AIDS Support Group Defies Adversity

This is the first of several articles I’ll be writing for the Botswana Guardian and Midweek Sun.

Light poured into the one-car garage meeting room of the Francistown Network of Support Groups as Edward Moreki opened the heavy, vertically swinging door. “Today we are meeting to approve our new constitution,” said Moreki, chairman and founding member of the organisation, and eight core members took their seats around a wooden conference table that almost entirely filled the dimensions of the room.

Edward Moreki, Founding Member and Chairman of FNSG

The Francistown Network of Support Groups (FNSG) is a tiny, influential, and at times life saving organisation with a history of growth and struggle. Started in 2005 to fill a gap left by the closure of COCEPWA – Coping Center for People Living with HIV/AIDS, it served as the umbrella organisation supervising eight HIV/AIDS support groups in the Francistown district. Through its counselor training programmes for people living with HIV, FNSG has helped hundreds accept their positive status and correctly adhere to treatment programmes, and has mobilized other infected and affected individuals to lead healthier and more fulfilling lives.

But since late 2009, the organisation has been in danger of folding.  Once fully supported through the District AIDS Office and by the African Comprehensive HIV/AIDS Partnerships (ACHAP), funding ended when ACHAP’s focus shifted from HIV treatment programmes to organisations that specialise more directly in prevention.

“We were impressed with what they were doing, “says Charles Olenja, Senior Programme officer at ACHAP.  Olenja says they were so impressed that in 2008 they produced “Prevention with Positives,” a thorough documentation of FNSG that would be used as an example to help similar fledgling organisations throughout Botswana grow into what FNSG was at the time. “I still feel they are an important group in prevention, but if the principals say no, I have no control over it, “he says.

The funding cut left FNSG with an inability to retain members.  Both the organisation’s lay counsellor programme, which focused on counseling patients in clinics, and focal person programme, which spearheaded support groups, required putting in full-time work. ACHAP’s funding included small incentives to these trained members, and as a result of the cessation of funding, support groups collapsed and FNSG’s membership dropped significantly – falling from over 100 to five in a matter of months.

“It was a blow to us,” recalls Moreki. “Most have gone to greener pastures and joined other organisations.”

Without money or members, FNSG lost its structure as a multi-tiered organisation offering counseling and support to hundreds, and has instead whittled down to a group of determined members meeting once a week and now offering their support towards resuscitating the organisation.

FNSG Members working on their constitution

To make matters worse, at the time of ACHAP’s withdrawal FNSG was not a fully registered organisation and had no other backup funders. They relied solely on the District AIDS Office, the HIV/AIDS Technical Advisory Committee (TAC), and ACHAP for their technical and financial support. Part of this, says Sibatheni Phakala, FNSG member and lay counselor, was due to the fact that they were concentrating all of their efforts on their operations. Funding seemed secured.

“We focused too much on clinics,” says Phakala, “we realized that some of the important things are not done.”

The HIV/AIDS Technical Advisory Committee was also caught off guard by the withdrawal. “TAC was not prepared for the withdrawal of ACHAP,” says Dr. Paul Nashara, Public Health Specialist and TAC Coordinator. “Since this happened we have run out of ideas,” he says, adding that he hoped to include FNSG in the next meeting’s agenda.

While FNSG fights to regain its financial security and status, HIV positive patients who would be receiving benefits from the organisation are now left without much help to turn to. Mopati Mompati, FNSG member and lay counselor, says since he stopped working in his clinic in Gerald he has already noticed the situation regarding patient adherence to anti-retroviral therapy changing rapidly.  He explains that people are not receiving the right counseling to help them accept their status and thus feel uncomfortable waiting in the lines to receive medication.

“Since we left, the number of people who have defaulted has gone up. The number of people who have died has gone up,” says Mompati.

He also believes the FNSG lay counselor programme is essential and irreplaceable.

“The relationship that we have with them is the kind of relationship even a doctor cannot have with a patient. That’s why I think we are different,” he says. “We feel it’s only at FNSG where HIV positive people can find comfort within people they share the same feelings with.”

It is this aspect he and many other members feel sets FNSG apart. While other organisations offer support groups and systems for treatment, FNSG employs those who are already HIV positive to work with patients having a hard time dealing with the realities of an HIV positive life. They believe this helps new members feel confident about disclosing their status and beginning a new life, free of denial.

Aware of the vital role they play in Francistown, FNSG is now scrambling – implementing a new constitution, writing proposals to other donors and thinking of new ways to survive. It became a fully registered organisation in April last year, and in October it began a door-to-door campaign aimed at educating young adults on the importance of eliminating multiple concurrent sexual partnerships. This campaign, which is currently ongoing, is also geared at recruiting new members interested in volunteering.

In April 2010 FNSG began a catering service that provided traditional Setswana food both for individual and hired events and at a food stand outside Francistown’s government offices. Although it did not earn FNSG much money and eventually was put on hold, Wynter Mmolotsi – the Francistown South MP, occasionally still hires them to cater for his meetings. For the past year and a half he has continued to share his office space, electricity and water – a donation carried over from the previous Francistown South MP.

“We are working so well,” says Mmolotsi. “I wish I could do more for them. My office has limited resources – there is little that we can offer, but I wish we had more to share with them.”

2 Responses

  1. […] has over twenty CSOs spread out all over town. These CSOs provide varied services including counseling, youth and sports, theater, and faith-based organizations. They are, however, all pooled together […]

  2. That was really well written. And I should know. I’m a journalist 😀

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