More than three decades since the first case of HIV was diagnosed in Uganda, it is inexcusable that stigma and discrimination towards people living with HIV still rear their ugly heads among us.
In one way or another, many Ugandans have either been infected or affected by the disease. Despite this, we continue to fail, judge and ridicule our mothers and fathers, sons and daughters, friends and colleagues: the more than 1.4 million people living with HIV.
A baseline survey in six districts in the Central Region of Uganda among 2,018 people living with or affected by HIV reported that 53.7 per cent had experienced either stigma from others, such as gossip, or self-stigma, such as suicidal thoughts.
The survey was carried by Nsambya Home Care, Kitovu Mobile and the National Forum of People Living with HIV/AIDS in December 2014. During the following 12 months, faith leaders and people living with HIV in the region publicly spoke out against stigma. A survey of the same group in December 2015 showed stigma had declined significantly, to 35 per cent. This is a step in the right direction.
However, 35 per cent is still disturbingly high when you consider that real or perceived stigma is one of the reasons people delay seeking HIV testing, care and treatment.
Acceptance not sympathy
Access to life-saving antiretroviral treatment has positively transformed the lives of many people living with the virus in Uganda. However, acceptance of people living with HIV by their families and communities still has some way to go.
Over the years, stigma has shifted from outright blame of people living with HIV to ‘knowing looks’ and unsolicited sympathy. People living with HIV do not need sympathy. They need to be treated like other human beings – with love, patience, and understanding.
Donors, the Uganda government and the organisations that deliver HIV programmes have done a lot to reduce stigma over the years. Many anti-stigma programmes have been carried out. Health workers have been trained to offer HIV services without exhibiting judgmental attitudes. And organisations have adopted HIV/AIDS policies to reduce stigma and discrimination at work.
Legislation may fuel stigma
But civil society organisations and HIV service providers fear this progress is under threat. They argue that the HIV and AIDS Prevention and Control Act (2015), however well intentioned, may inadvertently undo the gains achieved against stigma and discrimination.
According to Dorah Kiconco Musinguzi, team leader at Uganda Network on Law, Ethics and HIV: “Applying criminal law to the HIV fight negates the gains made over the years and neither brings justice nor curbs its spread. On the contrary, it will increase stigma against people living with HIV, and undermine fundamental human rights.”
The bill gives medical workers leeway to disclose the status of HIV positive people without their consent in circumstances where other people’s lives are endangered. It also criminalises HIV transmission, attempted transmission, and behaviour that might result in transmission by those who know their HIV status. This may drive people away from going to health facilitates for testing, counselling and treatment.
Musinguzi recommends the use of the existing legal framework and penal code to punish errant behaviour – not through an unnecessary HIV specific law.
If Uganda is to achieve the UNAIDS 90-90-90 targets by 2020, we should commit to addressing social justice issues that increase people’s vulnerability to HIV, including stigma and discrimination.
Those who are most at risk, such as sex workers and lesbian, gay, bisexual and transgender people, must not be left behind. People living with HIV should be involved more in designing, relaying and evaluating stigma reduction programmes and policies.
Education about HIV and AIDS is still needed in many areas, especially among our leaders and the younger generations. Let us re-ignite the conversations about HIV – this time with no finger-pointing and judgment. We all have a huge role to play in ensuring zero–HIV-related stigma.