Campaign briefing: Republic of South Sudan - A civil society - government partnership for health by International HIV/AIDS Alliance

CAMPAIGN BRIEFING Supporting community action on AIDS in developing countries

Republic of South Sudan A civil society â&#x20AC;&#x201C; government partnership for health

ABOUT THE PROJECT

INTRODUCTION Celebrations on 9 July 2011 marked the birth of the Republic of South Sudan, but alongside the euphoria was a realisation that the new state faces enormous challenges.1 The country has the highest maternal mortality rate in the world, with one in every 50 live births resulting in the mother’s death. The provision of appropriate health care, especially maternal health, is arguably the most pressing issue for the development and stability of the new republic.2

The International HIV/AIDS Alliance and its linking organisations* in Kenya, South Sudan, Uganda and Zambia implemented a 12-month project (October 2010-September 2011) funded by UKaid from the UK Department for International Development (DFID). The project aimed at contributing to reducing HIV-related maternal mortality and improving health outcomes for women, especially mothers living with HIV and their children.

The Project •

Mobilised communities and civil society to increase their understanding on the links between HIV and maternal mortality;

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eveloped and implementing an effective advocacy campaign in D each country to raise awareness and build political momentum to create an enabling environment for policies that support comprehensive HIV and maternal and child health model that links primary HIV prevention with sexual and reproductive health;

Women living with HIV are more likely to die in pregnancy or childbirth than women without HIV. HIV is a major contributing factor to maternal mortality in countries with high HIV prevalence, such as South Sudan.3 In fact, HIV may be contributing almost a third of the global maternal mortality rate.4

• Strengthened effective civil society collaborative platforms – national partnership platforms (NPPs) that can influence national policy agendas to support the reduction of maternal mortality; and •

While the Republic of South Sudan needs to build an effective, new health care system to serve communities – both in terms of facilities and technical and human resources – communities themselves have a poor understanding of maternal, newborn, and child health and their link with HIV.

trengthened community pathways of referral and follow up S of pregnant women living with HIV from community-based organisations (CBO), non-governmental organisations (NGO) and faith-based organisations (FBO) to the health system.

ABOUT THE HIV/AIDS ALLIANCE IN SOUTH SUDAN Established in 1993, the International HIV/AIDS Alliance (‘the Alliance’) is a global partnership of nationally-based linking organisations working in over 40 countries, to support community action on AIDS in developing countries. The Alliance opened a Country Office in South Sudan (‘Alliance South Sudan’) in 2005. Alliance South Sudan works with 70 communitybased organisations (CBOs) in Central and Eastern Equatoria states and a further 20 CBOs in Western Equatoria and Bahr El Ghazal States. Through its partners, it provides services such as HIV prevention, condom distribution, referral for voluntary counselling and testing and care and support. Alliance South Sudan strengthens emerging civil society organisations through grants and organisational and programmatic support, and has a memorandum of understanding with the government to be the lead agency to strengthen the capacity of civil society in the HIV response. Additionally, it builds the capacity of County HIV/AIDS Commissions to strengthen coordination and service provision to adults and children in the Equatoria states. *The Alliance consists of a network of independent, nationally governed and managed linking organisations responsible for supporting and developing thousands of community organisations in more than 40 countries.

PROJECT PARTNERS AND SPECIAL THANKS TO South Sudan National Partnership Platform (NPP) Key Correspondents (KC) Team in South Sudan Action for Rights, Relief and Development (ARRD) Street Children AID Pageri Community

A strong partnership between civil society and the public sector is essential. Community-based responses contribute to the strengthening of the health system by filling some of its most essential gaps, such as developing referral systems for expectant mothers from villages to clinics and hospitals. Community-based organisations often reach where the state cannot, educating women and their families about maternal health and prevention of motherto-child transmission of HIV, and increasing the uptake of services by these women. The whole health care system benefits from this partnership.

A girl in South Sudan is more likely to die in childbirth than to complete primary school. No fact could more eloquently underline why the UN and the British Government have placed girls and women at the forefront of our development commitment to tackle global poverty. Andrew Mitchell, UK Secretary of State for International Development.

The message to government and donors is clear: integrated services for HIV and maternal, newborn and child health and community-based responses need urgent support. The International HIV/AIDS Alliance in South Sudan (Alliance South Sudan) was funded by UKaid from the UK Department for International Development (DFID) to implement the Reducing HIV-Related Maternal, Newborn and Child Mortality Project (MNCH project), which models a strong partnership between government and civil society organisations in the provision of health care. The project’s baseline study and learning from the community have informed this brief, which also provides recommendations for government and donors.

International HIV/AIDS Alliance in South Sudan Plot 11, Block 2E, Hai Malakal, Juba, South Sudan Tel: +249 913 70 80 38 Email: fbayoa@aidsalliance.org Registered charity no. 1038860 1

Health Services After decades of conflict, many health facilities lack basic equipment and most of the maternal and neonatal health workers (village midwives, traditional birth attendants, and maternal and child health workers) lack training and skills. Less than one in ten women has the recommended four antenatal visits.10 The network of clinics and hospitals is severely under resourced and is insufficient to provide adequate service even in accessible areas. Too few facilities provide prevention of mother-to-child transmission services for women living with HIV. There are also severe shortages of antiretroviral drugs and not enough voluntary counselling and testing services across the country. In 2010, only about 3,800 people living with HIV were receiving antiretroviral treatment.11 This situation is bound to get worse as funding from the Global Fund to fight AIDS, Tuberculosis and Malaria (Global Fund) for new individuals in need of treatment ended in South Sudan in July 2011 (this includes paediatric treatment in the case of pregnant women living with HIV).12 “We provide food and education for street children. Most of them are orphans of parents who died due to HIV-related diseases. They all have taken the test but not all those who need it are on treatment due to the shortages of ART. How can we teach these children the importance of testing if then we can’t provide them with the necessary treatment?” Charles Wani, Street Children Aid, Juba

Factors increasing maternal risks in the Republic of South Sudan HIV Conditions for HIV to spread among the general population have increased since the Sudan civil war ended in 2005. Surveys indicate that HIV prevalence rates in the Republic of South Sudan vary from 10% in areas bordering Uganda to less than 1% in central parts, with a rate of 6% in the capital city Juba.6 This pattern is linked to the return of refugees and internally displaced people, combined with increased cross border travel. Returnees are coming from Uganda, Central African Republic, Ethiopia, Democratic Republic of Congo, and Kenya, which all have relatively higher HIV prevalence rates.

Pregnant women and HIV

STIGMA AND LACK OF AWARENESS HIV-related stigma, and the discrimination that results from it, are a significant problem. Myths and misconceptions abound. People are fearful of having an HIV test, and some of those who are on treatment are reported to collect their medication from health facilities in another county or state. Discrimination on the grounds of social status also takes place:

I have only delivered one of my children in the hospital because the other two were born in the night when the clinic is closed, and the hospital is just too far. The women in this village know that if they deliver at night, they will have to do it at home and pray that there are no complications. Woman in Arapi village in Pageri Payam, some 50 miles from Juba.

“Many [women in the village] don’t want to deliver in the clinic because they have to pay for their maternity kit, but others because they feel insulted by the hospital midwives because they are peasants. At the hospital they tell you: ‘you are dirty, don’t you have new clothes?’, just because you are from a village”. Woman from a village in Eastern Equatoria State Young people do not have access to the information or services they need for sexual and reproductive health. While some men are supportive to their HIV-positive partners during pregnancy, male involvement in family planning is often low. “My husband forbids me to tell anybody. He is afraid that people will start talking about him having HIV if I say that I am positive. I feel very lonely. When they [community-based organisation] talk to him he says he will go to the clinic and do the test, but then he gets drunk and threatens to beat me if I speak of it.” Woman living with HIV, Eastern Equatoria State

HIV prevalence among pregnant women using antenatal services is more than 1%.7 Less than one in ten women has comprehensive knowledge of how to prevent HIV transmission and only 15% of women know that HIV can be passed on during pregnancy and childbirth.8

Maternal Mortality Maternal mortality is the highest in the world. An estimated 2,030 women die giving birth for every 100,000 live births (one in 50). Up to 95% of births take place without the assistance of skilled health personnel, which is particularly dangerous in the case of women living with HIV and their children.9 2

The government response The Republic of South Sudan has made significant steps towards providing comprehensive HIV services including voluntary counselling and testing, prevention of mother-to-child transmission services and antiretroviral treatment. There are 91 voluntary counselling and testing centres in 79 counties and 31 sites offering prevention of mother-to-child transmission services. However, the long distances and high costs of travel to these centres prevent women from using the services. Before the birth of the Republic of South Sudan, the previous Government of South Sudan formulated comprehensive policies on health, HIV, sexual and reproductive health, and maternal, newborn and child health (see table 1).

Table 1: Policies and strategies on HIV, sexual and reproductive health, and maternal, newborn and child health13 Health Component

Policy/strategy in place

Broad health and maternal, newborn and child health

• Health policy (2007-2011) • Maternal, neonatal and reproductive health policy and strategy (2009)

Sexual and • reproductive health •

Family planning policy (2009) South Sudan comprehensive national condom strategy (2010) • Draft reproductive health strategy (2011)

• South Sudan HIV/AIDS national strategic framework (2007-2012) and HIV and AIDS policy (2008) • Guidelines for the use of antiretroviral drugs in adults and children (2010) • HIV prevention strategy (draft); • Behaviour and communication change strategy (2008); • PMTCT implementation guidelines (2009) • Homecare care guidelines (2010)

HIV

In May 2011 the South Sudan Ministry of Health released the draft national reproductive health policy. The theme of the policy is ‘present and future prosperity through safe motherhood and healthy childhood’. It includes elements on sexual rights, freedom from coercion and violence and HIV. The Ministry of Health also made a pledge to integrate services: “The Ministry shall encourage, in the spirit of the comprehensive RH [reproductive health] approach, the involvement of males in family planning programmes and integrate Family Planning and HIV/AIDS in the existing services.”14 4

A PARTNERSHIP TO INTEGRATE COMMUNITY AND GOVERNMENT responseS TO HIV AND MATERNAL HEALTH “There is potential for the community to be mobilised and oriented in maternal, newborn and child health, and HIV and AIDS. The community can be part and parcel of the referral system. They can become empowered to make sure the referral system is good, in place and functional.” Florence Bayoa, Director, Alliance South Sudan When Alliance South Sudan began its work in 2005, the country was just emerging from conflict and very fragile. Civil society organisations were not ready to face up to the new challenges that peace would bring in fuelling the spread of HIV. In this complex environment Alliance South Sudan took a comprehensive approach, working in partnership with both the government and communities, and applying a community system strengthening approach. Community system strengthening promotes the development of informed, supportive communities and community-based structures that can contribute to the longer-term sustainability of health and other interventions at community level, complementing the strengthening of the national health system.

Community structures for security and accountability in post-conflict areas Community-based structures are key to strengthening communities’ own coping strategies in post-conflict areas. Communities play the biggest role in coping with, and responding to many threats, including health insecurity. Citizen action is often mobilised quicker and with less resources than formal public structures, and community structures tend to outlive government and other public sector ones. Strong civil society has a role to play in supporting strong justice and public awareness systems that protect the rights of the most vulnerable. This includes holding government to account at local and national levels for commitments made, and preventing corruption. In the absence of a strong private sector, communities in South Sudan have played and continue to play the biggest role in partnering with government and coping with, and responding to an unstable political and economic environment and poor health systems. Civil society organisations have been instrumental in creating the new Republic of South Sudan.

will campaign for the government of the Republic to fulfil its commitments in this area. NPP campaigning has also led for example to a commitment of the state government of Upper Nile to dedicate 5% of its budget to maternal health and prevention of mother-to-child HIV transmission.” Buay Yhat Yiol, NPP Chairperson With the involvement of over 20 citizen journalists (Key Correspondents), evidence and experiences from communities are also being heard in decisionmaking processes.

BUILDING COMMUNITY RESPONSES TO STRENGTHEN THE HEALTH SYSTEM Alliance South Sudan supports community-based organisations in seven of the country’s ten states to participate in decision-making and programme implementation at community and government levels. Community-based organisations fill important gaps that the health system cannot reach. They do so through:

Community awareness Through peer educators and community workers, community-based organisations establish a dialogue with communities to raise their awareness and information about health issues. This helps community members to become more responsible for their own health and to take action to hold the government to account for the services it should provide. As awareness increases so do referrals of HIV-positive pregnant women to the public health system.

Supporting the state’s leadership in health and demanding accountability As the lead agency strengthening civil society capacity on HIV in the Republic of South Sudan, Alliance South Sudan has a strong influence on the state’s HIV policies from national to community levels. Alliance South Sudan is the civil society representative in the South Sudan AIDS Commission on behalf of the South Sudan HIV and AIDS Network of NGOs. It is also a member of the Global Fund’s Country Coordinating Mechanism. A memorandum of understanding with the Vice-President’s Office makes Alliance South Sudan the recognised national civil society provider of HIV services, and it provides training on antiretroviral treatment to government health and home-based care providers. It also delivers HIV treatment, prevention, care and support programmes, and training for two state branches of the South Sudan AIDS Commission and state ministries of health, and six County HIV/AIDS Commissions and health departments. “The government is working hard to assist community-based organisations to facilitate their HIV programmes in the state.” Dr. Felix Wani, Director of HIV/ AIDS and STDs/STIs in the State Ministry of Health

When I am older, I don’t want to be a footballer like everybody else. I want to be a journalist to tell everybody about HIV, and tell all mothers that they should take the test and protect themselves so their children don’t end up in the street like me. 13-year-old boy at Street Aid, sub-grantee of the MNCH Project, Juba.

“Many women go to antenatal classes at the clinic, but after one or two they drop out because they decide not to deliver there or for lack of transport or because they are too busy working in the fields. That’s why it is so important that we get education on safe maternity here in the village and help us go to the clinic.” Woman, Pageri Payam

I want to tell people that I live with HIV and that it’s okay. I am getting my treatment and I am not dying. I am going to become a peer educator to convince other women of the importance of taking the HIV test and delivering in the clinic or the hospital. There are women who don’t want to take the test because they are afraid of being HIV positive. They say: ‘Why should I do the test if I don’t feel ill? Woman living with HIV, Eastern Equatoria

Community-based response Awareness on its own is not enough if women cannot reach services provided by the national health system. With the support of Alliance South Sudan, community-based organisations provide a range of services to communities, such as transport for women to attend health care facilities and delivery in clinics and hospitals, and follow-up with women and their families to make sure that they take their medication and attend antenatal classes. “I used to be frightened in the night that I might have to deliver at home. I am reassured that even if I am giving birth in the night a community organisation is going to provide a moto-ambulance for me to deliver in the hospital.” Pregnant woman, Arapi, Pageri Payam

However, Alliance South Sudan also is also helping civil society to hold the authorities to account for their commitments, using the National Partnership Platform (NPP). Made up of 28 organisations (over 20 of which are communitybased organisations), the NPP is the largest advocacy coalition of civil society organisations in the Republic of South Sudan. The platform is developing a campaign for maternal health at national and community levels and trying to influence the next national HIV strategy. It has successfully combined advocacy and social campaigning to hold the authorities to account at every level, from local to national. “In less than four months since it was created, the South Sudan NPP drafted most of the declaration that the government of the Republic of South Sudan made at the New York High Level Meeting on HIV and AIDS in June 2011. We 6

Recommendations To the Government of the Republic of South Sudan •

Implement the existing health policy (2007-2012) The government’s health policy provides a good framework for partnership with civil society, but it needs to receive adequate funding within the national budget. It also needs to be rolled out so that health and community workers are trained on HIV, sexual and reproductive health, and other related policies.

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Build up the chain of referrals Health provision is inconsistent and hospitals are overcrowded because of gaps that break the chain of referrals, especially at the first level of primary health. As a priority there must be at least three well-mapped primary health care units in every Boma (which usually includes around seven villages).

Community response in action: ACTION for Rights, Relief and Development (ARRD)

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ARRD is a community-based organisation in the Pageri Payam district of Eastern Equatoria State. It works in an area of around 23,000 inhabitants and a radius of over 100 miles. There are around eight clinics in the area, but only one provides prevention of mother-to-child transmission services. The closest hospital, in Nimule, is around 40 miles away.

The government should introduce, in consultation with civil society, a community system strengthening framework that can be included in the next health policy. This should have a special focus on technical and financial support for community-based organisations carrying out community sensitisation; referrals, follow up and co-ordination; and provision of transport to health facilities.

Without the work that ARRD provides as a sub-grantee of the DFID-supported MNCH project – increasing awareness of health services, referring clients, and providing transport – safe maternal health care provision in the area would be nearly impossible:

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Uptake of health services by women Many women in the area are unaware of the risks of delivering at home. Most rely on traditional birth attendants; others who want to give birth in a clinic or hospital cannot afford to pay for the maternity kit (which includes gloves, containers, medication, razors and other utensils). It is obligatory for pregnant women to have an HIV test in hospital, and for their husbands to accompany them, and many men and women are put off by this prospect. Through peer educators and community discussions every month, ARRD increases families’ knowledge about the importance of HIV testing for women and men, and the need to prioritise it.

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Referrals and transport Without ARRD, which provides home visits and referrals, the only way pregnant women would have their needs assessed is if they went to the clinic themselves. Once at the clinic these women would be asked to return for check-ups (especially for prevention of mother-to-child transmission in the case of HIV-positive women) but there would be no follow up with the women to ensure that they had kept to the regime. The same applies to referrals from the clinic to the hospital. The transport provided for pregnant women by ARRD is also essential. Without enough money or vehicles, most women would not deliver in the clinic or hospital. Since the beginning of 2011, ARRD has made and followed up on 164 referrals.

Strengthen community systems

Budget for sexual, reproductive and maternal health The government should prioritise health care provision in its annual budget at all levels. In particular, maternal health care, which is integrated into HIV, sexual and reproductive health, and broader health systems strengthening, must be provided more widely across the country.

Widen the provision of voluntary counselling and testing and prevention of mother-to-child transmission The government should urgently increase the provision of these services in health care facilities across the country. It should make them more accessible to women and their children by providing all related services in the same facilities. These services should include: HIV prevention programmes for all women and men of reproductive age, family planning to prevent unintended pregnancies, HIV testing before conception or during antenatal care, safer delivery for women with HIV in a health facility, education on safer infant feeding, and post-natal care and treatment for mothers and infants with HIV.

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Respond to the shortage of antiretroviral treatment The government should respond to the imminent shortage of antiretroviral treatment, finding resources to guarantee coverage for new individuals requiring treatment (including paediatric treatment) across the country, and providing lifelong treatment to mothers living with HIV. 9

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Integrate HIV and sexual and reproductive health services (including maternal, newborn and child health), across the entire primary health system. This integration should be reflected in all health-related policies, which should coordinate the various government bodies dealing with different areas of health care.

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Fulfil the commitments of the South Sudan declaration on HIV and AIDS and the Political Declaration on HIV and AIDS made at the High Level Meeting on HIV and AIDS in New York in June 2011.

To development partners and donors •

Health security can help build the new republic Prioritise health security as a key element for stability and development in the support provided to the Government of the Republic of South Sudan.

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Support community systems strengthening Provide specific financial support for public and civil society initiatives for community systems strengthening. This should be part of addressing HIV, strengthening health systems and civil society’s role in governance and public accountability.

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ENDNOTES

Promote integration

* 1

The Government of South Sudan was formed in 2005 with the Comprehensive Peace Agreement that put an end to Sudan civil war between north and south. With the creation of the new republic in July 2011, it became the Government of the Republic of South Sudan.

Reuters (2007), ‘Maternal mortality highest in South Sudan-UN’, 6 June.

McIntyre, J. (2005), Maternal Health and HIV, Reproductive Health Matters, 13 (25).

Hogan, Margaret C., Kyle J. Foreman, Mohsen Naghavi, Stephanie Y. Ahn, Mengru Wang, Susanna M. Makela, Alan D. Lopez, Rafael Lozano, Christopher J.L. Murray (2010), ‘Maternal mortality for 181 countries, 1980-2008: a systematic analysis of progress towards Millennium Development Goal 5’, The Lancet, 375 (9726): 1609-23.

The baseline used both quantitative and qualitative data collection methods drawing from secondary documentary data, key informant interviews, Knowledge, Attitude, Practices (KAP) surveys, a capacity needs assessment, and policy mapping.

UNAIDS (2010), ‘Global report: UNAIDS report on the global AIDS epidemic 2010’, Geneva, accessed on 19 July 2011 at http://www.unaids.org/globalreport/documents/20101123_GlobalReport_full_en.pdf

ibid.

Ministry of Health of South Sudan (2011), National Reproductive Health Policy (draft), May.

Reuters (2007), ‘Maternal mortality highest in South Sudan-UN’, 6 June.

Provide specific support for programmes that integrate HIV, sexual and reproductive health, and mother, newborn and child health.

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Address the shortage of antiretroviral treatment Provide urgent financial support for the provision of antiretroviral treatment (with a special emphasis on paediatric treatment for pregnant women living with HIV), voluntary counselling and testing, and prevention of mother-to-child transmission across the country.

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Promote the partnership model The Reducing HIV-Related Maternal, Newborn and Child Mortality Project provides a transferable model for the inclusion of communities in health system strengthening, health education, stigma reduction, and efficient referral through clinical pathways, which should be supported and scaled up. Donors should continue to support this project and promote the model regionally and internationally.

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Budget support for health Make special provision for the health within budget support for the Government of the Republic of Southern Sudan. Health should account for a significant part of the budget and there should be substantial budget provision for maternal, newborn and child health care.

Ministry of Health of South Sudan (2011), National Reproductive Health Policy (draft), May.

UNDP (2011), ‘Fozia fights back against HIV’, accessed on 19 July 2011 at www.beta.undp.org.

Antiretroviral treatment was provided under Round 4 of the Global Fund’s grants. The Global Fund has agreed an extension of treatment provision but only for those people who are already receiving it.

International HIV/AIDS Alliance (2011), Adapted from the South Sudan Baseline Survey: Reducing HIV-related maternal and child mortality.

Ministry of Health Government of the Republic of South Sudan (2011), National Reproductive Health Policy (draft), May, p. 18.

ABOUT NATIONAL PARTNERSHIP PLATFORMS

‘What’s Preventing Prevention?’ is a campaign of the International HIV/ AIDS Alliance. Our mission is to support community action to prevent HIV infection, meet the challenges of AIDS, and build healthier communities. That’s why we’re calling on donors and governments to guarantee a more effective HIV prevention response that enables groups that are at higher risk of being infected or affected by HIV to access prevention services and realise their rights. The campaign has three strands:

The National Partnership Platforms (NPPs) are an approach to advocacy work that create the space for effective dialogue between civil society, government, and other stakeholders built upon equal exchange and are grounded in transparency and accountability. In one country, a group of civil society organizations agree to come together in an informal partnership to share information, discuss and debate key issues and jointly prioritise and carry out advocacy.

BETTER FUNDING Donors need to increase the proportion of their funding for HIV prevention interventions that reach communities at higher risk of HIV.

The partners within the NPPs are linked by a common advocacy agenda and a shared set of tools that facilitate the process of partnership building and guide the implementation of activities. The NPPs are linked to the Key Correspondents (KC) team which is a vibrant network of community-based writers. KCs contribute to the NPP and its common advocacy agenda through a number of factors which include bringing community perspectives to the national level, facilitating genuine dialogue and discussion, as well as being a conduit to local and national media.

REMOVE BARRIERS National governments need to remove the political and social barriers that stop people from accessing prevention services.

OUR SAY Communities at higher risk of HIV must be able to participate in decision-making around HIV prevention programmes. This is the best way to ensure services meet their needs. For more information, to take action or to join the discussion, please visit: www.whatspreventingprevention.org

Acknowledgements: This campaign brief was written by Enrique Restoy, Kate Hawkins and Alison Dunn. Photo credits: All photos ÂŠ International HIV/AIDS Alliance, 2011 For more information, contact: mail@aidsalliance.org

Information contained in this publication may be freely reproduced, published or otherwise used for non-profit purposes without permission from the International HIV/AIDS Alliance. However, the International HIV/AIDS Alliance requests that it be cited as the source of the information. ÂŠ International HIV/AIDS Alliance, 2011