My Journey: Forming the National Association of PLWHIV

After my graduation at college, I started teaching at a primary school in Katutura. My schedules became hectic. I needed to cut myself into pieces in order to at least give a balanced attention to each activity.

From morning to afternoon, I was a full time teacher and from afternoon till late I had to attend to HIV related issues. I was not paid to attend to HIV issues but as a victim of circumstances, I was a tool used to disseminate information to the community. 

The cry at a community level became more louder and I developed the passion to dedicate more of my time at that level. I left my source of income (teaching) for humanity.

A National Association of PLWHIV was formed in 1999 by people living with HIV for people living with HIV. It all started at Zoo Park, when David Lush and I sat and discussed issues concerning people living with HIV at large. With a few members, we developed a support group in Windhoek and met from time to time to share experiences of living with HIV and learn from each other. 

It was during these support group meetings when we idealised the issue of national community outreach about HIV. The Minister of Health and Social Services then was Dr. Libertina Amathila and she wanted so much the issue of HIV to be made a noticeable disease. We approached her and presented our perspective in regard to making HIV a noticeable disease. 

Our issue was taken up by her office and put into consideration. After the meeting, we needed to reach out to Namibians living with HIV across the whole country. 

As volunteers without funding, we dug into our own pockets to hike and travel the whole of Namibia campaigning and reaching people with HIV. 

In three weeks time, we had a total number of 1200 PLWHIV in different regions. With support from Michael Clayton, we held a strategic planning meeting in Windhoek with people living with HIV from the regions. It is at this strategic planning meeting that we came up with the name of the association. The name was to reflect PLWHIV’s motives and it was to be in Rukwangali; “Lironga Eparu” which simply means “Learn to Survive”. 

The overall purpose and role of Lironga Eparu, is commitment to improving the quality of lives of PLWHIV by achieving the aims and objectives of the association through a human rights based approach to HIV and AIDS grounded in advocacy efforts. 

Lironga Eparu aims to empower members, to combat discrimination against its members, to facilitate effective participation of its members and raise consciousness in the general populace on the interests and needs of PLWHIV in Namibia.

In 2001, Lironga Eparu was launched and we moved into our first offices by 2002. Finances started coming in but it was in drops, not covering the administration costs, more specifically intended for community purposes. 

Lironga Eparu is a membership-driven organisation, members increased from 1200 to 43 000 in 2002. Our first funding came from Hivos which was about US$20 000. With these funds to cater for 43 000 people, we delivered counselling services, advocacy, nutritional support, psycho – social support etc in different regions and established branches of the organisation. 

The organisation campaigned against stigma and discrimination, and to become a leading group of PLWHIV. Lironga Eparu fought for the rights of PLWHIV, represented them at professional level and brought a high profile leadership in the fight against HIV and Aids in the country i.e. the Office of the President, Prime Minister and the church leadership. 

More partners came on board to financially support the association i.e. Pharmacies, Ibis and Global fund. Funding was specifically for service delivery and not for administration and capacity building. Most PLWHIV were then referred to Lironga Eparu and it became a mother of PLWHIV.  

Lironga Eparu was registered as a Trust, and regarded to be membership organisation. Currently Lironga Eparu is registered under the Company Act section 21, constituted by its Board members.

At this very end, given the previous reports and assumptions made by different stakeholders about Lironga Eparu, one cannot tell who Lironga Eparu is. Others say Lironga Eparu is Emma and Emma is Lironga Eparu. I wouldn’t have imagined being an institution. A number of people out there have been suppressed and deprived by others in the sense of trying to punish an individual who does not make the institution. Donor/ stakeholders’ politics is at another level and there is need to write about it and understand it better. 

I don’t know how to advise emerging institutions like Lironga Eparu because I would lie for patriotism. Yes I am happy with the role I played in forming Lironga Eparu and achieving its objectives and that doesn’t make me Lironga Eparu.