Introduction

In an effort to enable people with HIV/AIDS (PLHIV) in Egypt to live fulfilling, productive lives and combat the pervasive social stigma and alienation that they face, Dr. Sani Youssef is building a movement of, by and for PLHIV that provides comprehensive services to this community, and with PLHIV taking charge of care and prevention, forms a movement to raise awareness of HIV/AIDS, stop its spread, and advocate for rights and care. In doing so, Friends of Life gives PLHIV ownership of transforming their own lives and contributing to society. Sani will change attitudes toward people living with PLHIV, bringing them back into Egyptian families and society.

Sani is working to improve the quality of life for PLHIV in Egypt and to achieve their full integration into mainstream society. Sani’s comprehensive program of services benefits PLHIV’s physical and psychological health, develops their economic potential, and enables them to play an active role in HIV/AIDS-related awareness efforts in their community. Through public awareness and advocacy campaigns, Sani aims to change popular misconceptions about PLHIV, thus breaking down the widespread, harmful prejudices that infect every aspect of the lives of PLHIV. Ultimately, Sani hopes to enable this unnecessarily marginalized community to live normal lives as full, equal citizens, and thus enjoy the same rights and opportunities that are accorded to all Egyptians.

Sani believes that PLHIV have the right and responsibility to address this epidemic. They need medicine and jobs, so this is his initial focus. They, themselves, have to be the solution. Not recipients, but in charge of their world.

Sani’s program for PLHIV aims to change their perceptions of themselves and to reinforce their ability to contribute to their community. He achieves this by providing psychological counseling sessions that address the social and emotional trauma PLHIV suffer as a result of living in a society where they and their families are shunned, and where their affliction is so taboo that the government and most Egyptians are loath to admit that it is a national problem in need of attention. Sani teaches PLHIV how to cope in this difficult environment and reminds them of the truths that society has tried to strip away: that every person living with HIV/AIDS has value, important feelings, potential, and a voice that should be heard. By working with PLHIV, Sani is also reaching their families and succeeding in changing their perspectives on HIV/AIDS and what it means to have a family member who is infected with it.

Sani also helps PLHIV develop their professional skills, giving them the tools they need to effectively reintegrate into the labor force. PLHIV are thus able to both earn an income and send a powerful message discounting the societal belief that they are helpless and useless. This message will influence society at large and will reinforce the self-confidence of PLHIV themselves.

Targeting the community at large, Sani is undertaking a full-scale awareness and information campaign that will facilitate social integration for PLHIV. Through his CSO, Sani conducts awareness meetings and informative sessions to educate people about HIV/AIDS, its modes of transmission, and methods for prevention. These events also provide a platform to disseminate correct information about PLHIV and deconstruct the widely-held, yet fundamentally flawed and prejudiced beliefs about them.

The involvement of PLHIV is an essential element of these events and of Sani’s initiative as a whole, as one of his goals is to enable PLHIV to play key roles in HIV/AIDS-related citizen movements. He aims for these movements to be organized and implemented for PLHIVs, but, more importantly, he aims for PLHIVs to be the driving force behind them. This method reflects the international trend encouraging greater involvement of people with HIV/AIDS in all HIV/AIDS-related citizen movements.

Advocacy is the second component of Sani’s effort to raise awareness about HIV/AIDS in all sectors of Egyptian society. By engaging the government and health sectors, Sani hopes to ensure greater access to basic, social, and economic rights for PLHIV. Specifically, he intends to improve the quality and availability of medical treatment for PLHIV and make the treatment more accessible and reachable from the patient’s side.

Sani’s idea aiming at better and further integration of PLHIV, by supporting their physical, psychological, and economic well-being applies, for the first time in the Arab world, the most widely-regarded approach in addressing the challenges faced by PLHIV.

Though the prevalence of HIV/AIDS is relatively low in the Middle East and North Africa, compared to other parts of the world, it is growing at a steady pace. Between 1990 and late 2005, the reported number of cases of HIV/AIDS tripled, reaching 440,000 cases. In 2005 alone, 64,000 new cases of the virus were reported in the region. Amazingly, in 2008 the Egyptian government is still denying a problem.

There are 860 officially recognized cases of people living with HIV/AIDS in Egypt, but this figure is estimated to severely under represent the actual figure. By the end of 2004, a total of 2,115 cases of HIV/AIDS had been reported to the Ministry of Health and Population. Of these, 1,492 were Egyptians, while the remaining 623 were foreigners. The total figure rose drastically in less than tree years: by the end of 2006, the estimated number of cases of HIV/AIDS had increased to 13,000. The majority of PLHIV in Egypt are men.

A significant proportion of reported cases of HIV/AIDS in Egypt are among members of the most vulnerable and at-risk populations,such as sex workers, intravenous drug users, homosexuals and street children. These groups are also severely marginalized, both economically and socially, suffering from social stigma whether or not they are HIV-positive.

A general lack of knowledge regarding HIV/AIDS, means of transmission, and prevention methods, is one of the primary factors in the spread of the virus in Egypt and the cutting prejudice that affects PLHIV. Studies reveal low levels of knowledge about HIV/AIDS among youth, which can be attributed, in part, to the fact that Egyptian schools fail to offer sex education to their students.

Despite the growing significance of HIV/AIDS in Egypt and throughout the Arab region, and the threat it poses to public health, the virus and people living with it are routinely shunned by their communities and the government and healthcare systems that are supposed to care for them. As a result, deeply-rooted stigmas and discrimination affects every aspect of the lives of PLHIV, including their medical and psychological treatment and economic well-being. Prejudice affects the families and loved ones of PLHIV, who are also often discriminated against and feel shamed by their relatives living with HIV/AIDS. These factors only reinforce PLHIV’s social isolation and the resulting psychological damage.

Not only are PLHIV rejected by their families, but they also find it exceedingly difficult to continue working after they have been diagnosed. It is common practice for companies to actively discriminate against HIV-positive employees, firing them as soon as their infection with the disease becomes public. As a result, PLHIV are left without jobs, without homes, and without families to care for them during one of the most devastating periods of their lives.

Even the medical treatment at the core of PLHIV’s survival is put at risk by the medical community’s prejudice against PLHIV and providing them the proper treatment. The medical community does not feel responsible for finding solutions to the epidemic or to provide sound care to PLHIV. Many doctors lack appropriate knowledge about the disease and how to administer treatment.

The treatment that is available to PLHIV in Egypt is limited, at best, and often not provided due to the social stigma of having HIV/AIDS and the high costs involved. A small number of patients have free access to treatment through the National AIDS Program (NAP), but this system is very centralized. Heavy bureaucracy causes frequent interruptions in the patients’ anti-retroviral (ARV) treatments, which in turn has caused rising levels of drug resistance.

Treatment is also available at the tropical medicine hospitals, which are the only public hospitals that attend to PLHIV. However, in order to be treated here, patients must be fully admitted into the hospital, which deters patients from seeking treatment. Receiving proper treatment for HIV/AIDS, however, is critical, given the difficult decline patients face and the various HIV-related diseases they suffer because of their weakened immune systems.

If the physical health of PLHIV in Egypt is neglected, then the psychological health is altogether forgotten. PLHIV receive little or no care to help them cope with the mental and emotional effects of the disease, or with the traumatic social stigmatization that they experience as a result of contracting it. The emotional, social, and spiritual needs of PLHIV are real and significant and must be treated, in addition to their physical needs. Support for this aspect of the health of PLHIV encompasses interventions to stabilize and improve social interactions affected by and community reactions to the epidemic.

As the stigma is reduced and services become more available, people will be less fearful about being tested for HIV/AIDS. They will have faith that the community, their families, and healthcare professionals will accept them and their disease and provide appropriate care for all aspects of their well-being. From a human rights perspective, medical treatment for HIV/AIDS and comprehensive support services for PLHIV should be geared toward addressing the rights and needs of those who are infected.

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, worsening the low self-esteem and insecurity that they suffer as a result of social stigmas and alienation. Further, due to the popular reluctance to engage in dialogue about HIV/AIDS and PLHIV and work toward solutions to the pervasive social challenges caused by the disease, very few steps are undertaken to address these issues at any level.

A small number of public awareness campaigns, conducted by government offices, UNICEF, and the World Health Organization, have aimed to inform the public about HIV/AIDS and methods of transmission and prevention. Other initiatives have supported high-risk groups and encouraged them to undergo testing. In December 2007, the Ministry of Health’s National AIDS Control Program (NACP) launched a voluntary consulting and testing (VCT) campaign in 10 governorates, including Cairo, Alexandria, and several governorates in Upper Egypt and on the Red Sea coast. Unlike mandatory testing and surveillance, VCT is a service for anyone who wants to be tested for HIV/AIDS and seeks confidential counseling and advice.

Sani has established the Friends of Life organization, an independent citizen sector organization (CSO) that promotes social awareness about HIV/AIDS and PLHIV, offers comprehensive services for PLHIV, and advocates for their rights as full citizens. Another main goal of Friends of Life is to achieve leadership of the organization by PLHIV and endorsed by society’s respected opinion formers. With the eventual expansion of his organization, Sani intends to benefit the lives of PLHIV throughout Egypt and the Arab region.

Sani’s interest in working with people marginalized by disease began in 1985, when he started to work with the Catholic charity organization Caritas. Drawn by compassion and challenge and encouraged by his Jesuit teachers, Sani first worked with leprosy patients, who were hidden away from society in sanitoriums, and promoted public awareness about the disease. As a young medical student, it was his first exposure to the aggressive affects that stigma and discrimination associated with a disease on infected people, and he felt immediately that he could bring change. This work taught Sani that accurate information would bring a new perspective to the Egyptian people, thus changing their attitudes and enabling leprosy patients to reintegrate into society.  In addition, the disease was brought under control.

Sani made the decision to dedicate his career to those shunned by society due to illness, focusing on PLHIV. Facing hostility from the government and his medical colleagues and little institutional support he attended courses where he could be trained on all aspects of the epidemic. Self-supported financially, Sani went to Johns Hopkins University in the US, where he completed a course on counseling skills and treatment of STD patients, primarily PLHIV. He learned how to counsel PLHIV and what had worked in other countries to better integrate PLHIV in society. He then began developing a strategy for Egypt.

By the year 2000, Sani gathered 20 people living with HIV/AIDS and set up an office in Alexandria. Sani then started working with the group offering counseling sessions and began his advocacy efforts to increase availability of anti-retroviral drugs and other HIV/AIDS treatment in Egypt. There was no way then even to engage PLHIV, since they were hidden away, frightened and sick. Sani felt he had to offer concrete hope for them by keeping them alive.

In 2003, Sani was invited by the National AIDS Program and UNICEF to attend the 11th International Conference for PLHIV in Kampala, Uganda. He insisted on taking some from his group. This was the first time for Egyptian PLHIVs to be recognized and attend such a conference. The conference allowed Sani to deepen his understanding of methodologies in supporting PLHIV and community awareness, and also helped him develop a comprehensive plan and structure for his organization. By living and eating with the group, a deeper trust was built.

In 2005, Sani attended a Better Life meeting in Algeriaand was then asked by UNAIDS to prepare the meeting report. This helped Sani to further uncover the size and scope of the HIV/AIDS epidemic and the associated discrimination in Egypt and the Middle East.

In 2007, Sani established Friends of Life because registering a CSO allowed him to raise money. He offered a full range of services, including psycho-social counseling and professional development training, as well as medical and social advocacy for PLHIV in Egypt. He expanded his group to include 30 people living with HIV/AIDS and continued to offer psychosocial support and advocacy training. With an extensive awareness campaign that engaged the media and important contacts in the National Aids Program (NAP), Sani and his team began to advocate for PLHIV rights, including their right to adequate treatment. Finally, the voices of PLHIV could be heard by all of society. Through word of mouth and the efforts of his team, Sani informed other PLHIV about his organization and its services.

The psychological counseling Sani offers helps PLHIV and their families adopt a positive perspective on life, despite the alienation and discrimination imposed on them by society. Through this counseling, both PLHIV and their families learn to accept the presence of HIV/AIDS in their lives. They are reminded of the value, uniqueness, and potential of every person, whether HIV-positive or not, in counseling sessions led both by Sani and trained peer coaches. 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 of 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, and project and strategic planning. Participants then learn about financial administration, all aspects of project management, and skills that are directly relevant to their work with Friends of Life and PLHIV-related initiatives. These include advocacy, communication skills, and engaging the media. With funding from organizations like the Global Fund for AIDS, Sani’s patients are able to start small projects that enable them to become involved in HIV/AIDS and PLHIV-related initiatives, as well as to generate income.

Once he established Friends of Life, Sani also expanded his advocacy and awareness efforts. Targeting society as a whole, Sani began to promote public awareness of HIV/AIDS, its means of transmission, and precautions that can prevent infection on a wider scale. Working to ensure PLHIV’s access to proper medical care, he held meetings with doctors in the hospital of tropical medicine and began lobbying the government to cover the cost of HIV/AIDS treatment. Addressing the great expense and scarcity of antiretroviral drugs, he began a program to redistribute the valid medications of HIV/AIDS patients who had died. Sani is also creating a network of doctors who offer effective care to PLHIV, encouraging them to participate in special training provided by CSOs and international organizations focusing on HIV/AIDS.

Currently, Sani’s program is supported by UNICEF, a one-year grant that is renewable, based on program success. Sani is also developing other methods of economic sustainability for his initiative, and sending proposals to various funding programs and organizations concerned with the issues he addresses. He is in the process of officially registering his CSO and has hired an attorney to help him with this. All of the counseling sessions and skills trainings offered by Friends of Life are conducted by Sani, with the exception of the peer coaching program.

Sani has developed a comprehensive plan for expansion over the next five years. This plan focuses on improving the lives of PLHIV from the medical, socio-psychological and economical perspectives, and thus effectively integrating them in Egyptian society. Sani realizes that transforming the way PLHIV are perceived by society, and the way they perceive themselves, will take a long time, but he believes that persistence and steady advances will affect lasting change.

Sani plans to continue working with medical institutions and the government to ensure that PLHIV are provided with adequate and effective care. This will require that healthcare providers become better informed about HIV/AIDS, the causes and consequences of the disease, and the most effective means of treatment. Sani hopes that, by raising awareness of healthcare workers about HIV/AIDS, he will enable them to feel and act more empathetically towards their patients and thus provide them with better treatment. Sani also wants to increase the availability of medications and treatments for HIV/AIDS, which are currently scarce in Egypt. In order for this to happen, the government must first acknowledge that the AIDS epidemic has reached Egypt and is posing a growing threat to public health. Sani will continue to lobby the government until it recognizes HIV/AIDS as a critical challenge that must be addressed.

By using comprehensive awareness campaigns to provide accurate information and educate the public, Sani believes that he can break the prevalent stereotypes and prejudices that inflict major psychological trauma on PLHIV and their families. He hopes to help all sectors of Egyptian society understand that PLHIV are people who deserve to live normal, healthy lives, make contributions to society, and benefit from opportunities, just as all people do. This will create an environment that is accepting and supportive of PLHIV and the challenges they face.

Sani will continue to offer the psychological counseling and professional training to PLHIV that marked the first efforts of Friends of Life. In addition to offering these services, Sani hopes to provide his patients with job placement services, so that they are able to start working again and become economically and professionally re-integrated into society.

Finally, 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. By doing this, 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. He is married and has three children. His involvement in social issues began in his brother’s Catholic school, Saint Mark’s, which encourages community involvement as a core aspect of its philosophy. Here, Sani was taught the importance of working to help others. He felt that it was his duty to work with marginalized groups, including orphans, the elderly, and the blind, and give them all the help and support that he could.

Once he started university, Sani began to work in a children’s summer camp in Upper Egypt, where he organized social development projects for the children and aided to reconstruct water and sewage systems. During Sani’s second year of university, he decided to join Caritas where he became responsible for organizing a leprosy awareness day. This was the turning point in Sani’s life when he realized, for the first time, how the stigma and discrimination associated with a disease can aggressively affect the people infected by it.

Eventually, Sani became responsible for the Caritas youth section, whose objective was to develop young social leaders to work with poor and marginalized communities. Sani then became responsible for Caritas’s health sector, where he worked in two main areas. The first was working with diabetic children who suffer from social stigma, which inspired Sani to initiate the Diabetic Scouts. Sani also worked with marginalized women who lack services and was instrumental in 16 clubs for women’s empowerment.

In 2004, Sani obtained a diploma in HIV treatment from the Faculty of Xavier Bichat in Paris. In doing so, he became the first medical doctor in Egypt to have this diploma. This marked the beginning of Sani’s efforts to improve the lives of PLHIV throughout Egypt. He developed HIV/AIDS-related programs in his work with the Drug Rehabilitation Center (DRC) and later became active in the Egyptian NGO Network against AIDS and was later elected secretary of the Regional Arabic NGO Network against AIDS.  Sani’s participation in several PLHIV-related events, including a training on psychological counseling for PLHIV at the Johns Hopkins University Hospital in the US and in two conferences for PLHIV (11th International Conference for PLHIV in Kampala, Uganda and the first ever workshop for PLHIV in the Middle East and North Africa), prepared him to launch the first CSO for PLHIV in Egypt.