Lessons Learned in the War Against HIV/AIDS in Kenya
By Alfred K. Neumann; Leila R. Ehsani, Research Assistant
Published: Tuesday, February 17, 2004
With Good Wishes From Kenya to Hunan Province, P.R. of China
September 5 2003
Background to These Notes
Dr. Alfred Neumann and other members of Health for Humanity (HH) have been working in Yue Yang Prefecture of Hunan Province for approximately the last four years. For the last two years HH has been asked by Yue Yang officials to focus primarily on HIV prevention and control. At the end of the last HH team visit to Yue Yang in March 2003, they were requested to come to Changsha to lecture and meet with Mr. Chen Dong Cai, Deputy Director of International Cooperation Department of the Health Bureau. He requested HH to expand its HIV/AIDS prevention and control activities to other parts of Hunan Province in consultation and cooperation with appropriate Hunan professionals. This led to consultation via email with Dr. Chen Xi, Chief of the AIDS/STI Control Division of Hunan Provincial CDC and member of the National AIDS/STI Committee. It was agreed that Dr. Neumann would come to Changsha on September 14 2003 for ten days. During that time, Dr. Chen Xi will share more of their experiences with HIV in Hunan with Dr. Neumann and he will share knowledge about best practices in other areas. The purpose of this is to enable Hunan HIV prevention experts to decide what might be useful to them and thereby benefit from the experience of others.
Dr. Neumann had the opportunity to go to Kenya for three weeks in August 2003, funded in part by a grant from the UCLA Globalization Research Center - Africa. Thanks are expressed to the Director, Professor Edmond Keller. Thanks are also expressed for Professor Nimrod Bwibo’s invaluable role in making appointments in Kenya, accompanying the authors on some to some of the meetings and playing a very much-appreciated facilitating role. Kenya’s experience with HIV/AIDS is important because its government, only as recently as November 1999, officially acknowledged the existence of a very serious problem with respect to HIV/AIDS and ordered a vigorous full-scale prevention and control effort be implemented. In order to establish an effective program as quickly as possible, very capable Kenyans were recruited and consultants brought in especially from Uganda which had officially recognized its HIV/AIDS problem years earlier and implemented a very effective prevention and control program.
The methodology used to learn about the best practices of HIV prevention and control in Kenya consisted of interviews and of obtaining existing reports and NGO brochures. Persons interviewed included high officials in the National AIDS Control Council of the Office of the President, other senior government officials, a key WHO official, Non Governmental Organizations (NGO) staff, private sector experts, and individuals. Grass-roots sites, including those serving the very poor and special populations, were also visited. In addition to extensive notes, hundreds of pages of materials were obtained including the Kenya National HIV/AIDS Strategic Plan.
This document will be kept short. It will present what Kenyans felt were very important components and activities in their fight against HIV/AIDS. These are not meant as suggestions to Hunan. It is up to Hunan authorities to decide what might be useful to them. Dr. Neumann in his September visit to Hunan will bring notes and other materials obtained in Kenya, and is prepared to share information from this visit and information he has about other countries as may be requested by Hunan authorities.
Kenya: Most Successful Efforts in Its War Against HIV/AIDS
- National Emergency Declared. A clear statement was made by the President of the country on 25th November 1999 addressing Members of Parliament, Ministers, and other authorities declaring AIDS a national disaster. He stated:
“AIDS is not just a serious threat to our social and economic development, it is a real threat to our very existence…AIDS has reduced many families to the status of beggars…No family in Kenya remains untouched by the suffering and death caused by AIDS…The real solution of the spread of AIDS lies with each and everyone of us.”
This was followed by an open discussion and debate of the problem at all levels of government involving the public, beginning at the village level. This discussion was very important. It brought the problem out in the open to be openly and frankly discussed. It also made it clear that it was everyone’s problem and everyone had to share in the solution. This open discussion and debate also resulted in a great reduction of denial, discrimination, and stigmatization at all levels of society. Its offering of solutions from a broad range of people helped the masses to take ownership of the problem beginning at the village level up to the central government.
This led to an Executive Order to wage all out war against HIV/AIDS at every level of society. A National AIDS Control Council (NACC) was organized as well as Control Committees at every administrative level of the country right down to the village. There is a clear political will at all levels of society to work to prevent and control HIV/AIDS. This statement of political will is frequently reaffirmed.
- Decentralization. All interviewed agreed that the success of the program is dependent upon decentralization. In addition, most of the work, responsibility, and costs of care are carried by the community and the family. This also means that officials at every level of government must come to understand the importance of this war and accept the need to act, including providing supplemental money.
- Horizontal Integration Instead of Vertical Integration. Another finding was that the programs are most successful if there is a horizontal integration of services at all levels of government, but especially at the community level. In the Kenyan experience, a vertical program is not practical. It must be clear that AIDS is not just a health problem; it is much more. All agencies including economic development, education, industrial development, agriculture, water, health, etc. must cooperate and work together. Each must contribute to the battle. For example, at the community level, workers from the above-mentioned organizations all reinforce the message with regard to HIV/AIDS prevention and control. They also compare their experience and share their observations of progress and problems with the appropriate AIDS control committees and in some cases, with local NGOs. This is an illustration of how the principle of HIV/AIDS prevention and control is everyone’s concern, including the personnel of all ministries.
- Awareness®Behavior Change®Care and Support. Another important early finding of the Kenyan agencies was that it was not enough to simply create awareness, educate people about the facts of how one becomes infected with HIV and clarify misconceptions. At the same time, one had to undertake behavior change efforts. Also, Kenya had to organize from the beginning of the program, care and support activities, including counseling and nutrition support, to help the “infected” and “affected.” The latter includes families, workers, coworkers, friends, and most important, orphans and vulnerable children. In summary, the sequence which must be undertaken almost simultaneously, is raising awareness through education®behavior change activities®and organization of care and support activities.
- Sentinel testing and Voluntary Counseling and Testing (VCT) centers. One of the immediate problems of planners in 1999 was that they really did not have good data regarding prevalence of HIV positive cases and incidence of new cases. The first step was to implement a system of sentinel testing. This involved selecting antenatal clinics strategically placed around the country, where blood was routinely drawn from pregnant women. A portion of the blood sample was sent for testing through a totally anonymous mechanism, so that results could not be traced back to the mother from whom the blood sample was obtained. This gave the authorities a crude figure of the prevalence of HIV positive pregnant women attending clinics in various parts of Kenya. It also enabled them to record changes in prevalence over time. It is not a perfect mechanism, but it is better than nothing. In parallel to this, a system of VCTs was established where a great emphasis was put on confidentiality. The VCT services are available to all. People can either drop in or book appointments. The major purpose of these centers is to provide free HIV testing for anyone desiring it as well as information about HIV. Considered very important is counseling before and after the testing. If the person is negative, the post test counseling focuses on the importance of maintaining a lifestyle to ensure that one will remain negative. If the person is positive, the counseling focuses on how to maintain good health for as long as possible, how to keep a positive outlook on life, and how to avoid infecting others. The number of individuals coming to these centers and the number of centers is steadily growing. This is another measure of prevalence. This prevalence information is very helpful to Kenyan planners.
- Blood Supply. Measures were taken to ensure safety of the blood supply and blood donations were strictly controlled. Central government money helps pay for this.
Institutional Framework for the Kenya National AIDS Control Program
Under the Office of the President, a National AIDS Control Council (NACC) was established. Membership in this Council includes representatives of all government ministries, the private sector, NGOs, religious leaders, educators, medical authorities, and the Federation of Kenya Employers. Under one line at the administrative or management level, there are AIDS Control Committees (ACC) at every level of government, including the provincial, district, and constituency level. The purpose of the ACCs is to coordinate HIV/AIDS activities at each level of government. They work particularly closely with the members of Parliament in their respective districts.
AIDS Control Units (ACUs) and Private Sector. In parallel to the ACCs, there are ACUs in each government ministry. Their purpose is to stimulate and coordinate HIV/AIDS education and control activities in all ministries at every level of government. It is via the ACUs that the activities of NGOs and the private sector are also coordinated. A very important feature of this is that a central government HIV/AIDS line item budget has been established for every ministry. Initially it was small, but is growing. A major source of money is external, including a successful application for a large five-year grant from the Global Fund for AIDS, which includes a TB and Malaria control component. This is administered by the NACC. Another important feature of the work of this council is program evaluation, audit and accountability of all funds, so as to reduce and preferably eliminate corruption.
Some of the interventions that the NACC is emphasizing include:
1. Prevention of heterosexual transmission. This includes promoting abstinence and faithfulness; reduction in the number of sexual partners including non-use of commercial sex workers; encouraging delay in the onset of sexual activity among adolescents; and promoting the correct use and consistent availability of condoms. As part of heterosexual transmission and prevention, voluntary counseling and testing is stressed.
2. Controlling other sexually transmitted diseases. There are free STI clinics at all government hospitals and clinics. Research has shown that a reduction in the number of STI cases leads to a reduction in HIV infection incidence.
3. Adolescents and youth. 60% of new HIV cases are in the 15-25 year old group. Therefore, a high priority was placed on working with this age group, both those in school and those out of school.
4. Prevention of mother-to-child transmission (PMCT).
5. Making available antiretroviral therapy as funds permit.
6. Encouragement of development of combined interventions. This means using more than one control approach simultaneously with all activities coordinated. One specific example of this is coordinated community-based programs including improved STD diagnosis and treatment with free drugs and condom use promotion and peer group education.
7. Peer group education. By peer group education, it is meant people recruited from a group with special training as volunteers to focus on their co-workers and friends. Examples include teenagers, truck-drivers, commercial sex workers, police, factory workers and military.
8. School-based education. Starting in primary school, a program that is age appropriate for HIV prevention education has been instituted in the schools through the Ministry of Education. For example, in math classes, a part of the time, the children will work with HIV/AIDS statistics so that they get a feel for the extent of the problem. In a human biology course, they may receive information on how the virus affects the immune system and thereby leaves the victim vulnerable to other infections. Materials either have been developed or are in the process of being developed for all ages, beginning in primary 1. At the high school level, a series of three books entitled “Bloom or Doom” have been developed.
9. Positive attitude promotion under all circumstances. Educate people to appreciate that HIV positive persons can have many productive and happy years. In order to help achieve this, they must maintain a good diet, good general health, avoid high-risk behaviors that may give them STDs, and keep actively involved in daily activities. In addition, they must maintain an optimistic, positive attitude. The same advice applies to those that develop AIDS. Those who have AIDS and have followed this advice live longer and lead happier lives than those who do not.
10. Counseling services. The HIV/AIDS epidemic is causing a great deal of anxiety in the entire population. Chronic high stress appears to be associated with increased morbidity and mortality. There is a great need for counseling services for the infected and the affected, which is almost everybody else. The government is training many counselors and decentralizing the training so that it is culturally appropriate to the various regions of the country. The lowest level of counselor training is three weeks. Supervisors have more training. In addition, training of psychologists is being expanded. This is a three and a half year program. Similarly, it was found valuable to give community level health and care workers counseling training so that they too can better assist the infected and affected.
11. Evaluation and review. Each year, a two-day meeting of principal parties, including top-level government figures, council members, and many other stakeholders (parties interested in and concerned about HIV/AIDS) is held. The purpose of this meeting is to evaluate progress of the HIV/AIDS prevention and control program and to identify strengths and weaknesses. This then leads to further improvements in the program.
12. High-risk groups. These include security forces, commercial sex workers and truck-drivers, populations residing in special geographic locations such as slums and border towns, and mobile populations.
13. Media. The media at all levels play a vitally important role in the national education program to prevent and control HIV/AIDS. All forms of media are important, but in rural Kenya, radio is the most important. Villages may not have a television, may not receive newspapers, but every family has at least an inexpensive little transistor radio, and it is almost a universal custom to listen to the news several times a day. The communications effort is greatly assisted by the recruitment of prominent public figures including athletes, musicians, actors and actresses, and popular political figures to give talks and interact with the public. These individuals are particularly effective when one who is infected freely talks to the people about his condition and urges life-style changes to reduce high-risk behavior. It is desirable to modify the message and the way it is presented so that people continue to listen. It is best when one can locally coordinate a public message with interactive public discussion.
14. Grant writing. The need for all organizations to develop grant proposal writing expertise was stressed. This is because few funding agencies including the government of Kenya will fund programs without a satisfactory grant proposal. A format for grant proposals has been developed by the NACC, which has been widely distributed.
Special Case Studies Offering Hope
- Efforts targeting adolescents and youth up until age 25.
It has been found difficult to develop a communication strategy leading to behavior change for youth. Lessons learned include the fact that youth must internalize information and develop ownership of it. By this is meant that the lesson must become theirs, as something they want to do in contrast to reacting to what somebody else tells them to do. They must be helped to acquire knowledge, which leads to the desire to change, which then leads to actual change. Experience has also shown that the best way to reach youth is via communications that are highly interactive, which provide youth with the opportunity to ask questions, to give their opinions and to challenge the speaker.
It has also been found that in many cases, if one can increase the sense of self-worth of the youth, to make them feel good about themselves, they will be more likely to take ownership of wise suggestions designed to reduce high-risk behaviors. Methods that have been successfully used to help youth increase their sense of self-worth are involvement in sports, and in the arts, including music, painting, and craftwork. Another technique used to promote interactive communications involves role-playing, mural painting (a kind of wall painting), and essay writing. For example: actors go into schools and present a complex situation involving an older male student who does a favor for a younger female student, expecting that she will reward him in a way that involves high-risk sexual behavior. He tells her to meet him after school hours in a school storeroom. Students role-play (act this out) and the actors freeze the skit at the moment when the girl needs to make the critical decision. At this point, actors ask the audience to suggest different solutions, reflecting different types of behavior. After a participatory discussion, the students decide on a few safe solutions, such as the girl deciding to take a friend with her to the storeroom, or to not meet the male student at all. Then the muralists (artist) sketch these options out on the wall. Over the next two weeks, the students cooperate in painting the mural. In practice, they discuss the issues raised by the mural and the previous presentation. Following the completion of the mural there is an essay-writing competition, where the students submit essays on a range of subjects connected to the mural and associated discussions. Through this kind of participatory discussion and activity, including drama, arts, and creative writing, young people are stimulated to consider and implement safe responses to potentially dangerous situations. A variation of application of the arts to educate and change behavior is presented in the next case study.
2. Increasing health and awareness through the use of puppets.
This is a program based in Nairobi, but which has been decentralized to many regions of Kenya. The introductory phase involves the design and construction of puppets, which reflect symbols or figures recognized in the culture of various regions. A show is put on at an appointed time and the puppets tell a story. A human figure at the side tells the audience that at their signal, he will interrupt the puppets so that the audience can direct questions and comments to the puppets. It often happens that the audience will talk to the puppets, and tell the puppets things that they would be shy to tell a human face to face. Another variant of this is that the puppet show will be deliberately stopped at certain points and then the human figure standing at one side will ask the audience to suggest solutions to a problem raised by the puppets, which will then be implemented by the puppets. The audience is then asked to further comment.
The central organization trains the puppeteers, provides the material for the puppets and the sound equipment and trains a local group. This is all decentralized. The puppeteers (puppet masters) must know the local dialect, culture, and customs. This is so popular that the puppet shows presenting a variety of topics, in addition to their valuable HIV prevention educational role, also become a source of income for the puppeteers. The principle here is to use an art form that is known, understood, and appreciated in the culture. It could also take other forms.
3. Associations For People Living With AIDS.
There are many associations for people living with HIV/AIDS. Some are only for women, others are primarily for men, while some are for both sexes. They typically begin with a small group of people who are HIV positive coming together to provide support for each other. The first step is typically to provide counseling. The organizations then typically expand to add services that will improve the quality of the lives of its members and to help give them hope for the future. As the organization grows, members will often include family and friends of the HIV positive, but who are negative. They are the “affected.”
The groups often add classes including nutritional guidance and how to maintain good health. They will also include instruction in avoiding high-risk behavior so that their members do not get STDs. If they have STDs, they are referred to free clinics for prompt treatment. Similarly, they are instructed on how to prevent TB, to recognize early signs of TB, and to overcome denial and seek prompt medical assistance for TB. The organizations will also invite medical personnel and herbalists to talk to the members about good health promotion practices. Some programs establish feeding programs, where members can get at least one good meal a day. Some will also provide meals for children of members in order to lighten the load on their parents. One agency has developed a concentrated, highly nutritious, low cost porridge called power porridge and instructions on how to make it at home. Others provide for members who cannot leave home and do not have much money. A food basket of staples (essential foods) sufficient for up to two weeks is also provided where needed. Home visitors deliver these food baskets. Where necessary, the home visitors will prepare food for the family, wash the patient, change the bed linens, do the laundry, and clean the house. One of the purposes of the home visiting program is to enable the member/patient to remain in their own homes for as long as possible and to minimize hospital days. This also takes the pressure off the government-supported hospital system. Approximately 60% of beds are now occupied by people who are HIV positive.
The single most important component of the services is counseling for various situations: for those who are HIV positive to maintain an optimistic outlook and to encourage them to take care of their bodies so as to live free of AIDS for as long as possible. This is called living positively with HIV. Once they have AIDS in an advanced stage, counselors can aid in preparing them for dying. An accompanying aspect of work with the infected is to counsel the families, including the children, to prepare them for separation.
The most important part of this activity is to work with the children who will become orphans. It is very important at this stage to help the children who will be orphaned prepare for the death of their parent(s). The children must realize that the death of the parent is not their fault. There should be no stigma attached to children whose parents have died of AIDS. It is best to place the orphans with relatives and to ensure that the children finish their schooling. Follow-up counseling with the children and surviving families for months to years as necessary is also provided.
Another aspect of consultations and support is to help people reduce denial, discrimination, and stigmatization. These are persisting, serious, and difficult problems to overcome. Progress is being made, but it is slow.
A very serious problem of the HIV/AIDS victims service agencies stems from the extent of the epidemic and the success of the VCT program. The government is steadily expanding the VCT program and training more and more counselors. This is very good because it helps to identify the HIV positive. The counseling program is also very good and it is standard practice to refer the newly HIV positive diagnosed to service programs such as the ones discussed in this section. There is, however, inadequate support for these service programs and the numbers are only growing slowly. The caseloads of the existing agencies are growing so rapidly that it is difficult to maintain high quality services. Those we spoke with are reluctant to take the radical step of limiting new members accepted or creating waiting lists.
4. Kenya Voluntary Women Rehabilitation Center at Pangani for Community Sex Workers (CSWs).
It is reliably reported that the vast majority of CSWs in Kenya have a very difficult life. They are frequently beaten and robbed. Most come from rural areas to the cities because they are desperate to earn money and have only farm work skills. Some leave the family because they are ashamed that they are pregnant and the father has disappeared. Some already have one or more children for which they are responsible. They see no alternatives to earning additional money other than through prostitution. Many do not fully understand the health dangers inherent in commercial sex work including STDs and HIV infection.
The CSW group is hard to reach, educate, and motivate to change their behavior. This outstanding agency has found a very effective way to do this. It uses former prostitutes who are now staff as outreach workers and educators. They make contact with the CSWs and initiate education programs. They invite them to come to peer group education and counseling activities at the project center, located in a very poor area.
The approach to motivate CSWs to successfully change behavior consists of two parts: the first is to provide them with realistic, income generating alternatives that will approximately equal or surpass what they earn as CSWs after expenses and allowing for all too common robbery. They promise to teach them business skills or other skills in demand such as hairdressing. This training also includes bookkeeping training. They also have established a savings system so that what money the CSWs may have and later earn is protected. They also have a micro lending scheme to help the women start a business.
The second part is the promise to help them take care of their children, both those who are HIV positive and those who are negative. If the former CSW is HIV positive and is approaching the final stages of AIDS, and has children, the agency will plan and at least partially fund terminal illness expenses. In addition, it will plan with the mother and frequently with the older children, arrangements for the mother to return to her home village or town. They also plan for the placement of the children when they become orphans in homes that preferably belong to their relatives. The agency finds this approach is much cheaper and better for the orphans than placement in orphanages. Support of the orphans may continue for years. It includes purchase of basic clothing, payment of school fees, and providing limited amount of money for food. Counseling services for the orphan children are provided. A very important feature of the program is that staff will visit the orphans’ new homes and their schools at least yearly to make sure that they are properly looked after and the funds sent are used for the orphans. They also organize an annual reunion for the orphans that about one-third of the orphans attend. They make it clear to the orphans and to their relatives that there is a caring, responsible agency helping the relatives watching over the children.
A very important feature of the program is the counseling in-group sessions and, where necessary, in individual sessions. The agency provides counseling and emotional support whether the client is HIV positive or negative. An extremely important feature of the program is to help the dying mother write for her children a MEMORY BOOK. This is the story of the mother with emphasis on her career after her life as a CSW. The story includes information about the children’s family and the father, if known. Details of the life of each child are written down, the mother’s hopes for the child’s future, and a list and comments about people who are special to the child including friends and relatives. This has proved to be very important to the children. This program helps the orphans to grow up educated and with a sense of self-worth.
Kenya Pediatrics Association Meeting, Mombasa, August 28-30
Major attention was given to HIV/AIDS. HIV positive children occupy sixty percent of pediatric beds in Kenya. The country now has one and a half to two million AIDS orphans out of a population of 31million. The speakers were excellent, including the keynote speaker, Dr. Hoosen Coovadia, the Victor Dietz Professor of HIV/AIDS Research at the Nelson R. Mandela School of Medicine in the University of Natal in Durban, South Africa. Dr. Coovadia and his Kenyan colleagues are on a high level of agreement with respect to HIV/AIDS. On one hand, they emphasized the need to focus on this problem where a diagnosis of being HIV positive is a death warrant. They also emphasized the need to pay attention to not only the “infected” but also the “affected.” On the other hand, they put pediatric HIV/AIDS into perspective. Worldwide, there are about 10 to 11 million child deaths (under five) each year. Of these, approximately 600,000 are due to AIDS, or approximately 6% of the total. 48% of deaths in children are due to malnutrition alone, or in conjunction with other pathology. At least two-thirds of the under-five deaths are preventable by the application of existing public health technology. They urge that HIV positive children be treated in general pediatric units and not in specialized units. The purpose of treating them in general units is to reduce stigma and discrimination and to retain focus on the whole child.
The speakers urged the audience to fight for children’s rights and to broaden these to include the rights of the mother and the family. They urged special attention be given to mother-to-child HIV transmission. In order to reduce this transmission, a mother’s HIV status must be known. The experience shows that mothers and families are most likely to accept HIV testing when they become aware that antiretroviral therapy (ARV) will be available. Doctor Coovadia reported that the cost of ARV in South Africa is declining on an almost weekly basis. Effective ARV therapy can now be provided for the equivalent of US six dollars ($6) per month. This makes it possible to provide treatment for many more than previously. It is also very important in the reduction of HIV transmission from an infected pregnant mother to the baby. Similarily, it is hoped that the cost of ARV in Kenya will rapidly decrease and more money for ARV become available.
The audience was reminded of the increasing incidences and prevalence of tuberculosis (TB) infection and the problems of cross-reaction between some TB medications, ARV and oral contraceptives. There was also considerable discussion on the problems of opportunistic infections associated with HIV positive children.
Great emphasis was placed on addressing the psychosocial and psychological effects of HIV/AIDS in children and their families and strongly urged the training of many more workers to address the psychological problems of the HIV “infected” and “affected,” and the special problems of AIDS orphans.
The decision was made to keep this report short. There is much more to be shared. There are many pages of notes and hundreds of pages of handouts. The reader will please feel free to ask questions of the authors.