On Monday, at a session I was chairing at the International Harm Reduction Conference in Vilnius, presenters from Romania, Kenya, Nepal and from Alliance Linking Organisation, Rumah Cemara in Indonesia, shared their personal and programming experience of drug use amongst young people.  They highlighted many common issues: children hidden within harm reduction services due to age restrictions and the common fears around asking and documenting age, legal systems that criminalize children as young as 8 years for drug use but deny them harm reduction services until they are 18 years, and service providers poorly prepared to work with young people, running existing programmes that don’t meet their needs.

Ioana Tomus from ALIAT in Romania reflected on the rallying cry from the International Network of People who Use Drugs (INPUD) in the conference opening session.   ’Nothing about us without us’ was what they said.  However, the reality for young people is that they are excluded from decisions about programme design, and there is a lack of data on harm reduction among young people.  This leaves them facing a situation of ‘everything about us without us.’

Bikash Gurung from Nepal shared stories of his drug use from early adolescence and his later imprisonment for possession of small quantities of drugs. What kind of system punishes a child for drug use by incarcerating them in an adult prison? The message of the Alliance-supported campaign ‘Support. Don’t punish‘ is as critical for these young people as it is to the adult drug using community.

All of the speakers spoke of the limited capacity within organisations to engage young people and therefore tailor services for them. Perhaps it is because we find the reality of children and adolescents using drugs too difficult to face, or because supporting young people to use drugs more safely seems irresponsible and contrary to the values of protecting children? Whatever the reason, practitioners are not asking young people what they want, they are not informed about the types of drugs or the patterns  of use in their communities of young people, and they seem paralysed by the ethical dilemmas and conflicting values about what it might mean to be providing 13 year olds with clean needles.

But so many rights are being denied while we make up our minds on these issues. We need to know so much more about young people and their drug use and we need to grapple with the challenging dilemmas that face us.  We need to recognise the diversity of young people who use drugs – different ages, different contexts, different genders, different drugs. We have to find ways within existing legal frameworks, good or bad, to ensure we listen and respond.  We need to challenge collectively the systems that continue to deny young people access to evidence based interventions based on age but not only with global policies and guidance.

Instead we must face the problems head on. We must listen to young people, find the missing data, face the unpalatable truth about the extent of drug use and the systems that violate their rights.  We need to confront the uncomfortable choices to ensure young people have access to the information and services they need and respect, support and protect their ability to make decisions.  Easy to say and so much harder to do, but we are going nowhere unless we do so.

The pre-conference involved 100 young people from 68 countries around the world; from our region young people attended from Argentina, Barbados, Brazil, Bolivia, Chile, Colombia, Jamaica, Mexico, Nicaragua, Panama, Paraguay, Peru, Dominican Republic, Trinidad & Tobago and Venezuela. Together they exposed the main problems that affect people in Latin America, which they identified as one of the most unequal regions of the world.

Investment in sex education, and access to sexual and reproductive health services for young women were the issues that were raised emphatically by Latin-American participants. They highlighted that both areas could bring about a big change, not only for the development of women in the region, but for society in general.  Other topics such as abortion, equal marriage and the responsibility in pregnancy were also discussed and created divisions among the 100 young people. In the case of equal marriage, the situation in Colombia was raised, where the law was not approved by the second debate in the Senate, due to the large conservative opposition in the Catholic Church.

The pre-conference was a training space for these young people who are looking to make their work known in their respective countries and obtain technical and financial support for their projects.

The event was attended by Jill Sheffield, founder and president of Women Deliver, who affirmed that it was incredible to see young people participating in the conference and that they should take advantage of the space to carry on fighting for the rights of women and girls. Musimbi Kanyoro, president of the Global Fund for Women Joy Marini, Director of Cooperative Contributions at Johnson & Johnson (sponsor of the event). They also participated in the opening of the pre-conference in Kuala Lumpur, Malaysia.

Other high level experts who participated in the training of the young people were  HRH Princess of Norway, Pablo Aguilera, Executive Director of HIV Young Leaders Fund; Callie Simon of Pathfinder International; Barbara Bush of Global Health Corporation; Mandy Moore, Ambassador of PSI; Rena Greifinger of PSI; Sharon D’Agostino of Johnson & Johnson; Janna Oberdof of Women Deliver; Marcia Banasko of YWCA Global; Georgia Arnold of MTV Staying Alive Foundation; Gillian Dolce of GYCA; Kathy Calvin of the UN Foundation; Katy Woods of the White Ribbon Alliance; Carmen Barroso of IPPF-WHR; Vanessa Brocato of PPFA Global; Julia Bunting of IPPF; Lindsay Meenard-Freeman of Women Deliver; Dianne Stewart of UNFPA and Prateek Awasthi of UNFPA.

We hope the tools given to the young people on this intense day will be put into practice over the next few days so that their initiatives in favour of women and girls’ rights will gain profile in the region.

The law, which was drafted by the transgender community, is a model for the world. By allowing transgender Argentineans to change their names without undergoing complicated and expensive requirements, the bill promotes the individual’s right to make the decision. Under the new law, transgender people over 18 can go to a government office and change their gender listed on official documents if they choose to. The law is meant to include all transgender people who undergo gender reassignment surgery or hormone treatments to physically resemble the opposite sex, but it goes further than that.

Why is it such a significant step? It’s simple. Without an identity, we do not exist. This means we have no rights, no benefits. We always say that the transgender population has been forgotten by democracy, and that democracy in Latin America has a debt with us: the gender identity law. Not only in Latin America, but across the world transgender people are suffering social exclusion and discrimination.

One of the struggles of our population is to emphasise to UN agencies and governments that we are not men who have sex with men, we have a feminine gender identity and we are the target of gender based violence. 

With the Gender Identity Law, my country has made a step in repairing a historical human right violation against transgender people.  It has been a hugely important achievement for our population, and sets an important precedent both in the region, and beyond. The Argentinean President, Cristina Kirchner personally promulgated the law in front of national media, handing transgender people their first ever ID cards in their names. To translate the laws into practice, we need government leadership. It is important to have our leaders speak up and show that they are behind us, sending a clear and strong message that it’s not ok to violate our rights.

So we are going for more!  We are campaigning for similar laws to be passed across Latin America.  Intense advocacy efforts are underway in Bolivia, Brazil, El Salvador and Guatemala, where our national chapters are working on drafting gender identity laws and meeting with decision makers to push the agenda forward.  

Since this time last year, our campaign has gained enormous profile. Together with the Alliance, we produced a human rights report, ‘The Night is Another Country’, about the violence faced by transgender women human rights defenders in Latin America, and the surrounding impunity.  In March this year, we travelled to London, Geneva, Brussels and Washington with the author of the report, Monica Leonardo, to speak at a series of events and bilateral meetings with decision makers, donors and other stakeholders.

This political tour accompanied the campaign, ‘Just Like You’, which urges governments to promote and approve a Gender Identity Law in their countries, as well as to implement a national plan against discrimination and for the protection and promotion of the human rights of transgender people.

Please sign the petition!

The organising committees around ICAAP 11 are becoming a hub for informal exchanges. The sub-themes approved by the Community Program Committee (CPC), of which I am a member, reflected concerns about the Post-MDG agenda – from dwindling resources to lack of political will and commitment to sustainability. In these conversations, I championed the need to act proactively in the matter of HIV integration and contributed to shaping the ideas around sustaining community action. Albeit limited, I have started to engage with a few Alliance Linking Organisations in the region and other regional groupings on Post-MDG matters.

Of the many priority concerns that have been identified, there are two that seem to strongly engage civil society leaders. 

The first is integrating HIV.  Where will HIV be in a new Post-MDG framework? Can future HIV integration go beyond health?  How will HIV fit and can it be integrated into one or more of the health and non-health issues that have the best chances of landing in the next set of global development goals? How can we proactively define, shape and influence the what, the where and the how of Post-MDG integration? How can we move forward in identifying what would be the most beneficial integration to ensure that the gains from country and global responses are not lost? If civil society does not take a proactive stance soon, HIV integration will be defined by others, with civil society and communities having no choice but to accept and follow.

The second is sustaining community action. With the withdrawal of donors from middle-income countries, we need to build partnerships with public and private sectors, and learn to mobilise resources from new and diverse non-governmental income sources. At this moment, a number of governments have favoured heavy spending on treatment, and rightly so. However, without equitable spending on prevention, care and support, which are mostly undertaken by the communities themselves and by NGOs who serve key populations, some of the gains in the fight against HIV could see a reversal.

It is vital that civil society actors in the Asia-Pacific region continue to engage in the Post-MDG debates.  Now is the time to think innovatively if we are to achieve a sustainable HIV response post-2015.

In Bolivia last month, individuals and organisations expressed their outrage and shock at comments made by the vice president of the country, Álvaro García Linera.  In a speech where he condemned violence against women, he went from calling on Bolivians to denounce and stigmatise men who abuse women to saying “we should treat them as we would treat someone with AIDS”.  He used a particularly offensive Spanish word, ‘sidosos’, to refer to people living with HIV (PLHIV).

Last year, the president of Ecuador Rafael Correa, used a derogatory term for a gay man (‘marica’) on an online forum.

Stigma and discrimination are the tip of the iceberg

In all cases, the politicians’ comments were quickly and roundly condemned by activists and members of the LGBT community and HIV organisations.  While the comments by all three men show the depth of stigma and discrimination, related to sexuality and HIV that still exists in their countries, in Bolivia organisations took the opportunity to link stigma with the broader challenges for PLHIV in the country.

The Bolivian Network of People Living with HIV (REDBOL) denounced the vice president’s comparison of PLHIV with criminals. It said:

“PLHIV are not murderers of women, nor are we rapists; on top of our struggles to find work and feed ourselves, we also live with health problems because the state does not take responsibility for our [health] care, despite the indications of Law 3729”.

REDBOL’s letter refers to the Law for the Prevention of HIV/AIDS, Protection of the Human Rights and Multidisciplinary Assistance to People Living with HIV/AIDS which was enacted by the Bolivian government in 2007, but has never been fully implemented, mainly due to a lack of funding from national government.

REDBOL called upon the government to meet with the network to discuss issues of human rights, violence and especially the question of government funding for HIV prevention and care programmes.  REDBOL argues that Bolivia cannot depend on international aid to sustain these programmes and that funding for HIV programmes must be included in municipal and provincial budgets.

Edgar Valdez, the executive director of Alliance Linking Organisation Institute for Human Development (IDH), a longtime partner of REDBOL, has also issued a statement suggesting that this is a moment for Bolivians to reflect on the lack of dialogue and the increasing levels of violence and confrontation in Bolivian society.

Apologies and commitments

Vice President Linera of Bolivia apologised for his comments as did President Correa of Ecuador.  There was no apology from Nelson Zavala, who is appealing the decision.  President Correa recognised his comments were offensive, and took the opportunity to emphasise that his government was extremely committed to fighting discrimination of all kinds and that no other government had guaranteed the rights of LGBT people as his government had.   While his initial comments were utterly inappropriate, let’s hope more Latin American leaders affirm the rights of key populations as Correa has now done – publicly.

Sweden is playing an important role in various post-2015 development framework processes. Sweden’s Minister for International Development Cooperation, Gunilla Carlsson, is a member of the UN Secretary-General’s High-level Panel on Global Sustainability (GSP) and Sweden is co-hosting with Botswana a thematic consultation on health for the post-Millennium Development Goals (MDGs) process. The question is whether and how HIV will continue to be included in the future development framework. Losing a specific HIV goal now may risk undermining the investments already made.

As we approach 2015, the development sector has reflected on the MDG processes and their value. The development of the current MDGs has been criticized for the use of a top-down approach, which has hindered country ownership. The lack of a human rights perspective in the MDGs has been seen as a limitation. According to critics, separate MDGs have also resulted in an uneven approach to health and development. On the other hand, the MDGs have proved to be an unprecedented vehicle in mobilising funds and political commitment for development and ending poverty. It is against this background that advocates are calling for a continuation of health-related MDGs, which will not be met by 2015. But how do we ensure a strong HIV response in the future? This question was the focus of a roundtable discussion organised by the Alliance and MSF on Valentine’s Day in Stockholm.

The event highlighted a complex debate about how development should be funded and approached in the future. Sweden’s Health Ambassador Anders Nordström argued that middle income countries needed to take a greater responsibility for funding their own HIV response using domestic resources.  The Alliance’s Executive Director, Alvaro Bermejo, stated that although some middle income countries have the means to increase their own in-country funding to tackle HIV and AIDS, political will was lacking. World Bank income categories also fail to reflect wider socio-economic disparities within these countries.

A wider approach to health was discussed as a way forward. The global development discussion tends to focus on aid, but it is time to move away from aid. Kristina Bolme Kuhn, President, MSF Sweden, said “it is not about aid, but about the costs needed to eliminate the disease”. The US$22 billion needed is a relatively small cost, which can be shared. It is therefore neither conducive nor realistic to argue that there are not enough resources to cover the costs needed.

It remains to be seen whether donors and countries have the political will to invest in HIV and AIDS and are able to commit to creating a more viable legal environment for people affected by HIV. Legal barriers such as criminalization of HIV transmission and behaviours which put people at higher risk were only mentioned briefly at the roundtable. Yet, criminalisation of drug use, HIV transmission and purchase of sex services create significant barriers to an effective HIV response in Sweden as well as in many other countries.

Only when there is long term investment and commitment to law reform, can an end to AIDS be achieved.

Mombasa, costal Kenya: The outreach takes place in the city centre, in a building partially destroyed by fire and there is a rubbish dump where the first floor used to be. There are representatives from different tribes and various parts of Kenya – both men and women, young and old. But people do not seem to notice the mess, they belong to this place, where they negotiate with each other, use drugs and sleep on the piles of smelly garbage. Outreach workers – partners of KANCO communicate with inhabitants of the area trying to explore their needs and to find out their attitude towards the needle exchange programme soon to be launched.

Kelantan State, northern Malaysia: Together with outreach workers from an organization supported by the Malaysian AIDS Council we go to a client’s house. This client is involved in secondary needle exchange and gets syringes from NGOs for himself and around ten of his friends. The host has a friend who came to inject together with him. His wife, children and neighbors are all happy to see the outreach workers. The wife says that in the beginning she was angry to see the outreach workers who would bring her husband syringes, because she thought they were supporting his drug use. But after she talked to the outreach workers and realised they want to protect her husband from getting an infection, she understood why they bring clean syringes and even calls them if her husband runs out of new ones.

These field notes are made in different settings at different times, but they illustrate the important role outreach workers play in harm reduction programmes. They are often the first to reach people who use drugs and they are the only ones who make a link between them and harm reduction services. Their role is important and responsible at the same time, but sadly in some of the organisations the outreach workers are considered to be “the lower grade staff” who do not receive enough support from the management. Of course, there are organisations that appreciate the outreach workers’ contribution and do their best to support them, build their capacity and reduce staff turnover.

In order to support outreach workers in their difficult job we have produced a new toolkit: Reaching drug users: A toolkit for outreach services. In the toolkit we share the experiences of organisations doing outreach work with people who use drugs in Ukraine, who have been pioneers in this field. It was developed in line with the International HIV/AIDS Alliance’s Good Practice Guide: HIV and Drug Use.

Download the new toolkit

We live in a world where millions of people are still not getting the life-saving treatment they need.  Key populations remain stigmatised, discriminated against and criminalised.  Much HIV funding continues to be misdirected to programming and prevention activities for low-risk populations.  All this needs to change if we are to grasp one of the greatest opportunities of our times – the potential to end AIDS.

Bureaucrats cannot decide health policies for all

We must fight for the policies of global, regional and national bodies around HIV to be informed by the experience of the communities most affected by HIV – including by those that are criminalised.  This is vital if we are going to improve health outcomes; improve health systems to make them more accessible for people living with HIV and key populations at higher risk of HIV infection; provide livelihood opportunities and tackle human rights violations.

Participation has always been part of the spirit and global architecture of the Global Fund.  This was behind the decision to create the multi-stakeholder Country Coordination Mechanisms (CCMs). To an extent, CCMs have been an ‘artificial space’, an incubator, where we have tried and tested a collaborative model in which governments, affected communities and (to a limited extent) the private sector are working together to govern a country’s response to AIDS, tuberculosis and malaria.

We’ve seen good and bad examples of CCMs: some where there was true community participation, others where it was just tokenistic. Some that only met to rubber stamp proposals and reports, others that have really taken on the oversight and coordination of the response. In all cases they have contributed to legitimising community voices, even in environments where governments have traditionally crowded out those voices that could challenge their perspectives.

As the Global Fund completes its move to a New Funding Model, we will discover whether the collaborative seeds sown in the ‘CCM nursery’ are able to take hold in the broader health-related country dialogue. In too many countries this dialogue is still held in ivory towers where only health bureaucrats are allowed in. To what extent will the CCM experience be able to change this?  It’s a key question, one that will determine whether the Global Fund is able to leave a lasting legacy beyond its impact on the three diseases.

Participatory development: don’t take it for granted

In the Alliance’s new global strategy, HIV, health and rights: sustaining community action (2013-2020) we* too are focused on creating lasting solutions – through our own model of community-led programming and South-to-South cooperation.

As we prepare for a post-MDG world, it is more important than ever that civil society owns the development process and its goals.  There will be a need for even greater collaboration with national governments in order to deliver health services for all but, at the same time, we will need to ensure that we join with other civil society organisations to hold governments to account for their actions and remain a critical voice.

For the Alliance, and for the Global Fund, an inclusive model for country-ownership of health (and wider development) priorities, where the role of civil society is seen is vital, is still something that we are going to have to continue to work towards rather than something that we can sit back and take for granted.

We will continue to fight for a seat at the table – to ensure that resources and support reach the people most affected by HIV, and to secure their health and human rights.

* The wide range of community leaders, activists, programme managers and civil society advocates who make up the Alliance.

- Read this statement from the Communities Delegation about the New Funding Model.

- Read more about the external challenges of the HIV epidemic, health, development and human rights on pages 8-9 of our new strategy, and our four strategic responses which unite our efforts to bring about a world in which communities have brought an end to HIV transmission.

Highly visible, India’s hijras manage the threat of violence as a routine and dehumanizing part of their daily lives. (Photo © 2012 Peter Caton for India HIV/AIDS Alliance)

The world has watched over the past weeks as India has struggled to address the causes and consequences of sexual violence, an all too common part of life in this country. The horror of the December 16th rape and murder in New Delhi has not diminished, its brutality a reminder in extremis of our collective failure to respond to male violence in its myriad manifestations.

If there is any good that can come out of this grim demonstration of humanity’s darkness, it is the emerging movement to speak publicly about the culture of rape, harassment and discrimination that limits and destroys the lives of too many Indians. The government’s response so far has done little to build confidence that change will come quickly.

In the past, the standard and accepted reaction of the government and its institutions responsible for public safety and security has been inaction or worse. Of the more than 600 reported rapes in Delhi during 2012, only one so far has been successfully prosecuted. In Punjab, the police response to a young woman’s efforts to report her rape so diminished her that she ended her life rather than face further humiliation.

While tempting and indisputably true, we must do more than simply blame men. Men must change, of this there can be no doubt, but if we really seek transform society, we need to confront the complexity of gender and sexuality. Too often gender and sexuality are framed in a static male-female binary. Few if any of us can honestly say that we don’t routinely encounter variations. Yet these variations are ridiculed and criminalized for failing to adhere to the established norm.

Consequently, far too many lesbian, gay, bisexual and transgender (LGBT) people in India live lives of secrecy and shame. Those who reveal their sexual identities or who deviate from gender norms face social rejection, economic marginalization, and physical violence—by now a familiar litany of consequences for not being a heterosexual male.

If we are to address sexism in India and the violence against women and girls that it generates, we cannot ignore its connection to homophobia and transphobia. Though not identical, they are fellow travelers. Misguided ideas about male heterosexual power and privilege allow men and boys to claim control over the lives of those whose sexuality and gender are different from theirs.

Gender-based violence is an epidemic facing India and the world, and like AIDS, it will require a sustained and committed effort to overcome. Attitudes must change. We must never tolerate violence against women and girls. We must never be blind to gender’s diversity. We must never excuse or accept any violence based on gender or sexuality, and we must never step away from our responsibility to speak, to act and to end this epidemic.

This blog was originally published on the India HIV/AIDS Alliance blog.

The bill makes provisions that go against all better knowledge of a best practice approach to HIV programming based on the respect of human rights and leading to positive public health outcomes for all. For example it provides for non-consensual HIV testing, HIV testing without the knowledge of the patient and the possibility for doctors and dentists to require an HIV test before undergoing medical or dental procedures.  It also proposes that people living with HIV inform any sexual partner or care givers of their status, regardless of the actual risk of transmission.

While some of the latter provisions are undoubtedly aimed at reducing the risk of future HIV infections, the bill as it stands undermines public health efforts to encourage people to learn about their HIV status and puts a disproportionate responsibility on people living with HIV. Some provisions in the current bill are a positive step however: outlawing pre-employment HIV testing and allowing young people from the age of 16 to receive an HIV test without parental consent. In particular, the clause on non-discrimination in the work place has been a long standing demand by civil society and will, I am sure, be welcomed by many in Botswana.

More could be said about the bill and surely Botswana civil society will be making their voices heard in parliament and in the media. But what is most frustrating is that for all the laudable efforts by the government to devise a national HIV programme based on support, openness and availability of services (including anti-retroviral treatment), Botswana has consistently failed to create an enabling legal environment that supports human rights and ensures non-discrimination of people living with HIV.

The National AIDS Council (NAC) of Botswana received a comprehensive report on HIV and the law as far back as 2005. I was a member of the council at the time and still have vivid memories of the lengthy debates about necessary law reform that would help to remove some of the barriers to an effective HIV response. But the report was never acted on. Seven years later, a poorly drafted piece of legislation is being debated in parliament that will undermine a response based on respect, dignity and openness.

Last week in the UK, the Global Commission on HIV and the Law launched its report presenting a coherent and compelling evidence base on human rights and legal issues relating to HIV. Former president of Botswana and long serving chair of the Botswana National AIDS Council, Festus Mogae, was one of the high profile commissioners involved in the report. It is disheartening to think that such an ill informed and badly formulated bill is now being debated in Botswana under his watch and one can only hope that his political influence and wisdom will prevent it from being passed.

This recent episode is just another example of how the law is often not used to promote a legal environment that supports access to HIV services but rather creates an atmosphere of distrust and persecution, fuelled by stigmatising attitudes against people living with HIV. It is sad to think that 30 years into the epidemic we have still not embraced a culture of equity, empowerment and support. Debates such as the current one in Botswana’s parliament also remind us about the urgent need to continue supporting civil society even in relatively well resourced countries in order for them to play the watch dog role that is so desperately needed and to ensure that the public is given the democratic space to critically examine law reform processes.

What is needed is not more well meaning rhetoric about the importance of human rights at international level, but rather support to those on the ground that hold political actors accountable to translate such rhetoric into reality and in the best interest of those with less influence and voice.