In_A_Life_Linking_Treatment_Care_Support by IPPF

In a life Linking HIV treatment, care and support in sexual and reproductive health care settings The International Planned Parenthood Federation (IPPF) is a global network of 150 Member Associations, active in 182 countries, and is the worldâ&#x20AC;&#x2122;s foremost voluntary, non-governmental provider and advocate of sexual and reproductive health and rights.

Photo credit: IPPFWHR / Debra Jones / Dominican Republic

International Planned Parenthood Federation 4 Newhams Row London SE1 3UZ United Kingdom Tel +44 (0) 20 7939 8200 Fax +44 (0) 20 7939 8300

email info@ippf.org web www.ippf.org

From choice, a world of possibilities

Contents About us

Introduction

Chapter 1: Reducing HIV related stigma: Prioritizing human rights

Story 1: HIV-positive young people in Sudan help to change the attitudes of health care staff

Story 2: Meeting the needs of MSM in China

Story 3: Micro-credit and education increase awareness and reduce discrimination in Thailand

Story 4: Developing an effective HIV workplace policy

Story 5: Providing a safe, stigma-free environment for young people in El Salvador

Story 6: Changing the opinions of SRH health care providers about HIV in India

Chapter 2: Prevention services: Making it meaningful Story 1: Taking HIV prevention messages beyond the clinic walls in Ethiopia

Story 2: Debunking myths about condoms and prevention for young people in Uganda

Story 3: Confidential counselling service prompts behaviour changes in Syria

Story 4: Sexual and reproductive health services for migrants to Tajikistan

Story 5: Using cultural traditions to promote HIV prevention

Story 6: â&#x20AC;&#x2DC;Passion & Portraitsâ&#x20AC;&#x2122; uses photography to empower and educate young women

Chapter 3: Treatment, care and support: Ensuring a seamless continuum

International Planned Parenthood Federation 4 Newhams Row London SE1 3UZ United Kingdom Tel +44 (0) 20 7939 8200 Fax +44 (0) 20 7939 8300 email info@ippf.org web www.ippf.org

Story 1: Providing ART within a sexual and reproductive health setting in Kenya

Story 2: Home-based care in Ethiopia provides practical and emotional support for people living with HIV

Story 3: Alleviating the burden of care in Cambodia

Story 4: A unique HIV centre in India supports positive living

Story 5: Integrated care and confidentiality improve ART success in the Dominican Republic

Story 6: Partnerships help HIV positive Colombian women support each other

Chapter 4: Linking HIV and SRH: Making policy and partnerships work

Story 1: UNGASS +5: Political Declaration and Commitment

Story 2: Forging partnerships to deliver services to vulnerable populations in Cambodia

Story 3: Collaborative efforts that help girls who are trafficked in Nepal

Story 4: Meeting the spectrum of needs of people living with HIV in Rwanda

Story 5: Creating a policy to link HIV and sexual and reproductive health Africa-wide

Story 6: Fulfilling Fatherhood in the midst of an epidemic

Acronyms and Abbreviations

First edition published 2004 Second edition published 2006 UK Registered Charity No. 229476 Printed on 75% recycled, chlorine-free paper, an NAPM approved recycled product.

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About us

Who we are The International Planned Parenthood Federation (IPPF) is the strongest global voice safeguarding sexual and reproductive health and rights for people everywhere. Today, as these important choices and freedoms are seriously threatened, we are needed now more than ever.

What we do IPPF is both a service provider and an advocate of sexual and reproductive health and rights. We are a worldwide network of 150 Member Associations and are active in 182 countries.

What we believe We see a world where women, men and young people everywhere have control over their own bodies, and therefore their destinies. A world where they are free to choose parenthood or not; free to decide how many children theyâ&#x20AC;&#x2122;ll have and when; free to pursue healthy sexual lives without fear of unwanted pregnancies and sexually transmitted infections, including HIV. A world where gender or sexuality are no longer a source of inequality or stigma. We will not retreat from doing everything we can to safeguard these important choices and rights for current and future generations.

Photo credit: IPPF / Chloe Hall / Ethiopia

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Introduction

HIV is the predominant sexual health issue facing the world today. The vast majority of HIV infections are sexually transmitted, or are associated with pregnancy, childbirth and breast-feeding. Sexual and reproductive ill health and HIV share root causes including poverty, gender inequality, and social marginalization. These factors occur, and can overlap, amongst those most vulnerable to HIV, especially sex workers, men who have sex with men and injecting drug users. HIV, AIDS, sex and reproduction are intimately linked. What is also clear is that a comprehensive sexual and reproductive health (SRH) response to HIV offers one of the most effective routes to reaching the many people vulnerable to HIV infection, or to those already living with HIV. Linking SRH and HIV recognizes the vital role that sexuality plays in people’s lives, and the importance of empowering people to make informed choices about their sexual and reproductive health. Increasingly the need to link SRH and HIV is widely acknowledged. There is clear momentum behind efforts to mainstream HIV into sexual and reproductive health and rights responses, and there is a strong recognition that this programmatic integration is necessary both to achieve SRH goals and to meaningfully respond to the HIV epidemic. The commitment of the international community to intensify linkages between SRH and HIV and AIDS at the policy and programme level is expressed in the June 2005 UNAIDS policy position paper Intensifying HIV Prevention. It builds upon both the New York Call to Commitment: Linking HIV/AIDS and Sexual and Reproductive Health, and the Glion Call to Action on Family Planning and HIV/AIDS in Women and Children. The WHO/UNFPA/UNAIDS IPPF document, Sexual and Reproductive Health and HIV/AIDS, A Framework for Priority Linkages, highlights some of the strategic programmatic interventions.

Photo credit: Diego Goldberg / Pixel Press / UNFPA / 2005

Acting on these bi-directional linkages is now the responsibility of every HIV and SRH programme manager in both the public and civil society sectors. As the leading non-governmental provider of SRH services and advocate of sexual and reproductive rights, IPPF (the International Planned Parenthood Federation) has been at the forefront of efforts to ensure that a comprehensive response to HIV is situated within a larger SRH framework. Whether providing women with family planning services, delivering comprehensive education for young girls, managing sexually transmitted infections, ensuring access to condoms, or providing antiretroviral treatment (ART), IPPF seeks to place its work as part of a coherent global response to HIV and AIDS that links prevention with care and treatment and responds to the unique regional and national characteristics of the epidemic. The HIV epidemic is a multitude of diverse and overlapping epidemics across regions, countries and communities. Despite a number of international commitments and declarations, ensuring access to comprehensive prevention, care, support and treatment remains a global challenge. Operating from the belief that ‘access=life’, the real-life stories in this publication reflect the core characteristics and values that IPPF aims for in linking SRH and HIV: evidence-based programming, a recognition of vulnerability and the full protection of rights. In a Life highlights how our work is having a real impact in the lives of people the world over.

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Reducing stigma: Prioritizing human rights

Reducing HIV related stigma: 1 Prioritizing human rights

1.1

Twenty five years since the debut of HIV on the international stage, stigma and discrimination are still proving to be the major barriers to an effective response to the epidemic. By slowing the uptake of necessary services, the full protection and realization of sexual and reproductive health and rights (SRHR) is prevented.

Stigma can be seen as a prejudice that rejects an individual or members of a specific population because they are seen as different. This perceived difference leads to discrimination when it prompts people to treat others unfairly. In the case of HIV, stigma leads to people living with HIV (PLHIV) being rejected by those around them by family, friends, colleagues or the community in which they live. The roots of HIV-related stigma and discrimination run deep. Reducing stigma and discrimination means facing and talking openly about issues that include sexuality, drug use, poverty and gender inequality. As the triple combination of ignorance, prejudice, and fear creates a fertile breeding ground for HIV’s continued spread, so openness, acceptance, and accessible services are the key to its containment. Any rejection experienced by an individual because of the stigma attached to HIV, or even the fear of it, is an added challenge posed by the HIV epidemic. Research has indicated that service providers themselves can be a source of discrimination – negative reactions from doctors, nurses and health practitioners in various health services have been reported by PLHIV1, and deter people from returning. The stigma surrounding HIV frequently overlaps with the stigma faced by certain key populations, making it increasingly difficult to protect the SRH of those at the forefront of the epidemic. This double stigma, faced especially by sex workers, men who have sex with men (MSM), and injecting drug users (IDUs), is exacerbated by the absence of policies that protect their rights, making access to services a greater challenge.

key factor in lessening stigma. The principle of the Greater Involvement of People living with HIV/AIDS2 (GIPA) recognizes that the personal experiences of people living with HIV can, and should, be used to shape the response to the epidemic. This principle is a key reference point for overcoming the marginalization and isolation that many PLHIV experience. Equally, this is a step towards protecting the SRHR of PLHIV and ensuring that they have access to the necessary information, services and support to live long and healthy lives. Key to supporting the GIPA principle are simple, practical steps, such as the implementation of policies to protect rights. HIV workplace policies are one example. They help ensure that respect and support are formalized in contexts where, previously, many people faced discrimination or chose to remain silent. Although the workplace sector alone cannot end the spread of HIV, workplaces are well positioned to contribute resources and skills, to help influence employee attitudes and sexual behaviours, and to provide clinical services and/or referrals. The workplace offers a structured environment for sharing information, implementing interventions and supporting employees affected by HIV and AIDS. IPPF works to overcome barriers to comprehensive services for those living with and affected by HIV. One advocacy tool currently being developed in collaboration with UNAIDS, GNP+ and ICW, is a PLHIV Stigma Index which documents the stigma and discrimination faced by PLHIV.

Efforts to uproot HIV-related stigma and discrimination require the cooperation of all segments of society. Most importantly the meaningful involvement of people living with HIV in all prevention, care and treatment efforts is a

Photo credit: IPPF / Chloe Hall / Ethiopia

For example, HIV and AIDS-related stigma and discrimination: a conceptual framework and implications for action (2002) Parker, R. and Aggleton, P. (Brazilian Interdisciplinary Research Team & Thomas Coram research unit) and AIDS discrimination in Asia (2004) APN+

UNAIDS – the Greater Involvement of People living with HIV/AIDS http://www.unaids.org/en/Issues/Affected_communities/gipa.asp Page 9

1.1

Reducing stigma: Prioritizing human rights

HIV-positive young people in Sudan help to change the attitudes of health care staff

Story 1

people living with HIV has made a huge difference to our “ Involving programmes. By simply doing this we have shown that people living with HIV are part of our community, and this helped reshape attitudes.”

1.2

Meeting the needs of MSM in China

Making contact with people where they are and where they go – rather than forcing them to access services at specific places – is a key strategy in providing prevention and treatment services to especially vulnerable populations.

Story 2

Programme Officer, the Sudan Family Planning Association

Sudan – More than 85 per cent of Sudan’s population live below the poverty line, making it one of the poorest countries in the world. War, drought and migration have also led to more than four million people being internally displaced, increasing their vulnerability to poor health, exposure to HIV infection and many other health problems. Moreover, the country’s health infrastructure is weak, and services are no longer provided free of charge. Despite these conditions, the Sudan Family Planning Association (SFPA) is making progress in ensuring that people living with HIV are provided care with respect and dignity. Recognizing that a lack of HIV awareness can increase stigma and discrimination and undermine HIV prevention efforts, SFPA conducted a survey to assess awareness of HIV prevention, and levels of stigma and discrimination. The survey results revealed that critical misconceptions abound (over 80 per cent of respondents thought it was possible to contract HIV by sharing meals with an HIV positive person), prejudices are common (many consider HIV infection to be an outcome of irresponsible behaviour), and denial is strong (77 per cent of respondents said they do not know anyone living with HIV). Finally, 54 per cent of those surveyed said that if one of their family members were HIV positive they would prefer to keep it secret.

Based on these survey results SFPA worked with three of its branches – Port Sudan, Nyalla and Khartoum – to help ensure that all people, particularly those with HIV, can access the information, services and health care they need, free from stigma and discrimination. To address the attitudes of staff and service providers, SFPA provided training and held a series of educational workshops. Meetings were also held with groups of HIV positive young people to listen to their needs and promote their involvement in the organization’s decisionmaking processes. The trainings increased people’s knowledge and changed their attitudes. As a result, SFPA staff, service providers and youth volunteers are now working more closely with PLHIV, and promoting HIV services as a way of addressing stigma and discrimination. SFPA has also trained young people living with HIV as counsellors in voluntary counselling and testing and antiretroviral treatment centres. Young people living with HIV are now undertaking outreach sessions and providing home-based care for other PLHIV, and their families and communities.

Wuhan, China – In this city, the estimated population of men who have sex with men (MSM) is around 100,0003. Despite this, the stigma associated with this behaviour is such that many men are reluctant to talk openly, and even hesitant to access the sexual health services they need. According to Liu Shujie of the China Family Planning Association (CFPA), "A survey shows that only 32.5 per cent of the 867 MSM polled used condoms in their most recent sexual intercourse, and amen were found to be HIV positive." This illustrates the clear need for action to address the SRH of MSM in China. Moreover, because many MSM also have wives, helping to overcome stigma is crucial to address their sexual health needs and those of their partners. In response to this, CFPA led a series of education workshops in local bars visited by MSM. Condoms, lubricant and HIV prevention booklets were handed out at these workshops, which reached approximately 200 men. Using approaches like these to reach people where they are, as opposed to forcing them to come to specific

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centres helps to reduce barriers to care and also contributes to stigma reduction. SRHR requires innovative strategies like this to overcome the added barriers of stigma and discrimination. This helps to break down the social barriers that prevent people from accessing sexual health services. Previously, sex education in China was confined to school and college students. Over the past five years, Chinese cities including Shenzhen, Qingdao, Beijing, Wuhan and a few others have carried out sex education among migrant rural workers, prisoners and MSM. Zhao Rongqiao, a family planning official from east China's Shandong Province, said that sex education has even been carried out in some Army units. "In our survey of 300 soldiers,” Zhao was quoted as saying, according to the Xinhua News Agency, “more than 99 per cent [of soldiers] say such education is very necessary." Bringing sexuality education and prevention messages to vulnerable communities, in a variety of settings, is helping to reduce the stigma and discrimination that surrounds the HIV epidemic in China, and ensuring that people get the care they need.

Based on an internal Chinese Family Planning Association survey.

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1.3

Reducing stigma: Prioritizing human rights

Micro-credit and education increase awareness and reduce discrimination in Thailand

Story 3

Knowing your HIV status is the first step in accessing the treatment, care and support that is available. The creation of a supportive, enabling and stigma-free environment is a prerequisite in which to nurture and sustain comprehensive prevention and care programmes. Thailand – Thailand is widely recognized for lowering its HIV prevalence rate through energetic and effective HIV prevention campaigns. However, stigma and discrimination against people already living with HIV are an ongoing problem, one that the Planned Parenthood Association of Thailand (PPAT) is facing with an innovative solution that is changing minds and improving lives. Despite many efforts to reduce acts of overt discrimination many PLHIV are often denied work or lose their jobs when their employers discover their HIV status. Exacerbated by issues such as poverty and gender inequality, the importance of financial security for PLHIV is increasingly becoming part of the global HIV dialogue. Recognizing the need for income generation for PLHIV, PPAT organized a micro-credit scheme which provides capital for people to pursue alternative occupations. Frequently the money generated from this goes towards education costs for their children. In addition to the micro-credit scheme, PPAT is working in northern Thailand to increase understanding among

communities, which is helping to create a more supportive living environment for people infected with and affected by HIV. Community leaders have been taken to visit HIV hospices, where they had the opportunity to provide care for people living with HIV. This ‘hands-on’ approach has not only helped reduce much of the stigma that is pervasive but it provides a unique opportunity to turn HIV awareness into HIV involvement. The exhaustive efforts of many Buddhist monks to provide care and moral support to PLHIV have also been promoted as an example to communities. Most importantly, many PLHIV feel more comfortable revealing their status, and are encouraging others to come forward to receive proper treatment and care. Knowing your HIV status is the first step in accessing the treatment, care and support that is available. Through the creation of PLHIV support groups and networking opportunities, many are also learning to take better care of themselves, and become aware of their rights, while playing active roles in promoting better understanding among their communities.

Developing an effective HIV workplace policy Workplace Policy on HIV, developed by the IPPF Western Hemisphere “ The Regional Office … symbolizes our organization’s commitment to the promotion of human rights. ”

Story 4

Carmen Barroso, Regional Director, IPPF Western Hemisphere Region

IPPF Western Hemisphere Region, New York – Based on the core elements of the IPPF HIV Workplace policy, the Regional Office of IPPF’s Western Hemisphere Region (WHR) adopted an internal workplace policy on HIV in 2005. During the process of developing this new policy, IPPF’s HIV team helped to educate regional office staff and Board members about why such a policy is crucial, and helped to sensitize them to the special needs and issues that can arise in the workplace for PLHIV. The policy seeks not only to eliminate discrimination, but also to promote the rights of staff members affected by or living with HIV, including their rights to access to prevention services, treatment, care and support. In conjunction with the adoption of the policy, senior staff members led internal trainings and sensitization sessions on themes related to HIV and AIDS. Since one of the most important tools in preventing HIV is information, the staff trainings helped to increase understanding of current HIV issues, including the ways in which you can prevent contracting HIV; where to go if you are worried that you might have HIV; different types of treatments that are currently available; and how you can support your colleagues who are openly living with HIV. “These activities provide great opportunities for social dialogue, as well as increased knowledge and awareness among all WHR staff, which we hope they will in turn extend to their families and loved ones,” said Carmen Barroso, Regional Director of IPPF/WHR. “While

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1.4

promoting equality and education internally, the policy also provides a model for our Member Associations, and other organizations, to consider taking similar measures.” The IPPF/WHR workplace policy was circulated among all 29 Member Associations in the region, and the HIV team offered support to any Association that wished to develop or adopt its own policy. While the Regional Office promotes stigma reduction efforts generally, the varied contexts throughout the region demand very different types of policies for each Member Association, based on their local and institutional needs. In 2005, the HIV and evaluation teams developed a knowledge, attitudes and practice (KAP) survey to help Member Associations to identify areas in which their staff needed further training and education around HIV. The KAP survey has now been applied in four Member Associations, the results of which have informed successive trainings sponsored in part by the Regional Office. In the face of ever-increasing HIV-related stigma and discrimination, it is imperative that organizations implement workplace policies that combat stigma and discrimination. HIV workplace policies are intended to: minimize the possibility of HIV infection for other staff and their partners and dependents; ensure a supportive work environment for staff infected and affected by HIV; manage and mitigate the impact of HIV on the work of IPPF; and eliminate stigma and discrimination in the workplace on the basis of real or perceived HIV status or vulnerability to HIV infection. The IPPF/WHR HIV workplace policy reflects IPPF’s core values as a human rights organization.

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1.5

Reducing stigma: Prioritizing human rights

Providing a safe, stigma-free environment for young people in El Salvador

Story 5

“I live a normal life. I feel good. I feel as though I have much to live for. ” Ana, 23, a client of Asociación Demográfica Salvadoreña’s HIV counselling

1.6

Changing the opinions of SRH health care providers about HIV in India lost my husband to AIDS. If we’d known about antiretrovirals, we could have “ Ikept him alive for some more years. I wanted to get more information to protect all my sisters from widowhood.”

Story 6

Jyoti Kanarout, a participant at one of the public meetings organized by FPA India, Kolkata Branch

El Salvador – Ana is 23 years old and works at the Export Salva free trade zone4. Following a gynecological exam at the company clinic, she was referred to the Asociación Demográfica Salvadoreña (ADS) clinic in Santa Tecla – the IPPF Member Association in El Salvador – to receive an HIV test. Before the test, she met with a counsellor for pre-test counselling. The test was positive, and Ana has known that she is living with HIV for two years now. Ana fears that if her workmates and employer knew about her HIV status, they would reject her and she would lose her job. She has maintained her job at Export Salva thanks to the confidentiality of the services offered at the company’s clinic, as well as her positive mental attitude and good physical health. She meets with the counsellor at the Export Salva clinic on a regular basis and has identified the counsellor as an important source of support. She says she was depressed at first, but now, “I live a normal life. I feel good. I feel as though I have much to live for.” Ana’s story is by no means typical in El Salvador, and many young people who are living with HIV do not receive the care and understanding they need. Juan, another ADS client, went to a local government hospital for an HIV test. He said he received no pre- or post-test counselling, and the doctor who gave him the

results of his test was very curt. On a follow-up visit to the same hospital, he overheard the hospital staff referring to a client as ‘another AIDS case’.

India – Despite having a large and rapidly growing HIV epidemic, there is a low level of awareness of HIV in India5.

The fear of this stigma and possible discrimination made Juan leave the hospital. Fortunately, he was able to talk to a trusted teacher, who referred him to the ADS clinic. Now he visits an ADS counsellor on a monthly basis for ongoing support and counselling regarding his plans for the future, and how he can protect himself and others.

Even in health care settings, HIV services have also been undermined by a lack of awareness and the attitudes of health care providers. Service providers are usually the first points of contact people have when discovering their HIV status, and when accessing treatment and care. Their knowledge about HIV and their attitudes towards PLHIV play a crucial role in determining how people internalise their HIV status.

ADS is taking a major role in providing youth-friendly HIV prevention and care services in El Salvador. Yet, the contrast in Ana and Juan’s experiences highlights the challenges that young people still face in obtaining services and overcoming stigma and discrimination. ADS counsellors are trained to provide both general SRH counselling to young people, and also pre- and post-test HIV counselling and follow-up. Several HIV positive young people in El Salvador said that the ADS counsellors provided services in a confidential, sensitive environment in which they felt comfortable seeking the care they needed. The counsellors are crucial in ensuring that young people receive high-quality SRH education and social support. They provide one of the only safe, stigma-free environments available to young people in El Salvador.

free trade zone (FTZ) or export processing zone is one or more areas of a country where tariffs and quotas are eliminated and bureaucratic requirements are lowered in order to attract companies by raising the incentives for doing business there.

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The IPPF Member Association in India (FPA India – ‘Fulfilling People’s Aspirations’) realized that raising the awareness of their clinic staff and addressing wider misconceptions about HIV and AIDS are key to ensuring clients have a positive experience. FPA India aimed to build core HIV/AIDS competencies throughout its organization by ongoing training. A key ingredient of this training programme was devoted to issues of stigma and discrimination in health care settings. Staff training sought to change the attitudes of staff, especially those providing services and meeting clients. Afterwards, staff were keen to show how the training raised awareness: “I did not know the difference between HIV and AIDS, and I used to call all people living with HIV

5 UNAIDS,

‘AIDS patients’,” said one participant. “The training programme helped me to change my thinking.’’ Another staff member shared her experience: “I had a lot of misconceptions regarding people living with HIV. I thought they were thin, weak and they would not live more than a year… now I am very comfortable with the clinic counsellor [who is living with HIV].” By training its sexual and reproductive health staff in issues related to HIV, FPA India actively linked HIV and SRH – a good example of a successful mainstreaming effort at the local level. The change in attitudes among staff generated a sense of responsibility and a deeper understanding of the ways that SRH and HIV are linked. According to one staff member, “We were giving information about family planning only. After hearing about the number of [HIV] infections among our clients, we initially felt very sad. Now it is our responsibility to provide correct information to all of our clients to assess their own risk and encourage them to go for testing and, if needed, treatment.” FPA India’s work to eradicate HIV-related stigma extended into its community outreach activities in the form of awareness-raising meetings. This community outreach empowered members of the community and even led to new services being developed within the clinic.

2004 report on the Global AIDS epidemic, p27

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Prevention services: Making it meaningful

Prevention services: 2 Making it meaningful

Prevention information must be linked to services to ensure that all people young and old; male or female; HIV positive or negative - have the ability to make informed choices with this knowledge.

Translating HIV awareness into individual action rests on the creation of an enabling environment in which even those from the most vulnerable segments of society can access the services they require. Integrating HIV prevention efforts within SRH services gives people access to a full range of choices to either protect themselves from infection or decrease the chances of transmission. Dual protection against HIV and sexually transmitted infections (STIs), and unwanted pregnancy, helps individuals and couples to enjoy healthy sexual and reproductive lives. Comprehensive prevention responses must increasingly be tailored to address the upstream determinants of HIV vulnerability. Specific strategies are necessary to ensure that all populations have access to prevention services, including young people, women and girls, men who have sex with men, injecting drug users, and sex workers and their clients. Influenced by factors such as the existing availability of services, societal attitudes, cultural norms, gender constructs and economic realities, prevention services and messages must be tailored to meet the differing demands of peoples’ daily lives. Much has been learned about how prevention is internalized. Messages like ‘ABC’ (‘abstain, be faithful, use a condom’) – while purported to offer a ‘menu’ of viable options for all people to protect themselves – are simply not practical for many people. Young women and girls in particular frequently do have control over their own sexuality. Consequently, whether they abstain, are faithful or use a condom is often beyond their control. In response to the need for expanded prevention alternatives or approaches, the UNAIDS Global Coalition on Women and AIDS is partnering with IPPF, UNFPA and Young Positives in an effort to find viable options and advocacy strategies for young women and girls to protect themselves from HIV infection.

Photo credit: IPPF / Neil Thomas / Sudan

‘Traditional’ models of prevention also fail to be effective when they are based on the assumption that people are HIV negative. This fails to meet the prevention needs of PLHIV. Services and programmes must increasingly focus on ‘positive prevention’, a set of actions that help PLHIV to protect their sexual health, avoid other STIs, delay HIV and AIDS disease progression, and avoid passing HIV infection on to others. This builds on the recognition that HIV positive people play an essential role in preventing new infections. Prevention also provides an ideal opportunity for people to access treatment and care for HIV. Community driven voluntary counselling and treatment (VCT) is a gateway that optimally promotes and links integrated SRH and HIV services. One of the key lessons gained from many years of family planning and sexual health counselling is the centrality of confidentiality and client-centred approaches which should not be compromised. Access to prevention is about making prevention work in people’s lives. Each person has their own prevention needs and faces barriers to prevention particular to their life circumstances. IPPF’s Member Associations bring to life strategies for preventing HIV, STIs, mother to child transmission of HIV, and unwanted pregnancy. They do this by partnering with people most vulnerable to HIV infection especially PLHIV or people that are marginalized, vulnerable or socially excluded, including ethnic minorities, refugees, sex workers, men who have sex with men, young people and women. Through these initiatives, IPPF is providing prevention information and services that are indeed an ‘access to life’.

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2.1

Prevention services: Making it meaningful

Taking HIV prevention messages beyond the clinic walls in Ethiopia

Story 1

The workplace is a crucial site for HIV prevention efforts. Key to the success of this type of work is adaptation and innovation, for the employer, employees and service providers.

2.2

Debunking myths about condoms and prevention for young people in Uganda a number of discussions with my friend (who is a peer educator), I clearly “ After understood the importance of condoms in HIV prevention…before then I had a lot of misinformation, but now I know. ”

Story 2

Naikoba, 22

Nazareth, Ethiopia – As you enter a factory in Nazareth, you see a billboard that reads “Break the silence … we will prevent HIV together.” This is part of the Family Guidance Association of Ethiopia’s (FGAE) HIV prevention work in the workplace. Raising staff awareness within the workplace of HIV and broader SRH issues is central to effective prevention, especially for those most vulnerable to infection and who do not have the ability to access services within a clinic. This prompted the FGAE to provide information, education and communication about HIV prevention to staff at a small factory that makes police uniforms. Acknowledging that the provision of prevention services can no longer be isolated from the other demands of a person’s life, the FGAE developed a strong collaborative partnership with the factory owners. 500 workers attended HIV prevention awareness sessions in the canteen at lunch time and panel debates that promoted evidence informed prevention messages. The factory agreed to provide condoms in dispensers around the premises, as well as seven peer service providers, who were trained in HIV prevention counselling, referrals, condom promotion and VCT. They counselled their colleagues and referred them to clinics when necessary. Almez was recommended by her colleagues to be a peer service provider. She enjoys her work as it makes her feel good that she is helping her co-workers. Her work mainly involves condom promotion and HIV counselling, as well as providing family planning advice. Almez is not only providing support to her colleagues but she part of a growing number of employees within her community

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who are proactively becoming involved in HIV activities. By acting as the catalyst for action within the factory FGAE has found yet another avenue to reach young women and girls (who make up the vast majority of the workers at the factory) with comprehensive SRH and services. The workplace is a crucial site for prevention efforts. Key to the success of this type of work is adaptation and innovation, for the employer, employees and service providers. The factory owners have recognized that HIV is a workplace issue and that partnerships with recognized service providers is one way of managing the epidemic. The factory manager, Haile Mairiam, supports the project, not only for compassionate reasons, but also because the factory loses staff because of sickness, and because workers take time off to care for others who are sick, and sometimes to grieve for family and friends who have died of HIV-related complications. Almez has learned to adapt her work life to meet the requirements of being an informed peer counsellor. FGAE has realized the importance of ensuring that its HIV prevention campaigns utilize a number of complementary strategies that go beyond the walls of the clinic to provide young women and girls with prevention services. Providing HIV prevention services at the factory is a simple step that goes a long way towards protecting the health of factory workers, and it also ensures the future security of the factory operations.

Ingaga district, Uganda – For a variety of reasons young people in Uganda often find it difficult to get the sexual and reproductive health services and prevention information that they need. One is related to the attitude among some adults and care providers that young people are not sexual beings and, therefore, do not need SRH services. This attitude can make young people reluctant to seek advice and protection, especially where services aren’t specifically designed for them. The Family Planning Association of Uganda (FPAU) tackled this problem head on by providing condoms and peer education and prevention information to young people. They trained peer educators to talk to their peers about the myths surrounding condoms, as well as the importance of male and female condoms in preventing HIV, in a language and style that young people understand. A radio programme also contributed by promoting condom use as a necessary part of a comprehensive prevention package. FPAU’s peer educators focused their efforts on young people who are involved in transient trades and are out of school in the Iganga district, which has a large trader population and is at a busy crossroads. Key to this approach adopted by the FPAU is the recognition that

knowledge is power and that young people should be given the skills, knowledge and ability to make informed choices about their sexual lives. Evidence informed approaches about prevention, a core principle of IPPF’s work, is an important part of providing prevention services that are free of prejudice and judgment. FPAU also provided their trained peer educators with bicycles to allow them to cover a larger area and reach a larger number of people in the district. In this way prevention efforts were made more accessible and realistic. The project suffered a setback when rumours circulated that government-provided condoms were of low quality. This led to a loss of confidence in condoms across Uganda, and a dramatic fall in condom distribution. Counteracting and managing this kind of ‘mixed messaging’, especially as it pertains to young people and condoms, is increasingly part of the advocacy work conducted by IPPF Member Associations around the world. In collaboration, FPAU and other interested parties worked to rebuild public trust in condoms. Throughout the initiative, they noticed a tremendous increase in the demand for condoms at their clinic. Demand increased from an average of 520 condoms per month before the project started, to over 2,500 after an initial sensitization workshop of community leaders, to almost 25,000 after the training and work of the peer educators.

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2.3

Prevention services: Making it meaningful

Confidential counselling service prompts behaviour changes in Syria

Story 3

Confidence in and confidentiality of HIV prevention services are key qualities of any service for they promote honesty and openness essential components in managing the HIV epidemic. Damascus, Syria – Because of the pervasive stigma that still surrounds HIV, the Syrian Family Planning Association realized that face-to-face services for many young people in particular may not always be appropriate as a first point of contact for HIV prevention services. To address this, it set up an anonymous and confidential telephone counselling service in Damascus. The clinic linked to the counselling service also has friendly working hours to make it as accessible as possible. In the morning, service providers offer medical counselling, and in the afternoon peer educators take over to counsel young people in the clinic or through the hotline. A 21-year-old male student called the confidential telephone counselling service because he wanted information after visiting sex workers and not using condoms. From this, he went on to visit the clinic for counselling and an HIV test, as well as information about HIV and AIDS, and how to protect himself and others. He keeps in touch with the clinic to receive regular counselling. He still has sex with sex workers but now he is reporting the consistent use of condoms. A 22-year-old female student also contacted the clinic after having several sexual partners. The HIV counsellor in the clinic gave her information on the risks of STIs and HIV from unprotected sex. After a while, she came to the clinic with other young people, and they also

received counselling. The counsellor keeps in contact with them, and the student has reported that she has changed her behaviour. Examples like these illustrate the importance of ensuring that young people have ready access to services and information that they trust and in which they believe. As denial and avoidance are hurdles to managing HIV, honesty and openness are necessary ingredients of a proactive response. Central to the approach adopted by the Family Planning Association in Syria is the belief that in the age of HIV all young people should have the ability to act on the information they receive. By linking information provision with confidential services, a ‘one stop shop’ approach towards integrated prevention has become a reality. Reaching out to men and boys (who are less likely to access sexual health services) is also a key focus of much of the work of many IPPF Member Associations. Counsellors in the Halbouni clinic realized that their clients were mainly women. To try to reach men and young people and raise their awareness of STIs, and HIV, the counsellors have now been encouraging their ‘traditional’ clients to send their sons and daughters to the youth counselling centre, and to share the information they receive from the counsellors with their partners.

Sexual and reproductive health services for migrants to Tajikistan

Reaching people where they are – within the realities of their daily lives is as important as providing a comprehensive menu of prevention services.

Tajikistan – According to UNAIDS figures6, in 2005 there were 4900 people living with HIV. However, in reality the figures could be much higher, since financial constraints in the public health system mean that the collection of information and measurement of HIV prevalence in the country does not happen regularly. In addition, according to the report of the National Centre on the Fight against HIV/AIDS (July 2005), the overwhelming majority of young people (more than 89.3 per cent) in Tajikistan have no clear idea of how HIV is transmitted and how to protect themselves from infection. As a result, every day it is estimated that approximately 24 young migrant workers are infected with HIV. Because of the economic realities of the region and the movement of people across borders in search of better opportunities, the Tajik Family Planning Alliance (TFPA) is focusing on improving the access of labour migrants and their families to information and counselling on STIs and HIV prevention. Labour migrants are an important part of the Tajik economy, yet providing services to mobile populations like these poses unique challenges.

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2.4

Story 4

Exacerbated by issues of poverty and the absence of supportive policy frameworks, many mobile populations are not consistently registered for health care which severely limits their access to information and services. In many contexts, migrants are subject to increased levels of social stigma and racism as they are seen as ‘outsiders’. This is an added challenge to accessing services. Legally, people may have little entitlement, or, where services have to be paid for, migrants can often not afford them. TFPA is not only providing information to labour migrants. It is also training medical staff that work at focal points for migrants, namely airports and railway stations. In some places this has led to the establishment of special service delivery points, for example, in Kulyab railway station. Establishing delivery points in places like railway stations is effective, since it allows information to be spread easily in a place where the target population is concentrated. Reaching people where they are is an important part of ensuring that access to prevention services and information becomes a reality.

www.unaids.org - Tajikistan country profile

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2.5

Prevention services: Making it meaningful

Using cultural traditions to promote HIV prevention

Story 5

the training I did not realize that there were people living with HIV “ Before in our area. Now I will always include the information on how to prevent HIV in my work.”

2.6

‘Passion & Portraits’ uses photography to empower and educate young women change came in my personality after I attended the workshop… “ AI have more confidence…”

Story 6

Madeeha, a ‘Passion & Portraits’ participant

Traditional Lao community leader

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Bokeo Province, Lao PDR – Culture needs to be recognized for its influence on people’s lives, and consequently, the opportunity it presents to provide a forum for HIV prevention messages.

Before the training I did not realize that there were people living with HIV in our area. Now I will always include the information on how to prevent HIV in my work.”

In the northern part of Lao PDR, in Bokeo Province, IPPF is working with community leaders as a strategy to integrate HIV prevention efforts into their day-to-day activities. One example is the ‘Baci’. For some people in Lao PDR this is an important ceremony organized to wish people good luck and success before they travel, when they are coming back home, or when they are facing difficulties. The Baci is also used to welcome guests, and at wedding ceremonies. Such cultural practices, focusing on respected community leaders, can be a unique opportunity to also provide information that people will trust and respect.

This training activity was also complemented by peer educators who were trained to provide basic information on HIV, AIDS and STIs to the local communities, and to distribute condoms. In this way the link between prevention information and services was realized. “Condoms are widely used not only for STI prevention, but people also ask for condoms for family planning as well,” one female peer educator said. A bulletin board and question box were also installed in the villages to support the other activities. They provide valuable information to villagers who are often too shy to ask for it.

The IPPF ESEAOR (East and South East Asia and Oceania Region) Office provided training to the Morphorn, who conduct the Baci ceremonies, to integrate HIV prevention information into the ceremonies they are doing. Now they wish people the ability to protect themselves from HIV and STIs and educate newly married couples to be faithful in order to prevent infection. One Morphorn said, “It is my first time to get knowledge on HIV and AIDS.

Globally, cultural practices and systems need to adapt to the reality of HIV. They play an important part in the lives of millions of people, and by addressing the areas of convergence with HIV, many cultural norms and traditions can become innovative vehicles for HIV prevention and stigma reduction.

South Asia Regional Office, Delhi – In 2005, IPPF South Asia Regional Office (IPPF SARO) invited ten young women between the ages of 16 and 20 from various countries in the region (none of whom had previously travelled outside their own country) to take part in ‘Passion & Portraits’, a unique initiative that combined HIV awareness with the use of photography as a communications tool. The ten women developed skills in HIV peer education and learned unique ways to communicate what they learned to people in their communities. They were taught to use puppets and paper dolls to address issues and attitudes related to HIV. The young women were also taught photography skills. After the training, they were asked to provide a collection of photographs representing support and empowerment, the status of girls and women, and the attitudes of adults in their communities towards HIV. Learning photography skills helped them to develop more confidence in themselves, which was good preparation for going back to their communities and educating people about HIV. Madeeha, from Pakistan, was one of the ten participants. Since the training, she has been talking with her peers about what she calls ‘sensitive issues’, such as using condoms to prevent STIs. Sometimes, she says, they are “…shocked to hear such words, but slowly they get used to it and accept it, because it is for their own safety.”

Recently, Madeeha arranged a session at the Youth Resource Centre in her community to share information on HIV using storytelling, plays, and puppets. Her friends also took part in developing and performing the plays. Overall, Madeeha says she enjoys being a peer educator, “A change came in my personality after I attended the workshop… I have more confidence, and my friends and family see it clearly in my behaviour.” She now also plays an active role in the Pakistan Family Planning Association as a photographer at events. In many parts of South Asia, young women and girls such as Madeeha are uniquely vulnerable to HIV. Social, cultural and economic factors can limit their ability to control their own sexual and reproductive health, and thus to prevent HIV. ‘Passion & Portraits’ was an ideal opportunity to address HIV, and to empower young women. The women who took part did not only return to their respective countries trained as photographers, puppeteers and HIV/AIDS peer educators, they also left feeling empowered and passionate about photography and their work with HIV. The workshop afforded them a unique experience that will ultimately have developed their confidence as peer educators within their communities, while also applying their new-found ability to use photography as a medium to communicate vital HIV-related messages.

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People living with HIV are central to IPPF as staff, volunteers, clients and partners. Story 2

Photo credits (from left to right): IPPF / Chloe Hall / Ethiopia; IPPF / Jon Spaull / Columbia; IPPF / Peter Caton / India

Involving: Programmes designed by, as well as for, PLHIV promote the active engagement of those living with HIV in our work

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Listening: Programmes and networks established by PLHIV ensure that the voices of the most vulnerable and marginalized inform our response to HIV

Providing: Partnering with PLHIV in the communities where they live by providing comprehensive sexual and reproductive health and HIV services

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Treatment, care and support: Ensuring a seamless continuum

Treatment, care and support: 3 Ensuring a seamless continuum

A comprehensive SRH response to HIV necessitates the natural integration of HIV treatment, care and support services. Utilizing a variety of programmatic entry points – including VCT, STI management or PMTCT – provides a unique platform to expand access to much needed treatment and care services within a SRH setting. This all-encompassing approach to SRHR requires linking prevention and care in a seamless continuum to meet the needs of those living with, and affected, by HIV.

IPPF Member Associations are working towards providing comprehensive care by integrating HIV treatment and support into a broader SRH response. The rationale is clear and there are many opportunities for doing this successfully. Recent innovations7 in integration have focused on the delivery of antiretroviral treatment and opportunistic illness management through existing SRH infrastructure, which is crucial to ensure universal access to necessary medications. But integrated treatment, care and support covers a wide variety of programmatic activities. Providing nutritional support, adherence counselling, links with income generation and microfinancing activities, palliative care and psycho-social support are all necessary ingredients of a comprehensive package. Integrating HIV treatment and care services into a SRH setting delivers a number of primary benefits to both clients and service providers. It optimises the use of existing SRH infrastructure, an especially valuable approach in resource-poor settings. A continuing characteristic of the epidemic is its focus on the poorest areas, and using existing infrastructure avoids the need

Photo credit: IPPF / Jon Spaull / Columbia

for building new facilities. Offering treatment and care through SRH clinics could act as a modality of stigma reduction. Many people may be discouraged from visiting HIV-only clinics for fear of being stigmatized or discriminated against by their communities. There is often more confidentiality in settings where other, nonrelated services are provided, which encourages individuals to seek out treatment and care for HIV. Being able to access different services ‘under one roof’ reduces the time, money and effort clients have to spend seeking healthcare and, therefore, encourages the use of these services. The following pages demonstrate how IPPF Member Associations have brought access to treatment, care and support into the lives of women, men and young people. Whether this is through innovative strategies to provide ART, referral mechanisms for rural clients, management of STIs and opportunistic illnesses, or providing palliative care, IPPF gives individuals access to the comprehensive and integrated HIV care services they need to have a healthy sexual and reproductive life.

For examples of recent innovations in integration see Models of Care Project, Linking HIV/AIDS treatment, care and support in Sexual and Reproductive Health Care settings: Examples in Action (2005) IPPF

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3.1

Treatment, care and support: Ensuring a seamless continuum

Home-based care in Ethiopia provides practical and emotional support for people living with HIV

Providing ART within a sexual and reproductive health setting in Kenya

Story 1

health, HIV and poverty are so interconnected and must be “ Reproductive addressed in an integrated way.” Dr Joachim Osur, Family Health Options Kenya

Kenya – Family Health Options Kenya (FHOK) is pioneering a unique approach by integrating ART into its existing suite of SRH services. To do this, FHOK strengthened its capacity to provide HIV care and support, and gradually increased the level of access for people living with HIV in four of its recently government accredited ART clinics in Nairobi West, Thika, Nakuru and Eldoret. Integrating ART delivery into a sexual and reproductive health care setting necessitates careful planning and a number of changes had to take place at both the management and systems levels. A core service delivery team (one from each of the four sites and three from the FHOK head office) was trained in an intensive HIV clinical management course in South Africa. This core team then designed and facilitated a training session for other FHOK staff within the selected clinics. Using an ART site assessment checklist, FHOK had to modify its existing service delivery to accommodate ART provision. This included more integrated counselling and psycho-social support, more sophisticated client monitoring, and introducing procedures for buying antiretrovirals and additional equipment, such as refrigerators and computers. ART is not provided for free, but is provided at a government-subsidized rate. Treatment for STIs and opportunistic infections is integrated into the regular medical care and minimum fees are charged at the clinics. FHOK’s success can partly be attributed to the way it has involved people living with HIV in the integration process. In many places, people living with HIV have token involvement as volunteers, but at FHOK they have

been employed as lay counsellors, included on the site advisory committee, and been invited to be a part of the management and advisory board for FHOK. This has given them a stronger sense of commitment to FHOK’s work as a long-term prospect, with possibilities for career development, and it has reduced stigma and discrimination from other staff. In addition, the involvement of people living with HIV has added much credibility to the HIV services in the communities served at the four clinics. The clinics rely on their partners within communities, including volunteers, like Mary Nanjala, to help identify and recruit people in need of ART. Mary, a working nurse, felt compelled to use her skills to help people who rarely receive health care, and joined FHOK in 1991 to do STI outreach among sex workers in her spare time. Trained in syndromic management of STIs, she went out to diagnose, and where possible treat, these infections among sex workers and their clients, and to counsel about safer sex and distribute condoms. More recently Mary trained to do VCT counselling and to deliver homebased care for PLHIV, and in due course she is also hoping to be involved in the ART programme. This work is very close to her heart. Besides her own three children, Mary is raising three nephews and nieces whose parents have died of AIDS.

3.2

care I receive from Itensh means more to me than all the medication… “ The I wish she could visit every day.”

Story 2

Johanes

Ethiopia – Johanes*, who is HIV positive, is visited by a home-based carer, Itensh*, four times a week. Itensh is also HIV positive. She helps Johanes with his washing, cooking and medication, and gives him advice on managing opportunistic infections. When Itensh heard that Johanes was sick, she referred him to a clinic for treatment. The clinic referred him to the hospital, and he is now on ART. He is only eligible for the drugs in three-month blocks; his course of ART is coming to an end, and he hopes he will be eligible for more. Johanes is open about his status and does not attempt to hide the fact that he uses antiretroviral medication. In his previous home his neighbours helped him, but he had to move, and his new neighbours were initially not friendly or accepting of his HIV status. However, when the home-based care started, the neighbours started to visit. Johanes’s experience is a good example of how homebased care does more than just alleviate the symptoms of HIV or opportunistic infections. Emotional and moral support, for both those infected and affected, is also an important element for people living with HIV and their families. As in Johanes’s case, the presence of Itensh can help to destigmatize HIV in the minds of friends and neighbours who were once scared or reluctant to visit.

In Nazareth district alone, the Family Guidance Association of Ethiopia (FGAE) has 288 carers who work with 800 clients. In the Assala clinic, there are 50 carers working with 190 clients, many of whom are too ill to visit the clinic on a regular basis. FGAE works with the Idir (a long-term community association that raises funds for emergencies) to help provide care for the chronically sick, including financial assistance for their families. The Idir helps FGAE recruit carers, and FGAE trains them, along with the families and friends of HIV positive people who are receiving care. Kaba was once a client receiving home-based care through FGAE. Now she is a volunteer with FGAE who visits a youth centre in Yergalem to talk to young people about HIV. She said that FGAE does not just provide services when there is nowhere else to go. The people at FGAE are her friends. When she was first diagnosed, the home-based carers helped with treatment for her initial infections, and also in disclosing her status to her family, friends and neighbours. The carers also counselled her family on what it means to live with HIV. Kaba said that although her family and friends accept her status, she has also experienced discrimination in the community.

Despite a high HIV prevalence rate in Kenya, and a shortage of infrastructure and resources to respond to the epidemic, FHOK has made great strides in providing treatment and care where it is needed by repositioning HIV as an integral part of SRH.

* Their names have been changed to protect their privacy.

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3.3

Treatment, care and support: Ensuring a seamless continuum

A unique HIV centre in India supports positive living

Alleviating the burden of care in Cambodia

Story 3

3.4

The clinics are supported by a strong and practical referral system, coordinating with other providers that are able to offer additional services that are not available at the RHAC clinic.

was given all the information about how to live life with HIV and about “ Isafer sex. Earlier I had the impression that a person living with HIV cannot have sex with anyone. ”

Story 4

Babu, a client at the Madurai Family Care Centre

Cambodia – This country was one of those hardest hit by the HIV epidemic. But in recent years, HIV prevalence rates have gone down in Cambodia.

high service fees. All of these factors combined mean that people are prone to dropping out of treatment, which can lead to drug resistance.

According to UNAIDS, between 2003 and 2005, the estimated number of people living with HIV fell from 150,000 to 130,000. Concurrently, the level of prevention awareness increased, and behaviour has changed.8

Currently, more than 123,000 people are living with HIV or AIDS (HSS 2003) in Cambodia. Among them, more than 22,000 need ART, but the number of facilities providing ART is limited. In March 2005, the National Center for HIV/AIDS, Dermatology and STD (NCHADS) reported that only 7,217 of the 22,000 people who need ART were receiving it.

But the mature epidemic continues to be the worst in the region, and successful prevention efforts have not fully addressed the needs of people who are now living with HIV. The Reproductive Health Association of Cambodia (RHAC) found that the SRH needs of PLHIV are frequently neglected in dedicated HIV clinics. Treatment may be available, but the unique HIV and STI prevention needs of HIV positive people are rarely met. In addition, RHAC found that people in Cambodia are often reluctant to visit a clinic that solely provides HIV services because of the fear of how people in their communities will react.9 In some cases, HIV positive people are experiencing stigma and discrimination from health service providers. This, coupled with long administrative procedures to access antiretrovirals, serves to discourage many people from visiting these facilities. Instead, people seek services from private health care providers which offer low-quality services and charge

8 2006

RHAC is responding to these challenges by integrating HIV services into its SRH clinics. The clinics are supported by a referral system, coordinating with other providers that are able to offer additional services that are not available at the RHAC clinic. For example, the clinic refers patients with complicated opportunistic infections to relevant hospitals or specialized laboratory services. Using SRH clinics with strong referral systems to provide much needed HIV services helps alleviate the burden of care and makes up for the shortfall in access to treatment in Cambodia.

Madurai, India – “The last time I was sick I went to the Madurai Family Care Centre,” said Babu, who is living with HIV. “I liked the Centre because the staff were very comfortable with the clients, and it didn’t look like I thought an ‘AIDS ward’ would. I thought an AIDS ward would be isolated and protected with iron wires!” Babu’s sentiments are not unique. The Madurai branch of the Family Planning Association of India is unlike most HIV care and treatment centres in the country. It offers an enabling environment that provides muchneeded support for PLHIV and their families. At the Madurai Family Care Centre, Babu was able to interact with other people living with HIV, which helped him to realize that he was not alone with his infection. Through interaction with the staff and discussions with the counsellor, he came to understand that HIV is not a death sentence, and that people living with the disease can live a full life if they take care of themselves. “This made me feel confident,” he said. “I was given all the information about how to live life with HIV, and about safer sex. Earlier I had the impression that a person living with HIV cannot have sex with anyone.”

Holistic care is typical at the Madurai Family Care centre. It offers a wide variety of services, including treatment for opportunistic infections, nutritional advice, counselling, referrals, and income generation support. In 2005, the centre treated nearly a thousand people. Mrs Maheswari and her husband are both living with HIV. “As my husband had lost his job working in the hotel, we were worried about the future of our son. We shared this during one of the meetings at the care centre.” She met other people who had concerns. Thanks to the supportive staff, the Maheswaris and other families were able to express their feelings of concern in continuing their children’s education. According to Mrs Maheswari: “The centre collected funds to sponsor the education and other needs of our children. This is something a hospital could never offer to anyone. This relieved us of the worry about our children’s future.” In Madurai, many people infected with and affected by HIV are now able to get a complete package of care, treatment and support, thanks to the successful integration of HIV into their existing SRH services.

“I was very comfortable with the staff in the ward,” added Babu. “They took excellent care of me. It was very comforting to know that they were all trying to give me back my life!”

UNAIDS report on the global AIDS epidemic (www.unaids.org). to internal Member Association Surveys.

9 According

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3.5

Treatment, care and support: Ensuring a seamless continuum

Integrated care and confidentiality improve ART success in the Dominican Republic

Story 5

has compensated in one and a half years for the impotence of “ PROFAMILIA the past decade. We are saving lives.” Ana Gloria Garcia, educator, PROFAMILIA

Santo Domingo, Dominican Republic – With one of the highest HIV prevalence rates in the Caribbean, the Dominican Republic has 120,000 people living with HIV. In the early nineties, IPPF’s affiliate in the country, PROFAMILIA (Asociación Dominicana Pro-Bienestar de la Familia), began including HIV and STI prevention as part of its SRH work. In early 2004, the organization’s Santo Domingo clinic trained a core HIV team to expand the remit of their work to meet the demands of their clients by offering ART and psycho-social support services. The clinic does not have a separate HIV section. Instead, counselling takes place in the general counselling and emotional support area, so clients are not identified by their HIV status. Integrated care ensures that all clients are treated equally and with confidentiality. “We sit in the same seats and share the same room as everyone else,” said one client. “No one knows in the waiting room that I am HIV positive.” Before starting ART, clients receive vitamins and Bactrim in a weekly pill container to prepare them for regular pilltaking, and to strengthen them and prevent infections. Once they are stable on their ART, they meet monthly

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with the nurse, and every three months or on a needs basis with the doctor. Patients can also take part in monthly support group meetings to discuss self-care, nutrition and other topics. The clinics carefully monitor treatment adherence with ongoing education, individualized explanations of medicines, identifying adherence barriers and solutions, and regular visits, interviews and emotional support. At present, the clinic in Santo Domingo has nearly 100 clients living with HIV, including 41 people on ART. It has been so successful that the integrated treatment has been expanded to a neighbouring clinic in Santiago, and may be scaled up across the country. The Santiago clinic is providing ART to 26 people, while 39 PLHIV are receiving regular monitoring. Staff at both clinics say that the programme has saved lives and there is a renewed hope for people living with HIV. According to educator, Ana Gloria Garcia, after almost nine years of HIV prevention efforts that still left patients dying: “PROFAMILIA has compensated in one and a half years for the impotence of the past decade. We are saving lives.”

3.6

Partnerships help HIV positive Colombian women support each other

Myriam felt that as an HIV positive woman, she was not valued. Her work with Red Girasol and PROFAMILIA has empowered her and made her strong enough to help others like her. Colombia – Rosemary’s husband and two children died of AIDS-related illnesses. When her second child died, the pediatrician told her about it in a corridor of the hospital, and said that she must be HIV positive too. She was devastated, and angry that she was told the news in such an insensitive way. She said that the doctor made her feel responsible for what had happened. After her diagnosis, Rosemary began looking for women in a similar situation so she could get – and perhaps give – help, advice and support. Myriam is also HIV positive. She described the challenges of getting treatment. “The social security system claims that antiretrovirals are there for everyone who needs them, but the reality is different. There are barriers that prevent complete access. This is a problem because many women do not know that they have a legal right to services and can fight for them. Antiretrovirals are provided in one-month courses, and frequently there are delays in receiving them, causing problems with the effectiveness of the treatment.” Together, Rosemary and Myriam set up Red Girasol (which translates as ‘Sunflower’), a network of women living with HIV in Colombia. Red Girasol gives advice to women about treatment and prevention, and educates

Story 6

them about their rights and how to uphold them. The Government is not able to respond to all of the current challenges, therefore, organizations such as Red Girasol are essential for supporting people living with HIV. IPPF’s affiliate in Colombia, PROFAMILIA, provided Rosemary and Myriam with training on rights-based advocacy. In turn, the two women are helping PROFAMILIA to successfully integrate HIV into the existing SRH environment. Rosemary and Myriam said that they enjoy working with PROFAMILIA because it is a large organization with access to many more resources than Red Girasol could harness on its own. Working with PROFAMILIA has improved their skills and experience base, and allowed them to reach more women. PROFAMILIA benefits by being able to make its services available to Red Girasol’s clients, and to gain the trust of women living with HIV as a facility that can help meet their needs. Myriam says she enjoys her work: it makes her feel empowered and she enjoys the training in rights and advocacy. It has made her stronger and more effective, and better able to help herself, and to fight for her sexual and reproductive rights and those of other women living with HIV.

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Linking HIV and SRH: Making policy and partnerships work

Linking HIV and SRH: Making 4 policy and partnerships work

The rationale for integration is clear. A number of international statements, position papers and advocacy efforts have succinctly highlighted both the moral and programmatic imperative of bringing the HIV and SRH responses into closer unison.

The 2006 review of the United Nations General Assembly Special Session on HIV/AIDS in New York, while lacking progressive and tangible targets for HIV, did provide a strong platform on which to further argue a case for integration. The final political declaration clearly highlighted the need to strengthen the policy and programmatic linkages between HIV and SRH. However issues of cost, efficiency and identifying the most effective entry points for integration are still being established. Current global debates on linking SRH and HIV are now progressing towards the practicalities of integration: the ‘what’ and the ‘why’ are clear and largely agreed. The real issue now is ‘how?’

the integration of HIV and SRH. Strategic national and international partnerships give greater numbers of people access to integrated HIV and SRH services. Partnerships with organizations and institutions that work with key vulnerable populations or in targeted countries can greatly expand the number of people who have access to information and services. Creating alliances with networks that reach the most vulnerable people, including people living with HIV, helps to ensure respect for the sexual and reproductive rights of all. Moreover, access to advocacy, capacity-building and partnerships can cement the integrated delivery of HIV prevention, care and support services

Globally, IPPF works to influence HIV-related policy on a variety of issues, including access to care, treatment, and family planning services for HIV positive women, and eliminating stigma. In all of our work, we support the integration of HIV and SRH. The bi-directional linkages between these two sectors are increasingly being recognized in policies and realized in partnerships that form between organizations.

The following pages tell the stories of how IPPF Member Associations are using advocacy, capacity-building and partnerships to bring information and services into people’s lives. From strengthening the capacity of networks of PLHIV to better articulate their specific SRH needs, to advocating for the mainstreaming of HIV services, IPPF is ensuring that the inherent links between HIV and SRH become a tangible reality.

Enabling partnerships, as well as advocacy and capacitybuilding based on partnership, is what makes access to HIV information, prevention, care and support a possibility for every woman, man and young person. Partnerships strengthen advocacy messages and support decisionmakers and others who promote HIV programmes and

Photo credit: IPPF / Christian Schwetz / Thailand

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4.1

Linking HIV and SRH: Making policy and partnerships work

UNGASS +5: Political Declaration and Commitment

Story 1

to eliminate gender inequalities, gender-based abuse and violence; “ Pledge increase the capacity of women and adolescent girls to protect themselves from the risk of HIV infection, principally through the provision of health care and services, including, inter alia, sexual and reproductive health.

”

4.2

Forging partnerships to deliver services to vulnerable populations in Cambodia

Linking HIV and sexual and reproductive health not only works on the one dimension of furthering the goals of HIV or sexual and reproductive health organizations, but can also work to further the goals of other organizations working in parallel areas, such as workers’ or women’s rights.

Story 2

The resolution was adopted following the United Nations General Assembly Special Session on HIV/AIDS, held in New York from May 31stJune 2nd, intended to review progress since the first Special Session on HIV in 2001.

Worldwide – Political commitment to HIV issues is recognized as a crucial ingredient in any country’s efforts to control and reverse the HIV epidemic. To ensure commitment, it is vital to demonstrate to political leaders the relationship between policies and programmatic outcomes. Strengthening the link between policy and programme outcomes makes it possible for programme success to influence policy, and to create policies that provide a foundation for further programmes. Engaging political leaders in this process is crucial to ensuring that debates and negotiations about HIV and SRH address topical and current concerns. The Review of United Nations General Assembly Special Session on HIV/AIDS (UNGASS), held in New York in June 2006, was a key event for political leaders, civil society organizations and activists involved in the response to HIV. It is at events such as this that courses of action can be agreed and targets decided. At the UNGASS review, IPPF - along with many organizations and individuals around the world that worked hard to advocate for SRH with their national leaders - used its extensive experience and global presence to show world leaders the importance of including SRH in any response to HIV. Key points included in the declaration are: >> to strengthen policy and programme linkages and

coordination between HIV/AIDS, sexual and reproductive health, national development plans and strategies, including poverty eradication strategies, and to address, where appropriate, the impact of HIV/AIDS on national development plans and strategies;

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>> to address the rising rates of HIV infection among

young people to ensure an HIV-free future generation through the implementation of comprehensive, evidence-based prevention strategies, responsible sexual behaviour, including the use of condoms, evidence- and skills-based, youth-specific HIV education, mass media interventions and the provision of youth-friendly health services; >> to ensure that pregnant women have access to

antenatal care, information, counselling and other HIV services and to increasing the availability of and access to effective treatment to women living with HIV and infants in order to reduce mother-to-child transmission of HIV, as well as to ensure effective interventions for women living with HIV, including voluntary and confidential counselling and testing, with informed consent, access to treatment, especially life-long antiretroviral therapy and, where appropriate, breast-milk substitutes and the provision of a continuum of care. Although in many respects the resulting declaration was disappointing, as it did not provide clear timeframes for action or make specific mention of the populations most vulnerable to HIV infection (sex workers, injecting drug users and men who have sex with men), it did provide a strong platform for future action on SRH. The challenge remains to ensure that political leaders act on this declaration by matching it with ‘on the ground’ action in their respective countries.

Siem Reap, Cambodia – Faced with one of the highest HIV prevalence rates in the Asia-Pacific region, Cambodia has shown how partnerships are essential for the delivery of services as well as the successful formulation of policy frameworks. The Reproductive Health Association of Cambodia (RHAC) is currently providing integrated reproductive healthcare, including STI and VCT services, in 14 clinics throughout Cambodia. The RHAC clinic in Siem Reap opened in 2003 and currently serves 50 clients per day, mostly married women and their partners. RHAC has recently expanded its HIV work with vulnerable populations in Siem Reap, in order to increase the use of VCT and STI services among young entertainers, men who have sex with men, and construction workers in this rapidly growing district. To make these services more accessible, RHAC has built partnerships with organizations that already have links with, or access to, these particularly vulnerable populations. These include Cambodian Women for Peace and Development (CWPD), the Provincial AIDS Office (PAO), Men’s Health Cambodia (MHC), the Cambodian Construction Workers’ Trade Union Federation (CCTUF),

the Apsara Authority, and Agir Pour les Femmes en Situation Précaire (AFESIP). By working with these agencies, RHAC is able to effectively reach the majority of vulnerable populations in the Siem Reap district. RHAC used these partnerships to train peer educators to disseminate HIV and STI prevention information and provide referrals for testing and treatment services among their peers. In addition, clinical and counselling services are provided at RHAC’s Siem Reap clinic and by the local government clinic. Partnerships such as these create synergies between the differing areas of expertise in different organizations. RHAC was able to access key populations and provide prevention and treatment services, while their partner organizations’ goals were furthered through the partnership by, for example, improving men’s health or protecting the health of the members of their Trade Union. Linking HIV and SRH not only works on the one dimension of furthering the goals of HIV or SRH organizations, but can also work to further the goals of other organizations working in related areas.

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4.3

Linking HIV and SRH: Making policy and partnerships work

Collaborative efforts that help girls who are trafficked in Nepal

Story 3

have become more effective as we complement and supplement “ We each other’s work.” Mr. Megh Lama, Programme Coordinator of Maiti Nepal, a partner organization of IPPF’s Nepal affiliate

Nepal – There is a growing concern over the number of young girls and women being trafficked from Nepal to India10, many to be sold into Indian brothels. Hearing the stories of young women who were trafficked prompted the Family Planning Association of Nepal (FPAN) to address the problem by developing strategic partnerships with other organizations that could help tackle the problem. This included a partnership with a sex-workers’ cooperative, the Durbar Mahila Samanwaya Committee (DMSC), from the Sonagachi district in Kolkata, India. These sex workers became a key source of professional support for FPAN, and greatly enhanced the organization’s understanding of, and sensitivity about, the lives and experiences of the Nepali girls they were assisting. The programme focused on helping women who had been trafficked to India to return to Nepal, and to provide them with economic support. It also included a strong advocacy component to increase awareness among stakeholders and policy makers about the causes and consequences of trafficking and sexual exploitation.

Dang Branch of FPAN. “I have come to realize that in the absence of partnerships we would have been nowhere, as we were venturing into a whole new field. Identifying returnees and people living with HIV would not have been possible in the absence of partnership.” Narayan also said that working with the returnees and people living with HIV changed his understanding of HIV, and also his opinions about sex workers. “In the beginning, I was reluctant to work with them because of the attached stigma. But now I have no inhibition.” Partnerships are crucial for expanding access and providing services that otherwise would not be possible. They are also influential in more subtle ways, acting to expose people to different ideas, different approaches and different groups of individuals. In the case of FPAN, it helped to change some of its staff’s misconceptions and prejudices about sex workers. Anita Devkota, Women’s Representative and Central Executive Member of the Dang Branch of FPAN said: “The partnership has helped both organizations and benefited our clients through the consolidation of services.”

“I was doubtful about the partnership and feared it would create unnecessary tension but I was proved wrong,” said Mr. Narayan Sharma, Chairman of the

4.4

Meeting the spectrum of needs of people living with HIV in Rwanda

In recognizing the wide spectrum of needs of people living with HIV and believing that no client should ‘fall between the cracks’, ARBEF is linking treatment and care services with other developmental concerns. Rwanda – People living with HIV need more than just antiretrovirals or treatment for opportunistic infections, especially in resource-poor settings such as Rwanda. The legacy of civil war, genocide and associated sexual violence and social dislocation in Rwanda means that people need a more comprehensive approach to HIV treatment and care, which includes nutrition, shelter and meeting the needs of their children. IPPF’s Member Association in Rwanda (Association Rwandaise pour le Bien-être Familial), ARBEF, has made comprehensive care a reality by encouraging community involvement, partnering with community organizations, and supporting the creation of support groups for people living with HIV. The MA helped initiate several support groups for PLHIV, for which it pays ‘Mutuelle de Santé’, a national health insurance scheme that ensures family access to primary health care at the nearest health centre or hospital. For people whose health conditions cannot be treated at primary health facilities, the scheme allows them to be referred to other hospitals that have the necessary clinical skills and laboratory facilities, including the ability to deliver ART. By securing this modest contribution for PLHIV to gain access to comprehensive care, ARBEF has ensured that in the face of rejection and discrimination, access to essential clinical HIV services has become possible.

Story 4

ARBEF also helped negotiate partnerships with Catholic Relief Services and World Relief, two NGOs that provide food supplements to the associations. ARBEF also encourages and helps the associations to design, initiate and run income-generation activities that, when well managed, can guarantee food security, more adequate shelter and children’s education. These activities, combined with home-based care, significantly reduce the burden on overcrowded government hospitals, improve patients’ health, and maximize collaboration between different partners. In recognition that the spectrum of needs of people living with HIV is wide, ARBEF has developed a holistic ‘patient tracking system’ that addresses not only the SRH and HIV needs of their HIV positive clients but ensures that many of their other most pressing needs are also met. Based on the philosophy that no client should ‘fall between the cracks’ this has positioned ARBEF and its partners and stakeholders with a deeper understanding of how to respond in a synergistic manner. But challenges still loom on the horizon. Chief amongst these is the number of child-headed households in Rwanda, which is a legacy of both the genocide and the impact of AIDS on Rwandan society. ARBEF is currently working to protect and safeguard the SRH of these vulnerable young people.

10 For

example, Rape for profit, Trafficking of Nepali Girls and Women to India's Brothels (Human Rights Watch, 1995) and From challenges to opportunities, responses to trafficking and HIV/AIDS in South Asia (UNDP, 2003).

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4.5

Linking HIV and SRH: Making policy and partnerships work

Creating a policy to link HIV and sexual and reproductive health Africa-wide

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IPPF’s experience in providing services and advocating for sexual and reproductive health and rights was key to gaining political commitment for the inclusion of SRH in the Plan of Action for the New Partnership for African Development.

4.6

Fulfilling Fatherhood in the midst of an epidemic and addressing the specific sexual and reproductive health needs “ Understanding of HIV positive people is an important part of linking prevention and treatment. Some people are amazed that my wife (who is HIV negative) and I are parents.”

Story 6

Christo Greyling, a father living with HIV, South Africa

Africa Regional Office, Nairobi – IPPF’s Africa Regional Office (ARO) played a key role in getting political commitment for a continent-wide SRH framework that includes HIV. Countries in Africa have the highest HIV prevalence rates in the world, and some of the lowest levels of sexual and reproductive well-being. So the framework is an important step towards better SRH, managing HIV, and improving the lives of people living with HIV. Following the recommendations and outcomes of the International Conference on Population and Development (ICPD) held in Cairo in 1994, and motivated by the challenges faced by political leaders across Africa, the Africa Regional Office joined UNFPA in working with the African Union to develop a comprehensive continental policy framework for the promotion of SRHR that also addresses HIV.

Staff at the Africa Regional Office, in partnership with UNFPA, held consultative meetings throughout Africa. These meetings helped to define the critical reproductive health challenges that African countries are facing; and to determine the place of SRH in the Plan of Action of the New Partnership for African Development (NEPAD). (Launched in 2001, NEPAD is intended to provide a framework for social and economic development throughout Africa.) A basic principle of the framework was that SRH should not be seen as separate from HIV. At a Ministerial meeting in Botswana in late 2005, political leaders across the continent approved the new framework. This draft Policy Framework provides a model for the harmonization of national, sub-regional and continental efforts to promote SRHR as one of the priority flagship programmes of the African Union Commission.

London – HIV positive fathers are pivotal in shaping the lives of their children and families, and in being role models for addressing stigma and discrimination. Responding to the SRH needs of all people living with HIV – including HIV positive fathers – is one of the foundations of a successful response to the epidemic. A publication entitled Fulfilling Fatherhood: Experiences from HIV Positive Fathers11, shows how HIV positive fathers are key agents of change in the HIV epidemic. The booklet was produced for World AIDS Day in 2005 by IPPF and the Global Network of People living with HIV/AIDS (GNP+). It reveals with candid detail the lives of thirteen HIV positive fathers from around the world, offering insights into the complexities of fatherhood when living with HIV. Christo Greying, from South Africa, tells his story: “Some people are amazed that my wife and I are parents, while others think we were irresponsible. They don’t know all of the research and testing we did, and precautions we took to limit the risk to my wife, who is still negative. When I told my parents we were pregnant, my mother was in tears and my father had to take a walk to absorb

11 Fulfilling

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it all. It was more than we dreamed could happen. The impossible had come true.” Aruna, from Sri Lanka, tells his story about facing stigma and discrimination: “Being a positive father is not easy. I see my son for fifteen minutes once a week. I have only picked him up and hugged him maybe two or three times in seven years because his mother is afraid that he will become infected. She is afraid that if he pinched me or scratched me accidentally he could touch my blood. Her family tells my son not to touch me because of HIV. For me, knowing my status changed how I am with my son. I can’t touch him or hug him like any ordinary father can anymore. I have to love him from a distance.” These honest and highly personal stories from fathers who have chosen to speak out and live openly with HIV, not only serve to demonstrate the complexity of parenting in the context of HIV, but also act as a catalyst to improve understanding of how the world needs to respond to the epidemic. Fulfilling Fatherhood, a unique advocacy tool, highlights the necessity for more understanding of the SRH needs of HIV positive people and for increased emphasis on ‘positive prevention’.

Fatherhood: Experiences from HIV Positive Fathers (IPPF, 2005) is available from www.ippf.org

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Acronyms and Abbreviations Some of the more commonly used acronyms and abbreviations used in this publication are listed below: ADS AIDS ARBEF ARO ART CFPA ESEAOR FGAE FHOK FPA India FPAN FPAU GNP+ HIV ICPD ICW IDU IPPF MDG MSM NEPAD PLHIV PMTCT PPAT PROFAMILIA Dominican Republic PROFAMILIA Colombia RHAC SARO SFPA SFPA SRH SRHR STI SW TFPA UNAIDS UNFPA UNGASS VCT WHR Page 42

Asociación Demográfica Salvadoreña Aquired Immunodeficiency Syndrome Association Rwandaise pour le Bien-être Familial Africa Regional Office, IPPF Antiretroviral treatment China Family Planning Association East and South East Asia and Oceania Regional Office, IPPF Family Guidance Association of Ethiopia Family Health Options Kenya ‘Fulfilling People’s Aspirations’ – The IPPF Member Association in India Family Planning Association of Nepal Family Planning Association of Uganda Global Network of People living with HIV/AIDS Human Immunodeficiency Virus International Conference on Population and Development International Community of Women living with HIV/AIDS Injecting drug user International Planned Parenthood Federation Millennium Development Goals Men who have sex with men New Partnership for Africa’s Development People living with HIV Prevention of mother to child transmission Planned Parenthood Association of Thailand Asociación Dominicana Pro-Bienestar de le Familia Asociación Pro-Bienestar de la Familia Colombiana Reproductive Health Association of Cambodia South Asia Regional Office, IPPF Sudan Family Planning Association Syrian Family Planning Association Sexual and reproductive health Sexual and reproductive health and rights Sexually transmitted infection Sex worker Tajik Family Planning Association Joint United Nations Programme on HIV/AIDS United Nations Population Fund United Nations General Assembly Special Session on HIV/AIDS Voluntary counselling and testing Western Hemisphere Regional Office, IPPF