Warrior Squad Foundation Success story on HIV/AIDS in Karamoja

success story on HIV MAIN programme implemented by Warrior Squad Foundation with funding support from ACORD Uganda 2010-2012

Knowledge about HIV/AIDS in Karamoja

Success storay
 

Introduction:
Warrior Squad Foundation (WSF) operates in Kotido District, part of the semi-arid region in Karamoja, North Eastern Uganda, and a Hard to Reach Community (HRC). WSF fights for the rights of children, youth and communities who suffer from poverty, disease, injustice and violence. The foundation works with them to find lifelong answers to their problems, a reason for the HIV/AIDs mainstreaming in all its thematic areas of Livelihoods, Good governance and Protection issues. WSF chose to work in three (3) out of four (4) objectives of the Country MAIN programme, the first being to demonstrate the existence of limited access to services and information on HIV/AIDs among the youth in the local government, second is to build the capacity of the youth and their families to demand for HIV and AIDs services from the local government and lastly to influence local government to pass by laws on utilization and protection of existing valley dams. The intervention targeted the pastoralists more, especially Karacunas. The HIV/AIDS Mainstreaming is being funded by Oxfam Novib through ACORD working closely with WSF in the implementation of the project. On the other hand, WSF organized and made Six (6) drama shows which were conducted in the sub-counties of Kacheri, Rengen, Kotido, Nakapelimoru, Panyangara and Kotido town Council targeted the Karacunas, children, women and men who had visited the market day out in large numbers. The drama theme: “We are against the culture that gives room to increased HIV/AIDs spread in our society”. Conducted 5 video show, and Supported World AIDS day.

The HIV MAIN project targeted the youth (young pastoralists) because they formed the most vulnerable groups in the communities and are more sexually active. The project therefore was aimed at equipping the target beneficiaries with life skills to protect themselves from HIV/AIDS infection

Before the HIV MAIN program intervention in the region, Survival and development was among the major challenge of rights in Kotido, Karamoja. This is affected by increasing prevalence of HIV/AIDS in the region.

The Karamoja region in Uganda has historically been a safe haven with regard to the HIV epidemic. Prevalence rates were recorded as less than 1% ten years ago, 75% lower than the National rate. However the most recent HIV estimates for the region put the rate at 3.9% of the adult population. This represents almost a doubling over a three year period. The district director for health services, Kotido, said the trend should be ringing alarm bells. “We are seeing a rapid increase in the region and we urgently need to scale up interventions, especially prevention.” This rise in prevalence is attributed to a sharp rise in new infections (incidence) in the region which coincides with increasing migration activities, military presence, epidemic levels of rape, forced marriage, widow in heritance, cross-generational sex, and increasing poverty. Early marriages of young girls without consent is common in Karamoja arising mainly out of the need for dowry; “There is also forced marriage by the parents even when a child is still young and of school going age just because she has a big body.” Female, 16

In light of the increasing HIV prevalence in the region the low levels of HIV awareness and high levels of stigma are of grave concern. The majority, 68% of women and 62% of men, do not understand basic HIV transmission and still believe local misconceptions, for example that HIV can be transmitted through sharing a meal with an infected person. The percentage of people with comprehensive knowledge about HIV is again shockingly low at 13% for women and 28% among men. Consequently stigma is still high and few people have accepting attitudes towards those who are suffering from HIV (15% of women and 31% of men). These statistics are among the lowest in Uganda. The CEO of an organization working in the Karamoja Region referred to the situation as follows: “People run away from those they suspect to be HIV positive and do not offer them basic care. There remains a lot of fear of HIV/AIDS in Karamoja. If a Karimojong reveals his sero-status, he will be isolated by the community and left to die alone in the manyatta (homestead).”
Due to the pastoral way of life in Karamoja young people in the region miss out on education which is a key channel through which they acquire life planning skills and knowledge on sexual reproductive health including education on HIV/AIDS prevention

Karamoja is drastically underserved with regard to HIV services. There is no CD4 count machine in the whole region and limited access to antiretroviral therapy (ART). Although VCT services are available in some health centres outside the main town, services are currently unreliable and limited in capacity, many only having test kits available for Prevention of Mother-to-Child Transmission (PMTCT) Programmes. In the year 2009/10 only 3,523 people tested for HIV in Kotido and 4,625 in Moroto, representing 2.3% and 2.4% respectively of the district populations. Kotido only has one health centre able to provide ART and there are currently only 300 people receiving this treatment. Moroto is slightly better with 1,112 people on ART. However it still represents only a fraction of those who actually need the life-saving treatment but are unaware of their status. Only 8.3% of HIV patients in the region are currently accessing ART compared to the National average of 45%. Map of Uganda below showing the prevalence rates per region.





What process was undertaken during the implementation of the activities (training, exchange visits, received in puts, exposure visits etc)

WSF chose to work in three (3) out of four (4) objectives of the Country MAIN programme, the first being to demonstrate the existence of limited access to services and information on HIV/AIDs among the youth in the local government, second is to build the capacity of the youth and their families to demand for HIV and AIDs services from the local government and lastly to influence local government to pass by laws on utilization and protection of existing valley dams. The intervention targeted the pastoralists more, especially Karacunas funded by Oxfam Novib through ACORD working closely with WSF in the implementation of the project. WSF organized; trainings for peer educators among the Karacunas, Six (6) drama shows in the Sub counties of Kacheri, Rengen, Kotido and Panyangara (Kokoria market, Kokoria Trading Centre, Panyangara trading centre, Nakapelimoru Market, and Kanawat trading centre) with a theme: “We are against the culture that gives room to increased HIV/AIDs spread in our society”. Conducted 5 video show, and Supported World AIDS day.


What do you consider the most important achievement from the program interventions?

The most significant achievement is improved perception and knowledge about HIV/AIDS basic facts (spread and prevention) among the HIV MAIN programme in Kotido.

As a result of the intervention, approximately 4,500 people were reached (2,500 females and 2000 males) in the District of Kotido. People are now able to freely interact or share the status without fear (See Rebecca’s story in the annex). The most common forms of sexual violence reported during discussions were rape and defilement that make the young people (karachunas) vulnerable to HIV/AIDS. Most common cases of rape usually occur while women and girls are in the bush fetching firewood or water, on their way from or to home in execution of their gender roles. In Kacheri, a rape which does not involve courtship is condemned and once the perpetrator is known, the community makes sure he pays for it.

Continuous discussion and probing of some of the respondents, it revealed that, in the past years sexual exploitation of young boy shepherds by other older men used to take place in the bigger community kraals where the Karimojong could take their cattle to grazing during long drought seasons usually extending to over one year. Though most of them had not exactly witnessed it, but through ear say. Such perpetrators where killed once caught by pushing a stick into the anus and rolling it.

According to both the male and female respondents, HIV spread within the community is daily due to the cultural practices such as rape as a means of courtship. Domestic violence, forced marriage, and rape were those most reported. The community highlighted that women and girls are the most vulnerable to and most affected by the different types of violence existing within their communities, this was further explained by a police officer in Kacheri police post who gave a ratio of about 9 women to 2 men.
According to the participants, many of the PLWHV within the homes experienced especially domestic violence and sexual exploitation, marital rape. Other form of violence like courtship rape, rape, defilement and battering happens along the roads, bushes and gardens and this mostly affects women and girls.

Discussions with the community revealed that, PLWH find it comfortable to speak or talk about the HIV status when they are sure of getting support. There are also situations when people do not talk about their HIV status. They would rather keep it within themselves and find their own coping mechanisms; this was attributed to various reasons including;
• Fear of stigmatization,
• Being beaten and blamed for having caused the violence especially in cases of domestic violence and sometimes rape
• Humiliation – where some people within the community begin to compose insulting songs about the survivor,
• Lack of confidentiality – this was further explained by one woman who said;
• Fear of being rejected by family. This is very common in marriage, where a woman can be rejected and chased away by her husband for she is HIV positive.
• Lack of information on availability of basic services within the community
• Being threatened with further harm or murder if they reported the matter
The community members called for more films to be shown to the communities, most especially films that are translated in the local language for people to easily understand the information. For example the LC1, Kacheri suggested that if possible local films most especially on the courtship, Akai angapesur (the house of girls). From his explanations, the nature of courtship is highly a risky factor to the spread of HIV. In Kotido (Najie), the girls in a village converge into a single house where their male counterparts converge from several parts of the District, nude of which sometimes succeed them. The nature of this house is greatly warring in terms of spreading the virus if not properly checked.
An improved willingness to go for VCT services as witnessed during the World Aids Day held in Kotido, done by the Health Department, KDDs, RECHU/ MJAP and AMIICCAL supported by WSF. During the World AIDS day commemoration only, about 366 persons (males 126 and 240 Females) community members turned up for VCT. The community members testified that, for many years there was fear and no service provided by the health units in the Districts.

What lessons have you learnt and what do you hope to do about these lessons.
Lessons learnt:
 Cultural Practices. Among the Karimojong pastoralist have been cited as the main factor in accelerating HIV/AIDS infection. In particular, the wife sharing, inheritance, Marital rape and teenage marriage and yet there have been no studies to determine the extent of this practice and therefore their contribution to the spread of HIV/AIDS

 Human Right Abuse and gender. Vulnerability to AIDS is fuelled by lack of respect for the rights of women and children. For women living in Karamoja, rights to security, freedom from inhuman or degrading treatment, to information, education, expression, association, privacy and infidelity are hard to come by. This compromises their ability to gather information on HIV/AIDS and take measures to avoid infection.

 Poverty and Disempowerment. Pastoralist communities have impoverished and dis-empowered by the erosion of their livelihood resources. This has made them more vulnerable to HIV/AIS as their socio-economic systems defray.

 Conflicts and Displacement. Pastoralist (Karimojong) has come to be associated with ceaseless conflict. Conflicts have generated several avenues for vulnerability to HIV/AIDS. It has also accounted for rural- urban migration and associated exposure to HIV/AIDS. This has always occurred as displaced persons; deprive of any livelihood resources (Livestock) become vulnerable to exploitation including sexual contact with high-risk person. Conflict has also associated with rape, impoverishment and a breakdown of social order, which contribute directly to the spread of HIV/AIDS.

 Alcohol. There appears to be an increasing trade in alcoholic drinks such as Sorghum-based Ebutiya, EKutukuto and Maruwa. Rather than returning to their homes, the drunk spends the nights in town, where levels of infection are higher than in their homes.

 Human Health services, including preventive health, health education and public information about HIV/AIDS, are spars and poorly equipped throughout the Karamoja which is geographically, politically and culturally marginalized.
Conclusion: The target audience proved to have learnt from them as measured during the quick reactions from them though we still need to do a lot more for Karacunas to understand that HIV/ AIDs is there and it kills. This means it is vital for them to first understand sexual health risks for example STD/STIs and HIV/AIDs and also need to know how some cultural practices increases STD/STIs risk and in addition workers handling HIV/AIDs like health workers VHTs and NGOs need to well understand HIV/ AIDs and as well understand their target audience. This can be related to GBV where we shall need the police, probation, politicians and NGOs to well understand HIV/ AIDs in relation to GBV and how they can act to prevent much of the happenings.


“Rebecca’s story”
She held tightly to her mouth and looked in dismay taking each step with care, as she came to meet me. My first impression of Rebecca was made by her smile and the warmth in her eyes. However, as she began sharing her life’s story, her smile left her face, and her eyes revealed much sadness.
At the age of eighteen, Rebecca’s life changed dramatically when her parents, brothers, sisters and other relatives were butchered by Armed cattle rustlers (suspected to be from Dodoth present Kaabong District) abduct, torture, undress, rape and killed all in cold blood. Similarly a colleague of hers from the same village who was abducted and gang raped committed suicide when she tested positive. Soon afterward, perhaps in search of love and daily survival, she got married and encountered another nightmare of marital-rape and became pregnant, giving birth to a daughter named Nakwang. Sadly, she then learned that her husband was not faithful to her, having had sexual relationships with many other women coupled with the nature of courtship always seen as normal. Rebecca said “I heard that courtship in some cultures in Uganda and may be practiced by those who have gone to school is one on one. But in our culture here in Jie (Kotido) is unique in that for one to be recognized as a man or a potential wife has to engaged over 20 girls or engaged by 100 men who sometimes succeed the. Girls in the whole village as a culture converge in a single House (akai-angapesur) in which men from various parts of Jie (Present Kotido District) also too converge in the night who enter into this house node (without any clothing) where girls a wrestled until over power, one comes after another taken as a game for the whole night followed by the number of days of the cycle in the entire courtship”. Her husband passed HIV onto her, she gradually lost of trust of him and most motivated to divorce which was an abomination according to the Karimojong culture.
At the age of twenty-three, she got married again, hoping to begin a new life. She and her husband got jobs at one of a local businessman who earned a living through brewing of local alcohols (Maruwa and Ebutiya). She felt she had the beginning of a stable family life at that point. However, the emotional pain leftover from her previous marriage made her cautious about having children with this husband. After observing the kindness he showed to Nakwang over two years, she agreed to have a child; their son, Losike, was born a year later.
When Losike was one year old, Rebecca began getting sick, having unexplained rashes and fevers. She became aware of her husband’s reckless living, including “womanizing, drinking, and sleeping in beer halls”. She feared that he might have passed HIV onto her, so she made the decision to get tested. Her fears were realized when she was told she was indeed positive. She had her children tested too, then learning that little Losike had also been infected with HIV. Rebecca was unable to afford the AIDS medications (ARVs) at that time, was not accessible. She became sicker and, a year later, was diagnosed with TB (tuberculosis). She went through TB treatment, but it failed, because her immunity was too weak.
Her husband continued his wild behavior, though his wife grew sicker by the day. He was even caught in adultery with another man’s wife. He narrowly escaped being killed by her husband in a fit of rage. Though a Kraal leader was consulted, he was not willing to intervene, so Rebecca informed her husband’s employer who helped them relocate to the village in Kacheri Sub-county (Kotido District). Though he could have taken the opportunity for a fresh start, he continued in the same pattern of sexual immorality there.
One day, a Programme staffs from Warrior Squad Foundation had a community dialogue (sensitization) in Kacheri on HIV/AIDS prevention and noticed how sick and frail the couple and young son had become. He recognized the seriousness of their condition and recommended that they begin ARV treatment immediately from the Health Center Three Church of Uganda. The doctor examined and explained to them that there was serious risk involved; he would normally address their other infections first, but they may not live long enough without the ARV treatment. In fact, he told her that she had a 50/50 chance of survival. Both Rebecca and two-year-old Losike began their fifteen-day starter pack of ARVs. On day four, Losike complained of pain in his stomach. This continued for the next three days, and very sadly, he died on day seven. Rebecca hadn’t prepared her heart for this, so the shock was followed by intense grief and depression. This was complicated by pain in her head, side and feet, perhaps side effects of the ARVs. She was physically and emotionally unable to care for her daughter, Nakwang, so she sent her to live with her sister.
Rebecca’s husband provided a little money for food, but wasn’t around to really care for her needs. Instead, he continued in his careless behavior, staying out late each night. After a month or so, Rebecca felt even sicker, so she sent a young girl to Warrior Squad Foundation office for help. WSF staff having known her condition made some contributions to save her go to the hospital for treatment in a coming days, one staff member for example said “really do we have any money to support such person in a critical condition?” this however was not in line with WSF mandate of HIV prevention but the staffs can do something either by contributing to the medical bills if possible. She was diagnosed with TB (again) and meningitis. She slipped into an unconscious state, and remained that way for four days. When she woke up, she was unable to move. She was confused and unable to remember things. She went through TB treatment again, and began a slow, tedious process of recovering her strength. After three months and some physical therapy, she could get to a sitting position. It took much patience and determination from her and her caregivers to work toward each milestone. She had many setbacks along the way, including a serious bedsore that remained for a year, and a period of vomiting that lasted 4 months. Though extremely weak in body, she had the drive to face each day, never giving up.
Her husband visited her after a while, and she could see that he was not healthy. She encouraged him to get the medical help he needed, but he refused. His brother tried to convince him as well, but failed. His choice to deny his status and refuse help eventually cost him his life.
Rebecca is now a patient at Karamoja Diocesan and Development Service (KDDS) in Kotido and much stronger and healthier she said “ I feel more stronger, I can see, I can be able to see more chance to see the sun though I however know soon, one day I will have to go”. She is making progress with the help of her physical therapist who clearly loves her, and she has regained the weight she would lose. Life has dealt her some big blows, but she has pressed on. She’s not a quitter. On the contrary, she talked about her desire to live on her own, to have some kind of employment, and to support her teenage daughter again, evidence that she has hope for her future and now is a member of Persons Leaving with HIV (PLWH) group in Kotido with no fear to talk about her status unlike those other days child. She said this with a smile running through her face “when I remember years far back as a little kid, we only knew that HIV/AIDS was not part of our community but for the west (say people from Acholi region, Bugisu and the so called the learnt) dressed in clothing’s. My people and I knew that people from towns are the ones with the HIV Virus but now I understand.... and know that HIV is for human. I don’t fear now to talk about it even to my own sisters or friends, I know today is mine and tomorrow’s is someone’s, it our tacit role in getting our little ones know all about HIV/AIDS without fear’. She posed a question in amidst her speech that “what do you do if your house is on fire? Do you leave burn or put off the fire? That is where I say, my entire house is on fire by me being HIV positive, I have to fight heard to ensure that my entire house those not burn completely so that others can use after me. This is why I accepted to come openly and share with every one about AIDS just to save them, the future of Jie, Karamoja, Uganda”. She slightly burst into laughter when she some my colleagues saddened by the story and said “worry not my friends for this is part of life, I am here with and we shall make this place a better place for you and me”.
Rebecca’s story is not finished yet.

Programs

Warrior Squad Foundation’s programmes are based on the following thematic areas;

· Livelihoods

· HIV/AIDS

· Protection (Gender based Violence (GBV))

· Peace Building

· Water, Sanitation and Hygiene

HIV/AIDS prevention:

through; Awareness creation on HIV/AIDS (through; crusades, Conducting film shows, sports for awareness, debates, Music Dance and Drama, radio program (spots) on cultural norms that contribute to the spread of HIV/AIDS; support to persons Living with HIV/AIDS (through; IGAs)

Livelihood: the programme is aimed at Contribute to reducing the marginalization of the population of Kotido through increasing economic opportunity and access to services for the poor and vulnerable youth, men and women through the assets building, economic opportunities, and resilience of female and male pastoralists and agro-pastoralists in Kotido District Support and strengthen food production and income levels of communities through; Training and support of youth in income generation and business skills, Support and strengthen nutritional and food utilization, strengthen agricultural production through the provision of inputs)

Gender based Violence:

·         Awareness campaign on GBV through capacity building of target community anti- GBV activists on rights of women and their role in development, Economic empowerment of women, Advocacy on women’s rights (property and inheritance etc.), and Provision of psychosocial support to GBV survivors

Peace building and Human rights:

·         through Support to community peace initiatives,  Promoted peace dialogues among communities; Support the establishment/strengthening of in and out of school child/youth led foras and initiatives for participation in peace building and conflict resolution, Undertake community outreaches for the youth on the nature of conflicts and the impacts on their lives and future, plus their communities and diversionary activities for the youth/Karachunas (e.g. vocational trainings, IGAs…)

Water, sanitation and hygiene promotion:

Sensitization of communities on hygiene related disorders (diseases) through; Film shows Music and drama; Training in water management; supported in and out of school children led initiatives in hygiene promotion.