Stella Iwuagwu is changing the way healthcare is delivered in Nigeria by promoting respect for ethics and human rights in healthcare policies and practices.
The New Idea
For Stella, AIDS has brought to light the inadequacies in Nigeria's health, social welfare, and judicial systems–all of which she sees as grossly inadequate to meet the challenges of the epidemic. So far, responses to the disease have focused mostly on awareness and education; few address care, and none approach care as a fundamental right. Stella's approach tackles the root causes of stigma and discrimination and their consequences, especially within the healthcare system. Stella both trains people with HIV/AIDS to defend their own rights and, through advocacy and capacity building, prepares the institutions needed to help in the enforcement of citizens' rights to adequately meet this challenge. She educates the judiciary, so it will respond when people with HIV/AIDS come to court to insist on their rights; the legislature, so it will pass enabling laws; and healthcare providers, so they will maintain confidentiality and provide adequate care. Stella has also been instrumental in helping people with HIV/AIDS create the Nigerian AIDS Alliance, thereby giving them a voice nationally and internationally. Hence, her approach is now recognized at these levels.
Nigeria has ratified most of the international conventions on human rights and the right to health, including the Universal Declaration on Human Rights. In addition, Nigeria has incorporated into its national law the African Charter on Human and Peoples Rights. The Nigerian Constitution of 1999 also contains copious provisions for fundamental human rights. Yet, Nigeria's healthcare system remains inaccessible to the average citizen.
The progressive decline in health and survival is reflected in an increasing maternal mortality rate and a precipitous drop in child immunizations. Aggravating the precarious health of the nation is the fact that Nigeria stands on the brink of a public health disaster from the AIDS epidemic. The rate of infection rose from 1.8 percent in 1991 to 5.4 percent in 1999; this translates to 2.6 million people living with either the disease or the virus. The rate is expected to increase exponentially, reaching 4.9 million Nigerians infected with HIV by year 2004.
The response to the epidemic has been reactionary–driven by fear and ignorance–resulting in violations of people's rights. Most of these violations start with the healthcare institution. Often patients are tested for HIV without their prior knowledge or consent. Pre- or post-test counseling is not available. Once diagnosed, patients commonly suffer further breaches of privacy, are denied access to quality healthcare, lose their jobs, are evicted from their homes, and enter lives of general social exclusion.
The country has not made any appreciable progress toward protecting its citizens' rights to healthcare, and opportunities to redress violations are lacking. Litigation portends increased publicity, scrutiny, and discrimination. Even when the brave do litigate, they face a prejudiced judiciary. Society's acceptance of isolating patients has made it difficult to implement policies to combat the spread of the disease.
Because HIV is increasingly affecting populations that already face discrimination for other reasons, victims largely suffer in silence and do not have the proper counseling to help them manage the challenges they face. They are unaware of their rights, and those in a position to protect them often are the violators.
The Nigerian healthcare system itself suffers from poor management and poor funding. Patients have severely limited access to safe, essential drugs and facilities. And health providers experience low morale given the weak sense of professionalism and ethics that exists in the health field.
Stella's main approach is to provide a "one-stop-shop" for the psychosocial, economic, medical, and legal needs of people living with AIDS. To do this, Stella provides the basic needs of counseling and income generation. To address the lack of jobs, she established a training center in her office staffed with people who are living with the disease. They train others like themselves in tailoring, typing, computer literacy, and even soap-making. The training not only increases job marketability but also inspires a sense of dignity and a fighting spirit.
Stella believes that as long as people who are infected remain underground, any initiative on AIDS will be unsuccessful. To draw them out, she started a telephone hotline and a safe place for confidential pre- and post-HIV test counseling. Through her center, she also provides crisis management for individuals and families and support groups. At times, she has served as mediator between HIV-positive individuals and family and friends who have abandoned them. To date, more than half of over 800 phone inquiries have resulted in visits to the center for further counseling and support.
In addition, people living with AIDS are empowered to take their destiny in their own hands by being taught to demand their rights and given the support to do it. For instance, in one situation a landlord threatened to evict an HIV-positive person in Stella's group. This individual, empowered by Stella's organization, insisted on her rights and refused to move. When the threats increased, Stella's organization was able to provide free legal aid to the woman, and the landlord was forced to reverse his eviction threat. Her organization is also assisting another person with AIDS in her case against former employers who fired her after discovering her HIV status.
Stella's belief that people with AIDS are the best advocates for their rights led her to assist them in starting a support group called the Nigerian AIDS Alliance (NAA) whose mission is principally to advocate for the rights of people with AIDS. Stella conducts workshops on program development, including proposal writing and program management. At the end of the workshop, participants are able to write proposals based on the needs of their respective groups. The strength gained from the AIDS Alliance and through these workshops gave NAA members a powerful voice during the recent African Heads of State Summit on HIV/AIDS.
Stella, however, believes that educating people with AIDS on their rights is not enough to protect them from discrimination and abuse, particularly if the institutions needed to enforce these rights are not prepared to take on the challenge. For instance, in the situation of the woman who was fired for her positive status and who went to court to challenge that decision, the presiding judge refused to let her into the courtroom, declaring that "American experts" must come to the court and convince the judge that HIV/AIDS is not an airborne disease. To help in such situations, Stella provides training and builds the capacity of relevant institutions necessary for enforcing, protecting, and promoting the rights of the HIV-positive. So far, she has organized several programs for judges, the police, the national house of Assembly, health providers, and various other arms of government to educate these people about HIV/AIDS and their roles in fighting the epidemic.
Stella's organization includes a resource and documentation center that collects and houses information on people's rights to health, health policies, and health ethics. Stella recently recruited individuals and support groups to interview 50 people across three states about their experiences and perceptions on healthcare access, patient confidentiality, informed consent, employment discrimination, and social exclusion. She continually documents violations of people's rights in order to be better informed for advocacy and litigation, housing this growing body of information in a center available to all interested sectors of society.
Stella creates public awareness through a variety of media. For example, as a result of a partnership with The Post Express (a daily newspaper), Stella's weekly column "AIDS Counselor" advises people recently diagnosed with HIV on how to cope responsibly and assert their rights. It also teaches others to live and work safely with HIV-positive people without infringing on their rights. Stella's message is carried through print, TV, radio, documentaries, drama, jingles, and group discussions. A partnership with other citizen sector organizations, Nigerian AIDS Alliance, and radio station Rhythm 93.7 has resulted in one of the biggest radio campaigns on AIDS prevention, care, and support.
Stella is also working with Mushin Democratic Wing, an association of local government employees in the Mushin local government area of Lagos state. This relationship created an opportunity to sensitize policymakers as well as the public. Jointly, they carried out a one-day campaign tagged "Humane Response to HIV/AIDS" in November 2000. She also directs her message to businesses and groups that are not yet active in the HIV/AIDS issue: banks, social clubs, and community groups. In addition, she has participated actively in numerous regional and national advocacy networks.
Stella's organization–the Centre for the Right to Health–has six full-time staff, five support staff, and over 12 volunteers to manage its daily operations. In addition, a dynamic, multidisciplinary group including a high court judge, a former health minister, a lawyer, a nurse, and two people from private business sit on the board of trustees.
Finally, the success of her program lies in her empathic approach. Stella has a unique ability to use homegrown examples and "This could be you" approaches to encourage people to respond to the challenge. For example, in a program on AIDS organized by a Nigerian women's group, the emphasis was on AIDS as a problem of high-risk groups like prostitutes and on the various remedies to curb the practice that could be advocated. Stella, who had been invited to the program, pointed out that prostitutes cater to the desires of such people as their husbands, brothers, uncles and cousins, and therefore they too could be vulnerable to the disease. Her "this-could-be-you message" dramatically changed the women's view about tackling HIV/AIDS problems, causing them to advocate for more realistic and helpful solutions.
Stella is the first child in a family of 10. During her childhood, she suffered from an ear ailment that her classmates found unpleasant; consequently they either taunted or avoided her. The experience made her angry and lonely but also sympathetic to stigmatized people. In secondary school, her teachers and some peers encouraged her. Many of her friends overlooked her ailment and fought on her behalf when others taunted her. She vowed to do the same when she found others in similar circumstances.
During school, her participation in debate, drama, and science clubs, as well as her involvement with the Rotary Club and community-based projects gave her exposure to a variety of people, sharpened her sense of justice, and shaped her people-oriented personality. She followed the Rotary Club's four-way test of the things we say or do: "Is it the truth? Is it fair to all concerned? Will it build better friendship? Will it be beneficial to humanity?"
Her experiences in school, as well as her inclinations, led her to a career in nursing. While serving as a public relations officer of the National Association of Nigerian University Nursing Students, she led its first advocacy team to demand the greater involvement of their graduates as public health officers. Her university leadership roles and her position as vice-president of the National Association of Imo State Students increased her confidence in leadership and advocacy.
In 1990 Stella was seriously injured in an accident that left six people dead. She regained consciousness three days later only after a transfusion of three pints of blood. Between 1990 and 1995, she had five surgeries, each requiring transfusions of at least two pints of blood. She nearly lost her job because of rumors that she was HIV-positive.While working as a nursing officer in a government-owned health center, she noticed a wide disparity between the standard of care taught in school and the one practiced. Often, her colleagues criticized her as being "too caring." She strived to give thorough patient care and was mindful of patients' rights to comfort and dignity, where the norm was that of abuse and disregard. Her own experiences as a patient showed her the pain and degradation of being completely dependent on others, even for basic bodily functions. These experiences resulted in her multifaceted and empathic approach to people living with HIV/AIDS.