In an effort to enable people living with HIV/AIDS (PLHIV) in Egypt to live fulfilling, productive lives and to combat the pervasive social stigma and alienation that they face, Dr. Sani Youssef is building a movement of, by, and for PLHIV. His organization, Friends of Life, places ownership in the hands of those living with HIV/AIDS, whereby PLHIV take charge of their care and prevention efforts. By putting an unusually public and personal face on HIV/AIDS care, Sani aims to change public attitudes toward people living with HIV, returning them to their families and Egyptian society.
The New Idea
Believing that people living with HIV/AIDS must be at the forefront of efforts to combat the disease, Sani is mobilizing Egypt’s growing population of PLHIV behind a movement to increase dialogue around HIV/AIDS, and to advocate for better care. He works to improve the physical and psychological health of PLHIV, develop their economic potential, and enable them to play an active role in HIV/AIDS-related awareness efforts in their community, thereby paving the way for their long-term integration into mainstream society. His organization, Friends of Life—run entirely by PLHIV—provides psychological counseling sessions that address the social and emotional trauma suffered by PLHIV as a result of living in a society where they and their families are shunned. After ensuring that their basic physical and mental health needs are met, Sani works with PLHIV to develop their professional skills; giving them the tools they need to effectively reenter the labor force. Those living with HIV are able to both earn an income and send a powerful message discounting the societal belief that they are helpless and useless. The second pillar of his work relies on public awareness and advocacy campaigns, wherein Sani aims to change popular misconceptions about PLHIV and to break down the widespread and harmful prejudices that lead to their mental and physical isolation. By engaging the government and health sectors, Sani hopes to ensure greater access to basic social and economic rights for PLHIV. Specifically, he aims to improve the quality of medical treatment for PLHIV and make treatment more accessible.
Despite a recent increase in the number of HIV/AIDS cases in Egypt and throughout the Arab region, Egyptian society, along with the government and health care systems, continues to ignore both the spreading epidemic and the people living with it. Due to a lack of education and public discourse around the issue, most remain ill informed about HIV/AIDS, its means of transmission, and prevention methods. As a result, deeply rooted stigmas and discrimination affect every aspect of the lives of PLHIV, including their medical and psychological treatment and economic well-being. Patients’ families are also frequently discriminated against, leaving them with even fewer places to turn. In this environment, PLHIV often find it exceedingly difficult to continue working after they have been diagnosed. It is a common practice for companies to actively discriminate against HIV+ employees—firing them as soon as their infection becomes public. As a result, PLHIV are left without jobs, without homes, and without psychological support services during one of the most devastating periods of their lives. There are very few efforts in Egypt to comprehensively address the needs of PLHIV, their place in the community, and society’s perception of them. In most cases, PLHIV are dealt with solely as a target audience of HIV/AIDS-related interventions, which limits their independence and reinforces their vulnerability—increasing their low self-esteem and the insecurity they suffer as a result of social stigmas and alienation. Further, due to the public’s reluctance to engage in dialogue about HIV/AIDS and PLHIV and work toward solutions to the pervasive social challenges caused by the disease, few steps are taken to address these issues at any level.
Sani begins by addressing the immediate psychological and medical needs of those living with HIV/AIDS. He trains HIV+ staff to serve as peer coaches, who then help other PLHIV and their families accept the presence of HIV/AIDS in their lives and adopt a more positive perspective. With renewed self-esteem, psychological health, and family support, PLHIV take an important step toward reintegration into society. They are more responsive to medical treatments and ready to benefit from and contribute to the other aspects of Sani’s program. In order to reinforce PLHIV’s ability to be active, contributing members in society and to earn a living to support themselves and their families, the second key component of Sani’s initiative is professional skills training, with a focus on citizen sector initiatives and advocacy. He begins by conducting introductory workshops on income generation, project development, and strategic planning. Participants then learn about financial administration and all aspects of project management, including monitoring and evaluation, reporting, fundraising, and proposal writing. Sani places particular emphasis on teaching skills that they can then put into practice with Friends of Life and other PLHIV-related initiatives, including advocacy, communication skills, and engaging the media. Sani hopes to soon provide his patients with job placement services, so that they are able to start working again and become economically and professionally reintegrated into society.Beyond the direct care and support services for PLHIV, Sani is developing a concerted advocacy and awareness campaign aimed at ensuring HIV/AIDS patients’ guaranteed access to proper medical care. Having formally established Friends of Life in 2007, he has already held meetings with doctors in Egypt’s renowned hospital of tropical medicine, and has begun lobbying the government to cover the cost of HIV/AIDS treatment. Sani uses community information sessions and roundtable discussions to disseminate correct information about PLHIV and deconstruct the widely held, yet fundamentally flawed and prejudiced beliefs about them. In this way, Sani hopes to foster increased dialogue around HIV/AIDS, and to better inform the public about the disease, means of transmission, methods of prevention, and the rights and needs of PLHIV. His efforts target a wide population, including the government, media, academia, private, and citizen sectors. By providing accurate information and educating the public, Sani believes he can break the prevalent stereotypes and prejudices that inflict major psychological trauma on PLHIV and their families. He hopes to help Egyptian society understand that PLHIV deserve to live normal, healthy lives, make contributions to society, and benefit from opportunities and tolerance, just as all citizens. This will create an environment that is accepting and supportive of PLHIV and their challenges.With the success of the other aspects of his initiative, Sani plans to affect greater involvement of PLHIV in citizen programs related to HIV/AIDS and PLHIV. His hope is that PLHIV will become the main actors in program design, implementation, and monitoring, in order to ensure that services address the real needs of PLHIV, and that program strategies and delivery are accessible and acceptable to the people they serve. Sani is enabling PLHIV to improve their quality of life and advocate for their right to live healthy lives free of stigma and discrimination.
Sani was born in Alexandria 1962. Having attended Catholic schools as a child, Sani understood the value of community involvement, and developed an interest in social issues at a young age. During his second year of university, he joined the organization, Caritas, where he became responsible for organizing a leprosy awareness day. This marked a turning point in his life, as he saw how the stigma and discrimination associated with a disease aggressively affected the people infected. Sani eventually became responsible for the Caritas youth section, whose objective was to develop young social leaders to work with poor and marginalized communities, and he later shifted his focus to two key programs in the organization’s health sector.From these experiences, he decided to dedicate his career to those shunned by society as a result of illness, and focused particularly on PLHIV. In 2004, Sani obtained a Diploma in HIV treatment from the Faculty of Xavier Bichat in Paris: The first Egyptian physician to do so. He participated in several PLHIV-related events, including a training session on psychological counseling for PLHIV at the Johns Hopkins and two conferences for PLHIV in Uganda. Following an initial counseling session with twenty HIV+ persons, he realized that there was no way to engage PLHIV patients without first dealing with the shame and ill-treatment their disease caused them. He launched Friends of Life for PLHIV in 2007.