As the world marked the fourth Zero Discrimination Day yesterday, Emma* was not in a celebratory mood – she is afraid to tell anyone about her HIV status. Apart from her close family, her doctor and the nurses at the centre she gets her anti-retroviral drugs from, no one outside that world knows of her status. And she wouldn’t dare tell anyone else, she tells me, for fear of discrimination.
At 24, Emma is a mother of one and HIV-positive. Her two-year-old son is also HIV-positive.
Sometimes, people comment on how small her child is and all she can do is force a smile to hide her sadness, saying, “he just doesn’t like to eat” or “It is his body type”.
She fears that he will be discriminated against and bullied because of his status, and he will eventually ask questions about the medicine he takes. The question she dreads most is ‘why me?’, she says.
Emma is worried about whether he will be accepted in society, especially with horror stories she’s heard of mistreatment of HIV-infected children. But she adds that there is a silver lining in the sky —
people are increasingly becoming more accepting, though not all.
Just like Emma, many people living with HIV still have to hide to save face. Whether at work, school, or in the community, sometimes they feel safer hiding.
“Some relatives don’t know how to deal with it. They just talk and I know they are talking about me, but I choose to ignore it,” Emma says. “The worst is when they first discover your status and they show too much pity. I know they were trying to be there for me, but that was really depressing.”
This is a type of experience that Dorcas Khasowa knows too well. Working as a programme officer in advocacy for adolescents at the National Empowerment Network of People Living with HIV-Aids (NEPHAK), she has heard many cases of discrimination against teens. Some of them are unable to take ARVs freely in school for fear of stigma. In sports too, some people fear that playing with HIV-infected people could lead to infections. But she advises that there is minimal risk in cross-infection.
Khasowa says people should put themselves in HIV-positive people’s shoes and treat them as they would like to be treated. This could address discrimination, she says.
Despite the challenges, positive strides have been made in informing the population and helping people interact freely with HIV-infected people, she adds.
Timothy Wafula from the Kenya Legal and Ethical Issues Network (Kelin), which advocates for a rights-based approach to HIV-related strategies, says stigma and discrimination often discourage people living with HIV from seeking treatment and this may affect their rights.
He adds that discrimination often “inhibits the ability to reach these populations with prevention efforts, and thus increases their vulnerability to HIV”. This could fuel the spread of the disease, Wafula says.
In the Health and Human Rights Journal in 2016, Patrick Michael Eba says, “Despite recent progress in the response to the epidemic in Kenya, pervasive stigma, discrimination, and human rights violations associated with HIV remain serious challenges.”
Eba adds that some of the key concerns for rights groups working with people living with HIV are justice, confidentiality and lack of sensitivity to people living with HIV.
The World Health Organisation in its website says discrimination remains widespread and is widely reported in health institutions worldwide in cases of people living with HIV. Yet, healthcare facilities should be “safe and caring environments”, WHO says.
“Any obstacles that inhibit access to healthcare facilities, including to testing, treatment and care services, must be removed,” it adds.
According to the UNAids, data from 50 countries show that one in eight people living with HIV have been denied healthcare.
In a press release, UNAids executive director Michel Sidibé said, “Healthcare settings should be safe and supportive environments. It is unacceptable that discrimination is inhibiting access to care today.”
He added, “Eliminating discrimination in healthcare settings is critical, and we must demand that it become a reality.”
The stigma associated with a person who is HIV-positive can strain relationships and even lead to job loss in some cases. This is why the United Nations Programme on HIV-Aids (UNAids) launched its Zero Discrimination Campaign on World Aids Day in December 2013. The Zero Discrimination Day was first marked on March 1, 2014.
In 2016, UN secretary General Ban Ki-moon was quoted in a UNAids press release saying, “When the most marginalised and vulnerable face discrimination and abuse, all of us are diminished.”
This year, the fight against discrimination has been taken to social media with the Twitter hashtag #zerodiscrimination. UNAids is asking people to speak up against all kinds of discrimination, whether in relation to race, gender, sexual orientation or health conditions.
“Everyone has the right to be treated with respect, to live free from discrimination, coercion and abuse,” Sidibé said. “Discrimination doesn’t just hurt individuals, it hurts everyone, whereas welcoming and embracing diversity in all its forms brings benefits for all.”
In Kenya, several organisations working on HIV matters are helping to address discrimination and encourage HIV-infected people to live a full life and be able to fit in society. Many organisations also have a non-discrimination policy, not just on HIV-infected persons, but also on issues such as race and disability.
The UNAids action plan for zero discrimination states that the some of the issues people face and the organisation wants to address to stop discrimination are to prohibit forced testing or treatment and to encourage respect for patient privacy and confidentiality.
In Kenya, these two matters have been largely debated, given that many cases before the HIV and Aids Tribunal revolve around the two — in relation to discrimination at work and in healthcare facilities.
In 2012, a court in Namibia ruled that three HIV-infected women had been sterilised without their consent.
In another case that year, YBA sued Brother Nicholas Banda and three others for sharing her HIV status with colleagues, which led to discriminatory, derogatory and humiliating actions against her that became worse after her husband died. She claimed she was later terminated on account of her HIV status. The tribunal found that she was forced to disclose her status and her termination was illegal.
In 2014, five women sued the government and some NGOs demanding compensation for forced sterilisation, with some saying they were only informed of the procedure after they had been sterilised.
In 2015, a Malawi court awarded damages to 11 sex workers who were forced to take HIV tests by police in 2009 and the results were disclosed in public.
The tribunal in Kenya, the first of its kind worldwide, has handled more than 75 cases presented before it and referred others that are beyond its jurisdiction to courts. The tribunal can award damages, order specific steps be taken to stop a discriminatory practice and follow up on the same through progress reports.
One of the cases handled by the tribunal was that of a woman, CNM, who sued Karen Hospital in 2015 for forcibly testing her for HIV without her consent. She also sued for violation of confidentiality for informing her insurance company and failing to provide pre- and post-testing counselling. She was awarded Sh2.5 million in damages.
*Name has been changed to protect identity.