At 29 years old Juliana Atieno has been on antiretroviral therapy (ART) for 10 years. The mother of two says she tested HIV-positive while in form three in high school in Nyanza, western Kenya in 2007, when she was 16 years old. But she only came to learn of her status in 2009.
“Throughout my childhood I was a sickly child. It was all suspected to be malaria, typhoid, and I received treatment for this. When I got to high school my health deteriorated even more. I was persistently coughing, had diarrhoea, headaches and I was in and out of the hospital all the time,” Juliana told the The Lancet HIV.
“While in form three the school nurse referred me to another hospital for a specialised check-up and tests. Several tests were conducted and results sent to school and not communicated to me.”
Juliana said that her mother was called to the school for the results. Her mother, after receiving the results, did not talk to her, but cried a lot. She then took her home. A few days later she was taken to another hospital in Nyanza where she was treated for tuberculosis.
“This helped with the cough, but I didn’t recover. I could not eat anything and I was getting thinner with time. My mum then started taking me round to churches for prayers and to the herbalists and nothing seemed to change”, she said.
A year later Juliana says her mother died of depression and she was left to live with her brother. Later her cousin whose husband had been sick for a long time too came over and took her to the hospital for testing.
“I was at the verge of giving up with life but then agreed to give it one last chance,” Juliana explained. Test results, she said, indicated that she was HIV-positive. This did not surprise her and all she wanted was to know if it could be cured. Juliana was counselled and immediately put on treatment. A few months later her health had improved even with the on-and-off challenges of the drugs’ side-effects.
According to Juliana, when she was 7 years old, her brother’s friend, who was their then neighbour, raped her and she suspects that’s when she was infected by HIV.
“He raped me in their house and when I tried to explain to my mother about it she didn’t want to listen but instead warned me never to go back there”, said Juliana.
“My main challenge has been the side-effects of the antiretrovirals every time they are changed because of the stock-outs at the hospital”
A year after she started her treatment she got married to a HIV-negative man and together they have two children who are HIV-negative.
Juliana now volunteers as a mentor and peer educator with the Women Fighting AIDS in Kenya (WOFAK) organisation, working with young and adolescent girls, at its Comprehensive Care Center in Makadara, Nairobi County, where she advises young girls on the importance of getting tested for HIV and adhering to medication after they are tested HIV-positive.
“My main challenge has been the side-effects of the antiretrovirals every time they are changed because of the stock-outs at the hospital”, she said adding that it is hard to adjust to alternative drugs given whenever there is a stock-out, but she cannot miss taking her medication.
At 20 years old Ann (who did not wish to be identified) from Kisumu will be taking medication daily for her entire life to ensure that her children will have a mother in their lives just as she did. The mother of a 4-year-old is HIV-positive and 3 months pregnant with her second baby.
“A few months ago, I started feeling tired, sickly, and was vomiting all the time. I went to the hospital and I was told I was pregnant”, Ann told The Lancet HIV.
“I was then advised to start my antenatal clinic immediately. But first I was to take some blood tests which I did. When the results came out a few hours later, I was informed that I was HIV-positive”, she said, almost shedding tears. “This was the last thing I was expected to hear.”
Ann said before she got married, she had visited a voluntary counselling and testing centre and had tested negative.
In 2018, when she met her husband, she trusted his word that he was also HIV-negative and so they did not go for testing and did not use protection.
“We all have been healthy and didn’t suspect that I could test HIV-positive”, she noted.
After the test results came, Ann had to undergo counselling for 2 weeks to prepare her for the treatment and on how to inform her partner.
“Although this seemed like torture to my life, I decided to accept and start my treatment. I have now been on medication for 3 months”, she said.
Her challenge has, however, been convincing her partner to go for HIV testing and to confirm whether he is safe or not. “When I informed him that I had tested positive, he didn’t seem to be shocked. He was also not bothered to find out, more like, ‘so what’ after the test results. Every time I ask him to go for testing he says he is not ready and is not willing to know his status.” said Ann.
She says she is afraid to push him because he can decide to break the marriage which means telling her parents about it.
“I have not told anyone else about my status and I plan to live with it the rest of my life.”
Ann had her first child at 16 years old, while still in school, but managed to go back and finish high school.
“I am not working, and I fear that if my husband leaves me I will have nowhere to go. For now, I leave it all to God”, she said.
Ann was initially taking ART at a medical centre in Nairobi. But after being given her first batch of antiretroviral drugs to take for 2 weeks, the next time she went back for more drugs they were out of stock. She was then referred to Makadara health centre and restarted her medication “I was then referred here, and this is where now I am taking my drugs”, she said.
She has since been enrolled into the WOFAK programme where other than getting drugs, she is counselled and encouraged by her peers on the importance of adherence and self-care.
Harriet Irusa, the medical officer in charge of the Comprehensive Care Center at Makadara health center says antiretrovirals at the health centre are free and are supplied by the Kenya Medical Supplies Agency (KEMSA). However because of supply-chain problems, there are erratic supplies at the health facility.
“We end up either referring our patients to the other health facilities or changing their drugs to give the alternatives”, said Irusa. “For the last 6 months for example we have had stock-out of the nevirapine syrup for the kids and so we have been giving them zidovudine as an alternative.”
The government issues the two drugs for prevention of mother-to-child transmission of HIV in public health facilities.
According to Irusa, although the rates of HIV new infections have gone down, the government needs to come up with better youth-friendly centres to encourage young people to come for HIV testing and treatment.
“These centres should be allowed to run for 24 hours to allow more youths to come in late in the evening”, she said, adding that the challenge of adherence is common with youths because they find no privacy in the health facilities when coming for their drugs.
According to the Kenya HIV estimates report 2018 Kenya has continued to see a sharp decline in HIV incidence among adults aged 15–49 from 0·35% in 2010 to 0·.19% in 2017 possibly due to the scale up of various prevention and treatment programmes.
“The cost of energy, services and finance is almost twice in Kenya compared to China or India. If these can be addressed, we’ll be in better position to compete since we are closer to the consumer than the others”
“While the number of adults aged 15 and above in need of ART was 627 900 in 2010, the number in need of ART was estimated at 1 338 200 in 2017. Even so, it is important to note that the guidelines have changed over time to currently ‘treat all’ irrespective of CD4 counts or percent” says the report.
An estimated 1·5 million HIV patients are receiving antiretroviral drugs at no cost from the government hospitals.
In May 2019, Universal Corporation Limited, a pharmaceutical manufacturer in Kenya, announced that it will start manufacturing a combination of nevirapine, lamivudine, and zidovudine, a move that is likely to bridge the on-and-off stock-outs of drugs in public-health facilities in the country.
According to Universal Corporation Limited Chief Executive Officer Perviz Dhanini they received a certification for manufacturing in November 2018 that will enable them to adhere to WHO standards of drugs manufacturing.
“We have so far received only one order of lamivudine from UNICEF”, Dhanini told The Lancet HIV, adding that the factory targets to produce up to 3 million tablets every week.
He said that it is still a challenge to get orders from the Global Fund, from which Kenya procures its antiretrovirals, because the US Presidential Emergency Fund for AIDS Relief that funds Global Fund prefers to source antiretrovirals from India as their cost is cheap.
The biggest challenge in the production he said is the local Kenyan policies as well as the policies countries like India and China have.
“In India and China, the companies that export get incentives between 4 – 13% of their sales value, plus they do not pay any duty on imports of raw material especially when it’s for export. While in Kenya we have to pay 3·5% duty on all imports and we do not get any incentive for exports”, said Dhanini.
“Also, the cost of energy, services and finance is almost twice in Kenya compared to China or India. If these can be addressed, we’ll be in better position to compete since we are closer to the consumer than the others.”
Fred Siyoi, Kenya’s Pharmacy and Poisons Board Chief Executive Officer said the local manufacture of antiretroviral drugs is a good move as it will enable them monitor closely the drugs produced and curb the issues of counterfeit drugs in the country.