In the heart of Kibera slums, we meet with Josephine* (not her real name) who is working with non-governmental organisations to highlight the impact of HIV interventions for people with disabilities.
A single mother and grandmother, Josephine started her ARV treatment in 2005 under the Pepfar programme. Luckily, she, her former husband and her child are virally suppressed and on treatment.
Her last child was born HIV-free due to the Prevention of Mother-to-Child Transmissions (PMTCT) programme. This requires mothers and their babies to receive antenatal services and HIV testing during pregnancy, have access to antiretroviral treatment (ART), practice safe childbirth and appropriate infant feeding.
Josephine currently works at an organisation for People with Disabilities (PWD) in Kenya and is a peer educator, facilitating support groups and conducting U=U treatment literacy (achieving and maintaining an undetectable viral load).
During an interview with The Standard, she narrates that she got married in 1998 at a tender age and moved to her husband's rural home. While there, her cousin fell ill in the city, so she asked her husband if she could come and take care of her.
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After traveling to the city, her cousin, who she says was suffering from Tuberculosis, was getting worse each day. It had been rumored that her cousin could be HIV positive.
As her friend and confidante, Josephine convinced her cousin to visit a nearby VCT clinic so that they could set the record straight.
“I remember it very well, I had Sh100 so I told her I would pay Sh50 for her and Sh50bob for me so that I could also undertake the test in a show of solidarity,” she says.
However, hell broke loose when the results came out. To her surprise, her cousin’s result turned out negative but hers was positive.
“At that moment, I was confused, it felt like a dream. I was normal and healthy. I did not exhibit any signs or symptoms, how could I then be HIV positive?” she narrates.
Although the clinic offered to counsel her, Josephine said all she was told on that day fell on deaf ears as she was not in her right mind.
“It was a Thursday, a day that people living with HIV had a therapy session at the facility so I bumped into one of the ladies as I walked out of the counselor’s office. She saw my frustration and pulled me aside. She told me that she and other five women had the virus and were on medication,” she narrated.
“That lady told me that for a year, she and her friends had been drinking urine and it had worked magic for them in suppressing the virus. She advised me to be drinking one cup of early-morning urine and another cup of late-night urine,” she said.
This is how Josephine embarked on a three-year journey of drinking two cups of urine a day hoping that her HIV status would change. Unfortunately, this made things worse for her.
By the time she knew of her HIV status, she was already four years into her marriage with her firstborn child.
Before she got pregnant, together with her then-husband visited a VCT clinic for HIV tests. They were separately given their results as the said husband did not let the clinical officers know that they were a couple for fear that he would be apprehended for marrying a minor.
Then, her tests were negative and so she fully gave herself to her husband knowing that all was well.
Her husband, however, told her that his results had some issues and the clinicians had told him he had contracted Sexually Transmitted Infections (STIs).
Being naive and at a tender age, Josephine did not take it as a big deal as her husband told her not to worry because he had been given medication.
After two years of unprotected sex, Josephine had contracted the virus and, unfortunately, she passed them to her child at birth. By the time she took the test, she had advanced in breastfeeding the baby.
In 2003, Josephine sat with her husband and explained what was happening in her life and the whole experience of drinking urine.
“Confidently, he told me there was no way I would get infected with HIV at such a tender age. He convinced me that HIV was for the elderly, and it was a bad omen in their culture for minors like me to contract the disease,” she said.
“My mind was blocked by the love I had for him so I somehow believed what he said and decided to move on. All this while we were still having unprotected sex not knowing that I was putting my health at more risk,” said Josephine.
Then in 2005, her life started heading south. She suddenly fell ill. She was admitted at a local hospital where she underwent several tests.
Upon inquiry by her in-laws, the doctors indicated that she had been infected by typhoid and amoeba. She was put on medication.
This, she said, interfered with her normal sipping a warm cup of ‘herbal’ pee as she was under close observation by her in-laws.
The typhoid and amoeba being opportunist infections saw her bedridden for several weeks as her immune had been totally compromised.
She traveled to Nairobi to stay with her husband so that he would take care of her. Since her husband was not employed and was depending on daily hustles to make ends meet, Josephine had to be moved to her sister-in-law's house.
It is from here that she started opening up about her health status after she also found out that her sister-in-law was HIV positive.
“I was still in self-denial, but she opened up to me about her status. She encouraged me to do other tests and overcome my fears. She took me to Mbagathi District Hospital where doctors confirmed that I was positive and my viral load was high. The doctors immediately put me on medication and that is how I began my journey,” she said.
According to Josephine, many things were happening at the same time. In the same year, she was in her second pregnancy and became partly paralysed in her lower limbs after several days of being bedridden.
In 2006, she gave birth to a 4.5kg baby but he unfortunately passed on due to prolonged labour.
She says by then, her immune was too low as her husband insisted on unprotected sex despite knowing the risks.
After several visits at Mbagathi, Josephine was put on ARVs but her husband refused and was advised to use Septrin.
“It wasn’t easy; every day became even more confusing. I was then linked to therapy groups under the National Empowerment Network of People living with HIV/AIDS in Kenya (Nephak). This is a national network that unites people living with HIV and those affected by TB and HIV/AIDS through post-test clubs, support groups, community-based organizations, non-governmental organizations and networks,” she says.
Nephak linked her with the Kibera Community Self-help Programme Kenya (Kicoshep) where she was sensitised and supported with food baskets.
Her ex-husband became anxious with the amount of help she had received. After consultation, he joined the network on condition that he would start the ARV treatment.
By 2010, Josephine and her husband had achieved tremendous results. They had been enrolled in several treatment literacy programmes and both qualified as TOTs.
As a couple, they happily got transferred to the Kibera health centre where they would both collect their medication and remind each other of doctor’s appointments.
Her husband excelled in the training programmes and he was elevated to be a peer educator at Mbagathi Hospital, while Josephine remained to volunteer as a community health worker.
“It was such a journey full of ups and downs but I am happy for this far I have come. By the time I separated from my husband in 2019, we had both suppressed the virus. I wish him all the best wherever he is,” said Josephine.
Josephine says in 2010, something strange happened. She was seated with family and friends in a room and then suddenly darkness fell.
“I started asking why they had switched off the lights. Jokingly they told me that the room was well lit and there was no need for more light. On persisting, they realised all was not well. I was taken to a hospital and after several tests, the doctors broke the sad news that due to the viral load, I had contracted an infection that attacked my eye system. This meant that I would remain blind for the rest of my life,” she said.
This added more pain to my life. How do I live with blindness and HIV, who would take care of me? she posed.
Having been born with normal eyesight, Josephine confesses that accepting what was befalling on her life was no easy task. She wished the earth would open and swallow her alive.
“For now I am at peace with myself because I have accepted who and how I am. I depend on my God who takes care of my worries but sometimes I depend on well-wishers to take care and guide me. My daughter has been there for me even though my life is an expensive affair because I am living a double life of disability and HIV,” she said.
Josephine says the Ministry of Health with all its partners has been of great help not only to her but to many people living with HIV especially those with disabilities.
She said HIV-related stigma towards people with disabilities is still high and all stakeholders should come on board and create more awareness to the members of the public.
“I want people to understand that PWDs especially women have rights just as anyone else. We deserve some respect, we deserve to be loved because we are humans with feelings,” she said.
She says although she is lucky to be getting a small stipend that takes care of her needs as a PWD, there are still others who are in dire need that need to be reached out to.
“For now, I am proud that I am living positively without the fear of attacks from opportunistic diseases. I urge my fellow PWDs to adhere and take medication at the right time. Every time you are told your viral load is high, then it is a red flag but if we stay committed to the course, we can bring the viral load to zero by 2030,” she noted.