Global leaders oppose policies as discriminatory and bad for business

GENEVA/NEW YORK, 28 November 2012—This World AIDS Day, Chief Executives (CEO’s) from some of the world’s largest companies are calling for an end to travel restrictions for people living with HIV. More than 40 CEOs have signed an unprecedented pledge urging the repeal of laws and policies in 45 countries that still deport, detain or deny entry to people solely because they are living with HIV.

The CEOs represent nearly 2 million employees in industries from banking to mining, travel to technology. They include companies like Johnson & Johnson, The Coca-Cola Company, Pfizer, Heineken, Merck, the National Basketball Association, Kenya Airways and Thomson Reuters.

“HIV travel restrictions are discriminatory and bad for business,” said Chip Bergh, President & CEO of Levi Strauss & Co. “Global business leaders are coming together to make sure we end these unreasonable restrictions.”

The CEO pledge is an initiative of the Joint United Nations Programme on HIV/AIDS (UNAIDS), Levi Strauss & Co. and GBCHealth, a coalition of companies that address global health challenges.

“Restrictions on entry, stay and residence for people living with HIV are discriminatory and a violation of human rights,” said Michel Sidibé, Executive Director of UNAIDS. “Every individual should have equal access to freedom of movement. I urge all countries to remove all such restrictions based on HIV status.”

CEOs oppose HIV travel restrictions because they are discriminatory and because to succeed in today’s globalized economy, companies must be able to send their employees and best talent overseas, regardless of their HIV status.

“It’s time to send HIV travel restrictions packing,” said Kenneth Cole, CEO of Kenneth Cole Productions. “Using our collective might, I believe we can use our influence to eliminate these discriminatory practices."

The United States of America lifted its 22-year HIV travel ban in 2010. Other countries, including Armenia, China, Fiji, Moldova, Namibia and Ukraine, have also recently removed such restrictions. However, 45 countries still deny entry, stay, residence or work visas for people living with HIV. These countries include major hubs for international business.

“Travel restrictions on individuals with HIV are unnecessary and hinder the ability for individuals and companies to operate in a truly global workforce,” said Mark Bertolini, Chairman, CEO & President of Aetna.

Most HIV-travel restrictions were imposed by governments in the 1980s when less was known about the transmission of HIV, and treatment didn’t exist. Since then, we’ve learned how to effectively prevent, manage and treat HIV.

Travel restrictions vary in different countries and can include preventing people living with HIV from entering altogether or deporting foreigners once their HIV status is discovered. Restrictions also include denying work visas, prohibiting short-terms stays for business trips or conferences and blocking longer-term stays or residence for work relocations and study abroad programs.

The CEO call to end HIV-related travel restrictions, first launched at the 2012 International AIDS Conference in Washington, D.C., comes on the eve of Secretary of State Hillary Rodham Clinton’s release of a blueprint that outlines the goals and objectives for the next phase of the United States’ effort to achieve an AIDS-Free Generation.    

“Eliminating HIV travel restrictions is a win-win,” said GBCHealth Managing Director and Co-President Michael Schreiber.  “It’s the right thing to do from a humanitarian perspective and the right thing to do from a business perspective.”

Participating CEOs:

Aigboje Aig-Imoukhuede, Group Managing Director/CEO, Access Bank Plc;  Mark Bertolini, Chairman, CEO and President, Aetna; Cynthia Carroll, Chief Executive, Anglo American plc; Vincent A. Forlenza,  Chairman of the Board, CEO and President, BD; Debra Lee, Chairman & CEO, BET Networks;  Andy Burness, President, Burness Communications; Lamberto Andreotti, CEO, Bristol-Myers Squibb Company; Muhtar Kent, Chairman of the Board and CEO, The Coca-Cola Company;  Richard Edelman, President & CEO, Edelman;  Mark R. Kramer, Founder and Managing Director,  FSG;  Glenn K. Murphy, Chairman and CEO, Gap Inc.; Jonathan D. Klein, CEO and Co-Founder, Getty Images;  John C. Martin, PhD, Chairman and CEO, Gilead Sciences, Inc.;  Karl-Johan Persson, CEO, H&M Hennes & Mauritz AB;  Dr. Chris Kirubi, Chairman, Haco Tiger Brands;  Jean-Francois van Boxmeer, Chairman of the Executive Board/CEO, HEINEKEN NV;  Victor Y. Yuan, Chairman, Horizon Research and Consultancy Group;  Bong Yong Dam, CEO, Hub One International Company Ltd;  Jena Gardner, President & CEO, JG Black Book of Travel;  Alex Gorsky, Chief Executive Officer, Johnson & Johnson;  Kenneth Cole, CEO, Kenneth Cole Productions; Dr .Titus Naikuni, MD and CEO, Kenya Airways Ltd;  Chip Bergh, President & CEO, Levi Strauss & Co.;  Kaushik Shah, CEO/Director, Mabati Rolling Mills Ltd;  Kenneth C. Frazier, Chairman and CEO, Merck;  Heather Bresch, CEO, Mylan; David J. Stern, Commissioner, National Basketball Association (NBA); Blake Nordstrom, President, Nordstrom, Inc.;  Ji Yong, General Manager, Northeast Pharmaceutical Group Co., Ltd; Douglas A. Michels, President & CEO, OraSure Technologies, Inc.; Ian C. Read, Chairman and CEO, Pfizer Inc.; Tzameret Fuerst, CEO, Prepex;  Bob Collymore, CEO, Safaricom; Hiromasa Yonekura, Chairman, Sumitomo Chemical;  Liam E. McGee, Chairman, President and CEO, The Hartford;  James C. Smith, CEO, Thomson Reuters; Mikkel Vestergaard Frandsen, CEO, Vestergaard Frandsen;  Philippe Dauman, President & CEO, Viacom; Richard Branson, Founder, Virgin Unite;  Melissa Waggener Zorkin, CEO, President & Founder, Waggener Edstrom Worldwide;  Andy Payne, CEO, Wilderness Holdings Ltd;  David Sable, CEO, Y&R;  William H. Roedy, AIDS Activist and former Chairman, MTVN International

UNAIDS Executive Director Michel Sidibé met with the Head of the President’s Delivery Unit for Development Monitoring and Oversight, Kuntoro Mangkusubroto in Jakarta on 24 October 2012.
Credit: UNAIDS/E.Wray

Countries pledged to reach eight Millennium Development Goals (MDG) by 2015, including reversing the AIDS epidemic. Much progress has been made in reaching these goals. However, there is recognition that the world will still need to focus on these goals beyond 2015. Therefore, the United Nations Secretary General Ban Ki-moon has appointed Indonesia, along with the United Kingdom and Liberia, to co-chair a High-Level panel tasked with setting future development priorities beyond 2015.

Indonesia’s Head of the President’s Delivery Unit for Development Monitoring and Oversight and advisor to Indonesia’s President on the  post 2015 development agenda, Kuntoro Mangkusubroto committed to not only maintaining but expanding key global development goals during a meeting with UNAIDS Executive Director Michel Sidibé in Jakarta on Wednesday.

“I would like to congratulate Indonesia for leading the work to develop the post 2015 development agenda,” said Mr Sidibé. “This shows trust in Indonesia, not only as a country that is influencing the agenda in Asia but in the world. This exercise is a unique opportunity to really bring the debate around creating an inclusive society and redistribution of opportunity to the world table.”

Mr Kuntoro agreed that the current MDGs had greatly contributed to the world’s development. “We are not going to close the MDG chapter and open a new book. We think MDGs are good and we need to maintain them, but we also want new social issues like social inclusiveness to be addressed,” said Mr Kuntoro.

Dialogue with civil society

After meeting with the President’s advisor, Mr Sidibé had a dialogue with civil society organizations representing people living with HIV and key affected populations in Indonesia.  The discussion, moderated by Professor Irwanto and held at the AIDS research centre of the Atma Jaya University in Jakarta, reviewed current HIV policies and their implementation, as well as to hear the concerns of civil society on how HIV should be addressed in the post 2015 development agenda.

Professor Irwanto reminded the gathering about the important role played by civil society in the AIDS response. “The problem is that, right now, we feel that civil society is getting less and less attention. We hope that the role of civil society is not only maintained but strengthened because the achievements so far could not have been reached without civil society,” said Professor Irwanto.

Civil society participants discussed a wide variety of concerns including ensuring that civil society is given the opportunity to contribute to the development of national guidelines on HIV, the need to ensure antiretroviral therapy is made accessible to everyone needing treatment and how to support women living and affected by HIV.

UNAIDS Executive Director Michel Sidibé participating in a dialogue with civil society organizations representing people living with HIV and key affected populations in Indonesia. 24 October 2012.
Credit: UNAIDS/E.Wray

“Many of you have been helping us to frame the HIV response in a different way. You have changed the dynamic of social mobilization,” said Mr Sidibé. “Let us work together. I am asking you to help us to ensure that AIDS remains high on the development agenda. Let us not miss the opportunity to bring to shape the debate on the post 2015 development agenda,” he added.

Indonesia spearheaded a movement among countries in the Association of Southeast Asian Nations (ASEAN) to reach the global vision of zero new HIV infections, zero discrimination and zero AIDS-related deaths through the ASEAN Cities Getting to Zero initiative. The move is part of an effort to strengthen collaboration between countries in the region to control the epidemic. Jakarta was chosen as one of three Indonesian cities participating in the programme.

Mr Sidibé visited Jakarta’s model community health centre, located in the city’s Tambora district, which is participating in the ASEAN Cities Getting to Zero project. The centre provides comprehensive HIV services, including voluntary counselling and testing, prevention of mother-to-child transmission, HIV treatment care and support, as well as methadone treatment for people who use drugs.

Her Royal Highness Crown Princess Mette-Marit of Norway presents the Red Ribbon Award for Stopping new HIV infections in children and keeping mothers alive, women's health to the Giramatsiko Post Test Club. XIX International AIDS Conference (AIDS 2012), Washington D.C. Credit: IAS/Ryan Rayburn

Justine, a 38-year-old Ugandan woman, tested positive for HIV during an antenatal visit at the local health centre when she was pregnant with her fourth child. After disclosing her HIV status to her husband, he left home and never came back.

She did not go through the pregnancy alone though. Justine had the support from her peers at Giramatsiko Post Test Club, a grassroots organization established in 2002 in Kabwohe, Uganda.

The organization was set up by seven women living with HIV with the aim to empower and educate their peers about HIV prevention, treatment, care and support. In addition to focusing on their health and physical well-being, Giramatisko also empowers women to understand their rights to health services.

“Finding out you are HIV-positive brings physical and spiritual distress and the accompanying shame and discrimination have prevented many individuals from seeking treatment and leading a productive life,” notes Fara Twinamatsiko, a founder and chairperson of Giramatsiko.

A peer educator from Giramatsiko referred Justine to a health facility during her pregnancy where she received antiretroviral drugs to prevent HIV transmission to her child. The drugs helped ensure that Justine gave birth to a healthy, HIV-negative baby.

With a small staff and dozens of volunteers, the Giramatsiko Post Test Club currently reaches out to women in 19 centres in the Sheema district of western Uganda where they provide emotional and psychological support, HIV testing and counselling as well as referring women to health centres to access antiretroviral medicines, antenatal care and other services.

Countering stigma and discrimination

Though stories like Justine’s are not uncommon in Uganda—and in many other parts of the world—there are signs of hope as individuals and communities take action to counter HIV related stigma, discrimination and harmful social norms.

The Giramatsiko founders have confronted discrimination head-on by disclosing their own HIV status. In doing so, they have helped hundreds of other men and women in Uganda, young and old, openly discuss their experiences. They are breaking taboos and challenging the stigma associated with HIV.

“We have a very conservative attitude towards HIV in our community, but no social problem can be solved without open discussion and education,” says Tumushabe Sedrida, Coordinator at Giramatsiko.

According to the 2011 Uganda AIDS Indicator Survey, HIV prevalence in Uganda increased from 6.4% in 2004-5 to 6.7% in 2011. To-date, the HIV prevalence among women in the age group of 15-49 is 7.7% while that of men is 5.6%. Regarding pregnant women living with HIV, an estimated 53% receive services to prevent new HIV infections in their children and just 17% receive treatment for their own health. These gaps in access to HIV services emphasize the need for organizations like Giramatsiko.

Red Ribbon Award

Ten years on, Giramatsiko continues to prove that a small group of individuals can make a big difference in the lives of an entire community.

In recognition of its efforts to reduce new HIV infections in children, keep mothers alive and change community perceptions about people living with HIV, Giramatsiko received the  UNAIDS Red Ribbon Award at the XIX International AIDS Conference in July 2012. The award recognized ten organizations worldwide that have undertaken innovative and outstanding community work in the response to HIV.

Despite recent accolades, Giramatsiko’s work is far from complete. “Our aspiration is to touch many and save more lives,” notes Ms Sedrida.

Nearly eighty countries have laws that criminalize same-sex sexual relations. UNAIDS Infographic: I am Gay--5 things I fear.

In many regions of the world, punitive laws and practices against lesbian, gay, bisexual and transgender and intersex (LGBTI)[1] individuals continue to block effective responses to HIV. A range of human rights violations have been documented, from denial of health services and freedom of association to harassment, violence and murder.

Last week, a youth organization in Cameroon is reported to have held an anti-LGBT rally; the news followed a series of arrests and detentions in recent years of Cameroonian men who have sex with men based on their sexual orientation.

In Zimbabwe, where sex between men is illegal, police officers arrested and later released 44 members of the organization Gays and Lesbians Zimbabwe (GALZ) on 11 August 2012 following the launch of a GALZ report documenting human rights violations of LGBT individuals.

In Europe, a report on the human rights situation of LGBTI people—published in May 2012 by the European Region of the International Lesbian, Gay, Bisexual, Trans and Intersex Association (ILGA-Europe)—documented many cases of violence, hatred and discrimination against LGBTI people.

Studies in the United States, Canada, Europe and Australia have documented high levels of homophobic bullying in schools and lack of support from school authorities. A recent study conducted in the United States, for example, found that more than 84% of young LGBT learners had been called names or threatened, 40% had been pushed or shoved, and 18% had been physically assaulted at school.

Several cities in the Russian Federation recently passed laws prohibiting public information on sexual orientation and gender identity. Similar legislation is pending before the Ukrainian parliament. UNAIDS believes such laws discriminate against LGBT people by curtailing their freedoms of assembly and speech, threaten HIV outreach organizations supporting them, and may be used to justify homophobic bullying and violence.

A ‘climate of hate and fear’

Evidence and experience have shown that punitive laws and practices drive sexual minorities away from HIV services. A study conducted in Senegal, for example, found that prosecutions and harassment of LGBT individuals in 2008 led to “pervasive fear and hiding” among members of these groups. According to the study, some health providers suspended their HIV prevention work with men who have sex with men out of fear for their own safety; those who continued to provide health services noted a sharp decline in participation by men who have sex with men.

"Human rights violations based on people's real or perceived sexual orientation, gender identity or expression sanction the climate of hate and fear that keeps LGBTI people further in the closets,” said human rights advocate Joel Nana, Executive Director of the non-profit organization African Men for Sexual Health and Rights (AMSHeR). “Such violations discourage health-seeking behaviour, deny access to key health services and sustain the increasing incidence of HIV infection among men who have sex with men and transgender people," he added.

High HIV prevalence among men who have sex with men, transgender people

In many regions of the world, men who have sex with men and transgender people experience high HIV prevalence and low coverage of HIV prevention, treatment, care and support services.

Recent studies from sub-Saharan Africa show that HIV prevalence among men who have sex with men ranges from 6% to 31%. In Asia, the odds of men who have sex with men becoming infected with HIV are nearly 19 times higher than in the general population. In Latin America, an estimated half of all HIV infections in the region have resulted from unprotected sex between men.

Studies among transgender people have shown disproportionately high HIV prevalence ranging from 8% to 68%. Without access to HIV information and services free of fear, criminal sanction and homophobia, these trends cannot be addressed.

“World leaders are increasingly speaking out against discrimination and criminalization on the basis of sexual orientation and gender identity,” said Susan Timberlake, Chief of the Human Rights and Law Division at the UNAIDS Secretariat. “In launching its report in July, for example, the Global Commission on HIV and the Law issued a strong call for decriminalization of LGBT people and their protection in the context of the AIDS response.”

Some positive developments

Despite setbacks, there are some encouraging developments in favour of equality, non-discrimination and access to health services for sexual minorities.

On 12 July 2012, the President of Chile signed into law an anti-discrimination law that punishes hate crimes, including against LGBT people. Introduced some seven years ago, the adoption of the anti-discrimination law gained momentum following the brutal murder of Daniel Zamudio, a 24-year-old homosexual man.

On the International Day Against Homophobia and Transphobia, 17 May 2012, the European Region of Education International, the European Trade Union Committee for Education (ETUCE), the European Trade Union Confederation (ETUC) and ILGA-Europe committed to strengthen their collaboration to prevent and combat homophobia and transphobia at national and European levels in school, the workplace and society.

In February 2010, the Government of Fiji became the first Pacific Island nation to formally decriminalize sex between men. Fiji’s new Crimes Decree removes previous references to “sodomy” and “unnatural acts” and uses gender neutral language when referring to sexual offences.

In 2009, the High Court of Delhi held that criminalization of same-sex relations is unconstitutional and that it “pushes gays and men who have sex with men underground,” leaving them vulnerable to police harassment and impeding access to HIV services.

UN advocacy and action

In March 2012, the UN High Commissioner for Human Rights presented a report at the 19th session of the UN Human Rights Council documenting discriminatory laws and practices and acts of violence against LGBT individuals based on their sexual orientation and gender identity. The report called on all countries to decriminalize consensual same-sex relations and to ensure that individuals can exercise their rights to freedom of expression, association and peaceful assembly in safety and without discrimination.

At last year’s UN General Assembly High Level Meeting on AIDS, UN Member States committed to reviewing laws and policies that adversely affect the “successful, effective and equitable delivery of HIV services.” UNAIDS encourages all countries to translate this commitment into action to protect the human rights and health needs of LGBT people.

[1] The acronym “LGBTI” is used as an umbrella short-hand for groups and/or individuals whose sexual orientation or gender identity differ from heterosexuality and who may be subject to discrimination, violence and other human rights violations on that basis. Information and data presented in this article may not apply equally to all the groups represented by this acronym. [Back to top]

www.joinred.com

Delivering an AIDS-free generation is the goal of a new (RED) campaign unveiled this summer. In partnership with America Móvil, a leading wireless provider in Latin America, the (RED) RUSH TO ZERO campaign aims to raise awareness and mobilize resources to end new HIV infections among children by 2015.

Through the campaign, launched in June 2012, funds generated by the sale of wireless products with (Telcel)^RED and (Claro)^RED branding—two America Móvil networks—will benefit programs supported by the Global Fund to Fight AIDS, Tuberculosis and Malaria that prevent new HIV infections among children in Latin America and Africa. America Móvil has committed an annual contribution of up to US $2 million to the AIDS response from 2012 to 2015 through the support of all America Móvil subsidiaries and other Grupo Carso companies, as well as the Carlos Slim Foundation.

According to the latest data from UNAIDS, an estimated 40,000 children were living with HIV in Latin America in 2011. That same year, some 2,000 children in the region were newly infected with HIV.

“UNAIDS salutes the (RED) campaign and its partners for this important initiative,” said Dr César Núñez, UNAIDS Regional Director for Latin America. “(RED) RUSH TO ZERO has helped bring us one step closer to our common goal of zero new HIV infections among children.”

(RED) campaign

Since 2006, (RED) has engaged businesses and consumers in the global HIV response raising, to date, more than US $190 million in partnership with globally-recognized brands. For each product sold, (RED) partners contribute up to 50% of profits toward the Global Fund to Fight AIDS, Tuberculosis and Malaria.

Through the new campaign in Latin America, (Telcel)^RED and (Claro)^RED products will be displayed in Claro and Telcel stores throughout Latin America. Customers will be informed about how the campaign works and how they can help bring an end to AIDS.

Thusnelda Guruses, Project Coordinator from Hui Da Re, a community-based organization, encourages participants through storytelling to critically think about multiple concurrent relationships and HIV transmission.

The Khaibasen Community Project in Namibia has been engaged in raising awareness, providing education and giving a voice to vulnerable communities, especially girls who are engaging in transactional sex to make ends meet.

“I have felt emotionally and mentally empowered by the talk sessions which the Khaibasen Community Project has given us. The psycho-social support group meetings gave me important knowledge about my rights and how to take care of myself,” said Gan-Gans, a 24-year-old sex worker and a regular attendee of these meetings. The community project supports vulnerable women and girls in the informal settlement of Keetmanshoop, to enable them to better articulate their rights and deal with critical issues, such as sexual and reproductive health, gender-based violence, and HIV prevention, care and treatment services.

“With the financial and capacity building support provided by UNAIDS we are able to reach vulnerable women in informal settlements in Keetmanshoop,” said Desiree Haman, Coordinator of the Khaibasen Community Project. The project provides HIV-related advice, training and support to women, including sex workers, transgendered women, lesbians and young people, especially in the Karas region.

Information-sharing meetings and workshops are also organized to assist women to understand their basic rights in accessing public services and provides training  on how to mobilize and educate other women in their settlements. “This fund is extremely important and without this financial- and capacity-building support grassroots groups working with communities in informal settlements would not be able to sustain their work,” said Jennifer Gatsi Mallet, Director of Namibia Women’s Health Network. According to Ms Mallet, community programmes supported by UNAIDS have seen significant progress in scaling up and promoting community ownership, leadership and continuity in changing small community-based groups, especially those led by young women and men.

Since 2002, UNAIDS has given small grants to more than 175 organizations in Namibia, which are implementing catalytic HIV prevention and care activities at the grassroots level. Namibia’s HIV response for communities in informal settlements continues to be primarily funded by development partners. The Government of Finland has donated 800,000 euros to UNAIDS for the implementation of grassroot level activities in southern Namibia during this period. Monitoring and evaluation mechanisms have also been put in place to ensure the funds are appropriately utilized to assist the poorest and the most vulnerable communities.

“Finland's human rights-based approach to development aims to ensure that even the poorest know their rights and are able to exercise them,” said Anne Saloranta, Chargé d'Affaires at the Embassy of Finland in Namibia. “Development entails more and better possibilities for people to influence and enhance their own lives.”

In 2011, this programme (also known as Small Grant Fund) was repositioned to fill a strategic niche in the HIV-related funding landscape in Namibia: to provide funding and capacity building support to community-based organisations working to address the vulnerability to HIV of marginalised populations in informal settlements in the Khomas, Karas and Hardap region. Special focus is placed on young women and girls, people with disabilities and people living with HIV.

The programme has shown that it does not take billions of dollars to make a difference in people´s lives. Support provided by the initiative has enabled these organizations to reinforce the grassroots interventions to address issues relate to HIV at the community level.

Another beneficiary has been the Namibian National Association of the Deaf (NNAD). The association serves as an innovative, responsive and dynamic organization to ensure the protection and promotion of the rights, needs and concerns of deaf people in Namibia. Often marginalized due to their disability, they bring renewed hope for the deaf community in Namibia. They have been increasing awareness on issues affecting deaf people at all levels from making information available to raising awareness about issues on sexual reproductive health, family planning and gender based violence. A major goal is to reduce the burden of HIV in deaf communities in the Khomas, Hardap and Karas regions. Paul Nanyeni, Chairperson for NNAD, said he is thankful for the support. “We are happy with UNAIDS because we are able to offer the deaf community training on HIV and gender-based violence, which could otherwise be a big catastrophe in their lives,” said Mr. Nayeni. “With this support, the Association can provide better services for the deaf.”

L to R: UNAIDS Executive Director Michel Sidibé, UNAIDS Goodwill Ambassador Annie Lennox, Trina Scott from Advocates for Youth, Patrick Holzfaster from Levi Strauss & Co. and Julie Rhoad, Executive Director of the NAMES Project. Washington DC, 21 July 2012. Credit: UNAIDS/C.Kleponis

As thousands of delegates from around the world gather for the XIX International AIDS Conference in Washington, the NAMES Project AIDS Memorial Quilt, one of the most prominent symbols of the global response, was unveiled across the metropolitan DC area.

UNAIDS Executive Director Michel Sidibé and UNAIDS Goodwill Ambassador Annie Lennox joined the NAMES Project Foundation, several high-level personalities and around 300 members of the YouthForce activist alliance at the unveiling ceremony at the Mall. After a section of the Quilt was unfolded, those gathered took turns to read the long list of names.

Part of the Quilt, which is now well over 30 years old, will be displayed in 50 venues from 21-25 July, including at the National Mall. The entire Quilt, the largest community art project in the world, carries the names of 94 000 people who have lost their lives to AIDS on more than 48 000 individual panels. During the ceremony, a single panel from 1988 that has yet to be sewn into the quilt was displayed publicly for the first time. The design of the panel simply says “The last one”.

The memorial, which is now 50 miles long, affords an opportunity to look back at the previous decades of the AIDS epidemic and to reflect on what needs to be done in future to ensure that no further names are added, that each new name should be the last one.

“It is possible to imagine a day when we will sew the last panel in the AIDS Quilt,” said Mr Sidibé. “Until that day comes, we must do everything we can to work towards an AIDS-free generation. We have a clear goal, so let us make it happen.”

Throughout its history, which began in 1987 when activists in San Francisco found a resonant way to remember friends and loved ones lost, the Quilt has been used to challenge prejudice and raise both awareness and funding. So far it has led to US$ 4 million in donations for services for people living with HIV.  It is also been used as a means to join hands across the global community in the AIDS response and as an effective tool in HIV education and prevention. Based in the United States, the Quilt now has an international profile with panels from nearly 30 other countries.

According to Annie Lennox, the human toll of the epidemic and the real cost of inaction are starkly and powerfully presented in an arresting visual way.

“For thirty years, global AIDS activists and campaigners have been working to create the effective and lasting changes we need to see before we reach the stage of zero new HIV infections,” said Ms Lennox. “We are now at a crucial point in history when could actually see the dream become a reality in our lifetime. It is therefore, absolutely imperative that we see this thing through. We can, and we must,” she added.

There was an emphasis on youth at the ceremony; given the critical role young people have to play in the AIDS response now and in the future. They bear a heavy burden, with 2 400 new HIV infections among 15-24 year olds occurring every day: they account for 40% of all adults who are newly diagnosed as HIV-positive. The gathering heard how young people need to lead the challenge to the epidemic and that they hold the power to turn the tide in their hands.

The ceremony, though sombre, was also full of hope that in remembering those who have been lost, the AIDS community is further galvanized and reinvigorated in its effort to bring about the vision of zero new HIV infections; zero discrimination and zero AIDS-related deaths.

AIDS activists fighting for better health, equity and social justice.
Credit: ACT UP

Before there was a name for it, there was a voice. Before there was treatment, there was a movement. AIDS activism has revolutionized the way the world approaches health. In the epidemic’s 30-year history—AIDS activists have sparked the imagination and actions of millions fighting for better health, equity and social justice.

AIDS activism had its start with groups like ACT UP—the AIDS Coalition to Unleash Power. Twenty-five years ago this month, Larry Kramer was speaking from his heart in New York and galvanizing what would become the first group to use political advocacy to change the course of the AIDS epidemic.

“I spread the word that I was going to make a speech at the community centre, and an awful lot of people showed up, I'm happy to say,” said Mr Kramer in an interview in 2005. “It was amazing; it was totally amazing.”

“Larry called us together and asked us to help him take to the streets to sound the alarm that AIDS had become the largest killer of young men and women in cities like New York and the government and society was doing nothing,” said UNAIDS Civil Society Partnership Advisor Eric Sawyer. “We were charting a new path—no one had ever organized a social justice activist movement around a health issue, let alone organizing a civil disobedience on health to mirror the civil rights movement. We were both excited and a bit scared as we had no social or legal protections and were being fired from jobs, evicted from our homes and even physically attacked due to societal fear and discrimination."

One of the things ACT UP was known for was its public and confrontational style. “You do not get more with honey than you do with vinegar; you just do not,” said Mr Kramer in the documentary Age of AIDS. “If it makes them angry enough, maybe they'll say why are they angry.”

Also ground-breaking was the use of strong messages and graphics such as the Silence=Death campaign which helped break the “conspiracy of silence” around the AIDS epidemic.

Now 25 years into AIDS activism Mr Sawyer thinks the advent of effective HIV treatment has made many people complacent. “There is a false belief that the AIDS epidemic is under control,” he said. “While circumstances for people living with HIV are much improved—nearly 2 million people will still die of AIDS this year and AIDS activism is needed now more than ever!”

ACT UP will mark its anniversary with an old-style march through the streets of New York on 25 April 2012. Mr Sawyer explains that ACT UP and Occupy Wall Street will take to the streets again to demand a financial transaction tax as a way of gaining innovative sustainable financing for global health initiatives such as the AIDS response.

Today, out of the 34 million people living with HIV worldwide, about 6.6 million people in low- and –middle income countries have access to HIV treatment with nearly 8 million additional people still in need.

Credit: UNAIDS

“What’s in a name?” asked Yvette Raphael during a meeting with representatives from more than 15 civil society networks in South Africa and the UNAIDS Executive Director. Ms Raphael was talking about the challenges faced by civil society and networks of people living with HIV. She brought up how sometimes something as basic as a “name” or how people talk about HIV can be obstacles to services and life. Ms Raphael gave examples of clinics with depressing names no one wanted to go into and even some of the names given to children living with HIV. “I mean, who wants to marry ‘Sadness’,” she said. “We need to normalize the language and terminology we use when we talk about AIDS.”

Mpho Moteble, a university student lamented the fact that HIV and other health services are not available at her school. While students can get an HIV test and counselling, they can’t get HIV treatment on campus or a pap smear for cervical cancer screening. For these services she must go to a general clinic where she says she isn’t with her peers and it can be very uncomfortable, “I don’t want to see my aunt at the clinic—and have her ask me, aren’t you supposed to be at school?” Ms Moteble said far too few campus clinics offer integrated services, making it difficult for busy students to follow through. 

Civil society groups raised many of the difficult issues facing South Africa, from getting services to people with disabilities living with HIV, hate crimes and violence against women to discordant couples. Another important issue raised was how the country will approach HIV treatment options in the near future when first-line antiretroviral treatment is no longer effective.

Johanna Ncala was one of many who raised the point of how people living with HIV can contribute to HIV prevention efforts. She also talked about daily life and how difficult it can be to disclose one’s status or to always use condoms. Another participant mentioned that while adults have support groups for sharing life experiences, she is seeing a new generation of adolescents born with HIV that are growing up without the life skills and knowledge needed to effectively engage in a relationship.

Pholokgolo Ramothwala from Positive Convention moderated the discussion. He noted that much progress had been seen in the last few years and that has re-energized groups to push for more action on these tough issues.

UNAIDS Executive Director Michel Sidibé echoed this theme of not shying away from the complex areas. “You are all agents of change,” he said. “UNAIDS stands in solidarity with you and we will continue to mobilize for the change we all want to see happen.”

Michel Sidibé, Executive Director of UNAIDS and Vince Crisostomo, Executive Director of the Coalition of Asia and the Pacific Networks on HIV and AIDS.
Credit: UNAIDS/Kim

A wide range of representatives from key affected communities in the AIDS response joined UNAIDS Executive Director Michel Sidibé on 27 August for an interactive dialogue to share their concerns and reflections. The hour-long “Common Ground” session, organized on the second day of the 10^th International Congress on AIDS in Asia and the Pacific (ICAAP 10), was held in memory of Dr Robert Carr, a well known AIDS activist and human rights defender who passed away in May 2011.

“My hope is that this will live up to Robert Carr’s vision of all people coming together, regardless of who we are, what we are and where we are—that we will be able to create spaces that empower our communities to move forward in the AIDS response,” said Vince Crisostomo, Executive Director of the Coalition of Asia Pacific Regional Networks on HIV/AIDS (7 Sisters) and Chair of the “Common Ground” session.

According to a new report from UNAIDS launched ahead of ICAAP 10, HIV infections in the Asia and the Pacific remain concentrated among key populations: people who buy and sell sex, people who inject drugs, men who have sex with men, and transgender people. Most programmes to protect key populations and their intimate partners from HIV infection are inadequate in size and scale. Across the region, stigma and discrimination against people living with HIV and key populations remain rife, the report found.

In his opening remarks, Mr Sidibé recalled his recent visit to the city of Chengdu, China, where he saw first-hand the critical role that civil society organizations play in ensuring access to HIV services for people who inject drugs and men who have sex with men. “Civil society is the engine in the response to AIDS—particularly in Asia and the Pacific,” said Mr Sidibé. “Policy reforms are needed to give these organizations the space to fully engage,” he added.

Participants in the dialogue raised a number of issues with the UNAIDS Executive Director, including the need for increased access to antiretroviral treatment across the region, as well as for drugs that are simpler, more robust and more resistant. As of end-2009, more than 60% of people eligible for treatment in Asia and the Pacific were not able to access it, according to the new UNAIDS report.

Representatives from organizations of sex workers underscored that the criminalization of sex work remains a major issue across the region. “Despite all the talk about decriminalizing sex work year after year at conferences, only one country in this region has actually done so: New Zealand,” said Janelle Fawkes, a sex worker and Chief Executive Officer of the Scarlet Alliance, an organization based in Australia.

Across the region, punitive laws and policies continue to hamper the AIDS response. Ninety per cent of countries in Asia and the Pacific have laws and policies that prevent people living with HIV, and key populations at higher risk, from accessing life-saving HIV services.

Among the other issues raised at the forum were the need for increased funding for civil society organizations and the importance of human rights protections for key affected populations.