Chinsinsi (not real name) was just four years old in 2006 when she was diagnosed with HIV at Queen Elizabeth Central Hospital (QECH) in Blantyre. She had been sickly and bedridden for over a month when she took the blood test.
Like most young people living with the virus that causes Aids, Chinsisi spent a decade not knowing why her body’s defense against diseases was falling and the reason she was taking medicine every day.
Her condition was made worse by the death of both parents before her 10th birthday.
“I grew up being passed from one relative to another, but I always remember the hardship I endured in the care of my sister who called me a witch simply because of my HIV status,” says the 18-year-old young woman who lives in Senior Chief Kachindamoto’s territory on the eastern side of Dedza District. “She scorned me and accused me of bewitching her daughter.”
Chinsinsi’s smile dims into silent sobs as she recounts how her sister demolished her house and rented a smaller hut away from the village to “flee an evil spirit”.
“My sister said she pulled it down to show she was sick and tired of living with a witch who wanted to kill her daughter. She didn’t want anyone to come closer to me. It broke my heart knowing this was my sister, who was mistreating me like that regardless of my weakness,” she explains.
For a month, Chinsinsi stopped taking antiretroviral drugs that have reduced Aids-related deaths from 52 000 to just about 13 000 since 2005, according to the National AIDS Commission (NAC) of Malawi.
Chinsinsi blames the lapse on the agony, coupled with long distances to Mua Mission Hospital, almost 20km north of her village.
“Life lost its meaning,” she states. “Besides, healthcare workers at the health centre near my village always referred me back to the hospital where I first registered for HIV treatment when I was living with my uncle there,” she says.
Not any longer.
Chinsinsi is back on treatment after Golomoti Active Youth Support Organisation and Dedza District Social Welfare Office weighed in.
Chinsisi smiles again
In 2019, child protection workers relocated the neglected adolescent girl to her grandmother’s home and helped her resume antiretroviral treatment (ART). Unicef, with support from USAid through the US President’s Emergency Plan for Aids Relief (Pepfar), has empowered Child Protection Workers to improve screening and referral of HIV positive children.
“I am glad my HIV treatment records were transferred from the hospital to the local health centre. I walk just about two kilometers to replenish ARVs. The health workers no longer send me back. They counsel me and attend to my needs caringly,” she says.
Chinsinsi thanks her grandmother for giving her a “safe home” and support.
“Now, I live happily and take the drugs consistently without suffering discriminatory treatment,” she says.
And the granny says nothing excites her more than her granddaughter’s renewed smile.
“I welcomed Chinsisi the same way I would have received my deceased daughter—her mother. I want to make her happy, always. I’m glad she received swift support to resume treatment. The child protection workers come every fortnight to assess her needs and counsel her when she needs it,” says the woman, aged over 65.
Chinsisi’s access to treatment, care and support is a result of an improved case management system to safeguard rights of vulnerable children and assist survivors of violence.
Putting child first
Unicef and its partners are supporting government to respond swiftly to the needs of vulnerable and victimized children. The case management system links vulnerable children like Chinsinsi with relevant services providers after assessing their needs.
“We thank Unicef for giving us financial support, training and guidebooks which is helping our staff to understand child protection tools, especially how to identify, review and manage child rights cases. This has greatly improved the way communities protect children,” explains Helen Mafuleka-Simwaka, district social welfare officer in Dedza.
The government official is delighted that most cases of child abuse and neglect are handled at community level. This allows tricky cases, including defilement, to be handled by roundtable conferences comprising child protection officers, police, health workers, civil society, magistrates and other key stakeholders.
Mafuleka-Simwaka states: “The way Chinsinsi’s case was handled shows the power of community involvement in case management. Her situation is shocking because the mistreatment that affected her health was being perpetrated by a family member who was supposed to support her.
“If a child has no parents, she is already missing love and care. As a child with HIV, she does not understand how she got infected and how to live positively. Besides she has a disability which forced her to drop out of school in Standard Five. I am happy the grandparents accepted to take her in. My department encourages orphaned children to live with relatives, not in institutional homes.”
Jessie Kazembe, child protection officer at Unicef Malawi, says all children have a right to live in an environment where their health, well-being, education and growth is guaranteed.
“Ensuring adherence to treatment is critical to the success of antiretroviral therapy. We commend the family that has been supportive to Chinsinsi. Child protection workers’ contribution cannot be ignored as they provided support in ensuring the girl accessed the drugs and connected her with her grandmother who is taking care of her right now. That is the success of case management,” she says.
Since 2012, Unicef supports Dedza and nine other districts to tackle child rights cases without delay. “We want cases to be resolved at community level within three months. If not, they must be referred to relevant authorities or case conferences where key stakeholders meet to collectively discuss complex cases and find ways to resolve them,” adds Kazembe.
Montfort Kafatiya is one of the 27 child protection officers deployed by Dedza district social welfare office in Dedza.
For this social worker, who handled Chinsinsi’s complaint, strengthening the community-based case management approach means fewer and fewer cases being concealed.
“Many violations of children’s rights go unreported because in some cases their caregivers or people they trust are the perpetuators of the violence. These cases are now coming out and we are dealing with them quickly,” he says.
Kafatiya gave flashbacks of his encounters with Chinsinsi.
He says: “When we went to resolve her complaint, her sister spoke in tongues, telling God: ‘The enemies are here, protect my house.’ She told us that a witchdoctor had instructed her to demolish the house to drive out an evil spirit. “She refused to take ‘a witch’ back into her home, so we are glad that the grandmother accepted and supported Chinsinsi to restart treatment. We also linked her with the head teacher at her school, but the physical disability forced her to quit school shortly after enrolling.”
Lawrence Khonyongwa, executive director for Malawi Network of People Living With HIV (Manet+), warns against stereotypes that subject children to stigma and discrimination, with some quitting treatment.
“The common belief that children with HIV are witches or wizards must be discouraged at all costs. It is faulty. HIV is just an infection like any other. Like malaria, anyone can catch HIV, regardless of age or sex. So we need to protect the children to live longer instead of calling them dehumanising names. Moreover, it is an offence to accuse anyone of witchcraft.”
A ray of hope
Going forward, Kafataiya is confident that the support Chinsinsi has received will help her live longer.
“She looks healthier and happier than was the case during our first meeting,” he says.
And Chinsinsi is already defying the odds stacked against her.
“HIV or a disability cannot weigh me down. Just last year, I was lonely, sickly and frail, but now I am getting better. I play with my peers. I carry a bucketful of water from a communal borehole. I wash my clothes. I help my granny tend to our maize field. Many people never imagined I would be this strong,” she says.