28 November 2012

Ending stigma key to 'Getting to zero'

From 2011-2015, the global community will celebrate 1 December, World Aids Day, under the theme “Getting to Zero,” echoing the UNAIDS vision of achieving “Zero new HIV infections.


From 2011 to 2015, the global community will celebrate 1 December, World Aids Day, under the theme “Getting to Zero,” echoing the UNAIDS vision of achieving “Zero new HIV infections. Zero discrimination. Zero AIDS-related deaths.” 

Almost four decades after HIV and Aids first became part of the public consciousness, immense resources have been invested in prevention, treatment and care. Yet, while some countries have made significant strides in reducing prevalence and responding to the health care burden, there is still a long way from “Getting to Zero.”

UNAIDS estimates that 22.5 million people living with HIV in sub-Saharan Africa (UNAIDS 2010), representing 68% of the global HIV burden, with 5.6 million in South Africa alone. Yet despite high prevalence, there remains widespread stigma and discrimination, which hinder both prevention and care. Social injustices such as gender inequality, violence against women and girls, and homophobia also discourage people from seeking the information and services that will protect them from, and treat, HIV.

According to REPSSI, along with all of the physical resources, Getting to Zero requires new approaches and changes to social environments, especially when it comes to countering stigma and discrimination. 

Need to transform community’s attitudes

“There is a need to scale up work with communities and families to transform attitudes. This starts with helping them deal with the emotional and social challenges they are facing,” says Noreen Huni, Executive Director of REPSSI. “Supporting people living with HIV, reducing stigma and discrimination, and caring for affected families is key to achieving Getting to Zero.”

REPSSI works in 13 East and Southern African countries to lessen the devastating effects of HIV and AIDS, conflict and poverty on children by providing social and emotional support to children, their families, and care givers. Working alongside community-based organisations, development practitioners, and teachers, the NGO helps develop skills necessary to provide care, love, and protection.

Given the prevalence of the pandemic in the region, it is almost impossible for governments and health facilities to shoulder the burden of care alone. Community and family care are vital, yet can be hindered, because of fear and discrimination.

Winfrida Mwashala is the Executive Director of the St Lucia Hospice and Orphanage in Arusha, Tanzania. Mwashala participated in a groundbreaking Certificate Course in Community-Based Work with Children and Youth, developed by REPSSI and UNICEF.

According to Mwashala, applying what she learned to reach out to the community to counter stigma has enabled St Lucia to reach far more children than they could do alone. Previously, St Lucia was a residential care home for children abandoned due to stigma.

Increase from 30-9000 children cared for

“The home could only take up to 30 children at once. Now, we have reached more than 9000 children at community level,” says Mwashala with a smile. By addressing stigma and supporting families, this new approach has helped reduce discrimination, and children are now being cared for within their own communities.

Living with HIV, Chipo Mwanza* is supported through Roma/Ng’ombe Home Based Care, in Zambia. She started a Tracing Book after training from REPSSI and CATIE, through which she could make notes about her health.

“All the dates are included, appointment days, when you are going for a CD4 count, etc., all are written down,” she explains. “This makes the work of the medical staff lighter, gives a doctor an opportunity to know your history without wasting time.

Along with helping to facilitate medical care, the Tracing Book also helps people living with HIV take responsibility for their health, and see that they have the ability to live positively.

“The tracing book also helped my daughter to accept her status and live a happy and healthy life,” she adds. “It helped to change our mindset from just thinking of being sick to having new thoughts of moving on in life and your future. I thought I would die in 2006. But am still going strong and even encouraging other friends.”

No room for discrimination

The Getting to Zero framework clearly recognises the importance of caring communities, citing, “Where HIV related stigma, discrimination, inequality and violence persist, the global response will forever fall short of the transformations required to reach our shared vision.”

This echoes the previous words of United Nations Secretary-General Ban Ki Moon: "stigma remains the single most important barrier to public action.”

UNAIDS has set out a number of key steps to advance global progress in achieving targets for universal access to HIV prevention, treatment, care and support and to halt and reverse the spread of HIV. Among these are halving sexual transmission of HIV, ensuring universal access to antiretroviral therapy, and addressing people living with HIV and households affected by HIV in all national social protection strategies, to provide for access to essential care and support.

This strategy is a roadmap marking milestones on the path to achieving UNAIDS’ vision of “Getting to Zero”. On the one hand this means putting law policies and programmes in place to create legal environments that protect people from infection and support access to justice.  On the other, it means a fundamental shift in attitudes, replacing fear and stigma with love and care. 

World Aids Day is an opportunity to re-affirm our commitment to fight against HIV/Aids, remember those who have died, and celebrate accomplishments, such as increased access to treatment and prevention services. It’s an opportunity to reflect on how far to go and what more needs to be done – and to ask ourselves, what am I doing to Get to Zero?

(Kopano Sibeko, November 2012)

* Not her real name.

For more information about REPSSI visit their website.


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Dr Sindisiwe van Zyl qualified at the University of Pretoria in 2005. She is a patients' rights activist and loves using social media to teach about HIV. She is in private practice in Johannesburg.

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