In 2015, 7648 people got infected with HIV in Kenya. That is children, men, and women. The number of children was 6600 and the adults was 71,031. The biggest concern right now is out of this 71,000, 35,000, or slightly above 51% are young people aged 15 to 24. Then in that age group, again the women are more affected than the boys, about 11,000 are the young men and 23,000 are the young women. The problem is affecting the women more. The national prevalence is 6%. The women are 6.3% while the men the prevalence is 5.1%. It's still a big problem for us.
We do have treatment available and we have almost 900,000 people that are on treatment right now. The biggest challenge is that most of the support is coming from external sources, that is the donors. About 25% is domestic. In the event that that should be withdrawn, then there would be a lot of people possibly going without their treatment. All the gains that we have made over the years could easily be reversed.
In terms of life expectancy, I think mostly people live, now with treatment available people are living the normal life. I'm not 100% sure about life expectancy in Kenya but I think it's below the age of 60 currently.
Do people have equal access to the antivirals that are required or are they quite expensive?
They are expensive if one was to buy them personally but they're available through the government and the donor support. In all government or public facilities, there is access to treatment. Actually, not all because again, not at the level of a dispensary but at a higher level where most people could access, they are available and they are free at the point of the patient.
Well that's fantastic, at least that there is no cost for the patient. I didn't realise that.
Yeah. There's no cost except of course you know the transport to the facility, maybe getting a registration card but the drugs themselves, they don't pay. But there are other associated costs like checking the viral load, doing those lab tests and other assessments before one is started on treatment. I think there's been an initiative to ensure that that treatment is included ... There is a national insurance fund. There is initiative that is ongoing to see that it is included. If that happens, the majority of Kenyans would be able to afford this.
You touched on this a little bit earlier about the stigma associated with having HIV. I was wondering if you could go into a bit more details about that?
There is still stigma associated with having HIV right from when it became known, which was in the early to mid 80s, when I think the first case was known in 1984. Initially people didn't understand what it was all about. We thought at first that it would be airborne and we got to know it was not. Then it became that it was associated with immorality because the majority of the transmissions in Kenya and most of Africa is actually sexual transmission. It became associated with sex workers or prostitutes as some people will call them. Generally people with immoral behaviour. Then later on it was discovered that even children could be infected through their mothers so it was no longer just an issue of morality. Also people could get it through blood products, which were contaminated. Some communities even regarded it as a curse from God that there must be something that you did wrong to deserve getting infected.
It (the stigma) still hasn't been totally eliminated. There's still people who think that they cannot relate with people who are infected. They can't share a seat, they can't share utensils or cutlery with them, that they will get the infection from them, and such things.
It's really hard when the young people, again because those who were infected by their mothers either during pregnancy or breastfeeding, or during delivery, are now growing because of the treatments they are living longer and they are growing into young people, into adolescents and young people and they're on lifelong treatment. It becomes very difficult for them to take their drugs if they're in school because they don't want to disclose, otherwise they'll lose their friends. They'll be excluded from social functions or activities. The teachers may not look at them the same way. It becomes very difficult for them to adhere to their treatment. But there's some areas in Kenya where the prevalence is very high. There's an area in Kenya where it's as high as 25% so one in every 4 people will be infected. There, the stigma is almost zero but a national average is 45%, so it's still quite high.
I imagine it must be particularly difficult for children, especially not feeling that they can communicate about it. Are there any programs specifically for children to help them with that stigma?
Yes there are programs that have been initiated. There was a really big problem about 10 years ago and a lot of parents and caregivers passed away and left a lot of children. There have been orphans and vulnerable children programs that have been initiated to assist with accessing treatment, with nutrition, and even supporting them with education. They're still ongoing and those programs have been growing and maturing. Now the move is towards social protection. So having cash transferred to the families which have been affected. Specifically towards the support of the children and to ensure that young girls especially do not engage in activities that would make them vulnerable to HIV.
Then of course in school it is also part of the learning curriculum. There are components of HIV that have been included so that children become aware when they're still young but it is limited. That information is not comprehensive.
So you said that programs have been up and running for a while now. Have you seen improvements over the course of that time for the children? Do you feel that there is less stigma now? At least that they're able to handle it a bit better?
Yes, they are. There are even programs and networks of young people living with HIV that have been started. The young people themselves are conducting peer to peer education and building the capacity of their own age mates. There are now people who are able to come out in the open and talk on national TV, conduct interviews. Awareness levels are rising and that people can live with the virus as long as they're on treatment. They can live normal lives. They can go to school. They can realise their dreams. That is changing but as a country, it's not changing at the same pace. There's some areas where it's faster. Other areas are a little behind and stigma is still high.
What about children that are orphaned as a result of HIV? Are there programs in place to assist these children?
Yes, there are social protection programs. They are identified at the local level and there are some cash transfer programs where money is transferred every month. Being an African community, we don't have a lot of homes (orphanages or government funded housing). Most of the time if there's an issue within the family where the parents die or something, they're displaced, other family members would take up the responsibility and care for those children. There are some homes where orphans and vulnerable children are being cared for but majority have been incorporated into the extended family support system.
What about cultural or religious barriers? Are there barriers that prevent or make the education of HIV in the general community difficult to deliver? You were saying that in different areas there are different stigmas and different levels of concern. Do you have to adjust your programs depending on where you are?
There are still some barriers. Of course there's still myths and misconceptions about HIV infection. It's still largely associated with curses or having done something wrong, immorality. That becomes a barrier. Generally in our country talking about sex is almost taboo. We don't talk openly about sexual activities. So it becomes difficult for parents even to communicate to their children about HIV because it's almost intertwined. You can't talk about HIV infection without mentioning the sexual transmission, which is the biggest rate here in Kenya. Those communication barriers that a parent cannot sit and begin talking very comfortably with a child. In school we just talked about prevention but the policy within the school system is that you cannot talk about use of condoms to children. You cannot demonstrate. You cannot provide. The information that you can give is just about prevention, avoiding, abstaining and not any other option of prevention.
Most communities are quite religious or spiritual. Then we've had challenges with treatment because of faith healing where you would have a preacher coming and saying that I could pray and you can get healed. People abandon their treatment in order to be prayed for. Of course, I do believe. I'm a Christian. I believe in faith healing but we encourage people to continue even as they're being prayed for that they continue with treatment and go and confirm that actually the virus is no longer in their body before they can abandon treatment. A number of people have relapsed because they went to be prayed for and they stopped taking treatment.
So it sounds like you've been very respectful of people's religious beliefs but encouraging them also to seek medical attention. The two don't have to be mutually exclusive.
Yes. We do a lot of that. In fact, we've had programs targeting the faith communities and faith leaders so that they also understand. Sometimes it's due to lack of knowledge that some of these things happen. Educating them and creating an awareness to ensure that even their own congregants are able to access treatment, or a first step, be able to go for a test and get to know. In addition to providing pastoral support, that they also encourage them to seek medical care.
Concerning contraception, children aren't able to be taught about contraception in schools because I imagine it can conflict with religious beliefs? Is contraception readily available or easily accessible for people should they wish to use it?
Contraception is available but as a country we had issues of stock outs. Currently our contraception prevalence nationally is 56% but again there are variations across counties. We are divided it into 47 counties. Then there are some communities again, who do not believe in contraception. Contraception rate is also low. In our HIV program, one of the programs targeting preventing mother to child transmission, we call it prong 2, is preventing unplanned pregnancies and then that means obviously that you have to provide contraceptives to women. There's still women who would want to take contraceptives but those contraceptives are not available to them. Especially among the women living with HIV, there's still a proportion of them that cannot access contraceptives or they don't have enough information to make the right decision.
Moving on just a little bit now to more of the organisations that you've worked with. You mentioned it before that you have to collaborate with a lot of people. I imagine you talk not only with communities but with governments and NGOs. I was just wondering, is that difficult for you to do? Is that something that you had to work at?
Most programs have not had difficulties working with other people because the problem has been big. There's always been room for everyone in the field. Some can target children. Others target adolescents. Others target the adults, the women, the vulnerable women, or even the men. Lately we've had the national attention on the key populations: the sex workers, the MSM, the IDUs. The issue has been sometimes they are overlaps and duplications of work. Sometimes agreeing or saying this partner does this and the other partner does the other. There were challenges in the beginning where you would even find two partners have been funded by the same donor, and they're working in the same region, so you're basically doing almost the same thing, counting the same numbers and reporting them differently. Over time, that has been sorted out, we are at the level of providing the support, there’s based on mapping of who will do what, where.
But sometimes the challenges have been when you are developing a document or a policy, or a guideline where views could be different, the vision may be different so coming to an agreement, having a consensus on the direction that the country needs to go, which populations, and what interventions would have more effect than others, that takes time. There is a lot of give and take but eventually there is consensus that is built.
That's wonderful. Yeah, it's definitely easier for things to work when people are unified for a common cause.
Yes. I think we are fortunate that in our country, we do have policy documents that highlight, and frameworks that say between this year and this year, these are the key activities that we'll do. These are the goals that we want to work towards. These are the objectives that we want to realise so everybody has to operate within that framework. The government has been very strong on that front, developing documents, policies and guidelines that guide every partner that comes into the country.
You are obviously an expert in this field. I'm going to ask you a bit of a mythical question. I was just wondering if you had access to unlimited funds, what would your vision of these programs be to help prevent the spread of HIV?
I would focus on the adolescents and young people because that is where the biggest challenge is right now. They're the ones with the highest number of new infections. They're also the ones with the biggest problems with adhering to treatment. Of course issues of stigma are heaviest because it's a transitional age, especially the adolescents. They're still trying to find a footing in their life, to find who they are. Adding HIV worries to that, it becomes really difficult for them. I would put into place interventions that would build their capacity, increase their knowledge, and build their capacity to be able to make decisions that are good for their health and reduce vulnerabilities among the young women.
We still have an issue of inter-generational relationships where young girls have sexual relations with older men so they're not, the power relations there undermine them so they're not able to really be in control of the direction the relationship takes. They cannot choose to say whether they use protection or not. The man has both the financial power and also the fact that they're older. I would put in place interventions to target these young people, both boys and the girls, but especially the girls to reduce their vulnerability. An intervention like a school retention program to ensure that girls stay in school for as long as possible. It's also been shown by research that the longer a girl child stays in school, the later their sexual debut and the higher the chances of succeeding in life, generally. Not being infected by HIV.
I would also focus on the parents because parents still play a very big role. We know from research that children and adolescents are unlikely to engage in or initiate sex early if they receive information from their parents about sexuality and sex so I would want to empower the parents to be able to communicate clearly and to be there for their children, to support them.
Is there anything currently available for young girls who are at risk of going into these inter- generational relationships? Is it something the communities or organisations are aware of and are targeting? Or is that something that hasn't been dealt with as yet?
Community and of course the programs are aware of that because we have a lot of surveys that are conducted routinely. Programs have started doing something about it. We're mainly looking at the structure of interventions. These are programs that you look at the systems and the policies in place to see where the gaps are. Why are the girls resorting to inter-generational sex? What are the underlying causes of that? Of course one of them is poverty, lack of education. They don't complete school or drop out because the parents couldn't afford. Yes, programs are being initiated on having actual money transferred. Vulnerable girls are identified and money is transferred to their home to support the parents, and at least ensure that at least they get their basic needs. We've had stories of even girls engaging in sex just to get money to buy a sanitary towel. Or using really unhygienic products so when a man offers to give them money, they'll say yes in exchange for sex. There are programs now that have been initiated now to support the girls, to support families within certain age cohort of girls.
I'm wondering what your experience has been working as a woman in the field. Obviously you're an expert. You've got years of experience behind you. Has your expertise been respected within your workplace and the organisations you've worked with? Has that been a positive experience for you?
It has been positive. I had opportunities to make presentations, talk to people, partner with people on certain initiatives and participate at the national level in the technical working groups where we discuss issues of prevention and developing of documents. I would say, yes, it has been recognised. We're fortunate that in Kenya, we have a very mature program. We have several experts in the field and we work together to bring each other up. There are areas of support that I would have more knowledge. There are areas that others have. We're always constantly planning and sharing lessons with each other.
That sounds like the perfect environment. What about as a mother? Do you have a work-life balance sorted out quite well?
I think to some extent. Yes, I am a mother of four. My oldest in 16 years and she's in high school, third year of high school. Our high school runs for four years so she has one more year and presently she was home on midterm. She just mentioned that she felt I have been available for them because we do discuss a number of things. It's been possible. Whenever I've been making deliberate decisions not to travel for extended periods of time, or to cut out travel when one of them is going through something like they're about to sit for a national exam or they're going through a rough period. When they were young I would either travel with them. Go with them whenever. If I'm going to be away for a week, I'd take a nanny with me and the babies. I think they've been able to sort that out. Wherever I am, we always communicate, literally on a daily basis if I'm out of the country or away from town where they are. Of course my husband has been there and has been very supportive throughout this growth period, yeah.
That's wonderful to hear. I particularly love that even when you don't necessarily see them, you communicate every day. I think that's so important. It's so hard for women to balance home life and their work life so it's wonderful to hear that you've managed to do that.
Yeah. Of course it's never easy but once you get your priorities right, you just go. Having a supportive environment ... I think again the fortunate thing I have is extended family. There would always be one or two people who would be able to step in if I really have to go somewhere, which I think may not be available for women in the developed world but here we still have that extended family support that you can fall back on. Sometimes you have to forego some opportunities that come. For example, I will not take up an international position until my youngest is in high school or going on to university so that I'm really there during the critical years of their lives. Some things I have to say no to - I will not take this up or I will not do this.
Rightly so, but also it sounds like while you may have said no, you really could just be postponing it because those opportunities may present themselves again in the future, particularly with your experience.
Yes. True. That's the truth, yeah. I do believe that there's time for everything. So whether it comes earlier or later, it doesn't really matter, it may happen, yes.
Your job is extremely important and you've said you actually speak with people in the community and I imagine it must be high stress for you at times. You must deal with some quite emotional situations, working with people who have HIV or at risk. I was wondering how you cope with that stress and that pressure?
I do have a very supportive family, both the nuclear and the extended so sometimes when there's too much stress, there's the family to talk to, to discuss issues, to go back to. There's also colleagues within the work place when it becomes difficult, you can debrief with someone and they would be available to listen and provide whatever support is needed. I also do a lot of reading. I do read but I ensure I read at least a book every month. Sometimes I maybe read two. I'm a Christian so I go to church. Praying also helps and listening to Christian music has been helpful. Also seeing the progress that you are making.
Initially it was very frustrating when I started out in 1999. A number of people I actually saw dying because there was no treatment. When it came it was only available to a few people so that was very, very frustrating to just see people and there isn't much that you can do. Now looking at ... Talking ... You can talk to somebody and encourage them to access treatment. You encourage them through adherence. You see their health improving and them picking up and proceeding with life. It's so fulfilling, being able to see beyond just the infection, and seeing the bigger picture that this person is living and they are having a fairly good quality of life. That is also encouraging. But of course, I'm working with the key populations, it's still a stigmatised community in Kenya. It's always difficult. Sometimes people wonder, "Are you still a Christian? How can you be working with these people?" That sometimes does bring me down.
I can imagine. And how do conversations with those people who challenge your faith and your Christianity go? Do you defend yourself or do you just walk away and let it go?
No. I haven't defended myself. Everything I've done, the biggest battle I've had to do is between me and God and really being very clear in my mind that I know what I'm doing. I feel that I haven't fallen off. I still just do not address it. I maintain my faith. Maybe you could say I've ignored it to a large extent.
Thank you for sharing that. I think that's just very valuable for other women to hear who may be going through stressful situations or may have people looking down on what they do. I think it helps for women to hear how others cope with those situations. I was wondering what is the most difficult aspect of your job? You have mentioned some difficult things. Do you think it's a combination of factors?
Yeah I think it is. Okay, for now, I wouldn't say that there are many difficulties right now. I think one of the things right now is because now I'm working at the policy level, again not having that direct communication and touch with the people, that sometimes is a bit difficult because you're not able to see the results immediately because again, policies take time to show effect. You cannot enact a policy one day and then the following day, get immediate results. That's time period that elapses, you're not able to see what exactly you're achieving unlike before when someone comes into a facility, they get their services, they go back happy.
What do you enjoy most about your work?
I enjoy the learning. I think the HIV field, as I said again, it's really matured in Kenya. There are lots of things that are happening. There are new things every day. There are new researchers, new products, new ways of doing interventions. The continuous ability to update oneself is fulfilling and also the fact that what we are doing is having a meaningful impact in the lives of people. There was a time in Kenya when the HIV prevalence was 14% and now, it is 6% so seeing that has been progress. We even had the new infections being 100,000 in 2012 now it is below 100,000 so there is progress being made. Seeing that lives are being changed. Lives are being saved. It is fulfilling.
It sounds like such a fulfilling job and such an important and rewarding job. Particularly when you cite those numbers and you can see those declines, I think that's really wonderful and must be very satisfying for you.
Yes. Of course it's the effort of very many people but seeing that collective effort having impact, is fulfilling and knowing that there was a small role that I played.
What are you most proud of? Would you say seeing those numbers go down or is there something more personal to you that you're proud of within your role?
That's a difficult question. Yes, I would say seeing those numbers change and really seeing the quality of life of people living with HIV improving. Before when I started out, it was really dire. It was almost hopeless. People would just deteriorate and die but now seeing that it is almost ... You could say manageable ... an infection that can be managed and people live their lives fully.
I'm also proud that in the process I was able to study and get an extra degree. That's at a personal level. Yeah, I think that's about it.
That is a lot to be proud of. As I said earlier, the point of this (Fierce Women’s Collective) is for you to stand up and be proud of your achievements so congratulations on that. It's no easy feat. You have achieved so much in your career. Now this is a question I ask everybody... how do you encourage confidence in yourself? Because confidence is something that can be lacking in a lot of women I think it's really important to talk about. I was wondering how you have managed to foster confidence in your abilities?
I think believing in what I'm doing, that it's making a real difference. It's making a real change in people's lives. As I said, I'm a Christian. Knowing that, I'm here for a purpose. I'm not just here aimlessly. The work that I do, I do believe is making an impact and seeing a young girl being able to access treatment, seeing a mother being able to go to a clinic and get to know that she's fine and had a healthy baby. Knowing that there are lives being changed and lives being improved because of that, it keeps my confidence growing that there is something. Also, seeing young people around me wanting to do what I do, even people choosing to do the courses that I've done, and my own children saying that they are proud of me, my husband saying the same. It helps to boost my confidence.
I think that's lovely that your children and your husband have voiced that they're proud of you. Not that they wouldn't be but it's nice that they've voiced that as well. That would boost anyone's confidence. Thank you so much Lilian. I do have one final question for you. I always end on this question. That is, what would your advice be to another woman who is interested in pursuing a similar goal to you?
I would say to first of course, acquire the necessary skills and qualifications to do the job, to really understand what it is, and to have faith in the ability to make a difference in people's lives. To set some goals, reasonable goals, but nevertheless, set some fairly high goals that can be achieved. Then to invest in themselves, invest in reading, invest in family and friends. Just do your very best. I keep telling my children, I am not expecting beyond their abilities. Just do what you can and then you let the rest to God. It is possible just to read widely and make yourself familiar with the subject. As I said about setting the goals to be realistic because you can come in thinking you're going to make these numbers disappear. You're going to eliminate the stigma but it doesn't happen as fast so you need to be realistic and you need to have people in your life that you can go back to when you're not feeling very strong about yourself.
I think that's wonderful advice. Thank you, Lilian. It's been an absolute honour speaking with you. You're an incredible woman who has achieved so much, and who is still having such a positive impact on the world. Congratulations and thank you.
Thank you too.