Community mobilization

Participants at Global Citizens Summit to End AIDS which took place in Nairobi, Kenya from 27 to 29 May 2009. Credit: Global Citizen Summit 2009

Leonard is the father of five daughters, one of whom, recently turned 14, was born HIV positive. In addition to juggling with the responsibility of raising a family of girls, Leonard is becoming very concerned about the new challenges he’s facing with having a positive teenage girl at home. “She is growing and as a father, I must help her grow into a mature and responsible woman. How should I talk to her about sex given her HIV positive status without instilling a sense of guilt? I do not find the guidance to help me respond to her needs,” he said.

This question was one of many others at the core of the Global Citizens Summit to End AIDS which took place in Nairobi, Kenya from 27 to 29 May.

The Citizen’s Summit was organized by a determined group of civil society, including Africa CSO Coalition against HIV&AIDS, Asia People’s Alliance for combating HIV&AIDS, Africaso, Eanaso, Heard, Cegaa, OXFAM, ActionAid, the UN Millennium Campaign, Healthlink World Wide, Panos and Pamoja. The idea stemmed from the observation that there is a growing gap between the needs of the people at the forefront of the epidemic and the response that is offered at the global level.

(from left) Leonard Okello of ActionAid, Salil Shetty, and Alloyce Orago of NACC during the official opening of the 2009 Citizens Summit Credit: Global Citizen Summit 2009

Addressing an audience of over 250 front line practitioners, Leonard Okello, who heads ActionAid’s HIV and AIDS unit, said: “We are meeting here at a time when the world is witnessing an increasing sense of AIDS fatigue, and witnessing serious global crises: food, climate, financial and emerging epidemics. A time when there is a big global debate on AIDS funding versus health funding and we, the people at the frontline of the AIDS response, are not on the debating table”.

During the three days meeting, the participants from grass root communities, networks of people living with HIV, faith based groups and other civil society groups came together under the umbrella of the Summit’s title “Reclaiming our Role in Universal Access” to share their experience at the front line of the response to AIDS. Their objective was to learn from their peers how they can better support people living and affected by HIV in their communities and where they can find support and guidance. The Summit was also an opportunity for them to consolidate in a roadmap the challenges that communities are facing on the road to universal access and how they could contribute to overcome them.

Representing UNAIDS at the Summit, Elhadj Amadou Sy, Deputy Executive Director ad interim, spoke of the importance of the communities’ role in scaling up towards universal access and reaffirmed UNAIDS commitment to support them in their constant and tireless efforts in the AIDS response. Referring to UNAIDS Outcome Framework for 2009-2011, he reiterated UNAIDS commitment to stand by people living and affected by HIV and to enable them to demand change in governance, legislation and policy to support a response that works for them.

Building on their previous advocacy experience in 2005 which led to the G8 commitment made in Gleneagles to move as close as possible to universal access to HIV prevention, treatment, care and support by 2010, ActionAid is planning to use the Summit’s roadmap to create a new impetus for demanding the right to universal access to prevention, treatment, care and support. At the Summit, ActionAid also launched STAR, a human rights based social mobilization methodology aiming at enabling and empowering communities to protect themselves from HIV infection and to demand their rights to prevention, treatment and care.

UNAIDS Executive Director Michel Sidibé joins a village “community conversation” in the Tigray Region of Ethiopia, 800kms from Addis Ababa, 22 April 2009. Credit: UNAIDS/Y.Gebremedhin

Across Ethiopia, community initiatives and local government are coming together to make a difference in the AIDS response. During his official travel to the country, UNAIDS Executive Director Michel Sidibé visited some of the programmes and projects putting into action the goals of universal access to HIV prevention, treatment, care and support services.

Adegude Health Center

At the heart of health service delivery in Ethiopia are the government-run local health centres which deliver primary health services such as family health, communicable disease prevention and control, including HIV, and health education.

Michel Sidibé was invited to visit the Adegude Health Center, one of five local health centres in Hintalowagrit District, which provides voluntary HIV counseling and testing services, as well as prevention of mother to child transmission and HIV treatment. Staff working at the centre gave an overview of the HIV services that they deliver in this rural area of Ethiopia to Mr Sidibé and shared their achievements as well as the challenges they face. District health office officials also shared experience of coordinating the multi-sectoral AIDS response, implementation of HIV programmes and service delivery.

Community conversations

Mr Sidibé also had an opportunity to observe one of the “community conversations” in Hiwane Kebele where a cross-section of people—women and men, old and young, people living with HIV, representatives from women’s associations and youth groups join local religious and traditional leaders who have the ability to influence and bring change—regularly come together.

“Community conversations” are taking place across rural Ethiopia and studies show that they can be agents of change in the AIDS response. Once a week or fortnight in villages, or “Kebeles”, up to 70 people gather for a couple of hours with trained local facilitators to exchange their views on a range of social topics.

The village gatherings enable taboos to be aired and misunderstandings about sex and AIDS to be clarified. Traditional practices that may be factors in the spread of HIV are also discussed.

The “conversations” have changed opinion and even translated into action. For example, in some localities groups have condemned early marriage and committed to protecting school girls from discontinuing their education. Others decided to stop female genital cutting in their areas or some participants reached a consensus to avoid practices like widow inheritance. The importance of leveraging AIDS responses to deliver broader development results including gender equality and human rights is a point often emphasized by Mr Sidibé.

The local events also enable issues—such as stigma—to be explored collectively and can be a forum from which community actions are initiated such as HIV prevention, home based care, support for orphans, and increased take up of voluntary counselling and testing.

Facilitators explained how community conversations were first developed by UNDP and piloted from 2003 to 2004 in Ethiopia. The pilot was more successful than expected and federal authorities have since made community conversations a priority strategy for community mobilization across the country.

“The local community conversation I have witnessed is an inspiration. Governments, people living with HIV, civil society leaders, and partners—we all need creative platforms to join in open discussion of the issues and identify ways to move forward together in the AIDS response,” said Mr Sidibé.

People living with HIV in the region

(from left): Hailemariam Kiflay, Chairperson of “Save the Generation Association” gives a pin to Mr Sidibé during his visit with this umbrella network of people living with HIV in Tigray. Credit: UNAIDS/Y.Gebremedhin

The Executive Director also met with the Chairman and Board Members of the “Save the Generation Association Tigray” umbrella network of people living with HIV in Tigray National Regional State. The Network promotes the rights of its members, fight stigma and assists regional efforts to scale up HIV prevention, treatment, care and support services. According to the Federal Ministry of Health an estimated 62,000 people are living with HIV in the region and 63% of those in need of HIV treatment have access to it.

Care and support of vulnerable children

Around 650,000 children have been orphaned by AIDS in Ethiopia. Mr Sidibé visited a care and support project for orphans and vulnerable children and affected families in Mekelle. The project, run by Human Being Association of Brotherhood, began in 2001 to support orphans and vulnerable children and families under difficult circumstances and today provides basic and educational support to over 1000 families caring for orphans and vulnerable children. It also provides vocational training, equipment and seed money to street children and child sex workers to enable them to have their own income and continue their education. Other support services include reuniting street children with extended families and legal support for children to inherit property and pensions of their families who died of AIDS-related illnesses.

The Ethiopian Minister of Health Dr Tedros Adhanom accompanied Mr Sidibé on these site visits.

The government of Ethiopia has set ambitious targets to achieve universal access to HIV prevention, treatment, care and support and developed a multi-sectoral Plan of Action for 2007 to 2010. This was developed in consultation with a broad range of stakeholders, who shared lessons learned during implementation of the AIDS response. The plan includes detailed activities, targets, cost estimations and a financial gap analysis and represents a major step towards the realization of the ‘Three Ones’ principles.

Over 7,000 people living with HIV came
together in Shilparamam-Hyderabad.
Photo credits: UNAIDS

India hosted its largest ever gathering of people living with HIV in December 2007. Over 7,000 people living with HIV came together in Shilparamam-Hyderabad on 7 December for a special event organized by the Andhra Pradesh State AIDS Control Society (APSACS) with the support of UNAIDS and several other partners. As part of the State’s “Be Bold” campaign, a behaviour change communication initiative, the 2007 convention beat the record crowd of 3,800 people living with HIV at the same venue in December 2006.

Union Minister for Labour and Convenor
of the Parliamentary Forum on AIDS,
Oscar Fernandez, restating commitment to
the 2006 'Hyderabad Declaration'.
Photo credits: UNAIDS

The event brought together a variety of stakeholders to reiterate commitment to reducing stigma, increasing access to services for people living with HIV and to creating an enabling environment for preventing the spread of HIV. It was also an opportunity to restate commitment to the “Hyderabad Declaration”, which was originally signed at the 2006 event.

“It was festive time for people living with HIV. Women participated in the Rangoli competition, children participated in the painting competition and games organized specially for them. Adults also listened to lectures on treatment adherence and precautions against opportunistic infections,” said G. Asok Kumar, Project Director at on of the APSACS. “Such a huge gathering of people living with HIV helped considerably reduce stigma,” he added.

Oscar Fernandez meeting with a number of
the convention participants.
Photo credits: UNAIDS

The event was inaugurated by Oscar Fernandez, the Union Minister for Labour and Convener of the Parliamentary Forum on AIDS (PFA), J.D. Seelam, Co-Convener PFA,   Dr Sailajanath, Convener and Shri B. Kamalaker Rao, Co-Convener of Andhra Pradesh Legislators Forum on AIDS among many other Government officials.

The convention reflected on the progress that has been made since the last meeting in 2006. According to State figures, in just a year, the number of people receiving antiretroviral therapy increased from just 2,200 in 2006 to 25,000 in December 2007. The number of people living with HIV accessing health care services has also gone up phenomenally. In the last year more than 600,000 pregnant mothers had an HIV test. The overall number of HIV tests carried out in the state in the last 11 months reached1.5 million, up from 1.3 million tests registered during the whole period from 2000 to 2006.

Action on AIDS requires greater coordination among
partners to ensure that actions are not duplicated
and resources are used most effectively and
efficiently.

In many countries, communities were the first to mobilize in response to AIDS, and their initiatives often laid the foundations for the development of the national response.

Building on this, experience has shown that action on AIDS requires greater coordination among partners to ensure that actions are not duplicated and resources are used most effectively and efficiently.

As a result, UNAIDS in collaboration with the International Council of AIDS Service Organizations (ICASO), the African Council of AIDS Service Organizations (AfriCASO) and the International HIV/AIDS Alliance are launching Coordinating with Communities – Guidelines on the Involvement of the Community Sector in the Coordination of National AIDS Responses. The aim of the new guidelines is to strengthen the active and meaningful involvement of the community sector in the development, implementation and monitoring of coordinated national AIDS responses.

“While there is widespread acknowledgement that involving the community sector in the coordination of national AIDS responses will increase effectiveness, it often does not translate into actual meaningful involvement,” said Kieran Daly, ICASO Director for Policy and Communications.

“The community sector brings to the coordinating table vital technical knowledge and experiences that can help ensure national AIDS responses meet the real needs of those most affected.  For this to work, all stakeholders need to be open to genuine collaboration, using these guidelines to build greater understanding of how to support active and meaningful involvement of the community sector,” he added.

The new guidelines aim to strengthen the active
and meaningful involvement of the community
sector in the development, implementation and
monitoring of coordinated national AIDS responses.

The guidelines aim to provide practical options from which communities and stakeholders can identify the actions that are most appropriate and useful to their own contexts.

The guidelines also aim to promote a set of universal principles, such as human rights and gender equality that are relevant to all countries and contexts. In particular, these guidelines are underpinned by the recognition that the greater involvement of people living with HIV will provide for more effective national responses to AIDS.

The use of the guidelines will be affected by factors such as the current capacity of the community sector’s organizations and networks, and the relationship between community groups and other stakeholders. However, in any country, these guidelines can be used as:

• A tool to assess the current strengths and weaknesses of community sector involvement in all national AIDS coordinating bodies and processes.

• A tool to develop a multi-sectoral action plan to increase and improve community sector involvement in all national AIDS coordinating bodies and processes.

• A tool for advocating to improve and fund both community sector involvement in national AIDS coordinating bodies and processes and also community sector networking and coordination.

• A basis for developing local or district-level guidelines on community sector involvement in AIDS coordinating bodies and processes.

Efforts to increase a harmonized response to AIDS
can only be successfully achieved with the active
and meaningful involvement of the community
sector.

The guidelines were developed in response to requests from groups of people living with HIV, community organizations, and groups and individuals from other sectors who recognized that efforts to increase a harmonized response to AIDS­­­­ – in line with the ‘Three Ones’ principles – can only be successfully achieved with the active and meaningful involvement of the community sector.

“The involvement of the community sector is critical in our efforts to move towards universal access to HIV prevention, treatment, care and support”, said Michel Sidibe, UNAIDS Deputy Executive Director. “The community sector is at the forefront of identifying the needs of and providing services to affected communities. Therefore they deserve a stronger voice in planning and coordination of national AIDS responses. With these guidelines we are investing in the capacity of the community sector to claim their rightful role among the partners in the AIDS response.”

When young housewife and mother Kiri* learned she and her young son had tested positive for HIV, she didn’t know where to turn. “I had so many problems hidden in my heart. I didn’t dare tell my problems to anyone. Keeping this secret from people made me so distressed that sometimes I wanted to kill myself to escape from this suffering,” she said.

But Kiri found strength and support by picking up the telephone. She dialled the special ‘Inthanou’ (the Khmer word for ‘Rainbow’) hotline – a unique free, anonymous and confidential telephone counselling service established by a local NGO in 2000 to provide vital HIV information, support, counselling and referral – and help was at hand.

“After contacting the Inthanou hotline, I felt relieved and much less distressed after discussing my long-hidden problems. Now I can express my feelings to someone without any fear because: Firstly: No one knows who I am. Secondly: The conversation is confidential. Thirdly: I can discuss issues concerning my personal health problems and receive good advice and encouragement,” she explained.

Kiri is one of many benefiting from the Inthanou hotline. Since its creation in August 2000, the initiative has reached almost 300,000 people, most of them aged between 15 and 24.

The hotline is the result of a partnership with a telephone company in Cambodia, which provides two free telephone lines that are available in all of the county’s provinces. Funded by UNAIDS Cosponsor organization UNICEF, the French Embassy and other donors, the hotline runs six days a week from 11:00 to 20:00 and receives an average of 200 calls per day. In 2005 the hotline received a total of 63,228 calls.

Inthanou employs nine trained counsellors who provide information on HIV and reproductive health and when necessary refer callers to Voluntary Counselling and Testing Centres, as well as other medical services including Sexually Transmitted Infection clinics, access to treatment and care, and networks of people living with AIDS for psychosocial support.

 “The hotline is not only providing information but it is also referring services that are available in the country. In this way the hotline is making a real impact on people’s lives, and is making a difference,” said Fabrice Laurentin, Project Officer for UNICEF Cambodia.

For Kiri, referrals from the hotline have led to her being able to access antiretroviral treatment from a local NGO.  For others, the hotline has had equally positive impacts such as referrals which have lead to people living with HIV being able to access small grant funding to set up businesses.
The hotline is regularly promoted through various media, particularly TV and radio as well as via advertisements in magazines, t-shirts, key-rings and pamphlets that are widely distributed. In 2004 a special poster campaign was conducted featuring some of the country’s top sporting stars. In August 2006, the National AIDS Authority and UNICEF launched another special poster campaign promoting greater awareness of HIV among young women and encouraging them to use the free Inthanou HIV hotline.

“I really hope that this campaign will reduce women’s shyness about AIDS-related issues and encourage them to call the hotline,” said Dr. Loun Monyl, Inthanou Coordinator.

Inthanou also has a web site (www.inthanou.org) which provides online information on HIV and prevention and treatment services, as well as useful advice and testimonies of people living with HIV and other members of the public who have accessed the hotline for more information and assistance.

One young man tells his story on the web site: “I have had sex with my closest friend and I rarely thought about using condoms. I believed that having sex with a man was safe,” he explained.

One day as he was reading a magazine he came across Inthanou’s hotline number, advertising that the hotline provides anonymous and confidential information related to HIV and STDs. He called the hotline and counsellors advised him that having unprotected sex with a male partner, is a high risk behaviour for transmission of HIV and STDs. The counsellor gave him helpful advice about how to reduce the risk of HIV infection. Having consulted the hotline, he acknowledges that the hotline counsellor gave him important information about HIV. “I am now interested in finding out more about issues related to health and HIV. I often call Inthanou counsellors when I have questions,” he said.

“Ithanou is reaching out to all sectors of the population. Its anonymous and confidential service makes it easier for people to start talking about issues that are often taboo. In this way it is encouraging dialogue on issues of HIV and STIs and is helping break down stigma and discrimination,” said Jane Batte, Social Mobilization and Partnerships Advisor, UNAIDS Cambodia.

"You can protecty yourself against HIV, use condoms... If you want to know more about HIV and AIDS, please call 012 999 008/012 999 009" - Poster from the 2004 campaign uses famous Cambodian boxing star to raise awareness.

The hotline aims to build on its current service and, with additional funding, hopes to continue to answer tens of thousands of calls and refer at least 12,000 callers to appropriate government and NGOs medical and non-medical facilities every year.

“We want to reach out and make a difference to as many people as possible. With Inthanou, help is just a phone call away,” said hotline Coordinator Dr Monyl.

According to the UNAIDS Global Report 2006, at 1.6%, adult national HIV prevalence in Cambodia was one-third lower in 2005 than in the late 1990s—due mainly to a combination of rising mortality rates and HIV prevention efforts that helped reduce unprotected paid sex. However, the country is still burdened with one of the worst epidemics in Asia with women constituting a growing share of people living with HIV – an estimated 47% in 2003, compared with 37% in 1998.

*names have been changed to protect identity
Testimonials used in this story appeared first on the Inthanou web site – http://www.inthanou.org

Related links
http://www.inthanou.org
http://www.unicef.org

	"Do you know how to protect your baby from HIV? If you want to know call 012 999 009" Poster from the 2006 UNICEF / National AIDS Authority poster campaign targets pregnant women.
	"Be part of the winning team against HIV/AIDS... If you want more information about HIV/AIDS, please call 012 999 009/012 999 008"   Poster from the 2004 campaign uses a famous Cambodian football player to raise awareness.
	"Someone with HIV can swim with me...If you want to know more about HIV and AIDS, please call 012 999 008/012 999 009" Poster from the 2004 campaign uses a famous Cambodian swimmer to raise awareness.
	“Where to access care and support related to HIV and AIDS? If you want to know, please call 012 999 009” Poster from the 2006 UNICEF / National AIDS Authority poster campaign targets farm worker
	"Run faster than AIDS, use condoms... If you want more information about HIV/AIDS, please call 012 999 009/012 999 008" Poster from the 2004 campaign uses a famous Cambodian runner to raise awareness.
	“Where to do an HIV test? If you want to know, call 012 999 009” Poster from the 2006 UNICEF / National AIDS Authority poster campaign targets female workers

India’s villages and towns join hands in the AIDS battle

New Delhi, August 8:  The government of India has launched its largest ever outreach on AIDS to the country’s elected representatives with the hosting of first national convention of District Council Chairpersons (Zilla Parishad Adhyakshas) and Mayors.

The convention, which was held at the National conference centre in New Delhi at the beginning of August, brought together more than 500 representatives from the local town and village governance mechanisms- ‘Panchayati Raj’ and ‘nagarpalika’ institutions - to join the AIDS response at the district level.

A joint initiative of the Government of India, the National Aids Control Organization (NACO), the Parliamentarians’ Forum on HIV/AIDS and the Joint United Nations Programme on HIV/AIDS (UNAIDS), the convention is part of an effort to build a country wide community of locally elected leaders in the rural and urban areas who have the potential to influence policies, programming and resource management., making mainstreaming a reality in the Indian context. 

With an estimated 5.21 million people aged between 15 and 49* living with HIV in India, the country has launched a major response in the fight against HIV. Working in this way at the district level, the ‘Zilla Parishad initiative’ is a step towards strengthening local responses at the grassroots level – through communities and households -  and increase communities ability to face and respond to HIV and AIDS.

“India’s District Chairpersons and Mayors wield a large amount of influence that can be positively directed in creating awareness and removing stigma in the drive against HIV.  They can ensure HIV related issues are addressed through proper planning and budgetary allocation and as community leaders they can address stigma and discrimination by dispelling myths about the epidemic,” said Dr. Denis Broun, Country Coordinator, UNAIDS, who spoke at the convention.

The convention delegates were also addressed by Shri Oscar Fernandes, Union Minister and Convener, Parliamentarians’ Forum on HIV/AIDS; Shri Mani Shankar Aiyer, Union Minister for Panchayati Raj; Dr. Anbumani Ramadoss, Union Minister for Health and Family Welfare, Shri Jaipal Reddy, Union Minister for Urban Development and Ms. K. Sujatha Rao, Director General , NACO.

As part of the convention, discussions took place on the rural and urban contexts of AIDS in India.  HIV related targets and programmes were shared with the objective of achieving seamless implementation across the nation. In seeking support of the decentralized authorities, this Convention becomes the basis of decentralized planning envisaged in ‘Phase III’ of the National AIDS Control Programme, which is expected to be launched in November 2006.

“The challenges that the HIV epidemic poses need to be addressed at the district and community levels. By involving the Zilla Parishad chairpersons we are working towards tackling the epidemic at the level where it touches individual lives,” said Ms. Sujatha Rao, Director General, NACO.

Given the influence and access of District Council Chairpersons and Mayors at town and village levels they can make significant differences in the AIDS response by influencing district development plans to ensure HIV related activities are included and appropriate budgets allocated and allocating their own funds to the response. They can also advocate with heads of various departments (especially health and education) to introduce systems that can help reduce stigma and discrimination and provide relevant information and referrals to communities who access their services. As community leaders they can talk about HIV in all fora to further address stigma and discrimination and as political representatives they can advocate to bring HIV to the top of the political agenda.

Highlighting the critical role of local-level institutions in the HIV and AIDS battle, Shri Oscar Fernandes, Convenor of the Parliamentarians’ Forum on HIV/AIDS said, “Zilla Parishad Chairpersons have many strategic advantages which will enable them to influence the HIV programmes at the district level. The aim of this Convention is to sensitize district level representatives and thus make a difference to the HIV situation in the country at the grassroots level.”

The Convention concluded with the signing of a Declaration of Commitment by the District Chairpersons and Mayors. The declaration outlines the way forward and pledges sincere engagement in the HIV response at the district and community levels.

*NACO figures, 2005

Related links
UNAIDS India
National AIDS Control Organization (NACO)

Photographs from the event:

(left to right): Kumari Shelja, Minister of Urban Employment & Poverty Alleviation, Mr. Oscar Fernandes, Union Minister and Convenor Parliamentarians’ Forum on HIV/AIDS; Mr. Anbumani Ramdoss, Union Minister of Health and Family Welfare; Mr. Manishankar Aiyar, Union Minister for Panchayati Raj; Shri Jaipal Reddy, Union Minister for Urban Development  at the Convention

Shri Sitaram Yechuri, Honourable Member of Parliament addresses the Convention

ZP Adhyakshas and mayors pledging support to the AIDS response.

ZP Adhyakshas and Mayors signing the Oath of Commitment.

It is with profound sadness that UNAIDS mourns the death of AIDS activist Wellington Solomon Adderly who was killed at his home in Nassau, Bahamas earlier this week. Mr Adderly was one of the leading figures in the response to HIV in the Bahamas having served for many years as President of the Bahamas National Network of Positive Living. He was also a prominent member of the Bahamas Resource Committee and Administrator of the Bahamas AIDS Foundation.