June 30, 2016
PRESENTATIONS AND INTERVENTIONS BY CS OBSERVERS
PANEL 1: SHAPING THE DEBATE
Talking points of Robin Montgomery (Interagency Coalition on AIDS and Development)
Moderator Question to Robin: What have been the strengths and the challenges of working in a broad coalition to advocate on domestic and global AIDS policy, and how can these diverse civil society groups be better supported in their advocacy?
- An intriguing question. To contextualize the question, I thought it would be interesting to consult with other coalition-based organizations on their thoughts and experiences. So, in my comments today, I am speaking on behalf of the International Council of AIDS Service Organizations (ICASO), STOPAIDS, UK, STOP AIDS Alliance, and my organization, the Interagency Coalition on AIDS and Development (ICAD). I am confident that today’s speakers will also share their thoughts and insights on this question.
- We are indeed seeing and hearing at global and country levels that a greater emphasis on community responses is a critical driver if we are to meet our global goals and targets that will lead to the end of AIDS as a public health threat. Strong civil society engagement is also seen by UNAIDS as critical to the successful implementation of its renewed 2016-2021 strategy. It is widely touted as a “global public good” in the AIDS response (Lancet Commission; UNAIDS Strategy, 2016).
- The role of civil society and community systems is also widely recognized to be critical to achieving gender and human rights agendas, particularly for the most marginalized such as key populations.
- Advocacy is core to our mandate as civil society – although, funding for civil society to deliver community based services seldom also includes important funding for complimentary advocacy to address structural or policy barriers that might block the effective delivery of services or access to services for those that need them most.
- Civil society leaders are accountable to their constituencies, as are Member States. We will organize and advocate for what we know works – we know what works because we are ourselves members of communities accessing the services or because we are working closely in partnership with them. Civil society advocacy is critical for changing the global dialogue to be more inclusive of those most affected by, always pushing and striving for improvements in how we meet the needs expressed by the communities we serve, in demanding fairness, equality and equity; and in advancing and protecting human rights, and in demanding the meaningful inclusion of key populations.
- Declining investments in key population networks and coalitions of civil society organizations:
- Despite evidence indicating the value and cost-effectiveness of key population networks and civil society coalitions, we continue to witness an accelerated downward trend in financing for networks. It is increasingly difficult to identify and secure funding for coalition-based work, yet we all know that we can’t reach our collective end goal if we work in isolation from one another – particularly in a highly integrated global development architecture as evidenced by the SDGs. We will only reinforce the silos that we continue to work across and try to break down.
- Even for those institutions that are interested and willing to fund advocacy work (of which there aren’t many)– they are often only interested to fund advocacy that is directly related to service provision. Funders are often less interested in funding convening and uniting voices for common advocacy goals or for regional or global advocacy work for which impact that is more long term more difficult to connect to direct impact on people’s lives. Domestic coalitions also struggle because governments are often very reluctant to fund national coalitions that are convening organisations to do advocacy towards them – it takes an enlightened government to see the value in civil society holding them to account.
- As I noted in the joint civil society intervention made yesterday during the session on Financing, UNAIDS modelling exercises suggest that investments in community mobilization should increase threefold to 3%, and social enablers (this includes, advocacy, political mobilizaitons, law and policy reform, human rights, public communication and stigma reduction) should reach 8% of total expenditure in low and middle-income countries by 2020.
- Funders Concerned About AIDS did an analysis last year of 228 philanthropic funders and HIV funding for advocacy using 2014 data. Analysis shows that Philanthropic funders currently provide the majority of funding for HIV advocacy globally. Even though this is the case, the actual amount of funding is tiny. Total philanthropic resources for all HIV programming in LMICs account for just 2% ($620 million) of total resources for HIV. Of that 2%, only 11% ($87 million) was directed for advocacy.
- And that tiny amount is not going up. It is actually going down. In a recent survey conducted by UNAIDS, 40% of organizations tasked with implementing community activities reported that their funding had decreased since 2013. Two thirds expected flat or declining funding in the future.
- Human rights advocacy for legal and policy change is an essential pillar of community responses and is widely considered a social enabler. In another UNAIDS survey focusing more specifically on funding for HIV and human rights, even more drastic funding decreases were reported. Of the 123 organizations that responded, 59% reported that their funding for HIV and human rights work had decreased in the previous two years. It’s important to clarify, survey results found that organizations delivering legal services related to HIV were much less affected by funding cuts than organizations focusing on things like human rights advocacy, legislative reform or strategic litigation (ICASO, 2016).
- The success of the Fast Track strategy and reaching the 90-90-90 targets depends on community and civil society, a community and civil society that may be invited to the table, but increasingly can no longer afford to be there.
- Systemic and Political Challenges
- Broadly, in addition to declining investments in the work of networks and coalitions, there are two other significant challenges confronting our efforts – systemic challenges, and political challenges.
- Systemic challenges: the work of coalitions/networks, including advocacy, does not fit nicely within a logical or a results-based framework; their indicators of success are not so easy to define quantitatively. Similar to other interventions that get at the root social drivers of the HIV epidemic – like stigma interventions, gender or legal and policy change – the impact of advocacy and other non-service delivery community actions – while incredibly important for pushing progress – are difficult, but not impossible to monitor and evaluate. It’s something that can’t be quantified by the number of trainings held, the number of participants trained, or the number of advocacy kits distributed. It’s complex. But it is possible. Robust systems exist that can help civil society organisations demonstrate clearly the changes they are advocating for, the process by which they propose to achieve those changes and the indicators and monitoring tools that can be used to demonstrate progress and impact.
- This is where community monitoring comes in. As indicated in a soon to be released report by ICASO, community monitoring is a vital part of robust community responses – particularly for those efforts that are harder to measure and which sit outside of the formal health system. Community monitoring is critical to accountability and watchdogging efforts. It is critical to data collection and knowledge production on the impact of community-level interventions. This piece needs to have greater space in funding requests (and in funding decisions) and is pivotal in building an evidence base for community responses.
- There is increasing scientific evidence showing that community empowerment and advocacy programs can and have on many occasions resulted in reduced HIV incidence on a massive scale – often by addressing the structural and political barriers that prevent, for example, funding or access to services.
- Political challenges: Limitations and restrictions on civil society manifest in different ways across countries and regions. Whether it’s increased qualifications and demands for NGO registration, repressive legal frameworks, extensive and repetitive administrative audits, restricting access to diverse funding sources, or the de-funding of organizations for their mandates and who they represent, etc, we are witnessing a closing space for civil society engagement globally.
- It is through advocacy and engaging with politicians and other decision-makers that communities can make their voices heard and hold duty bearers accountable. Otherwise it is easy for elite to avoid ever having to really hear directly from those who most need to be heard.
- We applaud the approach of the Dutch government in their large scale funding of advocacy programs for HIV. Their Dialogue and Dissent program recognizes that it is a very healthy process for donors to work closely with civil society – to both fund civil society efforts and to be challenged by the findings, priorities, and actions that result from this funded work.
- Strengths in coalition based work – Examples of global advocacy: lessons from the HLM
There was huge power in civil society organisations coming together to present combined messaging and priorities to member states at the HLM – it made it a lot clearer and easier for member states to know not only what civil society priorities were but that they were supported by hundreds of organisations.
It also allowed us to present a breadth of input across the whole document – drawing on topical expertise across the whole Political Declaration draft and also drawing from a broad pool of resource and capacity for writing press releases, arranging meetings, briefing speakers and meeting with member states.
In response to the question: how can these diverse civil society groups be better supported in their advocacy? I have five recommendations:
- Call UNAIDS to support member states to develop mechanisms to fund community responses particularly in terms of advocacy and monitoring;
- Call on UNAIDS (in cooperation with the GF and PEPFAR) to carry out resource-tracking of investments in community responses, including and particularly for advocacy and human rights work, to monitor quality and quantity of support and report to the PCB every two years;
- Call on UNAIDS to commission frequent and rigorous impact assessments for community responses and promote a sharing of experience between countries and regions.
- Call on UNAIDS to build its role at national level to support and collaborate with civil society to convene and unite civil society voices and to build bridges and communication channels with government and service provision actors
- Call on Member States to increase their investment in innovative and game-changing funding mechanisms, such as the Robert Carr Networks Fund, which supports international networks that address the needs and human rights of inadequately served populations.
PANEL 2: COMMUNITIES TRAILBLAZERS OF CHANGE
Presentation by Derricia Castillo-Salazar, Our Circle, Belize
As a lesbian, a member of a community where I am frequently excluded in regards to treatment and care, I want to share how myself and the LGBT community in Belize have thrived through stigma, discrimination and even the criminalization of our love.
The LGBT community in Belize leads the responding and spearheading of the elimination of HIV by 2030 movement not only in our country but also in our region. It was the LGBT community that made the first efforts for the availability of antiretroviral by bringing donations from the other countries and making them available to a few lucky persons. The advancement of the community has resulted in the inclusion of a PLWHIV representative, a representative of sex worker, and a LGBT representative in the country coordinating mechanism, which wasn’t easy. We advocated for years for the provision of viral load testing and we are happy to say that Belize has free viral load testing for every PLWHIV. Although the laws of Belize criminalize us, this hasn’t stopped us from being public, bold and persistent to improve the laws for EVERYONE.
Amongst the killing, expulsion from school, amidst the loss of job, amidst young LGBT members being thrown out of their homes, the beatings, we are still thriving. Today, Belize has MSM oriented groups, youth oriented groups, a couple of lesbian led groups, a network of persons living with HIV and a trans focused group. Also, my organization, Our Circle, which is the platform that brings us all together.
Our advocacy has now resulted even in the inclusion of the key population in the review and update of the National HIV treatment guidelines. Our country is making the move to start treatment from 500 CD4 diagnosis to test and treat. We still have a long way to go…..on June 10th of this year, the Caribbean Court of Justice dismissed a case brought up by Maurice Tomlison. Tomlison stated that the immigration laws of Belize impeded on his right to free movement within CARICOM states as a homosexual man. However, the Caribbean Court of Justice clarified and concluded that homosexual CARICOM nationals have the same rights as any other CARICOM national. This led to the CCJ challenging the necessary law makers to amend the necessary laws. In turn the 3 years constitutional challenge against section 53 of the Criminal code of Belize which criminalizes homosexuality, brought up by Caleb Orosco, finally will have a judgement passed on July 27th at 10 pm and we are positive that the right judgement will be passed.
In 2014, our Prime Minister, the Right Honourable Dean Oliver Barrow, gave his Independence Day speech stating that all Belizean citizens, even the LGBT citizens share equal rights in Belize. Three consecutive years, the first Lady, Mrs Kim Simplis-Barrow has advocated publicly by making videos about eliminating discrimination and advocacy for the International Day
Against Transphobia and Homophobia.
This year, our LGBT community celebrated the 1st LGBT Pride event, where ironically we had LGBT friendly police officers. The LGBT community is making BIG STEPS. We, the LGBT community, have been the ones producing data. We collaborated with CDC for the 1st Behaviour Surveillance Survey and Epidemiological data that has given us the figures for the HIV prevalence of MSM and trans as 13.9%…the highest HIV prevalence group in the country.
We implemented the PLWHIV stigma index, also the assessment of quality of services for persons living with HIV and the risk profile for PLWHIV and we are currently implementing a study to identify the barriers and resilience for HIV testing amongst MSM and trans. We have been successful in Belize and our region, because we have the expertise within our community and that way we can reach out to our population amongst the discrimination and stigma.
Great job isn’t it? Yes it is, even though most of the time community organizations are looked at as free/cheap labour to implement work to be done but we need to be seen as equals in the fight against HIV. In national responses we aren’t the clean-up crew, you can’t just throw ideas, expectations and a little bit of money our way and expect to get the world in return. The fight to end HIV by 2030 is not meant to be a parasitic relationship, large stakeholders get the information and praise they want and the community organizations get drained and exploited for what they don’t have – resources.
We find ways to support the people that have been diagnosed with HIV to help them coping with the information, if they don’t have food we raise funds or solicit, we collect the meds and deliver to them if they are unable to travel….what we simply do is show them that they are not alone. How can we continue this? We need finance to reach peers. In a country where we are stigmatized, discriminated and even criminalized, we need finance to continue reaching our peers so that we can end HIV in Belize. With the little we request, we have been able to move mountains, because where others see barriers and think it’s the end, we see opportunities to write new chapters. Our book is just starting, we have many more chapters to write, beyond the year 2030, because that’s what community organizations are……TRAILBLAZERS OF CHANGE.
PANEL 3: COMMUNITY SERVICE DELIVERY
Presentation by Lucy Wanjiku., ALL IN NEPHAK Representative.
Thank Mr. Chair, Ladies and Gentlemen,
How much is a life worth???
Please tell me, how many more doctors, nurses, teachers, a few brokers, bankers too and conmen can I buy back? What is the price tag?
One of my friends, Juma died at the age of ten years last month, a vibrant member of Sauti Skika Initiative, a platform for adolescent and young people in Kenya. And as I listened to you from yesterday, I want to know how much he is worth because I want my friend Juma back?
What of teacher Rose and Ambassador Joy at only 15 and 17 years respectively I lost them to TB overdose. Beautiful sisters with long lives ahead of them from the rural areas of Homa bay who thought when you skip a dose you compensate by taking all the drugs at once. I mean would you blame them when the nurse at their HIV Clinic just hands them their refills and quickly wants them out of sight? She is anyway “serious” with “serious” clients.
These documents have posh language that only makes my young people dismiss them as for the experts. But experts, how many drugs do you take in a day? How many miles do you walk to your nearest health facility when you have pneumonia? The next president in 2032 in Kenya does not have a health cover and was dismissed at the Clinic where she gets her treatment, as promiscuous when she had symptoms of gonorrhea with only 10 painkillers.
I could go on and on and on! You have watched as my friends, family and community wither away claiming there are no results. You have sat in big high chairs and meetings speaking on our issues as if you had or could walk a day in our painful shoes. I am in pain, we are in pain.
You know that better health care means informed health providers and informed communities who can assert their rights; young people have rights too!
You do know for us to ensure we have at least 50 members of Sauti Skika in each of the 47 counties understanding 10% of what these beautiful documents means we need money. Contrary to what you might think, we started two years back with only a facebook page, whatsapp group, twitter handle that only 30% of the A/YPLHIV in Kenya could access. We even blog of our daily experiences of being finally seen as people with mouths to speak at governmental and key decision making levels, or is it brains???
Going on foot for long to arrive in time together with big bellied, Mercedes Benz driving officials. We do all this without complaining because we are tired! Tired I say!!! Of old people who believe having sexual intimacy with a person of the same sex causes drought and floods and is a punishment from God when they die.
As you wonder why we deserve to get better health care or prevent new infections by doing prevention advocacy in schools, and influencing national strategic plans so, that they can meet our sexual and Reproductive health and rights, with support from friendly agencies like UNFPA, UNAIDS and UNICEF remember, we need a freindly policy environment. This will enable many communities and young people access HIV services including HIV testing.
The same way I could not afford you, you could never afford me. Keep us alive, the only time you can ACT IS NOW!
Tomorrow will be too late.
I applaud tmy colleagues from the community who are here and the NGO Delegation to the UNAIDS PCB.
Presentation by Irina Maslova, Silver Rose
I am Irina Maslova, leader of Silver Rose, a Russian network of sex workers. Today I have the honor to speak on behalf of Russian sex workers. As elsewhere, sex workers are disproportionally affected by HIV, they are routinely murdered, physically abused and kidnapped. We are a community of women, men, and transgender people, which was refused the ability to register as a legal entity because sex work is criminalized.
My goal in providing these brief remarks is to demonstrate two things: the role that sex worker communities have played in addressing HIV and health and the context of on-going human rights violations within which we have to work.
In May this year, ultra-nationalist gangs assaulted two brothels in St. Petersburg. They knocked down the door, and forced the girls to undress and march naked in the streets. Police refused to intervene. We found there have been over 50 similar assaults against brothels in St.Petersburg recently. We provided legal aid to 36 women survivors of the St. Petersburg attack, including a Nigerian sex worker who was thrown from the window by the Nazi gang, because of her skin color and occupation as sex worker, and broke her hip-bone. I and other advocates received threats to our life and health because we intervened. Thus, moralism and stigma meet in one point to justify these assaults.
During the past years, we involved over 400 peers from 30 towns to conduct HIV prevention. We did these programs by ourselves for ourselves for five years before we were lucky to get any funding. We can provide technical support on how to work without money to the Joint Program – we are so good in that.
There is already enough evidence and best practices to move forward. We are a group capable of implementing high-quality HIV services, but we need targeted help and support. Community is a key force in any intervention. We need resources allocated for our work on the ground, as well we need funding for advocacy to sustain what we do. and for structural changes. As well as for us, and for each woman and man that we represent, it is very important that UNAIDS continues reserving a floor for us in policy dialogue.
 UNAIDS (2016, April 4). Investing in community advocacy and services to end the AIDS epidemic. UNAIDS. Online at: http://www.unaids.org/en/resources/presscentre/featurestories/2016/april/20160404_community_advocacy.