Lauren: How long have you been working in public health, specifically on HIV projects?
Mutinta: Before JSI, I was working at the University Teaching Hospital in Lusaka. In the early 1980s we started noticing a pattern of severe illnesses in children which led to death. Later, this was identified as AIDS. It was very difficult to tell mothers that their children had AIDS; they could not understand what that meant. Parents were angry and in denial, and we were not equipped to deal with their responses. It was then that I decided to go for an HIV/AIDS counseling course, so that I could help the mothers. The course helped me a lot in working with parents who had children with AIDS. I think that was my introduction to HIV work. I have never stopped since.
I started working for JSI in March 1999 under a project called Zambia Integrated Health Project (ZIHP). JSI was responsible for the service delivery component of the project, called ZIHPSERV. I was the Private Sector Coordinator on the project. It was at this time that we started the HIV/AIDS Workplace Program called FACEAIDS. We had no choice but to start the program. Employers were literally knocking on our door and demanding for HIV/AIDS workplace programs for their employees who were getting sick for prolonged periods of time, and sadly, they were even dying. Later after ZIHP, JSI was awarded another project in Zambia called Support to the HIV/AIDS Response in Zambia (SHARe). This is where I am working now.
Lauren: In your experience, how has support (from government, community leaders, traditional chiefdoms, international organizations, workplaces) for people living with HIV changed over the course of the epidemic?
Mutinta: We have come a long way! There was a time when everybody was just looking, being judgmental, and stigmatizing. Now, a lot of people want to work with people living with HIV & AIDS (PLWH). Though, support and leadership from government could still be improved.
Lauren: What groups have been the biggest drivers of these changes? What have been the biggest obstacles?
Mutinta: The biggest drivers of these changes have been the people living with HIV themselves. The courageous men and women who came out in the open and started living positively have had the biggest impact in reversing the way people perceived HIV. The church leaders who spoke against stigmatization and discrimination, the international organizations who brought programs addressing care and support, family members and workmates who decided they would speak out and not keep silent to help their relatives and friends have all been instrumental in this change.
The biggest obstacle has been the lack of leadership from government. There is still a lot of denial among the leaders; they believe that we do not have somebody in government who can champion the HIV/AIDS agenda. But these leaders can be the champions, by demonstrating their support for PLWH and programs for PLWH through their actions.
Lauren: Has there been increased support for or awareness of HIV within the general community? Is there an increased awareness of stigma?
Mutinta: There is more awareness now from various groups of people about stigma. Education and sensitization trainings have been going on through the media (radio, TV) , through workshops and for younger people, through HIV/AIDS education at school. Schools have placed a lot of emphasis on the ills of discrimination and stigmatization. In the communities, the use of drama has been very effective. Young musicians that SHARe has worked with are using their songs to reach out to other young people with messages about the damaging effects of stigma and discrimination.
Lauren: How has JSI’s HIV work changed since you started?
Mutinta: In 1999 when I started working for JSI, the Zambian Project, ZIHPSERV was more focused on reproductive health and child health with very little HIV work. The workplace program in Zambia was the entry point for JSI’s HIV & AIDS work in country. It was gratifying to see JSI embrace the workplace model and then advocate to have it in all of their workplaces around the world.
JSI has kept up with the epidemic. As the problem grew, JSI also got involved in more and more HIV/AIDS programs, especially in Africa. Joel (Lamstein, President of JSI & World Education) came to visit Zambia at one time in ZIHP. He saw the burden that many staff had in looking after orphans left behind by relatives. He felt compassion for staff and worked with the Chief of Party, Nosa, to introduce the orphan’s allowance for staff who needed it. This shows that JSI is an organization that cares for its employees.
Lauren: Let’s talk more specifically about workplace HIV programs, as that is a hallmark of the SHARe project. What was it like for a person living with HIV in the workplace before some of SHARe policies and program were set in place?
Mutinta: ZIHP was like any other workplace-there was a lot of stigma. People did not want to share cups or glasses with people they suspected to have HIV. There was a lot of discussing behind the backs of others suspected to be sick. There were no policies to guide staff on HIV/AIDS issues. We did not have the courage to talk to a sick colleague to encourage them to access services. When the workplace program started, things start to change slowly. The greatest thing that happened was the disclosure by one of the staff in ZIHP. It was the beginning of the change we have since seen in SHARe. One colleague died during ZIHP, but he was the last man we buried because of AIDS. Our workplace motto now is “We won’t stand by, we will talk and act,” meaning we will not let our colleagues die, but we will approach our colleagues we suspect to be ill, counsel them, encourage them to access VCT and ART services.
Lauren: What are some of the unique programs that SHARe has helped create?
Mutinta: In Zambia it is not only stigma that is “killing” people, but our culture, our beliefs, and the way we look at gender issues too. Our culture is deeply rooted within us. Sexuality is never discussed openly. The way girls are brought up and taught is different from boys. Gender-based violence is common. Gender, sexuality in HIV/AIDS (GESHA) is an innovation started by SHARe in the police and prison services. It explores and addresses gender, culture and sexuality issues in the face of HIV/AIDS among police and prison officers and their spouses. Positive Action by Workers (PAW) is another innovation started by SHARe. This is a rapidly growing support group of people living openly with HIV/AIDS in the workplace. They come together to support each other, to work with management to address issues of HIV/AIDS in the workplace.
Lauren: What do you think SHARe’s impact will be on the HIV epidemic in Zambia?
Mutinta: SHARE’s support to National AIDS Council (NAC) and its Provincial and District AIDS Task Forces (PATFs and DATFs) has contributed a lot to the national response. SHARe has built capacity in these structures, and they are now able to carry out their mandates. The use of the Organizational Capacity Assessment (OCA) tool developed by SHARE has been very significant. The workplace program with the new innovations described above, the work SHARe has done with the traditional leaders, the young musicians and other young opinion leaders, the work done with public-private partnerships (PPP) in the Ministry of Tourism, the social mobilization events that have been done in Livingstone will all contribute to the long term success of SHARe.
Lauren: Compare your experience working as a doctor, as a public health professional, and as an individual witness of the HIV epidemic in Africa.
Mutinta: I never imagined that the disease we saw devastating the lives of people in the early eighties would still be here today. I thought then that we were dealing with a severe epidemic, but a cure was going to be found soon. I have seen AIDS destroy families. I have seen parents dying, each leaving behind several orphans to be cared for by family elders. I have seen grandparents struggling to raise families in their old age. I have seen these grandparents dying too, leaving the orphans with no one else to look after them, so the eldest child becomes the breadwinner. I have seen the very doctors and nurses treating these people die themselves because of fear of going for treatment within the same hospital, due to stigma. I have seen workmates dying and my own family members dying.
But, I have also seen hope. I have seen people, organizations, countries coming together, putting resources together to help Zambians. I have seen a disease which was once a death sentence become a disease that can be managed, thanks to all the resources that have gone into providing testing facilities & ART, as well as care and support programs. I have seen the disease itself change from the virulent attacks characteristic of the early textbook description of AIDS, including severe oral thrush, severe Herpes Zoster, other skin manifestations; the AIDS we see now is milder, I think.
Lauren: What aspect of your work with SHARe or JSI are you most proud of?
Mutinta: Establishing HIV workplace programs, where before there was nothing. I have also enjoyed scaling up NGOs working to respond to HIV; some of them started from zero and are now big organizations. That makes me proud!