Why Kenya’s HIV patients feel noose tightening

Patricia Asero is living with HIV. She says she is yet to receive her six-month supply of life-saving antiretroviral drugs (ARVs), as was the case with HIV patients before.

Ms Asero, who is also chairperson of the National Empowerment Network for People Living with HIV, is now living in fear, as are other Kenyans who are HIV-positive.

Her fears mirror those of many other Kenyans living with the virus, and who feel that their plight has been shelved in favour of another health crisis: the Covid-19 pandemic.

They accuse the government of focusing on the coronavirus and leaving them more exposed to several diseases, including Covid-19 itself.

Their fears persist despite the government’s assurance, through the National AIDS and STIs Control Programme (Nascop), that over 1.8 million packs of ARVs had recently been distributed across the country.

Ms Asero, for instance, says she is uncertain that she will get her next supply of ARVs at her local healthcare centre in Homa Bay County.

“If it is true that the drugs have been distributed, why did they not call us while flagging off the drugs to the country? If that were true, then I would be having my ARV supplies for six months. In Homa Bay, they are giving supplies for only two weeks,” she said, adding that her community feels neglected by the government.

Minors living with HIV

The situation is even worse for students in boarding schools who have to keep seeking permission to get their ARVs every now and then. The situation has forced some learners to disclose their status, and they live in anxiety and their self-esteem has been dented, Ms Asero explained.

“Many children living with HIV are suffering. It is even worse for children in boarding schools whose parents keep calling me asking that I do something so that their children get at least three months’ supply of ARVs and finish their school terms without worries,” she said.

“This is a very dangerous thing to do. HIV is not a light disease where one can determine when to or not to take their drugs. The government is playing with our lives.”

Moreover, Kaletra, a crucial reagent used when testing for HIV in children, is also unavailable in some parts of Kenya.

Ms Asero said efforts to seek answers from several government offices, including the Differentiated Service Delivery unit under the Ministry of Health, which ensures those infected receive supplies of between three and six months, have been futile. 

Margaret Wendo, 23, was born with HIV. She knows what it means to be a student living with HIV in a Kenyan secondary school. She had managed to keep her status private until her yellow card, which indicates the dates of your next appointments with your doctor, amount of drugs you should be given and tests that should be done to analyse the viral load and CD4 levels, was exposed.

She said most classmates stopped talking to her and her desk mate moved. The stigmatisation that came from unplanned disclosure of her health status affected her to the extent that she stopped taking ARVs for three and a half years. Her viral load, previously at zero, shot up to over one million.

Now a peer counsellor who helps HIV-positive youths, she understands students’ fear of stigmatisation should they have to keep asking for permission to go check if their ARVs have arrived. Most shy from having their drugs delivered by parcel as they may land in the wrong hands.

“There is nothing as bad as having insufficient supplies while in school and having to move around with your yellow card because you will need to use it frequently. I cannot fathom the anguish of students who barely have enough drugs,” she said.

“Many of the people I counsel confide that they are embarrassed because they have to keep lying and making up excuses so that no one knows they are HIV-positive when they have to make trips to hospital…Stigma is real and it is worse among teenagers.”

Costs

People living with HIV also have to contend with higher transport costs as they make more trips to and from clinics.

“It is very unfair that we have to keep going into crowds in this pandemic where we interact with many people and risk getting infected with Covid-19. Nothing could be worse,” Ms Asero said.

“HIV in itself is stigmatised enough, then imagine contracting Covid-19 while searching for ARVs. You are completely avoided. We need these drugs!” 

Her concerns come as a WHO report, based on clinical surveillance data from 37 countries, has confirmed that HIV infection is a significant independent risk factor for both severe and critical Covid-19 illness.

“Overall, nearly a quarter (23.1 per cent) of all people living with HIV who were hospitalised with Covid-19 died. It found that the risk of developing severe or fatal Covid-19 was 30 per cent greater in people living with HIV compared to people without HIV infection,” says the report published on July 15.

Timothy Wafula, a lawyer at the Kenya Legal and Ethical Issues Network on HIV and Aids (Kelin) has worked with HIV-positive people for several years. He described the ARV shortage as catastrophic, saying it endangers the lives of millions of people now living with the virus.

“Health is a right stipulated in the Constitution. When there are barriers hindering you from accessing quality and affordable healthcare, then your right to health is being violated,” he said. 

“In this case, it is the government that is charged with ensuring their medical needs are met and now that they cannot access ARVs, the government is failing them.”

He also called on the government to account for every shilling spent in the acquisition of ARVs and make public how they are distributed.

As of three weeks ago, Ritonavir, a drug used to increase the levels of HIV protease inhibitors and reduce the risk of virologic failure and HIV drug resistance, was out of stock in several hospitals and pharmacies across the country.

“I have just been informed that Ritonavir is out of stock when I went to my usual centre to check whether the ARVs have arrived. I have been told to buy for myself. I sent someone in Nairobi to go get them where it is always available (Coptic Hospital) and they have told me that it is also out of stock,” a source told Nation.Africa.

Government responds

Contacted for comment by Nation.Africa, Nascop, through its head of programme Catherine Ngugi, said the pandemic came with several challenges that affected ARV supplies to the country.

She also explained that most of Kenya’s ARVs come from India and that the Asian country was recently hit hard by Covid-19 thus delaying supplies. 
 
“Covid-19 came with so many things. We have been getting fewer supplies and thus had to share what we had. If you are six at home and you have five bananas, you have to share what you have,” she said.

Ms Ngugi also noted that ARVs donated by USAid, which had stalled at the port of Mombasa after the donors decided not to take the drugs to the scandal-ridden Kenya Medical Supplies Authority (Kemsa), had been cleared and distributed to counties.

She said Kenya is on its way out of the woods as the government has just distributed over 1.8 million packs of ARVs across Kenya.

“The clients should go to their county pharmacists’ offices and ask why they are not getting their supplies. From our end, we have done our job and distributed the drugs. What I know is that in two months’ time, all our clients will get stocks for up to 3 months,” she added.

Ms Asero, however, says she doubts Nascop’s assurances. She said patients had on many occasions been told that drugs were dispatched only to go to hospitals and clinics and find nothing there.

Nation.Africa also reached out to the US President’s Emergency Plan for Aids Relief (PEPFAR) to ascertain whether they had recently distributed ARVs across Kenya as Ms Asero had just been informed, but there had been no response by publication time.

“I cannot talk to the media about this issue. Let me direct you to someone else who can talk to you clearly,” said Kenneth Masamaro, the head of treatment at PEPFAR. But he did not get back to the reporter with the contacts of the person he was referring to.