FHI - People Living with HIV/AIDS in Nigeria Find Support in Network

DECEMBER 2006 — Assumpta Reginald believes one of the chief reasons she is alive is to help those infected with HIV.

"I think God has a purpose for keeping me alive, part of which is to save others," she said. "In every situation, some people must make a sacrifice for others to succeed. I am one of those. I know that my work is having a positive impact on people living with HIV/AIDS and those who do not know their HIV status."

The 32-year-old woman has channeled her missionary zeal through the Network of People Living with HIV/AIDS in Nigeria (NEPWHAN), an umbrella organization of support groups of people living with HIV/AIDS (PLHA). Established in 1998, NEPWHAN works to ensure the rights of PLHA in the country are respected and promoted, they have a voice in policymaking on issues affecting them, and they have access to needed services.

Reginald, who was bed-ridden for several months in 2001, learned that year she was HIV-positive. She also joined NEPWHAN in 2001 and has been a tireless advocate for PLHA since then as national treasurer and mobilization officer of the organization. Her health has dramatically improved since she went on antiretroviral drugs (ARVs) in 2003.

"Since I have known my HIV status I have been living in fear. But since I came to know about NEPWHAN I have been able to learn how to manage HIV, especially opportunistic infections that are the major killers of PLHA, and have broken the silence about HIV in my family and community," said Reginald, a widow with two children.

Increasing Awareness of HIV/AIDS

The organization has confronted significant obstacles to fulfilling its mission. In the early years of the HIV/AIDS pandemic, the Nigerian government placed much higher priority on addressing other national challenges, such as malaria and malnutrition, she said. The cost of providing care to PLHA was prohibitively expensive. And those infected with HIV faced stigma and discrimination in the military, schools, jobs and even their families.

The current Nigerian government, however, is very supportive of NEPWHAN, she said. Organization officials have met several times with President Obasanjo about the government's response to the pandemic, and did so again on Dec. 1, World AIDS Day. Reginald said the president established a goal, as yet unmet, of providing 250,000 Nigerians with free ARVs. And Nigerians are better informed about HIV-related issues than when the organization was established.

NEPWHAN has flourished in this environment and now consists of 250 support groups with 80,000 members. The organization is a member of all national AIDS committees and operates in more than 200 communities in Nigeria.

Advocating for People Living with HIV/AIDS

The organization engages in an ever-growing number of activities, including advocacy for PLHA in the country. NEPWHAN is pressing hard for National Assembly approval of legislation that would prohibit discrimination against PLHA in such key areas as employment and housing. The organization is also seeking increased government funding of treatment and counseling and testing centers, care and support, pediatric antiretroviral therapy and prevention, and universal access to ARVs. Further, NEPWHAN is seeking meaningful PLHA involvement in national decision making about HIV/AIDS-related issues.

The organization demonstrated its clout in 2004 when the Nigerian Institute of Journalism succumbed to pressure from NEPWHAN to reinstate Fredrick Adegboye, a student expelled a year earlier because he was HIV-positive. Reginald said the institute reversed its decision after Journalists Against AIDS Nigeria and African Independence Television covered a demonstration by NEPWHAN against the institute. In December 2006, Reginald was honored by Journalists Against AIDS Nigeria for her advocacy for PLHA.

Members of NEPWHAN also take part in several income-generating activities, including cultivating a ginger farm in Southern Kaduna and bead making. Reginald said the profits from these activities help support member families and facilitate additional support group functions. In addition, NEPWHAN distributes nutritional supplements and vitamins to the support groups.

Focusing on Home-Based Care and Orphans and Other Vulnerable Children

Reginald is the advocacy focal person of a NEPWHAN support group called Unique AIDS Control Organization. The support group, which has more than 200 members, has focused on home-based care and orphans and other vulnerable children (OVC) and their caregivers. The USAID-funded, FHI-managed Global HIV/AIDS Initiative Nigeria (GHAIN) recently provided training for a project targeting 500 OVC and 120 caregivers in six communities in Bwari and Abuja Municipal Area Councils. The project covered such key activities as psychosocial training of volunteer counselors, business management and nutrition training of caregivers, life skills training of OVC, and emergency medical support and educational materials for OVC.

Reginald said GHAIN also trained members of Unique AIDS in palliative home-based care and adherence counseling for PLHA, and provided them with home-based care kits. Further, GHAIN has given NEPWHAN capacity and network building assistance, including strengthening its monitoring and evaluation systems. With support from the United Kingdom's Department for International Development, FHI's Strengthening Nigeria's Response to HIV/AIDS Program (SNR) has also helped NEPWHAN branches in six Nigerian states strengthen their networking capacity.

"We greatly appreciate the support we have received from organizations such as FHI," she said. "The contributions by these groups will go a long way in the fight against stigma and discrimination in Nigeria."

In addition to its national activities, NEPWHAN is an active member of African and international PLHA networks. Reginald said networks similar to NEPWHAN have recently started in Sierra Leone and Ghana.

NEPWHAN and its national and multinational stakeholders, including GHAIN, held a forum in February 2006 aimed at ensuring NEPWHAN remains a dynamic and effective organization. Reginald said the participants discussed ways to strengthen the organization's institutional capacity, develop an action plan, adopt a constitution and elect a National Executive Council.

Serious Challenges Remain

Although NEPWHAN has enjoyed major successes, it still confronts serious challenges, Reginald asserted. She cited a recent report by the Joint United Nations Programme on HIV/AIDS that nearly 3 million people are living with HIV/AIDS in Nigeria — exceeded only by India and South Africa. While 600,000 of those require antiretroviral therapy, fewer than 100,000 are receiving treatment. "Universal access is still a dream for many Nigerians," she said.

Reginald said stigma and discrimination also remain major problems. "HIV is not what kills us. It is the actions of others toward us," she declared.

NEPWHAN also needs to strengthen its outreach to PLHA in rural areas and better address their concerns, according to organization officials.

Nonetheless, Reginald is proud of the impact NEPWHAN has had on the lives of PLHA. "Coming together to meet with people who are HIV-positive has given us hope that there is still meaningful and reproductive life after testing positive to HIV," she said.

"We have come a long way. We are not alone. We are not helpless."

PHOTO: Assumpta Reginald, an advocate for people living with HIV/AIDS in Nigeria, December 2006. (Alan Goodman/FHI)