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September 01, 2004

Virtual Pathways in Africa's Fight Against HIV/AIDS

Carmen Urdaneta

Editor’s Note: The following article is a Management Sciences for Health publication. A longer version was originally featured in Global HealthLink , a publication of the Global Health Council, It is reprinted courtesy of the Global Health Council, Management Sciences for Health, and the author.

My mother, stop lying to me. You think I don’t know my father is dying of AIDS?

It was 1996, and ten-year-old Samwel challenged his mother Elsa to accept a harsh reality as others listened to a discussion rarely conducted in public. Samwel did not care; he could not be silenced. His words weighed heavily on his mother, who had recently found out that she also was HIV-positive.

Elsa’s family lives in a small town in northwest Kenya, where HIV is widespread. For the first time since finding out she was HIV-positive, she is ill. Despite this, she is quick to smile. Now she thinks nothing of telling her story again, sitting next to her friend Margaret, who is also HIV-positive. Margaret is healthier, helped by the antiretrovirals she uses most of her meager teacher’s salary to purchase. Elsa, and millions like her, cannot afford the medicines. She is unemployed and has been a housewife most of her life. Margaret and Elsa talk passionately about the disease that kills 8,000 people worldwide every day, one every ten seconds. One thing becomes evident as they talk: they have turned a devastating diagnosis into a positive campaign to fight HIV/AIDS.

In 1996 Elsa learned she was HIV-positive and, despite her anger, accepted her illness and her husband’s too. “Let us not blame, let us look at how we are going to live. I will nurse you, love you, and we can still live positively if we accept.” After her husband died, Elsa disclosed her status to her community. She met other HIV-positive people, like Margaret, who further inspired her to speak openly to combat stigma—and to influence local decision makers to do the same. Active in her church, Elsa also disclosed her HIV status to her congregation: “I played a big role in my church as a woman leader. [There could be] no more hiding—if they accepted me or they refused, they could not silence me.” Despite being shunned and publicly ridiculed, Elsa was becoming an outspoken leader in the fight against HIV/AIDS.

Many agree that effective leadership is essential in the response to AIDS. Strong leadership at the community level helps families like Elsa’s to obtain the medical and psychosocial support they need. At the national and international levels, leadership ensures that institutions can obtain resources, effectively manage them, and respond cohesively while rapidly scaling up services.

Kenerela, a Kenya-wide network of religious leaders from all faiths living with AIDS, is one such organization. Formed in January 2004 with twenty members (including Elsa and Margaret), Kenerela’s membership grew to more than 1,000 in just six months. Despite this success, there were conflicts, and the network recognized the need to improve its leadership and management capabilities to create a successful network and to influence stakeholders to better support people living with AIDS. “The Steering Committee started quarreling and job descriptions were unclear; these issues made us fail to get donors as fast as possible. When we heard about the Virtual Leadership Development Program (VLDP), we signed up immediately.”

From March to June 2004, four Kenerela members participated in the first-ever VLDP for HIV/AIDS organizations in Africa. Developed by Management Sciences for Health’s Management & Leadership Program and funded by the USAID Office of Population and Reproductive Health, the VLDP is an integrated program that provides leadership development opportunities to health managers and teams in developing countries, many of whom cannot attend offsite training. Combining face-to-face and distance learning, the twelve-week course enables teams to identify and address challenges, recognize opportunities, focus on priorities, align and mobilize people, and inspire each other to make positive change.

Despite health problems, few resources, and no computer knowledge, Elsa and Kenerela colleagues paid their own way to take the course, learning to use a computer at an Internet café. After identifying the Kenerela mission as decreasing HIV stigma, the team developed a concrete action plan that would help them achieve that vision. Identifying and overcoming obstacles was a key. The VLDP validated and enhanced the skills each member brought to the network. Elsa reflected, “I had never thought of myself as a leader. I did not know I had these skills. After the VLDP, I said, ‘Wow, I now know how to organize and how to talk to people better, in my church, in my family, in my community and in my organization.’”

Today, more than 500 VLDP participants from twenty-six countries have learned the essentials of developing leadership capacity to improve health. From grassroots organizations like Kenerela to the national-level Uganda AIDS Commission, the VLDP’s focus on real life challenges, a flexible delivery model, and face-to-face teamwork sets it apart from traditional leadership courses. The VLDP has brought together health managers and activists from around the world to advance health agendas and address their people’s most pressing health problems. HIV/AIDS often tops the list. VLDP’s HIV/AIDS-focused programs in Brazil, the Caribbean, and now Africa have created a new cadre of leaders better prepared to direct teams and to fight HIV/AIDS. The VLDP print materials, CD-ROM, and interactive Web site have enabled participants to gain new skills, exchange ideas with colleagues in other countries, work in teams, and develop prioritized action plans to apply what they have learned. Acting on these action plans has helped improve access to antiretrovirals in Uganda, increased revenue for pharmacies in Ecuador, and improved support to orphans in Malawi.

As the senior advisor to the Uganda AIDS Commission summarized, “This course meets the needs of HIV/AIDS stakeholder groups, it is not ‘business as usual,’ it is both individual and team work, it is cheap and good quality, it is well facilitated, it brings something new immediately adaptable to our specific situation, it does not keep you away from the office, it brings together the people who are eager to learn and obliges all to share and discuss. It has built here . . . a critical mass of people that together can initiate change that will benefit the whole organization.”

In Kenya, Elsa continues her fight against the virus in her body and the ignorance and prejudice in her community. But she cannot do it alone. Because of what she has learned, Elsa can in turn inspire many more to do the same. She will replicate a “mini-VLDP” with the Kenerela Steering Committee, with the goal of influencing public policy. “The Uganda AIDS Commission,” she says, “made me realize the importance of influencing policy. Without that, we cannot [accomplish] anything.”

Today, Elsa’s fight is about HIV/AIDS. The skills she passes on, however, will empower men and women alike to fight whatever comes after it. Her son-in-law, Owino Okong’o, puts it succinctly. “Elsa is a role model—she is an example. When a leader talks about [HIV/AIDS], people listen to their advice. When a leader declares his status, others will find it easier to find out their status. [Elsa] has challenged me . . . and made me believe in her message.”

As published in Human Rights, Fall 2004, Vol. 31, No. 4, p.6, 8-9.

Carmen Urdaneta

Carmen Urdaneta is senior communications associate at Management Sciences for Health, located in Boston, Massachusetts.