“I’ve always been passionate about the role of the community in detecting and treating disease. When I was diagnosed with TB, my passion just got stronger.”

Noma Barnabas, Civil Society Liaison Officer to The Union

For Noma, this was not a moment too soon: “In most countries, civil society is playing a huge role in fighting irregularities in government and policy-making. It was civil society that turned the HIV/AIDS pandemic from a terrifying disease to a manageable condition. Civil society equally has a central role to play in TB response.”

Noma’s understanding of the need for well-informed advocacy is both personal and professional. “In 2005, the organisation that I was working for received funding to conduct gender analysis of the national TB response. Later on I joined Community Research Advisory Group, part of the Treatment Action Group. This group works closely with TB Trials Consortium (TBTC).The overall goal for this group is to advise and sensitise TBTC researchers about community concerns.

“I’ve always been passionate about the role of the community in detecting and treating disease. When I was diagnosed with TB in 2006, my passion just got stronger. The diagnosis had been a mission in itself, I had no traditional symptoms, information was lacking, test results came back negative. But I insisted on being initiated onto TB treatment and I eventually received it as a special case. I did receive a positive diagnosis but only after a marathon process. ”

Now, Noma plays a key role in reaching out to civil society organisations (CSO’s) to ensure their views are heard and integrated. “My daily activity is to strengthen partnerships between The Union and the civil society movement. I work closely with The Union's Community Advisory Panel (UCAP). I liaise with CSO’s who share similar interests to The Union. I provide technical support to The STREAM Trial; The Union’s annual World Conference on Lung Health, and to the Membership sections of  The Union. I represent The Union in many and various Civil Society gatherings. I am the face of The Union.”

Noma has strong reasons for why the work at The Union specifically, moves her to action and personal involvement:

“I think The Union’s strapline says it all, “Health solutions for the poor”. The more involved I become in The Union, the more convinced I am of the impact it has and the difference it makes to people’s lives. I am pleased that The Union World Conference now includes the community tract within the conference agenda, as well as the open community space, first established with ‘Imbizo’ at the conference in Cape Town – these are all good moves forward, positively embracing civil society concerns.”

Noma points out that The Union is similarly more vocal in its advocacy and this activity is welcome. Referring to February 2017 when the World Health Organization (WHO)* published its list of priority pathogens that needed urgent research investment – and omitted TB: “The Union immediately went on the front foot, challenging this publicly. It shows that The Union stands up for the voiceless.”

For Noma there is still work to do in interacting with civil society groups more effectively. “My appointment showed willingness to engage, that the civil movement should have a place at the table. But we need to strengthen partnerships with CSO's at grassroots level where The Union operates. We should collaborate with them in their activities and invite them to ours. We should establish and maintain networks for those who are or were infected and affected. By doing so, we will be putting a human face to the epidemic as well as tackling TB stigma.”

At the 20th Conference of The Union Africa Region in Ghana, the pre-conference activity included a regional capacity-building workshop, looking at how the personal survival stories of TB champions could be used for advocacy purposes. The session also tackled the practical concerns that come with grant applications, funding strategies and engaging wider support.

Noma insists that this kind of skills-sharing is no longer optional, “We learned how to write grant applications – the kind that result in funds and practical support. It is too easy to fill in a form without knowing the protocols – and then be rejected.”

Noma says, “Joining The Union was a huge milestone in my life. I always underestimated the power in me. Most civil society activists didn’t know about The Union and those that did, didn’t understand its core business. I have promoted The Union and promoted membership. I feel there is mutual understanding between The Union and CSO’s. We now work jointly at the World Conference and, of course, we disagree on certain aspects but, in the end, we do reach an agreement. Most of the time!”

There are challenges too: “We need resources for civil society engagement, both financial and human.  I operate alone – I wish there were more of me – but I receive a lot of support from my team members. I want to acknowledge the guidance I have received from Helen Platt (The Union’s Global director of Communications). There was a time that my family was going through challenges. I received support messages and calls - I really appreciated that. We are far apart in distance but the Communications Team is a team that works together.”

Noma also cites some personal influencers as an inspiration to her career. “I have huge respect for all female leaders. I have to mention my previous boss, Prof Glenda Gray, respected around the world for her tireless efforts to find the HIV vaccine, she is currently the President for SA Medical Research Council. And The Union’s past-president, Dr Jane Carter. She is very passionate about the Civil Society movement.”

But Noma is an inspiration in herself. “When the world throws lemons in your face, turn them into lemonade. I will never forget 16 April 1997, when the doctor gave me my HIV positive results. A month later, I lost my job as a banker. Little did I know that when that door closed, there was a huge one opening ahead for me to fly. My daughter was eight months old when I was diagnosed, she has now just turned 21. I never thought I would see that day. I feel the sky is the limit.”

* WHO recently published two reports that reinstated TB as a global priority for research and development investment. Read more here.

Source: The Union