36^th

UNAIDS PCB Meeting

This is a critical moment and we all feel it. We are reaching the end of the MDGs with their specific focus on reversing the HIV epidemic and ensuring universal access to treatment. We are entering the era of the SDGs with their broader ambition and inspiring focus on addressing structural inequalities in our global relationships – but which lack the deep attention to HIV that we have appreciated in the MDGs.

As we Fast Track the HIV response, fast tracking human rights is essential. This includes the rights to health, to justice, to equal treatment under the law, to adequate income, and to development for all people without discrimination.

The NGO Delegation would like to highlight a few key issues for civil society that will make the difference between success and failure.

a. HIV prevention is essential. We must have comprehensive sexuality education that teaches all young people the skills to care for their bodies, their sexual and reproductive choices and well-being, and their relationships with their partners.

b. All people must have protections for sexual and reproductive health and rights. This includes rights of people with HIV to have children– and forcible sterilization of women with HIV must end.

c. We must address social norms, and end the violence and threats of violence that uphold these norms, that teach girls, women, and LGBT people – as well as racial or ethnic minorities, indigenous people, and others – that they must learn to accept mistreatment as the price for their existence.

d. It is long past time for national legal systems to provide equal protection for all people – and to remove laws that unfairly target people living with HIV and LGBT people for criminal penalties.

e. And, of course, we must finally meet the challenge of universal access to prevention and treatment for all. This mean fighting back against pharmaceutical pricing regimes, intellectual property barriers, and trade deals that make medications so costly that they are unattainable.

But that is not enough.

f. We must put all our energies into addressing HIV-related stigma and discrimination which remain pernicious and persistent globally. It is the fear of mistreatment, rejection, and isolation from other people – all deeply damaging experiences — that stops people from accessing HIV testing and treatment even when these services are available.

How do we respond to these issues? Now as much as ever, we need to fully fund the work of civil society and to invest in capacity building for civil society organizations. Civil society holds the experience, connections, information, and urgency required to fast track the response in every country.

As we move forward into this new era, we thank the Joint Programme for leading the way in partnership with civil society.

Thank you very much, Mr. Chair. The NGO Delegation welcomes this report that provides us with a picture on where we are at in ensuring that HIV and AIDS remain a priority in the post-2015 development agenda.

The great son of Africa and icon of the emancipation of all oppressed people, Madiba Nelson Mandela once said, “Our human compassion binds us the one to the other – not in pity or patronizingly, but as human beings who have learnt how to turn our common suffering into hope for the future.”

We wish to use this opportunity to appreciate the leadership of Michel Sidibe and the Joint Programme towards ensuring that no one is left behind in our efforts to end AIDS.

As representatives of civil society and affected communities, we are compelled by a high sense of duty and therefore refuse to be cowed into submission in the face of efforts to turn the tide against and eradicate AIDS in Africa and the world at large.

We wish to declare that the NGO Delegation supports and appreciates UNAIDS not only in providing technical support but also in advocating for what moves us most quickly along the road towards ending AIDS as a public health threat.

Our communities have resolved to stand together in our common resolve to stand together and not accept a divisive approach to addressing the AIDS epidemic ravaging our women, men, youths and children. We refuse to be drawn into conflicts between key affected populations, vulnerable groups or communities, fragile communities/nations and would rather focus on ensuring access to services for all people irrespective of labels or categorization and regardless of the ability to pay.

Our collective insistence on rights to access to services by all irrespective of their age, creed, sexual orientation, gender identity, social and economic status cannot be overshadowed by controversies bordering on national sovereignty versus supposedly foreign ideas.

We are struggling with challenges arising from donor fatigue in the face of dwindling resources and we cannot accept the notion that any key population group is overfunded or that there should be a debate on “AIDS versus Health funding”. We take our stand based on a host of overwhelming evidence that focusing on key populations and other vulnerable communities move us more quickly along the road to ending AIDS as a public health threat.

Today, we make bold to ask everyone present here the big questions:

• Do we want to end AIDS as a public health threat or not?

• Do we want our girls and women to continue suffering inferiority when compared to their male counterparts due to no fault of theirs but the accident of their gender?

• Should any African man, woman or youth be denied the right to live a meaningful, fulfilled and healthy life?

Finally, we wish to urge everyone here present to stand on the right side of history. We wish to reiterate our support for UNAIDS in respect of every evidence-based policy, practice, principle and program to achieve the 90-90-90 targets.

We are all in it together!

Before I go, let me quote another great son of Africa, Nobel Laureate Professor Wole Soyinka who said that “The greatest threat to freedom is the absence of criticism.”

Thank you.

Following previous direction given by the PCB, the Joint Programme provides annual reporting on engagement with civil society. As civil society members of the PCB, we look forward eagerly to this information. It can be difficult to measure civil society engagement in a consistent way under current tracking systems for some co-sponsors. To attempt to get more precise information at the country and regional level, this year’s report takes a close look at how the Joint Programme works with civil society in three sites: Cambodia, Zambia, and the MENA region. We thank the Joint Programme Civil Society Engagement Working Group for this very important and useful report.

The report demonstrates the absolute necessity of civil society and networks of people living with HIV, young people, women, and key populations in the response across all sites. The report paints a compelling picture showing that efforts to increase HIV testing, to address persistent punitive legal environments, to shape domestic policies on trade and intellectual property, to ensure adherence to medication – alongside ensuring adequate nutrition — among others, are all reliant on collaboration with civil society organizations.

The discussion of challenges and gaps in this report are particularly welcome as these provide a roadmap for the work that remains to be done. Let me highlight four that call out for immediate attention:

• Civil society continues to work within contexts of ongoing human rights violations and without meaningful access to legal protections or justice – in fact, sometimes it is the state that perpetrates these violations.
• The presumption among policy makers that civil society members should provide services for free or low cost This is a particular concern as enthusiasm grows for “task shifting” to communities, which often shifts the responsibility solely to communities, and translates to exploiting women’s unpaid labor and the labor and capacity of key population groups.
• Ironically, sustainability for civil society as organizations are closing their doors for lack of funding in every region, and generally the first to close are organizations that support key and vulnerable populations and those most affected by HIV.
• Funding and technical support for local initiatives and autonomy for civil society organizations to do their work based on their local knowledge of needs, rather than focusing on predetermined government or donor priorities.

We echo the comment from Ambassador Birx earlier on the importance of putting the communities back to the centre of the response. This will only be possible if the Joint Programme sees us not only as beneficiaries, but as key partners in ending the AIDS epidemic.

Lastly, we look forward to seeing risk management strategies in October related to raising or not raising the needed added funds for the Fast Track strategy.

I want to thank regional director of my region for the report and to stress that role of regional office grew during last years, but as well let me share some of concerns. We appreciate your fundraising efforts but we insist you make sure you are staying independent and don’t forget your advocacy agenda.

As written in the Conference Room Paper on UNAIDS Engagement with Civil Society which reports on case studies in 3 countries and regions, “Possibly the strongest theme which emerged from the three studies was the urgent need for UNAIDS to further engage with civil society to address decreased international funding for HIV.

The GF left Russia in 2010 – it lead to stock outs of ARVs all around the country, services were closing…, During the Board of GF and Vienna conference we advocated hard, may be someone here remember the opening speech I have made with my colleague from Ukraine. That resulted in extension of GF services project in Russia and gave a chance to prisoners and migrants – who were given ARVs through GF funding. But nothing can be done for PLH who were not in prison and were Russian citizens. We didn’t have any funds to advocate.

The GF project was run together with government – that means no advocacy. We managed to take 40 000 $ from GF– it was a hard task, as it is not possible of course to make direct action and run advocacy campaigns using GF funding, officially we were making trainings in advocacy. We managed to raise 30 000 additional to that funds. We monitored ARVs stock outs in more than 20 cities of Russia and we conducted 38 direct actions and press- conferences.

I was very very very pregnant, on 7th month, when I have made speech in the Russian Parliament special health committee. The prosecutor’s Office of the Russian Federation where we had been sending our data on stock outs had found a violation from side of the Ministry of Health. ARVs returned into the country. It took us 5 months and 70 000 dollars – I think it is cost-effective. We were able to return of treatment to the country in this short timeframe and for this small amount of money. We created a movement – Patients in Control. A year later we were given Red Ribbon Award in Washington. –

But all this would not have happened if we had not been able to obtaine from the GF project 40000 on advocacy – which was really hard task and high risk.

Now GF is leaving our region. In the past year we had stock out in Belarus. There were threats of stock-out in Moldova and Kazakhstan, and there was a repeatedly critical situation in Ukraine. Typically, the presence of GF in the countries saves situation – The Government can borrow the pills, they can ask for help. I know better than anyone in this room what can happen when the GF will leave my region completely, I have gone through that situation.

And I know that if we do not have the money to advocate no one will even notice the catastrophe. And certainly no one will not be able to return ARVs during the next stock outs. I put all of my energy now to prevent such situations from happening in other countries of region, to fight for domestic funding, to advocate towards pharma and address IP issues, to ensure transition plans exist and work. But we still are out of money. There are extremely limited resources for working on advocacy in our region, for helping communities of people affected by the epidemic work toward positive change. Thus, it is really critical for civil society engagement to be at the center of the programming and spending for HIV and we hope that the next UBRAF will strongly reflect this.

We are effective. We know our job. We are willing to work – we need resources allocated for that. I do hope that my second pregnancy will go without such huge catastrophe as it was in 2010, I do hope that we will have fund to prevent such situation– I do hope so.

I want to thank the (UNAIDS) regional director of my region for the report and to stress that the role of the regional office grew during last years, but as well let me share some of concerns. We appreciate your fundraising efforts but we insist you make sure you are staying independent and don’t forget your advocacy agenda.

In Eastern Europe and Central Asia (EECA), 79% of all HIV infections are among PWID. The epidemic in our region is driven by people who use drugs (PWUD). The criminalization of people who use drugs fuels stigma and vulnerability. PWUD face the denial of essential medicines and basic healthcare services. Harm Reduction remains underfunded in most EECA countries. It has been estimated that only 10% of us have access to harm reduction services. The problem of inadequate funding is expected to get worse. About 78% harm reduction funds in our region come from international sources and many of our middle income countries MAY soon be cut off from support from the Global Fund. The inclusion of decision points on funding of harm reduction and other services for drug users and at least ALTERNATIVES TO incarceration will help us and our supporters to advocate for positive change in our region.

We do see that there is the line between war on drugs and between war on people. We want all of us to see it as clear as we do, and end the WAR ON PEOPLE. In my region we have countries in Central Asia, which have huge DRUG TRAFFICKING problems, we know from our own experience what drugs traffic brings into our countries. We have this understanding, but as well, we need to look at the situation from public health prospective – if we will not be able to stop war on people and provide needed funding, we will never even be able to get close to achieving 90/90/90 targets.

The NGO Delegation welcomes this Thematic Session on Emergencies, with its emphasis on the impacts of emergencies and related displacement of key populations, as well as persons living in other fragile communities that may ultimately require emergency humanitarian responses. The Delegation is also happy to see that the profile of emergencies is now high within several of the documents we received for this PCB, so in many ways, a key objective of this Thematic has already been achieved, i.e., ensuring emergencies are well integrated into the updated UNAIDS Strategy.

The NGO Delegation offers some examples of emergencies for key populations:

A 2013 High Court ruling in the Dominican Republic has stripped Haitian migrants and many of their Dominican-born children of their citizenship, retroactive to 1930. This has left 500,000 people stateless, all of whom might be considered key populations in the context of the Caribbean because of their disproportionate burden of HIV and the discrimination they face based on their perceived racial characteristics and national origin. In addition, this group includes PLHIV, people living with TB, TB/HIV dually infected persons and other vulnerable sub-populations. In the first quarter of 2015, 40,000 people have been deported to Haiti. And as we know, Haiti is the poorest country in the Western Hemisphere that is still crippled by the impacts of the 2010 earthquake. The NGO Delegation sees this and similar situations as key population emergencies.

We have heard at many points today that as the Global Fund begins to withdraw from many countries, PLHIV and key populations in those countries have to depend on their governments to sustain HIV and related services to these groups. In far too many cases, it is not at all clear that such services will be sustained after the GF departs. In Romania, only 3 years after the end of Global Fund financing, we saw the closure of harm reduction services and the percentage of new HIV infections among PWID grew from only 3% to 30%. In Russia, there were stockouts of ARVs in 2010 after GF have left the country. Where the GF departs from countries prior to being sure that governments can sustain treatment and other services, the NGO

Delegation sees this and similar situations as key population emergencies or at least emergencies in the making.

Critical situations, including displacement and danger when accessing services, are being faced by key populations due to legislation that criminalises MSM, or where – as a result of conflict – the terms and policy on key populations have changed, as has happened in Crimea with MSM and PWUD. The NGO Delegation sees this and similar situations as key population emergencies.

In closing, the Delegation is delighted to have this study day on emergencies, whether arising from natural disasters or from human actions. We are also delighted to have the opportunity to explore how such emergencies impact key populations and other vulnerable communities.

Late Tuesday afternoon, one of Housing Works’ staff, a member of the Haitian diaspora, called me on my cell phone. There has been an earthquake in Haiti, she said. For two years, Housing Works had been providing technical assistance to 17 small Haitian grassroots AIDS organizations. I sent several text messages to friends in the country to ask if they were ok. Only one, Edner Boucicault, responded. “We are dying,” he wrote. “Please help.” “What do you need,” I responded. “Everything,” was the reply.

Within 48 hours, we had collected medical and other supplies, and were on a plane to Santo Domingo, where we filled a truck with food staples and other commodities. We made our way to Port-au-Prince, not a part of any formal relief effort, just friends helping friends. That experience resulted in an intensive collaborative effort for a year following the earthquake, and also gave us insights into the formal humanitarian relief efforts.

Following the riots that were provoked by UN forces throwing bags of rice off the back of trucks, the impacted area was divided into zones, with an international organization contracted to manage relief efforts in each zone. Each had its own mechanisms for selecting community leaders through which to work. Overall work was coordinated through clusters that met on the United Nations base camp, far from any population center.

Only official vehicles were allowed near the base camp, and only personnel with identification or with international passports were allowed in. All the cluster meetings were conducted in English, without translation, in a country where the elite speak French and the vast majority of the population speaks only Haitian Creole.

The need for participation by representatives of vulnerable populations could not have been more obvious. Food vouchers were given to female heads of households, but left gay men, abandoned by their families, and widower heads of households and even disabled and frail women without access to food. Later, food distribution was shifted to the appointed heads of camps, who often used their power for sexual exploitation. Sex workers were often forced into a single area of the camp, known as the “nich miel”, where they were expected to provide sexual favours for security. Persons with HIV were terrified to be found out and so refused to bring their medications into the camps, where there was no security for personal property. Without light, at night, the camps were filled with violence, especially sexual violence targeted at girls, women, and gay men. Neither the Haitian police, nor the MINUSTAH UN “Peace Keepers”, would enter them at night time. Yet, a year passed with no provision of lighting.

Even as the reconstruction began, the same marginalization of spokespeople for vulnerable groups and key populations continued and often was only bridged, when I, US citizen, would seek a meeting with UN and other authorities and bring them to the meeting.

Communities impacted by HIV face many pressing needs in addition to HIV. The challenge during emergencies is mobilizing communities in the AIDS response. Internal community mobilization is as important as any aid from international or outside assistance. However, such mobilization during emergencies is unlikely to be successful where governments and international organizations do not have a prior partnership with civil society and key populations in the pre-existing AIDS response.

Communities and civil society organizations are among the driving forces in providing help in emergencies, and can link efforts of States and humanitarian organizations. They have operational information, relevant vision and motivation to solve problems. That is why support for communities is a cost-effective strategy in ensuring sustainable service provision during emergencies.

We need to support people living with HIV and key population networks and other vulnerable groups to collaboratively plan for and participate in disaster responses. Without such community mobilization, it is unlikely that we can ensure that the needs of vulnerable groups are adequately met in the planning and implementation of the humanitarian response.