Editorial

In a 2015 report on the Representation and Participation of Key Populations on Country Coordinating Mechanisms (CCMs) in Swaziland, Lesotho, South Africa, Botswana, Zimbabwe and Zambia, (http://tinyurl.com/obuudjv) Aidspan noted that key population representatives (KPRs) “have often in the past been seen as somewhat token CCM members” and that “their ability to contribute, and the quality of their participation in the processes of these bodies [is] unclear”.

We believe indeed that building the capacity of KPRs to contribute their indispensable share to the governance of Global Fund-supported programs is a central condition for achieving the vision of ending HIV, tuberculosis and malaria as public health threats by 2030.
Women and girls, men who have sex with men, people who inject drugs, transgender people, sex workers, prisoners, refugees and migrants, people living with HIV, adolescents and young people, orphans and vulnerable children… Giving those groups a voice by opening the doors of CCMs to their representatives is a major step in the right direction. But to unleash their potential to be heard and become a trusted force for change, they need support to build essential skills and competencies.

The Global Fund and its success against AIDS, TB and malaria owe a lot to the extraordinary contributions of civil society representatives worldwide. With the new rules of engagement in the Global Fund governance systems, activists with high levels of formal education are now making room for a new generation of civil society representatives, whose level of preparedness varies considerably, as highlighted in the Aidspan report. These new arrivals must absorb a tremendous volume of information and data that is made available, at an increasing speed, about the Fund, its partners and health-related issues.

A variety of toolkits, manuals, guidelines, tutorials and training workshops has already been produced around Global Fund policies and processes. But these good initiatives are scattered, developed separately, written primarily in English, sometimes in French and Spanish, and generally not designed with a focus on the specific needs of less-educated or extremely marginalized groups. Let’s face it: how many KPRs have been efficiently trained through sporadic two or three-day workshops? How many have excelled basing their knowledge and understanding of program implementation through Global Fund orientation sessions? Self-education and workshops cannot by themselves be substitutes for a better structured and adapted training curriculum for KPRs.

In a 2014 study on the engagement in the funding model of key populations from 11 countries (at http://tinyurl.com/qxwuzd7), the Global Fund Board’s communities delegation observed: “In cases where community representatives had received capacity building over the longer term, KPs were empowered to engage, raise concerns, challenge existing power structures and decision making processes and influence final outcomes. In cases where capacity building was lacking, KP representatives were engaged only in a tokenistic way and faced stigma during the process, labelled as incompetent and seemingly reinforcing negative preconceptions about key affected communities”.

KPRs have access to extended networks and an intimate knowledge of the needs and priorities of some of the most hard-to-reach communities. They bring a unique expertise that other CCM members, be they doctors, academics, government representatives or other high-level officials don’t have. But to make the most of it, to enter CCM discussions confidently and influence public health decision-making in a credible way, they must learn to speak the language spoken at CCM meetings and in public health circles. They need to master the technical complexities of Global Fund procedures and be fully at ease with using the language of decision makers to represent the interests of their groups. This needs long-term capacity building.

We see four main components for such a curriculum, which could be conceived as a training-of-trainers program to reach out to members of marginalized communities in their own languages. Program management, from design to evaluation, is an area where KPRs and communities can bring true innovation, especially in monitoring and qualitative program evaluation. Good governance of their own community organizations is another essential component of their credibility. Advocacy is a third area that requires special skills, especially in the context of a complex international multistakeholder partnership. To develop and implement effective strategies that attract attention to their cause or to play constructive watchdog functions, KPRs must be able to conduct needs assessments and evaluations of service delivery systems, notably public ones.

Underlying those three areas, the importance of information literacy cannot be overstated. To keep learning, KPRs must develop essential skills to navigate their way through a vast and expanding array of information resources (websites, social media channels, mailing lists, databases, etc.). This is critical to building their networks, understanding where their priorities fit in the bigger picture, and keeping a strategic watch over the most relevant developments in their field of interest while avoiding information overload.

This may seem like a formidable challenge. The good news is that today’s internet offers cheap and reliable channels to deliver certified courses in multiple languages at no cost to participants, to connect to a global and diverse audience, reaching out to distant individuals at their own pace and offering a space for networking with their peers around the world. Although face to face training will remain indispensable to provide more targeted support, open online courses can offer an extraordinary channel to deliver training to very large groups, to monitor its results and to address concerns over fake, ineffective and costly training. The KPRs’ skills and knowledge gaps, as well as the technology to deliver a program that addresses them, can quite easily be figured out. For the Global Fund and its partners, it is mostly a matter of making this a priority and investing in the design and development of a curriculum for maximum impact, in a coordinated way.

Community leaders and KPRs represent the untapped ‘human resources’ of current and future public health efforts. By pooling together different capacity building initiatives and internet possibilities, public health training for KPRs is at our grasp. Let’s support their capacity to be heard, if we really hope to win the fight against disease.

A longer version of this post was published in Aidspan’s Global Fund Observer newsletter Issue 266 28 May 2015 http://tinyurl.com/pd7bhz3 and in R. Bourgoing’s Aid Transparency blog at http://tinyurl.com/owr4qb2 and it has been used with the authors permission. Hélène Rossert is a US-based Global Fund advocate and former Vice Chair of the Global Fund Board. Robert Bourgoing is an aid transparency advocate and trainer, and former Manager of Global Fund Online Communications.

We remember you in Maputo, in the 1980s, from that time you spent as a political refugee in Mozambique. Often our paths crossed on Julius Nyerere Avenue and we would greet each other with the casual friendliness of neighbours. Often I imagined the fears that you must have felt, as a person persecuted by the apartheid regime. I imagined the nightmares you must have experienced at night when you thought of the ambushes plotted against you and against your comrades in the struggle. But I don’t remember ever seeing you with a bodyguard. In fact it was we Mozambicans who acted as your bodyguards. For years we gave you more than a refuge. We offered you a house and we gave you security at the cost of our security. You cannot possibly have forgotten this generosity.

We haven’t forgotten it. Perhaps more than any other neighboring country, Mozambique paid a high price for the support we gave to the liberation of South Africa. The fragile Mozambican economy was wrecked. Our territory was invaded and bombed. Mozambicans died in defence of their brothers on the other side of the border. For us, Mr President, there was no border, there was no nationality. We were all brothers in the same cause, and when apartheid fell, our festivities were the same, on either side of the border.

For centuries Mozambican migrants, miners and peasants, worked in neighbouring South Africa under conditions that were not far short of slavery. These workers helped build the South African economy. There is no wealth in your country that does not carry the contribution of those who today are coming under attack.

For all these reasons, it is not possible to imagine what is going on in your country. It is not possible to imagine that these same South African brothers have chosen us as a target for hatred and persecution. It is not possible that Mozambicans are persecuted in the streets of South Africa with the same cruelty that the apartheid police persecuted freedom fighters, inside and outside the country. The nightmare we are living is more serious than that visited upon you when you were politically persecuted. For you were the victim of a choice, of an ideal that you had embraced. But those who are persecuted in your country today are guilty merely of having a different nationality. Their only crime is that they are Mozambicans. Their only offence is that they are not South Africans.

Mr President, the xenophobia expressed today in South Africa is not merely a barbaric and cowardly attack against “the others”. It is also aggression against South Africa itself. It is an attack against the “Rainbow Nation” which South Africans proudly proclaimed a decade or more ago. Some South Africans are staining the name of their motherland. They are attacking the feelings of gratitude and solidarity between nations and peoples. It is sad that your country today is in the news across the world for such inhuman reasons.

Certainly measures are being taken. But they are proving inadequate, and above all they have come late. The rulers of South Africa can argue everything except that they were taken by surprise. History was allowed to repeat itself. Voices were heard spreading hatred with impunity. That is why we are joining our indignation to that of our fellow Mozambicans and urging you: put an immediate end to this situation, which is a fire that can spread across the entire region, with feelings of revenge being created beyond South Africa’s borders. Tough, immediate and total measures are needed which may include the mobilization of the armed forces. For, at the end of the day, it is South Africa itself which is under attack.

Mr President, you know, better than we do, that police actions can contain this crime but, in the current context, other preventive measures must be taken. So that these criminal events are never again repeated.

For this, it is necessary to take measures on another scale, measures that work over the long term. Measures of civic education, and of exalting the recent past in which we were so close, are urgently needed. It is necessary to recreate the feelings of solidarity between our peoples and to rescue the memory of a time of shared struggles. As artists, as makers of culture and of social values, we are available so that, together with South African artists, we can face this new challenge, in unity with the countless expressions of revulsion born within South African society. We can still transform this pain and this shame into something which expresses the nobility and dignity of our peoples and our nations. As artists and writers, we want to declare our willingness to support a spirit of neighbourliness which is born, not from geography, but from a kinship of our common soul and shared history.

This editorial is reproduced from Brittle Paper and is an open letter addressed to President Zuma, written by award-winning Mozambican novelist Mia Couto.

One question being asked in relation to the recently adopted Sustainable Development Goals (SDGs) is how they relate to human rights based approaches. In the health sector for instance, SDG 3 aims to ensure healthy lives and the promotion of well-being for all ages. This includes a target of reducing the global ratio of women dying in childbirth to less than 70 in every 100 000 live births. While maternal mortality has fallen by almost 50 per cent since 1990, fourteen times more mothers do not survive childbirth in developing countries than in developed countries.

By 2014, Uganda’s maternal mortality rate was amongst the highest, with 360 mothers dying in every 100 000 live births, according to Uganda’s 2014/5 Annual Health Sector Performance Report. The country has failed by a large margin to realise the target set for maternal mortality in the Millennium Development Goals (MDGS), and what should be a healthy reproductive event continues to claim women’s lives in the country. The 2014 figures indicate that 6 000 Ugandan mothers die in childbirth annually, which is an average of sixteen daily, or one death every 90 minutes.

There have been a number of promising policy statements and interventions suggested by government to address this unacceptable level of mortality. Bottlenecks in the financing, delivery and uptake of maternal health services have however led to a shortfall in the delivery of these interventions. We view this situation as a complete failure by the state to deliver its constitutionally mandated obligations under Article 33 of the Constitution to provide the facilities and opportunities needed for women to realise their full potential; and to protect women and their rights, including their reproductive rights and functions in society.

The shortfall in maternal health services has been a focus of civil society advocacy in Uganda for some time. Civil society has consistently argued for the state to resolve the poor conditions in which mothers have to give birth in Uganda. It has used a human rights based approach in this, framing the demands in the language of legal rights and constitutional obligations. There is evidence of some success in this. A group of civil society organisations, led by the Center for Health, Human Rights and Development (CEHURD), acting together with two aggrieved families brought before the courts the deaths of two mothers. This was led as a constitutional challenge, arguing that the deaths occurred as a result of failures in the health system to provide basic commodities for safe deliveries. In this case, the Supreme Court directed the Constitutional Court to hear the case, on the basis that the failure by the government of Uganda to provide women with basic essential care was being challenged as a contravention of Uganda’s Constitution and the women’s rights.

The legal battle did not go without challenges. There were constant delays, with frequent adjournments due to non-appearances by the state or the failure to assemble a full panel of judges to hear the case. The state objected to the case, claiming that the judiciary had no authority to question the political decisions of the state. Initially the Constitutional court agreed with the state and dismissed the case. This was, however, reversed on appeal to the Supreme Court. In his judgment at the Supreme Court, Chief Justice Bart Katureebe stated that “….if a citizen alleges that a health policy or actions and omissions made under that policy are inconsistent with the constitution…., then the constitutional court has a duty to come in…”. The case is thus now before the Constitutional Court, as directed by the Supreme Court. The process to date raises an important point of law for the SDGs, and particularly Goal 16. This goal focuses on promoting peaceful and inclusive societies for sustainable development. It emphasizes access to justice for all and building effective, accountable and inclusive institutions at all levels. For the health sector, traditionally a reserve of public health and medical actors, the SDGs and human rights approaches indicate that other actors will now have a significant role to play.

The experience in Uganda already raises learning on this: The court process motivated civil society to advocate for health issues with one voice. It created awareness that social and economic rights are justiciable in Uganda, and that citizens can seek justice in the courts if other arms of government do not deliver on their obligations. The Ministry of Health has since pushed for increased funding for maternal health and parliament has made resolutions to support increased health financing and asked government to recruit more health workers to strengthen health services. The Ministry of Health has also now developed guidance on the mainstreaming of human rights in the provision of health care in Uganda.

The judiciary has also increased its understanding of health rights. Subsequent court judgments have, for instance, pronounced that access to emergency obstetric care is a human right, which was not the case previously. The courts have also held a local government authority accountable for a mother’s death where it failed to properly supervise the health professionals falling within its mandate.

While there is still a lot to be done, and while the constitutional case is still pending, the experience indicates that framing health demands in the language of legal rights and constitutional obligations, including through litigation and other legal processes, can assist to place health rights as a more central issue for the court of judges and the court of public opinion. Our experience indicates that such human rights based approaches have a role to play in taking action to implement global goals to ensure healthy lives and the promotion of well-being for all ages.

Please send feedback or queries on the issues raised in this briefing to the EQUINET secretariat: admin@equinetafrica.org.

South Africa is in a process of transforming its health system from a centralised and largely curative model to a district health system implementing primary health care and addressing the social determinants of health. The strategies for this depend on an effective district health system, and this in turn depends in part on the role given to communities in health. But who shapes this role?

Public participation in health is covered in the country’s law and policy. South Africa’s 1996 Constitution provides for the right to health, health care, participation and association, and for public participation in policy-making. The 2003 National Health Act provides for participation at community level in clinic and community health centre committees. The 1988 Municipal Structures Act and the 2000 Municipal Systems Act create mechanisms within local government for communities to participate in decisions on local community developments through ward committees and local government councillors. These frameworks for participatory democracy need follow up to realise them in practice.

In September 2014 a National Colloquium found that while many provinces have established committees, there is a lack of clarity on their roles, affecting their functioning. The Department of Health at national level issued draft guidelines for HCCs in 2014 to address this gap. In the Eastern Cape, a policy was published in 2010 on the establishment and functioning of clinic and community health centre committees. It describes the roles, linkages, reporting and accountability of those in the committees. The policy seeks to involve communities in the planning and provision of health services, as a link between the community, health facility, and district health council and to foster co-operative governance. It sets out the community representation in the committees, drawn from women, the religious community, youth, non-government and community based organisations, traditional health practitioners and disabled people, with flexibility to include social groups relevant to the local context. This structure, while set in policy, is only slowly being operationalized in the districts. While in some districts the HCCs may be less functional, in the Nelson Mandela Bay Health District, where additional support has been provided by the university to the fifty clinics, all the committees except one are functional. Forums are held at sub-district and district level, as required by the policy, to monitor and support the committees and their members.

Communities in the Eastern Cape have played a role in formulating and implementing the guidance on their roles and functioning in the committees. In the Nelson Mandela Bay Health District, for example, health committees had been operating since 1996 but in a haphazard and variable manner, without guidelines for their functioning and erratic staff and management support. This frustrated members. In 2006 a team from the Eastern Cape Provincial Department of Health invited health committee members, health service, local government, community and other local stakeholders to a meeting to contribute and to provide substance to the policy on health committees. This workshop served to frame the draft policy, which was later sent to all districts for discussion before further review and feedback by HCC representatives. The amendments made in this process were integrated into the final policy that was adopted in 2009by the legislature in the province and published in 2010.

The policy provides for three-yearly review. In 2014 a review was initiated with HCC members, in consultation with the province. Workshops were held with the committees, facilitated by University of Cape Town. These reviews helped to make the policy more accessible, to support understanding of roles amongst HCC members, to raise roles that had been overlooked, challenges in implementation of functions and suggestions on improvements. It demonstrated tangibly to HCC members that their voices can be heard in amending and adapting policy to improve it. Reviewing the policy also made the HCC members clearer on how to monitor its implementation and the duties of service providers.

Some issues were raised during the policy review: Greater support was urged from facility managers and local government councillors who were seen to be critical members for the functioning of committees, but inadequately involved. Communication between communities and services was observed to be weaker than set in the policy. Community members were found to distrust the complaint box process where HCCs monitor the opening of complaints boxes, recording and resolution of complaints. The committees noted that very limited resources are made available to support their work, including for transport, communication or capacity development. The HCCs made various proposals in the review, to ensure include processes for establishing committees and re-election every three years; to formally recognise HCC members; to make the reporting obligations of facility managers clearer; to include ongoing capacity building and skills development in the policy and to proactively support opportunities to discuss and engage with local communities and give feedback on issues to communities to build confidence in the system.

The process taught lessons about how people can shape and use their policies for participation on health. HCC members feel empowered when they know policies, not only to understand their own roles and responsibilities, but to ensure that they are enforced and that service and local government personnel are accountable for their roles.

Please send feedback or queries on the issues raised in this briefing to the EQUINET secretariat: admin@equinetafrica.org. For more information on the issues raised please visit www.equinetafrica.org.