NEPHAK. say yes to life NEPHAK. Enhancing the capacity of adolescents and young people in HIV and Health programming; The Sauti Skika Experience.

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1 NEPHAK say yes to life National Empowerment Network of People Living with HIV/AIDS in Kenya NEPHAK say yes to life National Empowerment Network of People Living with HIV/AIDS in Kenya Mission Promoting Greater and Meaningful Involvement of People Living with HIV in the response to HIV and TB in Kenya NEPHAK National Secretariat, 3rd Floor, Wood Avenue Court, Wood Avenue, Off Lenana/Argwings Kodhek Road, P. O. Box Nairobi, Kenya. Tel / , info@nephak.or.ke Website: SAUTI SKIKA sautiskika@nephak.or.ke Enhancing the capacity of adolescents and young people in HIV and Health programming; The Sauti Skika Experience.

2 BACKGROUND According to UNAIDS, an estimated 3.2 million children, and 2.1 million adolescents(10-19) were living with HIV globally and there were 780,000 new HIV infections among young people aged and 300,000 among adolescents aged in Despite the unprecedented progress made in the AIDS response in recent years, emerging evidence suggests that adolescents are falling behind as a result of not receiving the attention and services they require. AIDSrelated mortality among adolescents has increased despite other age groups reporting reductions according to UNAIDS estimates. Participants during 'Sauti Skika' workshop in Mombasa. Even with the milestones realized in research on the role of ART not only for prolonging lives of PLHIV but also as a HIV prevention intervention there is very still poor access and uptake of ART among this population. Two out of three people aged 0 14 lack access to HIV treatment worldwide, and recent data collected from sub-saharan Africa indicate that only 10% of young men and 15% of young women (15 24 years) are aware of their HIV status. Of greater concern is the lack of clear data for HIV incidence and ART uptake for ALHIV that can be useful to make policy and program decisions that benefit them. This coupled with limited capacity among ALHIV to adequately engage policy makers and stakeholders in health in advocacy efforts aimed at identifying their health needs and demand their health rights has resulted in this population being forgotten in HIV prevention and treatment interventions. ALHIV in institutions of learning are exposed to Life skills and sexuality education programs. However, these usually focus on HIV negative young people and HIV prevention seems to be the main target of many such programs. This has fueled stigma and discrimination and shame among ALHIV in learning institution according to a research conducted by MAXFACTA and NEPHAK with support from GNP+ through the ASK project. Adolescent girls and young women often do not have the final say on matters related to their own health care. Punitive and age-restrictive laws and policies present barriers to young women accessing health services. These include laws that govern the age of consent for HIV testing and access to sexual and reproductive health services, the criminalization of HIV non-disclosure, exposure and transmission, and punitive laws related to key populations. Negative gender stereotypes and harmful norms are equally damaging. NEPHAK with support from UNICEF Kenya received technical and financial support to intensify calls for urgent action by networks of people living with HIV, the Government, Political leaders and CSOs to address the empowerment needs of ALHIV while supporting their participation in decision making and implementation of programs that directly affect them: therefore ensuring they are central in championing for Leadership, Commitment and Advocacy at the National and County levels. 2 3

3 SAUTI SKIKA IS BORN; GOAL, STRATEGY AND OBJECTIVES: The overall goal of the project was to empower adolescents and young people living with HIV to increase participation in advocacy for improved access to HIV prevention and treatment interventions, increase demand for access to sexual reproductive health options and improve their quality of life. Expected Outcomes l l Kenya has a group of empowered adolescent (10-19) and young people (19-24) leaders living with HIV working for their voice and visibility in decision making platforms at County and national levels. Households, Communities, National and County governments have been sensitized to the needs of ALHIV and YPLHIV including the need to invest in adolescents and youth friendly services. Elizabeth one of Sauti Skika champions sharing her views SAUTI SKIKA (which means 'Amplify Voices') is an initiative for and by adolescents and young people living with HIV whose goal is to ensure the voices of adolescents and young people 'Living with HIV' is heard at all levels of HIV response. The initiative aims to empower adolescents and young people living with HIV; l To increase involvement in HIV prevention, treatment, care and support interventions. l Increase demand for access to sexual reproductive health services and improve their quality of life. (Older adolescents and young people) The initiative with a vibrant steering committee is currently hosted by NEPHAK and is aligned to the global 'ALL IN CAMPAIGN' efforts towards Ending Adolescents AIDS. The initiative seeks to have a pool of skilled and confident 'Sauti Skika' champions' as change agents who can engage in media related advocacy as well as contribute to policy and program meetings at County, National and global levels. 'Sauti Skika' Champions. Overview of 'Sauti Skika' Activities:- ldevelopment of ALHIV broader steering committee;- NEPHAK constituted a steering committee for the initiative to enhance the capacity of adolescents born and living with HIV to engage in County and National HIV response. The meeting which was held on February 11th had representatives from 4 5

4 NACC, NASCOP, RHMU, Hospitals and Organizations that work to address HIV in adolescents and youth like Nyumbani Children's Home, Gertrudes Hospital, Mater hospital, I chose Life Africa (ICL), The National Organization of Peer Educators (NOPE), African Jesuits AIDS Network (AJAN), MAXFACTA among others. During the meeting, members of the steering committee were briefed on the overview and rationale of the initiative and urged to support NEPHAK ensure the initiative is aligned to the ongoing National and Global campaigns and initiatives for example The 'All IN' campaign. NEPHAK also constituted an all young people (15-24) steering committee and through a democratic process selected a name for the initiative. Members agreed on the name 'Sauti Skika'. The team also settled for the name 'Vision Kesho' as their identity for a closed group they will have on Facebook to mobilize and educate fellow adolescents and young people. l Advocacy workshops in 3 Counties;- NEPHAK conducted Advocacy and Communication skills workshops reaching about 78 ALHIV and YPLHIV in Mombasa, Kisumu and Nairobi. The younger adolescents were supported to use drawing and art to 'break the silence' and share some of the challenges and benefits they experience in services delivery, at home and in school. They were also given tips on communication skills and carried out 'mock debates' and public speaking sessions. A Separate session was held with parents and guardians to discuss issues like disclosure and identify effective ways that parents of children, adolescents and young people living with HIV can support their advocates better engage in personal and advocacy growth. In Nairobi and Kisumu a separate session was also held for older adolescents and young people aged to discuss their SRHR desires, transition from children hospital, esteem and identity as well as career aspirations. l County Dialogue forums with ALHIV;- NEPHAK with support from the 'Sauti Skika' team organized and conducted County Advocacy dialogue forums with ALHIV in 3 counties of Mombasa, Kisumu and Nairobi. The meeting was attended by County officials, GOK officials, MOH officials; Ministry of education and other CSO working in health and youth issues. During the meetings, young people shared their challenges with their leaders and sought commitments for support towards addressing 'Sauti Skika' Champions during the Lessons sharing meeting. challenges that adolescents and young people face living with HIV face in public health, public service and education institutions. The ALHIV and YPLHIV also benefited from mentoring skills from policy makers who gave them tips on leadership skills. The young people are being supported to following up on the commitments made by the leadership at 6 7

5 l Engagement with policy makers in health for Advocacy for increased and sustained participation of ALHIV in development issues that affect their health. The Sauti Skika team was supported to plan for and meet with the NACC director to chart a way forward for collaborative engagement with NACC in addressing HIV in adolescents and youth. This led to the support of the team to the Maisha conference to take place in May The NEPHAK in partnership with The National Organization of Peer Educators (NOPE) and with support from UNICEF Kenya organized a National Stakeholders meeting on Adolescents and HIV. The objectives of the m e e t i n g w e r e t o v a l i d a t e t h e f i n d i n g s a n d recommendations of consultations with learners living with HIV conducted by NOPE and to Share lessons on effectively engaging adolescents and young people living with HIV secure commitments of stakeholders for Adolescents and HIV results through the 'Sauti Skika' experience. Nairobi County, MOH, UNICEF, PEPFAR were among the key policy makers present during the meeting. NACC Director Dr. Kilonzo hosts 'Sauti Skika' team at NACC. LESSONS LEARNED u Adolescents and young people are unique and require unique ways of engagement. u we need to take cognizance of their school days in planning meetings: It is advisable not to call meetings on school days as many adolescents don't participate. u Younger adolescents prefer to Use drawings to communicate and should be supported to do so. u To achieve desired results it's important to engage parents to be more supportive. u Adolescents have a lot to say and just need the platform and support to say it. Organizations like NEPHAK should play a supportive role in facilitating the opportunities for their 'Sauti Skika' team during group work. 8 9

6 engagement with leaders. u Leaders, Partners and stakeholders are willing to engage adolescents but do not know how. During the dialogue forums conducted in the 3 counties, policy makers and stakeholders all admitted to needing support in understanding the needs of young people and strategies for effective and meaningful engagement. u Consistent engagement and mentorship helps build selfesteem and support the Sauti Skika champions in adherence and self care which is good for their health. Our Views! I am a conqueror of HIV from birth. All this time I have learnt what does not kill you only makes you stronger and HIV will never because am a conqueror and its landlord; it lives in me not me in it. When adolescents and young people are empowered, they have knowledge on HIV and SRHR which will cause a reduction on the transmission levels. Also the youth is enlightened on the sensitive issues in the community. I have benefited from SAUTI SKIKA initiative; my cries and issues are heard and taken into consideration. 'Sauti Skika' creates a platform for my views and issues about HIV to be heard. Ms. Serah Makau a parent, shares a point during lessons sharing meeting. Teachers should stop judging the youths and adolescents who are living with HIV because it's not entirely their fault. Leaders should not make decisions for us. Adolescents are the shoes wearers so give us the opportunity to help in decision making. CRYSTAL ATIENO 18 years, Kisumu 10 11

7 My name is Saum and I am living positively and proud of myself. Adolescents are the future leaders and show good example thus enhancing them to become role models in the society of people living with HIV ensures stigma is reduced. 'Sauti Skika' has given me a platform for my voice to be heard and to be engaged in County Government decision making processes. I ask support from teachers, parents, religious leaders and the Government to support us adolescents and young people so our voices are heard and our problems solved. SAUM ADAM- 22 Years, Kakamega I am a Sauti Skika Conqueror and young person who is HIV positive. I feel it's important for adolescents and young people to be empowered in the HIV response because it will minimize the rise of HIV and promote adherence for the ones living positively as well as healthy relationships with their loved ones. 'SAUTI SKIKA' has enabled me to be a brave and strong young man who can talk about HIV and educate others on the importance of self-realization and acceptance. My advice to parents who have adolescents and young people living with HIV, disclose to your child of their status so as to get counselling on how well to live healthy lives. IGNATIUS DAVID; 21 years, Nairobi 12 13

8 I love cooking and enjoying life like any other girl can. Just because am living positively does not mean I cannot do what my fellow friends are doing. Adolescents and young people when empowered ensure that they do not stigmatize and rarely get stigmatised because they are happy about themselves and seek to empower others as well, like now am more of a community advocate for HIV treatment and I feel happy about it. Since joining 'Sauti Skika'; I have a higher self-esteem and have been involved in different activities where I get to speak my mind. What I have passed through when I went on 'drug holiday' is now a lesson I pass to my fellow adolescents to ensure they adhere to their medication so that their health does not get worse. The leaders, stakeholders, teachers and parents should be good to us and ensure we get all that we need for us not to feel lonely or hated because of our status and they make it their responsibility for us to get the knowledge for us to grow without stigma. I am living with HIV and am proud of my status, furthermore I am a public figure. Empowerment of adolescents and young people is great because it removes stigma through sensitization and training done. It helps young people be in a position to stop spread of HIV and have knowledge on SRHR. Sauti Skika has really helped me in so many ways now I can proudly speak on behalf of my fellow youths without fear and educate them. I can face the county government of Mombasa and raise the issues of YPLHIV without fear because HIV is real. I would recommend that parents to speak about HIV and SRH to the young adolescent. The County Government should source funds to support HIV activities conducted by youths. JULIET AKUMU, 20 years old, Mombasa JOYCE NDUTA- 17 years old, Nairobi 14 15

9 Being a 'SautiSkika' Champion has been a great journey that has opened my eyes to the immense potential that adolescents living with HIV have and what can actually be achieved if you give a child the chance to speak his or her mind.with the adolescents I engaged with in Kisumu County, they were very confident and their self-esteem over the top and were not afraid of their status, one of them said that HIV is not worse than cancer or diabetes which shows the level of knowledge they had with one demanding for CD4 count machine at their facility in the meeting with the county leaders. I believe 'Sauti Skika' is the timely Initiative as the world aims to End Adolescent AIDS and gives the Kenyan adolescent the platform to freely speak about their issues and needs at all levels. It empowers and informs and ensures that you are constantly engaged at whatever level as they are able to feel safe and free. LUCY WANJIKU- SautiSkika Steering Committee chair My name is Juliana Adhiambo Odindo,I am 23 years old currently working with National Empowerment Network of PLHIV in Kenya as a Program Assistant for Youth Adolescent and Children Living with HIV. I was born with HIV, I lost both my parents to AIDS when I was 3years and was always a sickly child who spent most of my childhood in and out of the hospital. It's very important that every adolescent to be empowered in all aspect so that they grow equipped to make informed decision and also have equal opportunities in life, I believe that with holistic approach from various sectors will work well and I hope every adolescent gets to enjoy this. Children, adolescents and youths depend on guidance and full support from parents/guardians, teachers and every leader in the society, for this reason parents have a role to play in our lives for love, adherence and full support for us to thrive, teachers have a role to ensure that we get so much from the education sector including Comprehensive Sexuality Education, co curricula activities they also need to join us in the fight against stigma and enable the school environment for learners with various conditions. JULIANA ADHIAMBO ODINDO -24 years, Program Assistant A/YPLHIV projects, NEPHAK 16 17

10 "ROLE OF PARENTS AND GUARDIANS Parents and guardians are the most important people in the lives and wellbeing of children and adolescents infected with HIV. These adults are in a unique position because: u Preventing HIV acquisition means they are protecting their children from HIV. u Take early actions to ensure children are tested for HIV and introduced to appropriate care. u Take early action if asked by health care providers, usually adopting positive health behaviors on behalf of children and adolescents u Provide ongoing information about HIV and what it means to be HIV positive u Timely disclosure and psycho-social support to children and adolescents infected with HIV. u Ensure that children and adolescents infected with HIV are not isolated or favoured as this may result in ridicule and enhanced stigma u Ensure that children infected with HIV are enrolled on treatment and retained into care. u Build upon past talks to keep teens informed as they grow up. This is important for enabling young people to understand HIV and related stigma u Separate myths and rumors learned from other sources u Share their values about sexuality with adolescents and ensuring the adolescents adopt safer sexual practices. Participants During Sauti Skika Workshop in Nairobi NEXT STEPS: u Ensure adolescents living with HIV have the capacity to meaningfully engage in health and HIV interventions targeting them. u Facilitate organizational development and systems strengthening for Sauti Skika Network to provide leadership, visibility and voice for ALHIV in Kenya u Formalize 'Sauti Skika' and get into discussions with other like minded Organizations towards forming an Alliance to ensure wider scope and sustainability of the initiative. u Roll out 'Sauti Skika' in other counties and work with partners to ensure the voices and visibility of ALHIV and YPLHIV is felt at decision making platforms. u NEPHAK will continue to strengthen the linkage between HIV testing and care facilities with PLHIV support groups to support disclosure needed for sustained uptake and adherence to HIV interventions among adolescents and young people. u NEPHAK will engage 'Sauti Skika' Champions in mentorship activities for building their confidence and capacity in advocacy and communication skills. Participants during Sauti Skika Workshop in Kisumu