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Editor Kasangaki sensitises  community members about HIV in Kibimba Cell, Fort Portal City. PHOTOS/ALEX ASHABA


Kasangaki on frontline to curb HIV spread

What you need to know:

Against all odds. Editor  Kasangaki was raped and she contracted HIV at the age of 10. This did not put her down but rather gave her reason to move on and help others. At the peak of Covid-19 during the lockdown, Kasangaki was occupied with doing door to door deliveries of ARVs to ensure that patients continue taking their medication, writes Alex Ashaba

I first met Editor Kasangaki on September 6, 2018 while she addressed members of Tooro Kingdom Orukurato. Kasangaki had gone to sensitise them about fighting HIV/Aids.
Silence engulfed the council hall when Kasangaki disclosed how she contracted the virus in 1998. She was only 10 years old.
 “One evening I was from school and my mother asked me to return our goats  from a nearby farm. While there, a man in army fatigue approached me looking like he had come to help. He instead grabbed me and raped me,” Kasangaki recalls, adding that being a young girl from a family characterised by domestic violence she feared to disclose it to her parents.
Because of pain in her private parts, she spent five days at home until she opened up to her mother. 

“My mother took me to a nearby clinic for treatment. I requested them not to test me for HIV/Aids because my mother lived in fear of being divorced. This time, if my results turned out positive the worst would happen,” she says.
However, when she started losing weight and constantly fell sick while in Senior Two at Kabarole Hill Side School. The administration advised her to seek treatment at Fort Portal Regional Referral Hospital. Kasangaki never wanted her friends to know her status.

“After testing positive, doctors enrolled me on treatment but a few days later I abandoned the drugs and dropped out of school because of the stigma, I felt like I would die soon,” she says.
Some members of the audience shed tears, others murmured as they shook their heads.Council members agreed to always give her a platform at every function to keep sensitising people. Kasangaki has since been commended by the Kingdom Prime Minister  Bernard Tungwako saying they partner with her and make a work plan on sensitisation. 

Desperate  times
She got married but never disclosed her status. During her first pregnancy, while doing antenatal care visits she was advised to give birth in a health facility. She had two children and, her husband asked that they go for an HIV test. She obliged and they disclosed her status. They divorced. With her two children, they slept on Fort Portal streets.
“One day an Asian man in Fort Portal offered to take me in as a house help for three years without pay but he was paying school fees for my children,” she recalls. 

The engaged audience whispered among themselves and nodded.
“In 2010, the Asian lobbied for me to cook food for road construction workers on Fort Portal-Bundibugyo road. I earned Shs180,000 per month and he later got her another job in at a hotel in Nakasero where she was paid Shs 360,000.
With her savings, Kasangaki bought a plot of land at Shs 900,000 in Ruboona, the current Bunyangabu District and later sold it to buy another in Muhooti where she lives now.  In 2011, she joined Mitandi Secondary School in Kabarole District. A year later, she enrolled in Senior Four for adult education on evening programme at Fort Portal Secondary School. Kasangaki scored aggregate 48.

Standing up to fight HIV
 The 32-year-old says she has had her fair share of suffering and never wants to see any other person go through the same. Also, Kasangaki noticed many people shunning their medication increase.
She says disclosing her status to the public became a turning point in her journey to fight the spread of HIV because many people got to know her. It has become her routine especially to reach out to those who have absconded from taking their medicines.
In 2013, she mobilised 13 peers and formed Kabarole Unique Starts Association (KUSA) a community-based organisation. This is a group of people living with HIV/Aids which sensitises people on how they can stop new infections using different preventative measures. Their membership has grown to 674 members.

Editor  Kasangaki

“I am the spokesperson, always ready to fight stigma among people living with HIV/Aids. We go to villages and reach out to, especially young mothers who are HIV positive and encourage them to visit health facilities,” she says.
With George William Akora, they founded YAWE girls of hope, an association of young single mothers living with HIV and they boast 64 members. They encourage HIV positive expectant mothers to go for antenatal and ensure they give birth at health facilities. The members these mothers to disclose their HIV status to their husbands.
Kasangaki sits at the foundation thrice a week where she meets her peers for psychosocial support. She also does home visits to check on people and monitor their uptake of ARVs.

Akora describes Kasangaki as an advocate and voice of many living with HIV/Aids. For those who fear to pick drugs at health facilities, she does door to door delivery of medicines.
 “I receive calls from the community reporting family members who have given up on their medication and, I dash to their home and counsel them,” she says.
Topista Kabagenyi, a resident of Kibimba Cell, says Kasangaki’s commitment is unmatched.
“My son had stopped taking his medication for two years but Kasangaki came home, counselled and put him back on medication. He had improved but because he had lived in denial he passed on,” she says.

Kasangaki attained a certificate in HIV guidance and counselling and has also been volunteering at Muhooti Barracks health facility in Fort Portal City. At the facility she counsels people who come to pick their ARVs and follows up on them at home to ascertain on how they are taking drugs.  At the peak of Covid-19, Kasangaki did door to door delivery of ARVs because most of her peers did not have means of transport to the health facilities. She also visited radio stations to carry the message of hope for those living with HIV.
“During the lockdown my colleagues asked me to lobby for food from the district Covid-19 taskforce and I gladly got it,” Kasangaki says.

Kasangaki, second left next to King Oyo of Tooro Kingdom pose for photo after sensitisation meeting in 2018 in Muchwa, Fort Portal. Photo/ALEX ASHABA

 She had initially wanted to give up her at the start because of the stigmatization in the co, people talked much about me that I will die soon, I lost courage but after two years the talk in the community reduced, those who were discriminating against me, they started seeking advice and knowledge from me,” she says.  “It is not easy to convince someone to take drugs, but I have been lucky to convince a number of them. However, I have to walk more than 20 kilometres to trace most of these patients. That is why the government should support us as activists,” Kasangaki explains.
The 32-year-old, says sometimes when she walks past a group of people, they say “there goes a woman with [HIV] /Aids!” adding that others fear to disclose their status to her and some undermine her during counselling as they ask, “how can a sick person be in place to counsel us?” 

She has not backed down. It is against this background that Kasangaki appeals to higher authorities.
“Government should recognise us because we do a lot of work, we would like to have some personal protective gear and transport means,” she  concludes.

Did you know?
HIV/AIDs in Kabarole
The newly released report by Uganda Aids Commission, 2020 has ranked Kabarole district in Western Uganda as the second district after Kalangala with the highest HIV/AIDs prevalence rate standing at 14.6 percent.
The Kabarole district HIV/AIDs focal person Catherine Kemigabo said by November, the district had a total 27,368 people living with HIV/AIDs who are in care of which 2,922 are youth between 10-24 years.
The data for the new HIV/Aids infections in Kabarole district for the month of July to September 2021 shows that 314 people with HIV/Aids were registered.