Driving out stigma will make it easier for people to talk and heal

Despite growing attention to range of multi-faceted stigma related to HIV and TB, it still not only jeopardizes lives of affected communities but also blocks access to care. At the recently convened 48th Union World Conference on Lung Health in Guadalajara, Mexico, CNS (Citizen News Service) spoke with few leaders from affected communities to listen to their insights on how to improve TB and HIV care as well as address stigma.

Albertina Nyatsi who represents Positive Women Together in Action, as well as Africa Coalition on TB (ACT!) in Swaziland, shared "I had TB twice - first time in 1997 and then 2014. When I got TB second time it had almost killed me as it did not present with known symptoms of TB. I was bed ridden by the time they discovered that I have TB again. What I have learnt from my own experience is that in people living with HIV, sometimes TB does not present with its known symptoms. So I will encourage people if they are sick to get tested for TB as TB may not present with known symptoms."

Affected communities know best on what is working and what is not. Their voices need to shape TB and HIV programmes for better outcomes. "We need to involve people living with the diseases or survived diseases because they know what interventions work. We must ensure that they are involved meaningfully and they get heard in the processes like those of programming" said Albertina.

HIV TB: double stigma

Albertina Nyatsi, Swaziland
"People fear both diseases: HIV and TB. Because of this fear they stigmatise. Firstly we see lot of stigma by association. For example, when people see someone hanging out with a person who is HIV positive, they wonder why are they walking together and become judgmental: 'Are you also HIV positive?' Even if a person is HIV negative but involved with networks of HIV positive people, it is often assumed that the person is positive too – this prevents people from being involved. Another type of stigma is when people are afraid that HIV can spread from infected people to them – for example when people with HIV want to cook, people will not let them cook ‘please go and rest’ – they are not concerned for you rather afraid that you may infect them. Another stigma is often faced by people who take HIV medications by calling names to HIV medicines which means ‘rising up from death’ or when HIV negative people break a glass by accident for example, people apologise or are concerned but when HIV positive people break a glass it is associated with their medication which makes them 'mad'. All kinds of stigma must end" asserted Albertina.

Being judgmental does not help

"Everything that goes wrong is blamed on our HIV status or medications we are taking. Self-stigma comes because a person has experienced a lot of things and now they fear associating with other people. Their self-stigma tells them to keep themselves to themselves as people have hurt them so much because of they being HIV positive. Self-stigma takes away a lot from the person and violates the human rights of the person" said Albertina.

In other rights-based work, it is well recognized that people often face unique self-issues, including intense self-stigma. Self-issues are a set of concerns that positively or negatively impact self-acceptance, self-perception, self-efficacy, self-esteem and self-confidence. Self-stigma often results when self-issues interact with external causes (such as discrimination or violence in family, school, social or work settings), resulting in depression, low self-esteem, anger and self-harm, even suicidal intent.   

Self-stigma contributes to ‘bridging behaviours’ – such as substance abuse - that can jeopardize health seeking behaviour. Quality counselling especially the support provided by cured TB patients for example, helps in addressing self-stigma and also, dispels myths and misconceptions. Healthcare providers should spend more quality time on patient education and also engage networks of people who have experienced TB in their lives. "We need to encourage each other to love themselves, go to health services, and seek timely support" said another TB survivor Rahul.

If we are to end TB, we have to drive TB out of the shadows, end all forms of TB related stigma and discrimination, and reach out to every person who needs TB services, support and care.

Albertina added: "People with TB are feared. People do not want to go to see someone sick with TB due to the fear that TB may spread to them too. May be health workers are not explaining things. Health workers say we should not discriminate but they come to our homes and then isolate the patients of TB. People stay away from people with HIV and TB because often health worker has told them to stay away from the positive people."

"Sometimes people with TB are put at inhuman places. I have a case of TB who was put in a place with rats. Family members of another TB patient were not willing to wash clothes due to the fear of TB spread" said Albertina.

Women being primary carers are more vulnerable

"Women are vulnerable group for TB as they are primary carers – they care for TB of every person in family! In families where husbands are working far away but get TB, they come back home and women ends up caring for them. She becomes vulnerable as she has to care for everyone including the sick."

Family support can be a game-changer

"I am lucky to have a caring partner who gives me inspiration to go out and care for others. If I am not the one who goes out and makes the difference then who will do so? When we see people regain confidence and see hope with our help, it gives us the courage to keep going on helping each other" said Albertina. She is an inspiration to so many others and rightly so.

Youth fear going to health centre due to stigma

Talkmore Mazorodze, Swaziland
Talkmore Mazorodze, Volunteer Project Officer with Swaziland Network of Young Positives, an organization working with adolescents and youth living with HIV and AIDS in Swaziland, is also involved with Africa Coalition on TB (ACT!) in Swaziland. "Youth in Swaziland are facing lot of challenges especially when they go to health centres as they are not youth friendly - they are not treated with dignity. It makes it more difficult for the youth to accept their situation. Healthcare workers need to be sensitized and trained by organizations like us. Young people fear going to the health centre due to the stigma they might face from healthcare workers or others. There are taboos" pointed out Talkmore.

Not just qualification but experiential knowledge matters

Nomampondo Barnabas, Civil Society Liaison Officer, International Union Against TB and Lung Disease (The Union), shared her reflections "as a person who is living with HIV and had TB."
Nomampondo Barnabas, South Africa
Photo courtesy: TheUnion.org

At the inaugural ceremony of this conference, Christoph Benn, Director of External Relations of the Global Fund to fight AIDS, Tuberculosis and Malaria (The Global Fund) had announced a partnership agreement between the Global Fund and The Union that will explore innovative financing instruments to galvanise resources among the private sector to reach the global goal of ending the epidemic by 2030.

"At the opening of 48th Union World Conference on Lung Health, the commitment from the Global Fund, was a huge milestone. Because most of the time specially the civil society is under-resourced regarding funding and I cannot wait for the day when the commitment from the Global Fund is implemented and put into practice - because we really need louder voice for TB advocacy. We have seen community-led advocacy turning the tide around HIV and there are so many lessons we can learn and strategies we can apply. Looking at how TB is advancing from drug sensitive to drug resistant strains - MDR-TB and XDR-TB - I feel that coming from HIV activism there is so much we can implement and apply to turn around the TB tide" said Nomampondo.

Sharing key lessons that can be learnt from HIV movement and adapted for advancing progress to end TB, Nomampondo reflected "First and foremost: resource mobilization: secondly political commitment. Thirdly civil society engagement especially in high burden countries putting pressure on their governments and lobbying them to commit to put funds and have effective programmes."

"In TB sector the efforts to implement these three lessons is happening but is happening in small silos and is not very well coordinated. That is why we need very well coordinated efforts we need to pull our strengths together – even with HIV that is how it had started – until there was a global voice connected with regional and country level voices. We are in those early stages with TB."

She also pointed out that TB programmes need to do a lot more in raising awareness at the grassroots. "Raising awareness at grassroots level where TB is, can enhance programme outcomes. For example are TB patients at the grassroots like women aware why should they take their child for screening? This is the kind of awareness and education that needs to be done at the facility level and community level by the civil society" rightly shared Nomampondo.

Learning from the key affected populations and keeping them central to the fight against AIDS and TB, can accelerate the progress towards meeting the Sustainable Development Goals (SDGs). We do hope that the world leaders attending the forthcoming UN High Level Meeting on TB in 2018 will pay heed to these voices from the frontlines.

Bobby Ramakant, CNS (Citizen News Service)18 October 2017
(Bobby Ramakant is the Policy Director at CNS (Citizen News Service) and a WHO Director General's WNTD Awardee (2008). He is part of CNS Correspondents Team with support from the Lilly Global Health Partnership for thematic coverage of the 48th Union World Conference on Lung Health. Follow him on twitter: @bobbyramakant or visit www.citizen-news.org)

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