Report by the NGO Delegation
Delivered by Musah Lumumba, NGO Delegate, Africa
Dear Fellow Board Members,
As the NGO Delegation to the UNAIDS PCB, we bring unique, first-hand experiences and perspectives of individuals and communities most impacted by the AIDS Epidemic. Each year, we develop and present a report focusing on one or more issues of particular interest/ and or urgency for the communities we represent: people living with or affected by HIV/AIDS. One of the added values of having us, as civil society and communities on board, is to highlight the inequity and neglect faced by individuals and communities that are disproportionately impacted by the AIDS epidemic. Thus, this is the basis for the 2017 NGO Report – The UNAIDS we need must leave no one behind: Getting to zero includes all of us (the 10/10/10).
One may ask, what do we need from UNAIDS and who are the 10/10/10?
As we are all aware, we are ushering in results around implementation of the UNAIDS treatment targets, or more popularly known as the 90-90-90, with some countries already celebrating successes of meeting these targets. However, when we look purposefully, we realise that some of us are being left behind and/ or are at the verge of being left out in the future because of specific barriers to our access to essential prevention, care and treatment.
In addition, earlier this year, the Joint Program embarked on the process of refining its operation model and as such, individuals and communities which have for long been at the margins of the response who wish to ride on the Global Review Panel’s recommendations, seize this moment and assume the driver’s seat moving forward.
To share with you some background, similar to previous NGO Reports, from July to August, we reached out and held consultations with almost 300 people, from all corners of the world, from all sorts of backgrounds and circumstances, all members of the communities we represent.
The vast majority of individuals who were interviewed or who participated in focus group discussions and interviews were from communities and key populations left behind. Most of our respondents were from small, local community-based organizations (CBOs), while others were from larger global, regional, or national networks and organizations. This report is not intended as a comprehensive review. However, it seeks to shed light on the realities of communities left behind, as well as to contribute to debates and strategies by presenting various viewpoints and experiences, needs and demands of key affected communities and populations that are currently left lacking.
Colleagues, not responding to the needs of those in most critical vulnerable conditions would represent a continued failure from the perspectives of equity, human rights, public health, and an adequate response to the epidemic. We continue to document and report that, people left behind are not a homogenous group: our characteristics differ by context, but we are people living with HIV in our diversities, we are indigenous peoples, ethnic members of Key populations including transgender women, and migrant gay and other men who have sex with men, adolescent girls and young women, boys and men, sex workers from rural areas, and people who use drugs who may also be living with HIV, undocumented migrants and refugees, people in prisons and other areas of incarceration.
The extreme neglect and vulnerable conditions faced by the communities I have mentioned above, are exacerbated by the lack of data and other information about them; social, cultural, economic, legal and political barriers; and stigma and discrimination. As the NGO delegation therefore, we believe that an improved and sustained impact requires acknowledging and understanding the interlinked nature of these different vulnerabilities, which should inform our policy and programming towards improved engagement with communities and individuals left behind.
Disheartening as they are, such results do not tell the entire story. Another study of progress toward 90–90–90 targets has urged caution in interpreting results. It notes that although several countries have achieved the targets and others are on the verge of doing so, “in many countries a significant proportion of people living with HIV still remain undiagnosed and therefore unable to benefit from HIV therapy” and call for “more efforts to reach these undiagnosed individuals.”
Remarks of this sort underscore the fact that, although the 90–90–90 targets may be valuable advocacy and programmatic goalposts, achieving them should not be construed as solving or controlling HIV. The rest of the road to truly curbing AIDS—and reaching the millions of people who do not have access to treatment or prevention services or support—will be very difficult. That is because many of the major gaps will continue to exist among key and other populations in highly vulnerable conditions who have always been most severely affected by HIV, yet tend to be ignored in HIV responses due to reports that do not show the true severity of the situation.
During one of our focus group discussions in Uganda, one youth leader had this to say: “If we don’t disaggregate key populations by age, the adolescent and young members will always be left behind, as they are not able to access services due to cultural, legal and socio-economic barriers like age of consent or recognition. For example, adolescent sex workers and young girls at institutions of higher learning who are always targets for rich sugar daddies (cross-generational sex), yet these adolescent girls and young women are not recognized as mainstream sex workers.”
The upshot is clear: as countries scale up their HIV programmes to reach the Fast-Track targets, they are unlikely to achieve strong, sustainable results unless they recognize and address the barriers and challenges faced by individuals and populations that are being left behind. They have to respond in ways that improve the access to comprehensive and quality rights-based HIV prevention, treatment and care of these individuals and communities, currently left behind. This will require an HIV response that is interlinked with other sectors.
Colleagues, the key areas that we are highlighting in the report are intersectionality, inclusion and context, in relation to HIV vulnerability and being “left behind”.
Indigenous people. Indigenous People are generally looked at, as tribal minorities (e.g. in India) and groups who were native to a region or country before the arrival of a different group or groups who then became politically, socially, economically and culturally dominant. Indigenous peoples often are culturally and socially marginalized, and their specific worldviews and social systems are seldom recognized in health strategies and engagements. For instance a 2015 study noted the disproportionate HIV vulnerability experienced by indigenous peoples in Canada: “Indigenous peoples make up 4.3% of the Canadian population yet accounted for 12.2 % of new HIV infections and 18.8 % of reported AIDS cases in 2011.”
Migrants and other mobile populations both with regular and irregular status are in conditions that create or increase their vulnerability due to the structural obstacles they face in accessing HIV services, and the stigma and discrimination they experience in many aspects of life, including in healthcare settings. This vulnerability is aggravated in the case of undocumented migrants who have to survive outside the “system” and who having limited or no access to formal services. Even in academic publications, the lack of data on sub-populations within migrant populations has been noted.
Young people––usually in generalized terms, though sometimes more specifically, such as “young people among key and affected populations. An online survey respondent from Rwanda, noted that; Young people below the age of 35 represent more than 65% of Africa’s population. This offers the continent with a unique opportunity to leverage its economic, social and political development. Which is why adolescent girls, young women and young people who account for the biggest percentage of new HIV infections in Sub Saharan Africa should be a key population regardless of their backgrounds, social lives, sexual orientation, gender identity, cultural background, economic status, religious affiliation or education.
Why are these groups or populations “left behind”? Are they hard to reach for HIV programmes? or they are just easy to ignore??
Responses vary, but there are many common themes, including social, cultural, economic, political and legal aspects, stigma and discrimination; human rights violations; and poverty. Many respondents also referred to “conservative ideology”, either across society as a whole or dominant within some governments, and fundamentalist religious movements etc.
Other reasons were also cited, included
- Lack of specific or targeted strategies or support to engage the population(s)
- Lack of support for population-driven responses that take a “nothing about us without us” approach, including the Greater Involvement of People living with AIDS (GIPA) principle;
- Lack of funding for CBOs that work with the most vulnerable populations; and
- Negative influence of some religious groups (a factor mentioned frequently by Latin American and Caribbean interviewees and respondents to the online survey).
Lack of data for and about many groups of people who are disproportionately vulnerable to HIV is one of the major hindrances to informed and inclusive policy and programming in the HIV responses. For instance too little is known about how many people are at risk, why they are at risk, and how those barriers can be overcome most effectively. Data that do exist are often not disaggregated (e.g. by age, sex or the type of specific vulnerability) and therefore are of limited use for designing targeted interventions and programmes. As one respondent from the Asia–Pacific region framed it: “If we don’t disaggregate key populations by age, the adolescent and young key populations will always be left behind, as they are not always able to access the available services for key populations due to legal and cultural impediments.”
There are a few critical areas where UNAIDS needs to immediately refocus its approach to ensure an improved, more inclusive and more efficient global response. One major role UNAIDS has always played, yet can improve on, is that of a mediator or convener between communities of PLHIV and other key populations and governments. This is particularly crucial in situations that require urgent attention: for instance, the “war on drugs” in the Philippines and the ongoing health emergency in Venezuela. Without a full understanding of the importance of putting communities and civil society at the centre of the local and national HIV response, UNAIDS and governments will not be able to address the needs of the missing populations and those left behind.
UNAIDS needs to clarify its role as an “honest broker” in bilateral and other donor relations in the country to ensure that no one is left behind, and it needs to “show they can add value”. By being active participants in Country Coordinating Mechanisms, PEPFAR COP processes and other donor mechanisms, UNAIDS can ensure more equitable distribution of resources particularly for key population organisations and networks and NGOs.
In the spirit of not leaving anyone behind, we request UNAIDS to begin challenging itself in how it operationalizes the principle of “leaving no one behind”, in particular treating communities as people who experience intersecting and varying levels of vulnerabilities. In this sense, it will challenge the way we collect information, challenge the way we support Member States, and perhaps challenge the way UNAIDS positions itself especially in challenging political environments. There is also a need towards improved and harmonised approaches for continued support for the participation all communities in HIV responses.
- “Help communities to advocate for smooth transition from donor to state funding, as well as the necessary legislative changes.” (Interviewee from eastern Europe and central Asia, community sector)
- “[Provide] more support for key population organizations and not just those under their definition, but at the national level as well, such as young women and girls and women in difficult circumstances.” (Interviewee from Latin America and the Caribbean, community sector)
- “UNAIDS is in a unique position to intervene on legal and regulatory barriers to access. They should take a lead on these. Helping governments better allocate their budgets according to their epidemics. (Interviewee from Europe, migrant community sector)
- “Provide technical assistance to capacitate the communities on how to understand and appreciate the data.” (Interviewee from Asia-Pacific, community sector)
- “Draw attention to the regional issues of from eastern Europe and central Asia, especially the issues around harm reduction. UNAIDS should do the political and diplomacy fight in the region for the region.” (Interviewee from international civil society organization working in the from eastern Europe and central Asia region)
There is a need to improve the governance of the Joint United Nations Team on AIDS at country level to provide flexibilities that can enable it to increase attention on populations that are left behind. The NGO Delegation is concerned that any reduced importance of UNAIDS can lead to reduced focus on HIV. To avoid such an outcome, civil society, communities and UNAIDS must work together in a constructive way. Supporting civil society to participate in Joint Annual Reviews, AIDS Development Partners’ Meetings, as well as Joint UN Support for National AIDS Programmes Coordination Committees, could be one way of involving important community and key population actors more closely to ensure that no one is left behind.