“I suffered many times as a person living with HIV. My family discriminated me, they did not allow me to use their cups and plates at home. This forced me to leave their house to go and make my own shelter” Raina.

Okalongo – Tse na Marry in Omuthitugwonyama, Okalongo Constituency, in Omusati Region, with a female-dominated membership, is one of the oldest group in the history of support groups of people living with HIV in Namibia. The support group started with less than 5 women living with HIV in 2005, who were experiencing stigma and discrimination as a result of their health condition then. Today they are more than 40 members and still, the majority are women.

Tse Na Marry Support Group Members distributing ARVs among themselves

 Nelly Maria (not her real name), a strong looking woman, is the founder and current chairperson of the support group.  The name Tse na Mary (We and Maria) is linked to a Catholic’s saint, holy Maria, according to the bible, the mother of Jesus.

“Our prime purpose to establish this support group is to motivate each other to accept our health conditions,” she says. Around 2005, many people did not have sufficient information about HIV, it was a new thing in their community.  “Some of us were not adhering to our treatment due to lack of information. We united ourselves and used our lived experiences to make changes in our communities through the support group”.

Tse na Mary is strictly for people living with HIV only. One has to be HIV positive, tested, to join the support group. Nelly explained that they made this decision because they want to discuss the issues affecting them as people living with HIV.

"Despite that limitation, our support group is not closed, HIV negative people are more than welcome to join our support group as advisors but only allowed to meet with us once in a month," says Nelly.

Stigma and discrimination

When she tested HIV positive in 2005, Mrs. Raina Simon’s (not her real name) life changed from good to bad. Her family members and friends did not count her as a human being. She was stigmatized and discriminated against her HIV status.  She lost hope, she was depressed. She joined the support group in 2005.

“I suffered many times as a person living with HIV.  My family discriminated me, they did not allow me to use their cups and plates at home.  This forced me to leave their house to go and make my own shelter” Raina.

A 49-year-old, Cisco Immanuel (not her real name), joined the support group in 2005. She still remembers how their support group played a role in the reduction of stigma and discrimination in their village.

“Some of us, in the support group, were trained in Home Based Care. This helped us to go house by house giving HIV and health education to people. Some understood us, and some were resistant to information” says Cisco

To the question, if support group helped in the fight of stigma and discrimination,

“Yes, of course, because people who were discriminating us for living with HIV and being members of the support groups, today they understand us. They are no more calling us bad names” She (Cisco) said.

ARVs distribution at health facility level

From 2004, when ARVs came in Namibia, there were few hospitals with ARVs. In the northern part of Namibia, they were only available in Oshakati Intermediate Hospital.

“On my ARVs refill day, I used to get up at 4 a.m. to prepare for the journey. If you wait for 5 a.m. or 6 a.m. you could be forced to foot from our village to Oshakati, about 250 KM” says Raina.

People living with HIV on treatment camped at the hospital one day before their refill day.

“My dear, we used to stay there until 21H00 (pm). Some of us and many slept there to avoid traveling back late. The pharmacy used to be overcrowded every day” Says Nelly.

Not so long, Oshikuku Hospital, about 80 KM from their village, introduced ARVs to cut the distance short to Oshakati Intermediate Hospital.  Although the distance was reduced, the issue of transport fare and congestion at hospitals remained the same.

“Now, we have ARVs at Okalongo Health Center and Oshikuku Hospital but some of the unemployed members still skip their refill days because they do not have money for a taxi. Even the overcrowding at the hospital discourages us to go there. It is a bad thing to go there at 7 a.m. until 17H00 with an empty stomach" Raina explained. 

Community-Based Treatment

Raina, a quite person by nature, is being chosen by her fellow group members as a refill leader. A refill leader is a person in the support group, responsible for collecting ARVs for all members in the group from the health facility. The refill leader is being trained by Tonata PLHIV Network on how to distribute the ARVs to the members of the community.

“Pharmacists pack our group’s ARVs one day before our refill day. I go with all the health passports for each member, and their containers, for the health workers to verify. It takes the health workers approximately one hour and a half to prepare our ARVs. We are no more staying there from 7 a.m. to 7 p.m. as it was those days” says Raina.

Nelly could not hide her happiness, she is happy to receive her ARVs in her support group.

“I am very much happy because it is strongly helping. Some members struggled with transport fare to go at the hospital for refilling. Some used to skip their refilling days due to distance and money for transport. We are all adhering to our treatment now” Nelly.

As the only network of people living with and affected by HIV in Namibia, Tonata PLHIV Network recognized the need of engaging the Ministry of Health to remove the burden facing people living with HIV on the treatment such as long distances to and from hospitals. Community-Based Treatment is the new program, in line with the new Namibia’s National HIV treatment Guideline, Differentiated Care Model which intends to decentralize treatment. In the case of Tonata, about 700 members of support groups on treatment, are receiving their ARVs at their support groups’ meeting point.

In Namibia about 85 percent of people living with HIV know their status, while 86 percent of those who are HIV-positive are on antiretroviral treatment; and 84 percent of those on antiretroviral treatment have their viral load suppressed.

Tse na Mary support group members appealed to the public to join support groups in the community to mitigate the impacts of HIV in our society.

“I am appealing to all people on treatment to adhere to the treatment. The ARVs prolong our lives, they make us live longer on earth.  Those who are not in support groups should join support groups to get information”.  Raina

“My message is simple, everyone should join support groups to benefit from these good new community treatment programmes. Support groups give information, and they open our eyes to continue with our lives" Nelly concluded.

ARVs are packed and distributed according to the health passports of each member.