As the first Nigerian publicly to acknowledge his HIV-positive status, Mohammed Farouk is playing a critical role in shaping the public response to the epidemic by involving people living with AIDS in policy and outreach efforts.
The New Idea
Mohammed is enabling Nigerians living with AIDS to acknowledge their illness to their families and communities, form support groups, and participate in educating a nation about their rights and needs. While this kind of attention to the illness has taken place in other parts of the world, AIDS awareness in Nigeria is in a nascent stage, and misconceptions and abuses of the rights of infected people are prevalent. In this context, Mohammed's work is a critical first step in mobilizing effective public support for policies that increase access to medical care, expose scams that promise bogus cures, and secure basic rights for those who are infected. Mohammed has been successful in convening people living with AIDS in ways that dramatically change their lives and enable them to inform appropriate regional, national, and international responses to the illness. He is bringing leaders in the groups into public forums, thus ensuring representation of people living with AIDS in forums at all levels. In addition, Mohammed is educating the public by participating in radio and TV programs to bring his story and the stories of others in his situation to a broader public.
The first Nigerian AIDS case was diagnosed in 1986; since then the rate of infection has increased at an alarming rate. A 1999 survey revealed that 2.6 million Nigerians were infected with the HIV virus. By 2004, this number is expected to grow to 4.5 million. While most Nigerians know about HIV, they have not changed their behavior in ways that reduce the risk of becoming infected. This is in large measure a result of misinformation about the illness and its causes. The society does not truly appreciate the extent of the risk it faces by the practice of unprotected sex and other life-threatening behaviors.
The millions who are already infected are often made to feel shame, isolation, and fear. For many, the decision to go public with their illness means that, among other things, they may lose their job. Because they lack legal protection from such abuses of their rights, many remain in the closet, choosing not to seek help, information, or support. In an environment in which accurate information is not yet available, many infected people fall prey to swindlers who play upon their desperation for a cure, and exact huge sums of money for bogus cures. Not wanting to have their status known, those infected never report these scams. They suffer in silence, and the scam artists move on to their next victim.
While many citizen organizations–and the government, to a lesser extent–have launched campaigns to raise awareness and provide assistance to people living with AIDS, very few have involved the people living with AIDS in the planning or implementation of their activities. As a result, those who are infected must accept whatever these organizations offer, whether it is appropriate to their needs or not. This situation hinders the success of awareness campaigns because the wider society hardly ever gets firsthand information from the people who are most directly affected; instead, many see the campaigns as propaganda rather than as representations of real struggles of real people.
Mohammed's strategy has three principal aims: to convene support groups of people living with AIDS; to expose and correct violations of individual rights in common practice; and to build awareness about the disease.
Mohammed's organization–Nigerian AIDS Alliance–brings together people living with AIDS to meet and discuss topics central to their own lives and to the future of Nigeria. The groups, which function first as a support network for participants, provide one-on-one and group counseling by trained volunteers. In addition, participants share information about health, nutrition, and policy. The members represent all walks of life; they are medical doctors, lawyers, professional counselors, and market women.
Collectively, AIDS Alliance members act as a pressure group in Nigeria to ensure that the real needs of people living with AIDS are addressed both in national policies and in the policies of international citizen organizations dealing with the disease. They also raise funds to provide microcredit to members who have lost their jobs or face financial hardship. Working through the alliance, the government and some pharmaceutical companies make medication available to the members at subsidized rates. They also refer their members to other citizen sector organizations for specialized needs, like in cases of employment-related discrimination.
Mohammed's work has influenced the spread of support groups for Nigerians living with AIDS. In particular, he was instrumental in the formation of two other HIV/AIDS support groups, the Save the World Organization in Eastern Nigeria and the Council of Positive People, Kano. He is also in the process of setting up another group in Port Harcourt in the Niger Delta. He has raised funds from the Ford Foundation to help establish and sustain these groups.
Mohammed sees that it is important to establish communication among support groups, both to share best practices and information and to convene a united advocacy group. Toward this end, he has started a newsletter called Positive News that gives information about AIDS and also tells the stories and experiences of HIV-positive people. Furthermore, it helps those people living with AIDS and others keep abreast of AIDS policy developments in government and international citizen sector organizations.
Mohammed is raising awareness of AIDS by ensuring that the public sees the illness from the perspective of someone infected. Thus, he has made himself available to radio and television audiences. He appears in call-in radio programs, responding to questions from the public about the illness. He effectively uses this forum to dispel myths about the disease and to demonstrate that people living with AIDS are productive and responsible members of society. He has given numerous talks and conferences across the country and has produced a video documentary of his experience. Mohammed also represents people living with AIDS in many international forums, expanding initial emphases on preventive education to assistance to those already infected.
To ensure the long-term sustainability of his work, he is setting up an endowment fund. His organization is also planning to start a commuter bus service, to be run by people living with AIDS who will provide information to passengers about the epidemic and its causes.
Mohammed grew up in Kaduna in northern Nigeria. In 1998 he and his wife discovered that they were HIV-positive. Obviously frightened and reaching out for assistance, Mohammed, then a soldier in the army, reported his diagnosis to his superior officers, who instead of assisting him, ordered him locked up in the guardroom where he remained for weeks. Finally, he challenged his superior officer and quit the army, only to discover later that the army provided benefits to HIV/AIDS members and that his senior officer responsible had embezzled this compensation. When it was obvious to the senior officers that Mohammed would expose them, they referred him to a Nigerian doctor who claimed he had a cure for AIDS and would administer this cure to Mohammed and 30 colleagues. The Chief of Army Staff announced that these men had been cured and praised the doctor for his efforts. Angered by this lie, and recognizing that this was yet another fraud, Mohammed decided to go public with his story.
Having stepped into the public spotlight as being HIV-positive, Mohammed was faced with discrimination and stigmatization. He remembers the sense of isolation and loneliness as worse than the effect of the virus itself. Through a friend, he was able to access the Internet where he found a wealth of information on AIDS. In 2000 he attended the 13th International Conference on AIDS in Durban. There he met activists and policymakers who, despite being infected, were doing a lot in their respective countries to slow the spread of the epidemic and also give hope to infected people. This experience deeply influenced him, prompting him to set up the support group and all the other activities he became involved in upon his return to Nigeria.