The UNAIDS is the first UN programme to have civil society formally represented on its governing body. The NGO Delegation to the UNAIDS Program Coordinating Board (PCB) has three roles:

  • Participating objectively and independently in the workings and decision-making of the PCB
  • Undertaking various forms of proactive and informed advocacy within the structures and processes of the PCB;
  • Enhancing the transparency and accountability of relevant PCB decision-making and policy-setting, helping to meet requirements for upwards accountability (towards the PCB and other delegations) and downwards accountability (towards the people, communities and constituencies affected by HIV)

Civil Society Representation on the UNAIDS Programme Coordinating Board

Africa

Jonathan Gunthorp

SRHR Africa Trust (SAT) is a 28 year-old African NGO focused on adolescent SRHR & HIV. Working with and for adolescents & young people (10-24 years old) in Southern Africa, and also with communities, advocates and activists, SAT focuses on three impact areas: Increasing access of adolescents and young adults to youth-friendly, gender transformative SRH services and SRH rights; building and strengthening adolescent and young adults’ meaningful participation and leadership in SRHR and health; and advocating for removing barriers to access and strengthening protective environments. SAT works with UN agencies globally and in Southern Africa, with cooperating partners, government ministries, traditional leaders, and young leaders to create partnerships for change. SAT supports the new SADC SRHR strategy and scorecard and works for a region where adolescents have universal access to SRHR & HIV education, information, counseling and services in emerging universal health coverage systems.

Jonathan Gunthorp is the Executive Director of SAT. Based in Johannesburg, he leads SAT’s regional advocacy and innovation for impact in SRHR and HIV. Jonathan sits on the 10-person African Union Commission Civil Society Reference Group on Ending Child Marriage, and has worked in different ways in some 11 African countries. Before joining SAT he worked in fields as various as higher education reform, and TEVET policy, as well as HIV and SRHR. He has an MBA but considers activism his education. His work passion is adolescent health and rights.

Lucy Wanjiku

Positive Young Women Voices (PYWV) is a grassroots community based organization in Nairobi, Kenya. It was formed in October 2016 by five young women who were born and raised in Dandora and share common experiences: sexual and gender-based violence, dropping out of school, teenage pregnancy, and becoming infected with HIV at a young age. They also share the same passion of empower their peers to overcome such vulnerabilities and ensure that they stay AIDS Free. PYWV is a member of The PACT, a coalition of youth-led and youth serving organizations in Africa working within the sexual and reproductive health and rights (SRHR) and HIV movements. It is also a member of NEPHAK and the East and Southern Africa Youth Alliance to end AIDS by 2030.

Lucy is the founder and Team Leader of the PYWV and represents the organization in the Delegation. She is a visionary leader. She is passionate about the rights of girls and young women in all their diversities and their role in meaningful involvement in the HIV response. She was also the founding coordinator of Sauti Skika, the first Kenyan network of adolescent and young people living with HIV in Kenya. She is also involved in the Country Coordinating Mechanism to the Global Fund in Kenya as an alternate board member representing people living with HIV. She is involved in the the HIV advocacy at the national, regional and global levels.

Asia and the Pacific

Aditia Taslim Lim

Rumah Cemara was formed by five recovering drug users in 2003 as a safe space for people who use drugs and people living with HIV. It envisions an Indonesia without stigma and discrimination where all people have equal access to quality health services, are protected under rights-based laws, and have opportunity for development. Rumah Cemara is involved on HIV and drugs issues at local and national levels. At the regional and global level, it is actively involved with the International HIV/AIDS Alliance, International Drug Policy Consortium and other networks outside HIV and drugs issue, such as sports for development. It has also been involved in a series of judicial reviews on the narcotics law and the national insurance coverage the effects of drug use. Recently, the organisation was involved in the consultation process on the Global HIV Prevention Coalition Roadmap.

Aditia is the incoming Executive Director of Rumah Cemara and represents the organization in the Delegation. As a person who uses drugs, his experience and knowledge has allowed him to contribute to Rumah Cemara’s community drug treatment center in developing coping skills and dealing with psycho-social issues. He has also become one of the initiators in the development of innovative approaches to ending stigma and discrimination through the use of sports, such as football, boxing and running in Indonesia. Aditia was 17 years old and living in another country when he found out about his HIV status. He has been living with HIV for 16 years now.

Jules Kim

Jules Kim is a Korean/Australian sex worker and the CEO of Scarlet Alliance, Australian Sex Workers Association -the peak national organisation that has been representing sex workers and sex worker organisations, collectives and projects throughout Australia since 1989. She has been the Chair for the regional sex worker network, Asia Pacific Network of Sex Workers (APNSW) since 2016. Jules represents sex workers on a number of government committees and advisory mechanisms such as the Blood Borne Viruses and Sexually Transmissible Infections Standing Committee and the National Roundtable on Human Trafficking and Slavery. She was appointed by the Federal Minister for Health to the Ministerial Advisory Committee on Blood Borne Viruses and Sexually Transmitted Infections to provide independent, expert advice as a member of the Australian Government’s key advisory body on the national response and management of blood borne viruses and sexually transmitted infections, including HIV and AIDS. Jules has written and presented on a range of issues including sex work, migration, community mobilisation and advocacy and provided testimony and submissions at a range of fora including at government hearings and to the United Nations in relation to human trafficking, law reform, HIV and sex work.She has over 20 years experience in sex worker advocacy, community development and representation.

Europe

Alexander Pastoors

Hiv Vereniging is a Dutch HIV grassroots organisation based in Amsterdam. It’s an association founded in 1990 by people living with and affected by HIV for people living with and affected by HIV and it is the only nationwide operating HIV service organisation. Within the association there are multiple sections catering to the specific needs of migrants, women, young people, long term survivors and gay, bisexual and other men who have sex with men (MSM) amongst others. The association functions as a knowledge hub for non biased information about living with HIV and connects people living with HIV to share their experiences. Next to providing good information about living with HIV one of the main focal points of Hiv Vereniging is to fight against stigmatisation and discrimination of people living with HIV. Hiv Vereniging was the local community organisation co-organising AIDS 2018 in Amsterdam.

Alexander has been active as a grassroots community activist within Hiv Vereniging since 2007. He’s been on the board of the association for 6 years, 4 of which he functioned as president. He’s know as a pragmatic, strategic and diplomatic activist building bridges between organisations and connecting people. He’s currently the international affairs representative of Hiv Vereniging. Next to his work in Amsterdam he’s also a member of the board of directors of ICASO (International Council of AIDS Service Organisations) based in Toronto. Apart from his voluntary work in HIV and AIDS he works part time as a policy advisor for the royal institute of Dutch architects in Amsterdam.

Karen Badalyan

Eurasian key populations health network – EKHN (www.ekhn.pl) is a Key Populations communities based and run innovative partnership that leads and inspires the Eurasian region in achieving universal access to HIV prevention, treatment, care and support. We are committed to lead the region to achieving the key global targets, in particular: 1) Sustainable Development Goals (SDG); 2) Universal Health Coverage (UHC); 3) Health 2020; and 4) UNAIDS 90-90-90 Strategy.

In capacity of the EKHN Executive Director, Karen serves as a liaison between Board, Secretariat and Membership. Karen possess diploma of Master of Sciences from Yerevan State University and Doctor of Biology from Armenian National Academy of Sciences. Main topic of studies are immunology, virology and immunogenetic. She is the author of 17 scientific publications, including studies and research and 23 books and IEC.

From 2006 – 2016, she was the elected chair of “We For Civil Equality” community based NGO in Armenia working on HIV/AIDS prevention, treatment and care among key population. Since 2016, she is the Executive Director EKHN. With 15 years of experience in HIV/AIDS, Human Rights, Public Health and Gender, she used to serve as peer reviewer, expert, trainer and consultant for several institutions: amfAR, USAID, UNDP, WHO, UNAIDS, EQUITAS, EATG, GF, MSMGF, etc. In 2014 – 2016, she was the Ombudsperson of EATG and from 2015 she is the Council of Europe SOGIE Expert in the framework of the implementation of activities in the field of combating discrimination on grounds of SOGIE.

Latin America and the Caribbean

Gracia Violeta Ross

Gracia Violeta Ross is Bolivian; she is a Social Anthropologist with postgraduate studies on Gender, Sexual and Reproductive Health.

In 2000, Violeta Ross discovered her HIV positive status and founded the Bolivian Network of People Living with HIV/AIDS (REDBOL) serving as its President in different periods including the present. Violeta led the process for the demand of antiretroviral medications in Bolivia, the elaboration and negotiation of the HIV law and currently leads the demand for inclusion of public funding for the sustainable response to HIV in Bolivia.

Violeta Ross represented Bolivia and Latin America in several global bodies. The roles of representation of Violeta include the Developing Countries NGO Delegation to the Global Fund to fight AIDS, TB and Malaria. Violeta was an adviser to the Civil Society Advisory Group for UN Women in Latin America. She was a member in the TB-HIV Working Group for the Stop TB Partnership, the WHO Civil Society Task Force and advised the Experts Advisory Group to the Medicines Patent Pool. Violeta was the Board Member for the Communities Living with the Diseases Delegation in UNITAID board until 2017.

Ross is a public speaker, writer and researcher on HIV, gender based violence, health and human rights, she writes about her experience as a rape survivor and as a woman living with HIV.

Jumoke Patrick

The Jamaican Network of Seropositives (JN+) is a national network which advocates for the rights and concerns of people living with and affected by HIV, through empowerment, partnership, and resource mobilization. JN+ provide support to the community of People living with HIV through capacity building projects/programmes using our Positive Health Dignity Prevention curriculum (PHDP). The organization receives complaints of HIV-related stigma and discrimination and other human rights violations against persons living with HIV and appropriately address through the Jamaica Anti-Discrimination System for HIV (JADS).

Jumoke Patrick is the Executive Director of the Jamaican network of Seropositives. Patrick’s training and work in the social development industry with non-government organisations as well as the public and private sector has been specifically targeted at improving the lives of Key Populations especially People Living with and affected by HIV made vulnerable by socio-cultural norms, stigma and discrimination other development factors. Jumoke has managed and coordinated many projects for local and multinational agencies including the United Nations Educational, Scientific and Cultural Organization (UNESCO), United States Agency for International Development (USAID), the President’s Emergency Plan for AIDS Relief (Pepfar), UNAIDS etc. Jumoke has also done extensive work with the LGBT community, working with Equality for All Foundation, previously Jamaica Forum for Lesbians, All-Sexuals and Gays (JFLAG), as a Policy and Programme Manager. This young man hosts a wealth of experience and resourcefulness and has already made significant contributions to Jamaica and its communities of vulnerable people.

North America

Wangari Tharao

Women’s Health in Women’s Hands CHC (WHIWH) is a community health centre located in downtown Toronto, Canada. Its mandate is to provide primary healthcare services for immigrant, refugee, non-status racialized women from the African, Caribbean, Black, Latin American and South Asian communities in Toronto and surrounding areas. The organization provides care for more than 3,700 women annually, of which more than 12% are women living with HIV and the remaining are at risk of acquiring HIV as migrant and mobile populations.

Wangari Tharao is currently the Director of Research and Programs at WHIWH. She is also a well-known Community-based researcher, with a research program that focuses on migrant and mobile populations, primarily women who have migrated from countries with generalized HIV epidemic(s). Her research bridges knowledge generation, programmatic and policy practice to support effective actions on HIV.

Andrew Spieldenner

The United States People Living with HIV Caucus (or the HIV Caucus) is a group of organizations, coalitions, networks, client groups and individuals with HIV who advocate for people with HIV in the U.S. Formed in January 2011, the HIV Caucus includes diverse and accountable representation by people living with HIV from throughout the U.S. The HIV Caucus is comprised of all the national networks of people living with HIV – Positive Women’s Network-USA, Positively Trans, Sero Project, Global Network of People living with HIV/AIDS-North America, International Community of Women living with HIV-North America, Reunion Project – as well as local networks in Georgia, Colorado, Iowa and Texas. The HIV Caucus works to collectively advance the voices of people living with HIV in advocacy and in the HIV response. The HIV Caucus has been a key partner to several national initiatives: planning the annual federal HIV legislative lobby day AIDSWatch; increasing Meaningful Involvement of People living with HIV at the local level by training networks of people living with HIV; developing leadership in the of people of color living with HIV in the U.S.; and implementing the HIV Stigma Index.

Andrew R. Spieldenner, Ph.D. is Chair of the United States People living with HIV Caucus and Assistant Professor of Health Communication in the Department of Communication at California State University-San Marcos. Dr. Spieldenner’s research lives at the intersection of public health, communication and sexuality studies. A longtime HIV activist, Dr. Spieldenner has held senior positions at the Latino Commission on AIDS, National Association of People with AIDS, Black AIDS Institute and New York City Department of Health and Mental Hygiene. Openly living with HIV, Dr. Spieldenner works with networks of people living with HIV across North America in leadership development, advocacy and HIV criminalization modernization efforts.

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