Community dialogue forum on TB in Mwea PDF - Kelin

ABBREVIATIONSAIDS . . . . . . . . . . . Acquired Immune Deficiency SyndromeARV . . . . . . . . . . . AntiretroviralCACC . . . . . . . . . . Constituency AIDS Control CommitteeCBO . . . . . . . . . . . <strong>Community</strong> Based OrganisationCSO . . . . . . . . . . . Civil Society OrganisationDASCO . . . . . . . . . . District AIDS Coordinating OfficeDOTS. . . . . . . . . . Directly Observed TherapyDTLC . . . . . . . . . . District TB and Leprosy CoordinatorGIPA . . . . . . . . . . . Greater Involvement of People living and/or affected with HIV/AIDSGoK . . . . . . . . . . . Government of KenyaHIV . . . . . . . . . . . Human Immuno-deficiency VirusKCM . . . . . . . . . . . Global Fund National Oversight Committee of Kenya Coordinating MechanismKELIN . . . . . . . . . . Kenya Legal & Ethical Issues Network on HIV and AIDSLAHI . . . . . . . . . . . Law and Health InitiativeMDGs . . . . . . . . . . Millennium Development GoalsMSM . . . . . . . . . . . Men who have sex with MenNACC . . . . . . . . . . National AIDS Control CouncilNEPHAK . . . . . . . . . National Empowerment Network of People Living with HIV and AIDS in KenyaNGO . . . . . . . . . . . Non-governmental OrganisationOSIEA . . . . . . . . . . Open Society Initiative East AfricaPHO . . . . . . . . . . . Public Health Officer, Public Health DepartmentPLHIV . . . . . . . . . . Persons living with HIVPMTCT . . . . . . . . . . Prevention of Mother to Child TransmissionTB . . . . . . . . . . . . TuberculosisCover photograph: Melba Katindi (KELIN Advocacy and Training Officer) takes participants through a session2

1.0 EXECUTIVE SUMMARYThe Kenya Legal and Ethical Issues Network on HIV & AIDS (KELIN) is one of the few organisations in Kenya and East Africa working on legal and humanrights issues in relation to health and HIV. KELIN’s goal is to undertake advocacy and provide leadership in ensuring an enhanced rights based approach inhealth and HIV strategies and programmes.The National Empowerment Network of People Living with HIV and AIDS in Kenya (NEPHAK) is an NGO that unites support groups of People Livingwith HIV/AIDS (PLHIV) and individual PLWHAs into a national and formidable force to counter the impact of HIV and AIDS on their lives and that oftheir loved ones in Kenya.Following increasing reports of arrests of TB patients in and around Mwea, KELIN and NEPHAK, with support of the Open Society Foundation, collaborated todeliver a one day <strong>Community</strong> Dialogue Forum in Mwea on the effective control, management and care of TB with a focus on PLHIV. The <strong>forum</strong> was held on27th May 2011 at Green Ficus Hotel. The aim of the <strong>forum</strong> was to mobilize complementary action by all stakeholders in the effective management of TB in thearea.Key stakeholders in TB management at community level were invited including representatives of key Government organs working on health issuesespecially TB & HIV, Magistrates, community health workers (CSWs), local CBOs and <strong>Community</strong> Support groups of TB patients & PLHIV and mediahouses. Unfortunately neither the Provincial TB and Leprosy Coordinator (PTLC) nor the District TB and Leprosy Coordinator (DTLC) were represented.There were 39 participants during the <strong>forum</strong>. The attendees shared views and perspectives on various issues hampering effective TB diagnosis andtreatment adherence in the area.The <strong>forum</strong> begun with general PowerPoint presentations facilitated by Allan Maleche, Melba Katindi, Mr. Nelson Otwoma and Ms. Lucy Ghati of KELIN andNEPHAK respectively. Deliberations followed thereafter on the topics presented on including issues relating to TB, HIV and relevant Legal provisions. Severalparticipants shared personal testimonies highlighting their experiences as TB patients. There were numerous questions raised in relation to TB treatmentespecially in children who were HIV positive. The misconceptions around TB epidemic were discussed bringing out numerous cultural beliefs that discouragedmany suspected TB patients from seeking TB screening. One major issue brought out that contributed to non-adherence was the long duration of TBtreatment which was unsustainable during weekends and long holidays when the health centres remained closed and hospital personnel unavailable. Theprison representatives raised concerns with regard to TB diagnosis within the Prisons sighting understaffed laboratories and the difficulty in screening newdetainees.Back to the top4

• To understand the law• To learn about our rights• To address community problems on TB treatment• To gain knowledge to be able to share with others• To know how to go about the challenges of my work in prison and fostering cooperation with community members in supporting releasedprisoners still undergoing TB treatment.• To know the systems in place and encourage community referral mechanisms• How to give support in terms of eliminating TB and HIV related stigma• Understand the role of the community in supporting patience during treatmentSESSION ONE: Summary of Presentationsi. Introduction and overview of KELINMr. Allan Maleche, the Coordinator at KELIN, familiarized the participants with KELIN. He mentioned KELIN’s objective, mission and vision. Allan explainedthat KELIN was in the business of health and human rights because majority of ordinary citizens in Kenya are ignorant of their rights and cannot hence accesshealth related rights. He explained that the stigma and discrimination associated with HIV and other related diseases like TB pose a major challenge in theirprevention, control and management. He explained the need for integration of human rights in programmes and strategies on health, HIV and TB.He further enlightened the participants on KELIN’s involvement in TB and HIV programming. He explained that KELIN was involved in sensitizationand capacity building which involves the education of members of the community on the various human rights components relating to health andHIV and TB. He informed them of the recent trainings KELIN conducted in Kapsabet in partnership with NEPHAK which were aimed at enablingan understanding of the balance between public health and human rights in the context of TB and HIV. He then explained the litigation and legalsupport that KELIN offers on pro bono basis in order to provide redress to PLHIV in respect of the various legal & ethical concerns or human rightsviolations encountered. He explained KELIN’s involvement in case of the imprisonment of three TB patients in Kapsabet who had allegedly defaultedon their TB treatment. He also drew their attention to KELIN’s ongoing enquiries into the case of Simon Maregwa in Mwea which is similar. Finally heexplained that KELIN hopes to develop detailed reports and share with policy makers in an effort to strengthen advocacy and lobbying for effective TBmanagement national and operational policy that are rights based, people centred and less punitive for the achievement of better results within thecommunity.Back to the top7

He explained that his expectation for the <strong>forum</strong> was the participants would be enlightened on TB and related human rights to enable them report violationsand claim the health rights guaranteed to them under the provisions of the Constitution.A member of the community posses a question at the <strong>forum</strong>ii. Introduction and overview of NEPHAKThe participants were generally familiar with NEPHAK. Mr. Nelson Otwoma, the National Coordinator at NEPHAK gave them a further detailed insight intothe work of the organization. He began by explaining that NEPHAK was national network that not only united PLHIV but also those affected by TB throughsupport groups, post-test clubs, women and youth groups, CBOs, NGOs and other networks. After stating NEPHAK’s mission and vision, he explained thatthrough NEPHAK and its partners, Greater Involvement of People living and/or affected with HIV&AIDS (GIPA) can be achieved. He explained NEPHAK’s rolein identifying and bringing the TB cases to that attention of KELIN for legal and probable litigation support. He explained that majority of the cases identifiedby them involving violation of rights of PLHIV are referred to KELIN and encouraged reporting of any violations within Mwea and its environs. Finally, heexplained that on the National platform NEPHAK served as the voice of PLHIV and enhanced their involvement in the HIV response through representation inthe National Oversight Committee of Kenya Coordinating Mechanism (KCM) – Global Fund, Kenya Stop TB Partnership and the TB Interagency CoordinatingCommittee.Back to the top8

He concluded by explaining that the overall goal of NEPHAK is to work to improve the quality of life of PLHIV and that dictates involvement inempowerment of its membership on TB care and its management.iii. HIV and TB collaborationThe objective of this presentation was to facilitate an understanding of the link between TB and HIV. Lucy Ghati, Programme Officer at NEPHAK facilitated thesession. She began by brain storming with the participants on their knoweleddge on TB issues. Besides some common symptoms the participants did not havea lot of information regarding TB. Ms. Ghati proceeded to give an overview of the causes of TB, how one gets infected and additional signs and symptoms. Shehighlighted the epidemiology of TB and HIV and their connection.The participants identified the possible factors that cause delay in TB diagnosis as long distances to health centres, HIV related stigma, patient’spreference for traditional healers and prayers before seeking treatment, communication barriers between health workers and clients and ignorance ofthe facts on TB. She briefly explained the treatment drugs which were dependant on each individual case.After reiterating the importance of adhering to TB treatment Lucy inquired from the participants community misconceptions around TB that hamperedtreatment adherence.“One of my colleagues at work passed away after being diagnosed with TB. Interrogation of the circumstances surrounding his death revealed that due to self stigma, the deceased hadnot been taking his medicines but was simply discarding them under his bed.”Lucy explained that both HIV and TB related stigma results in numerous unnecessary deaths.“Villagers in my area believe that TB is a curse that is hereditary that is why it is common among members of the same family”Lucy explained that TB being airborne was likely to be easily passed on from one member of the family who is infected to the others. She clarified that it wasnot a curse or related to witchcraft as commonly alleged.Several other misconceptions were addressed. The participants were enlightened on the causes of MDR TB and concluded with a lengthy discussion on therole of the community in TB management. During this session there arose uncertainty as to whether BCG should be administered to HIV positive babies.iv. Legal and Ethical issues in TB managementThe objective of the presentation was to enable an understanding of the balance between Public health and Human rights in the context of TB and HIV. M/sMelba Katindi, Advocacy and Training Officer at KELIN delivered the presentation. She began the sessions by inquiring whether the participants had everdiscriminated against someone with either TB or HIV. After interesting deliberations by the participants as to what constituted discrimination and what didn’tBack to the top9

she explained what legal and ethical issues were and explained the role of stigma and discrimination. Her presentation focused on Testing, Confidentiality andCriminalization.She explained briefly the provisions of The Constitution and The HIV and AIDS prevention and control Act, 2006. During discussions on testing andconfidentiality, the participants expressed differing opinions on the issue of partner notification of HIV+ results.On criminalization, Melba explained summarily the provisions of Section 24 of the HIV and AIDS (prevention and control) Act, 2006 and section 27 ofthe sexual offences Act, 2003 that criminalize intentional transmission of HIV. She further elaborated on section 27 of the public health act that allowsfor the detention of persons suspected of having an infectious disease upon an application by a Public Health Officer in the interest of protection ofpublic health. The issue of criminalization sparked off a heated debate on appropriateness and effectiveness of the provisions both in relation to HIVand TB.Melba concluded by reiterating the significance of embracing the Rights Based Approach in dealing with health issues.SESSION TWO: Experience SharingExperiential stories are a powerful tool in enhancing learning, performance, cohesiveness and understanding. The objective of this session was to highlightboth positive and negative aspects relating to TB management as personally experienced by community members.WaitheraMark“I was on TB treatment for 5 months. In that period I was made to believe that I had received divine healing. Sadly, shortly after I stopped taking my medication I got really sick. Asa result of my relapse when I was initiated back on treatment I had to have 60 injections administered daily. This was really tough on my having to travel daily to the health centre.The difficulty was mostly on weekends when the centres were all closed and medical personnel unavailable. I had to pay a government Doctor who lived next to my home to administerthe injections for me over the weekends so that I don’t risk relapse again! ”“My wife and children were diagnosed with TB before I was. We all received treatment. My wife however who was HIV positive at the time was secretly using herbal treatment. Weonly discovered after she was paralysed. Despite all efforts to save her life, she passed away. As a result of this traumatizing experience I am actively involved in TB and HIV literacywithin my community.”Gachoki“Had previously suffered from TB and got re-infected. When I was put on treatment, the treatment really weakened me and I was unable to fend for myself. I was too weak to work ordo anything and living in the city, there was no-one to assist me in cooking, looking for clean water and basic grooming. Inevitably, I defaulted. I got sicker and sicker and eventuallyBack to the top10

esorted to going back to my village to seek necessary family support that encouraged me to complete my medication. It was tough but I am now living healthy, free from TB.”Wambui“I was diagnosed with TB at the age of 23 after undergoing so many inconclusive tests. TB is often associated with HIV and my loss of weight only fuelled the rumours. Self stigmaand fear of discrimination by family made me move away from my home. Despite being negative, I felt moving would allow me to complete my medication without anyone findingout. I advocate for strengthened community support systems for TB patients to encourage adherence without fear of double stigma related to TB and HIV. ”PLENARYDuring the Plenary, the CACC Coordinator explained that there is great effort in the county to foster TB-HIV collaboration. He recognized the need forincreased health education on TB management and treatments including community awareness on the link between TB and HIV. He appreciated the roleof the community health workers and emphasized the need for strengthening the referral system from the community to the health facilities and vice versa.Success in defaulter tracing is highly dependent on this. He explained that the pressure arising from the strict policy of zero defaulters is forcing public healthofficers to rush in seeking detention of defaulters as opposed to trying to address the problem. This way they avoid answering to their superiors as there will beno defaulters on record. He says lack of recognition and lack of remuneration for CHW and other community structures is discouraging their good work.A community health volunteer explained that whenever a TB suspect is identified, referral to health centres are normally frustrated by the longdistance which would impose numerous travel costs for the patients.A community peer educator was concerned that defaulter tracers are most of the time ignorant of the special circumstances hindering adherence such as lackof food, clean water and money to travel to the health centres as often as is required.Back to the top11

From left to right: Ms. Mary Ngunji (NEPHAK TB Ambassador) and Ms. Kisanet Yemen(KELIN volunteer lawyer) listen to the proceedings at the <strong>forum</strong>The prison representatives unanimously raised concern with regard to the ignored nutritional needs of both TB and HIV patients in prisons. He explainedthat neither the Public Health Officers nor the patients themselves request for special diets while in the prisons. Further the courts remain ignorant on thesignificance of factoring in dietary needs in successful medical interventions. They also stressed on the need of special holding cells for all new prisonersfor screening before joining the general prison population. This will greatly reduce the chances of infection within the prisons. Additionally the prisonrepresentatives observed that failure rate in drug adherence of released prisoners is very high. There needs to be a follow-up mechanism to ensure theirsuccess within the community.The NEPHAK community representative restated the lack of community awareness on TB and health related rights. Government has failed ineducating the public on health issues. She proposed that just as in HIV treatment adherence, counselling of TB patients needs to play a significant roleif TB treatment adherence is to improve.Back to the top12

3.0. METHODOLOGYThe Forum comprised a participatory approach which included structured presentations, Question & Answer sessions, experience sharing, and healthydebates among the participants. The presentations were made through PowerPoint and handouts. For efficient deliberations the facilitators felt it wasimportant to deliver an overall presentation to cover basics of TB and the relevant legal provisions. This was done in an attempt to address existingpresumptions that may have arisen during the deliberations and promote accurate and informed contributions from the participants.4.0 CHALLENGES1. The participants were unfamiliar with basic facts of TB and the law. The coverage of the modules was rushed and the case studies could not beinterrogated in detail.2. Due to lack of previous training, the participants raised numerous questions and clarifications which ate into the presentation time. The numerousquestions that arose could not be exhaustively discussed in the limited time that was allocated for community deliberations.3. The sessions started late as a result of the participant’s late arrival; this posed the challenge of having detailed presentations and discussions.4. Power cuts during the training interrupted the sessions and blew KELIN’s electronic equipments including laptop cables and the LCD that was beingused for the presentations. We were unable to share the visual aids prepared including images and videos.5.0 RECOMMENDATIONS1. In future, it would be best if a general training for purposes of information dissemination and capacity building would be conducted beforeundertaking a community <strong>dialogue</strong> <strong>forum</strong>. This will greatly benefit participants and contribute to more informed deliberations.2. A simplified handbook containing legal provisions highlighting rights and obligations in relation to the enjoyment of the Right to Health would be auseful tool in disseminating the much needed information.Back to the top13

APPENDIX I: LIST OF PARTICIPANTSNo. Name Sex Organization1. John M. Kanja M Peer Educator Kimbimbo SDH2. Moses Gachoki M Christian <strong>Community</strong> Mwea (CCS Ngurubari) TB Patient3. Naomi W Riura F <strong>Community</strong> Health Volunteer (Anti stigma Support Group)4. David Munithi M Christian <strong>Community</strong> Mwea (CCS Ngurubari) TB Patient5. Ejidio W Wjoka M6. Emily Wangeci F Mwienderi Self Group7. Mark Gathumiano M DIFFATHAS PLWHAS Group8. Edita Wangari F Christian <strong>Community</strong> Mwea CCS Support Group9. Alice Muthoni F Christian <strong>Community</strong> Mwea CCS TAIBA10. Joseph Muntike M KIMBIMBI Support Group11. James Liyingi M Mwea Hope in Life12. Michael Wamboi M Discovery Artists Youth Group “Advocacy Group”13. Elizabeth Kanini F MWIRERI Support Group14. Agnes Wanjiku F MWIRERI Support Group15, Rose Waithira F Former TB Patient16. Emily Wanjiru F Peer Educator (YPENLO Self help group)17. Florence Mwangi F Mugumo Support Group18. Susan Kavumbu F Mwea Hope in Life19. Kemau Kibe M Christian <strong>Community</strong> Mwea: Former TB patient20. Nazario Karuk M PLWHIV21. Francis Muiruri MOur Lady of LordsFormer TB Patient22. Sarah Wangech F Kimbimbi Support Group23. Charles Nauni M Embu Prison, Provincial TB/HIV Program Coordinator24. Josphat Myaga M Mwea Hope in Life25. Nancy M. Gratobi F MUGUMO Support Group26. Peterson Watinau M CALL Coordinator27. Charles Isimuitu M Kagio Support Group28. Aaron Mutumga M Paralegal Coordinator Southern Zone Support Group29. Simon Mati M Mwea Prison30. Mary Mgoneyi F TB Ambassador Kerugova31. Elizabeth Wanji F32. Esther Wambi F PLWA Representative33. Zipporah Kisilo F Mwea NEPHAK Representative34. Lucy Gheli F NPHAK35. Kisanet Yemane F KELIN36. Allan Maleche M KELIN37. Joy Obuya F Eyeris Pictures38. Nelson J.Otwoma M NEPHAK39. Melba Katidi F KELINBack to the top14