Nairobi — HIV/Aids burst into global awareness in the early 1980s and has become forever associated with Africa, where it took its heaviest tolls. Judy Wanja tracks the disease's progress through Kenya and the broken lives left in its tracks.
The first case of AIDS identified in Kenya came in 1984. In the US, doctors had noticed odd cases of healthy men developing various types of pneumonia and cancer more typical of people with compromised immune systems. When more and more cases arose and it became clear that it was most prevalent in gay men, health officials realised that pneumonia and cancer were secondary diseases caused by something else, something new. By 1984, the international scientific community had identified this disease and called it AIDS - Acquired Immune Deficiency Syndrome. They knew that it could be transmitted sexually, from blood transfusions, from sharing needles and from mother to child. They knew it was caused by a retrovirus and were on the cusp of identifying which one. What they did not know was how to cure it.
In Kenya, we watched from afar. No one knew where this disease was coming from and there was no indication, no foreshadowing that it would soon be causing unimaginable devastation not only here but throughout Sub-Saharan Africa.
Doctors then linked the case of one commercial sex worker in Mombasa to this new and darkly mysterious disease. Her cheeks were hollow pits and her eyes were sunk deep into their sockets, a face seemingly collapsing into despair. Her hair had thinned and fallen out, leaving behind a patchwork of bald scalp and wispy clumps. But most striking of all, her body had wasted away. What had once been womanly curves was a hollowed out shell, leathery skin stretched over an ever weakening frame.
The skeletal appearance of this first case and those that followed gave the disease its blatantly descriptive African nickname, ‘slim'. Within two years her sister sex workers in Nairobi would have an infection prevalence rate of 81 percent and over the following three decades her death would be replicated on epidemic levels as Kenya and the world tried to come to grips with this terrible new sickness.
“We have two types of HIV viruses, HIV 1 and HIV 2, and these are further subdivided into multiple categories. But in HIV 1 we have Group M which is the most common strain that is responsible for 90 percent of infections around the world,” says Dr. Muthiora, who's been practicing medicine for 31 years and has witnessed the disease's progress in Kenya first hand.
While the origins of HIV/AIDS have been shrouded in mystery since its discovery, there are things that we now know for certain. HIV viruses come from Simian Immunodeficiency Viruses (SIV), and each transmission from a primate to a human is considered a new group. Due to intense similarities between the viruses, scientists have proven that HIV 2 was transmitted from sooty mangabey monkeys and HIV 1 was transmitted - in all but one group, which involved gorillas - from chimpanzees in Cameroon.
These findings answered a lot of questions, but they also raised some incredibly important ones. How did the virus jump from apes to humans? Why did the virus only suddenly appear in the late 20th century? How has the virus become a pandemic, considering that SIV viruses typically are not able to seriously affect people and are rarely passed from person to person?
Retro-testing samples has provided some interesting clues into the evolution of HIV. The first sample that tested positively for HIV/AIDS was taken in 1959 from a man living in the Democratic Republic of the Congo, so it is known that the virus was in existence at that point. Estimates for when exactly the transfer occurred vary over half a century. Some believe that the virus was first transferred, through bush meat hunting, to the humans in the Cameroonian forests between the late 19th and early 20thcenturies. From there, a variety of theories try to explain why the virus was able to adapt and spread within the human population. It most likely developed in Kinshasa, today the capital of the Democratic Republic of the Congo and then a colonial metropolis. Poor injection hygiene when administering vaccines and treatments for various diseases is one potential cause. Another is the development of a high incidence of genital ulcer diseases (GUDs), which include syphilis, chancroid and genital herpes.
Because GUDs involve open sores and an already-active immune system, they make it significantly easier for HIV to spread. The city, with its large migrant population and a lower proportion of men to women, served as a perfect place for the virus to be transmitted rapidly.
An alternative theory is that the virus was not directly transferred from ape to human, but rather through an oral polio vaccine that was developed using chimpanzee liver tissue. As it was a live vaccine, the polio virus had to be active when administered to patients. So if the chimpanzee tissue used to cultivate the vaccine had also been infected with SIV, the virus could have been easily and unknowingly spread by physicians. However, the number of chimpanzees used to develop the vaccine and the incredibly small percentage of captive chimpanzees infected with SIV have cast serious doubt upon this theory.
From these early stages, HIV began to spread and made its way into Kenya, most likely in the late 1970s or early 1980s through the area surrounding Lake Victoria.
The Beginning of an Epidemic
Just as global analyses of samples from the breakout of HIV have provided important information about the initial spread of the virus, retrospective studies of Kenyan samples reveal how quickly the disease established itself here. In Nairobi, a second look at men with the venereal disease chancroid showed that none of the 110 samples from 1981 were positive for HIV. Just one year later 15 percent of the 107 samples were. For Nairobi female sex workers, 4 percent tested positive in 1981 before the number skyrocketed to 61 percent in 1985. The disease had began to take hold.
“In 1984 and the years after there was a lot of mystery surrounding HIV/AIDS, because it wasn't understood what this disease was about,” says Professor Getui, Chairperson of National AIDS Control Council (NACC).
However, from urban areas, HIV spread through transactional sex between truck drivers and commercial sex workers. The women took the virus back to their villages while the truck drivers spread it to partners along their way to their various destinations across East Africa. All the while, cases of AIDS were increasing with an ever-growing momentum.
Compounding the spread, scientists were only able to isolate the HIV virus in AIDS patients in 1983 and it wasn't confirmed as the cause of AIDS until 1984, meaning that the blood test for HIV was not made internationally available until later that year.
While Kenya identified its first patient in 1984, authorities were reluctant to admit that the disease had made its way into the country. 1985 brought the identification of more cases, and, even without an official admission of the disease's presence from any country, Africa's connection with and prevalence of AIDS quickly caught the attention of international scientists and media. In October 1985, 11 ships from the US Navy arrived in Mombasa for shore leave. The 10,000 soldiers who disembarked attracted thousands of prostitutes, even from neighbouring countries, but to little avail. At the time, one of the sex workers told *The Daily Nation*, “Some of them whispered to us that they had been warned earlier of the disease in the country and that they should not attempt to do anything. I earned peanuts compared with other times these sailors visited our shores - and all because of those false foreign newspaper reports about AIDS.”
The idea that Americans would get AIDS from Africans was, at that time, almost offensive. The US was dealing with 15,000 cases and Kenya had identified less than 15. In fact, during that same naval docking, a Coast MP had even suggested that the American sailors be screened for the disease before disembarking. This back and forth would be exposed on a much larger scale the next month when experts began to insinuate that AIDS had originated in Africa.
The concept, needless to say, was not popular and set off tempers across the continent. It seems a massive over reaction in retrospect, but at the time the country most associated with the disease was, by far, the US.
Allegations of racism were thrown around with then President Daniel Arap Moi calling the attempt to tie AIDS to Africa “a new form of hate campaign.” Part of the vehemence on Kenya's part at being associated with the disease was that it would affect the country's flourishing tourism industry.
Little did Kenyans - government, health officials or the general public - realise that while AIDS had not become a full blown problem locally, HIV infections were already dramatically on the rise and would prove disastrous in the years to come. In December 1986, Kenya became the first African country to report cases of AIDS to the World Health Organisation (WHO), citing just 10, eight of whom had died. The next year cases rose to 109 and would continue to rise annually at an exponential level.
“When the cases rose to over 100, this prompted action from the government.
That is when the National AIDS and STIs Control Programme (NASCOP) was formed,” says Kevin Kiregu, a clinical officer at the Kenya Medical Research Institute (KEMRI).
However, the virus continued to spread throughout Kenya as, even with HIV testing that NASCOP provided, there was very little behavioural change.
A Silent Death
When her husband, Onyango, wasted away and died 17 years ago, Atieno had little choice but to marry her brother-in-law. She hadn't heard of AIDS and did not suspect that she could be HIV positive. But because of customs in the area, by which all of her husband's property would be retained by his family, including his wife, she had to marry his brother or be chased away from her home. Tero, or wife inheritance and polygamy, have been an accepted part of life in the region for centuries and are still enforced by older generations. “They were my in-laws and they were in charge,” Atieno explains. She gave birth to a baby boy with her new husband, but he unfortunately died at birth. In the ensuing inquiry into the tragedy she was finally tested for HIV. When her new husband found out that he was also positive, he walked out on her.
Until then Atieno had believed, as many people in her location assumed, that Onyango had been bewitched. Like many AIDS deaths, his was gruesome.
His skeletal appearance was nothing like the tall, burly man she had married. After finding out about her positive status, Atieno would not openly speak of it or what had led to the demise of Onyango. Like most Kenyans infected at the time she hid her illness out of shame and fear of public ostracism.
“We have inheritance of widows in the region and when the women are not inherited, they are chased from their homes,” says Pascaline Kang'ethe, the National Coordinator for Actionaid International Kenya. For this reason, AAIK has partnered with organisations like Women Fighting against AIDS in Kenya (WOFAK) in projects that support women and children who are living with or are affected by HIV/AIDS, working to give them a dignified life. It is a reality that is still highly prevalent today.
But while the spread of HIV/AIDS was terrible enough in the 1990s, the truly horrific development at this time was that the disease became taboo.
“No one talked about AIDS. This was a disease that was primarily found in sex workers so it was associated with prostitution and immorality,” Kiregu says. That mindset was transferred to the disease - no one admitted that they had it and when the victims died their families hid the cause. Many homesteads in Nyanza lie vacant with herds of cattle grazing on numerous unmarked graves of family members who've died of AIDS.
Helen Mandela, a widow and mother of four from Jera, Nyanza is a beneficiary of the WOFAK/Actionaid project. Mandela was the first person to be diagnosed with HIV in her town. “There are women in this place who have died of the virus, but they did not know what killed them.” When Mandela's husband died, her relatives accused her of having infected him with the virus and tried to chase her away. “They called me a prostitute who'd come with the disease from Nairobi.” But Mandela adamantly stayed on and got a seed fund of KSH 4,000, which she invested in a vegetable business.
Initially, no one bought groceries from her as the villagers believed that she'd infect them.
“Stigma and discrimination have been quite rampant...the HIV condition may not kill but stigma and discrimination could,” says Getui. But with time Mandela gained acceptance in her community. “Right now we eat together and even when I go to the market, my groceries are bought,” she adds with a smile. However, she's quick to point out that “When you see that someone has started showing signs of illness like malaria, do not say it is witchcraft. These days there is no witchcraft, go get yourself checked and you will be okay, just as I am.”
By 1994, 17 percent of Western Province had been infected by HIV but the government was yet to admit that the virus was spiralling out of control.
A National Response
Something needed to be done and fast, but Kenyan leaders still buried their heads in the sand. In 1995, an American team from the Centres for Disease Control (CDC) tested 1,835 samples from the Kenyan blood supply and found that 114 of them were HIV positive. Even worse, in one hospital 44 out of 121 samples had not even been tested. Former President Moi continued to deny the problem and maintained the course of downplaying the seriousness of AIDS in the country.
Religion has always played an important role in Kenyan society. In 1996, after the late Cardinal Maurice Otunga condemned the use of condoms and set fire to boxes of them and literature pamphlets advocating safe sex, Kenyans became reluctant to use prophylactics and the number of HIV victims continued to rise. Of the 28.4 million Kenyans living in Kenya in 1997, 1 million had already been infected with the virus. Medical facilities like the Kenyatta National Hospital were brimming with AIDS patients.
In 1998, prevalence in Nairobi rose by 81 percent. Interestingly enough, it declined among commercial sex workers despite there being little to no HIV prevention efforts at the time - a situation that remains one of the most mysterious aspects of the virus' spread in Kenya.
A 1999 study on social conceptions around AIDS discovered that people were generally well informed about the disease. However, while they knew the risks, there was an attitude of, ‘It won't happen to me.'
“No one really wanted to be tested because they feared the outcome and stigma associated with AIDS, even if getting tested didn't cost much,” adds Kiregu. At the time, tests were roughly KSH 50 to KSH 100, less than USD $1.
“Civil society organisations felt that the government wasn't doing enough and started demanding for more action against HIV, which had sprawled from a single case diagnosed in 1984 to prevalences as high as 30 percent in regions such as Western and Nyanza,” says Muthiora.
Finally, that same year, Moi declared AIDS a national epidemic and publically encouraged the use of condoms for the first time - 12 years after it had been discovered that they could prevent the sexual transmission of HIV.
“The threat of AIDS has reached alarming proportions and must not be treated casually; in today's world, condoms are a must,” he stated.
The president's declaration led to the formation of the National AIDS Control Council and a spirited fight against the disease, but by then prevalence throughout the country had peaked at 13.4 percent.
AIDS in the 21st Century
Was the acknowledgment of the epidemic too little, too late? Moi spoke out against AIDS but was continually reluctant to promote sex education. When President Kibaki came to power in 2002, more than 2.5 million Kenyans had been infected with HIV and 892,000 children had been orphaned. But the beginning of the 21st century would prove a turning point. NACC launched HIV/AIDS campaigns across the country at the grassroots level to sensitise the general public on how to fight the epidemic as well as live positively.
Numerous Trust Condom campaigns were run on television, radio and in newspapers - campaigns that would years later translate into the NimeChill campaign that promotes abstinence from sex, practice of safe sex and faithfulness to one partner. By the end of 2003, AIDS prevalence had dropped by 6.7 percent.
“Various sectors have participated in these [campaigns]. In the school curriculum, from the lower levels up to university we teach sex education.
HIV is an issue that is now talked about...we will not live in mystery and darkness like we once had,” says Getui.
Even though the drop coincided with the change in Kenyan sexual behaviour, a number of fringe groups still held on to alternative beliefs of curing HIV. Fortynine- year-old Naftal Opondi believed in the ‘virgin cleansing' cure.
“I contracted HIV in 1999, and when I confided in my older brother, he advised me to sleep with a virgin, which would cure me”.
Opondi slept with several girls from his village in Rongo but only ended up infecting them with the virus.
“I am not proud of this. No one in my home knew how HIV was spread as no one talked about it.”
But Muthiora insists that even though we have taboos that fuel the spread of HIV, one of the reasons why it is highly prevalent in Western Province is that traditionally, they don't practice circumcision.
Other bizarre misconceptions that Kenyans held on to? The virus is a curse from God; HIV only affects homosexuals and drug users; the virus is transmitted by mosquitoes; having sex with an animal will prevent or cure AIDS. With all the on-going campaigns, these fallacies could only be spawned out of ignorance.
“Culture continues to pose a big challenge. We are aware that one of the channels of transmission is through sex but we still have very many cultural taboos and practices that could promote HIV,” says Getui.
By December 2005 AIDS had comfortably settled in the country for 21 years and 1.3 million children had been orphaned by the virus, but campaigns were effective as AIDS prevalence in the country fell to 6.9 percent in 2006.
The Next Step
The battle against AIDS in Kenya may have had a shaky start at the beginning, but at the moment, through efforts by the government, civil society organisations and NGOs, the number of infections has reduced by 50 percent with AIDS-related mortality going down by 25 percent.
Back in the 80s, the focus was still on finding a cure or a vaccine, but the progress of the disease far outstripped the progress of science. In light of the growing casualties and prevalence rates, some scientists switched their focus to treating the virus objectively - that is, treating its effects rather than eliminating it. In 1996, anti-retroviral drugs (AVRs) were developed, giving hope to people with HIV. In the beginning the treatment involved enough prescriptions to start a pharmacy, but it has now been reduced to one daily pill for most patients.
“As of now, ARVs are available. We know that it is not a cure, but they are available to Kenyans. There's still a lot to be done so that all those who need ARVs have them, but the fact that they are available is a positive for our country,” says Getui.
Since 2011 access to treatment has grown and ARVs have become more affordable - when they first came out, treatment per patient was USD $10,000, but today that has dropped to USD $100.
“HIV patients on ARVs lead an almost normal life and currently, rarely do you hear of patients on treatment who've passed away as a result of the disease,” says Kiregu.
But Kenyans don't have access to all the latest treatments. In the West, for instance, there are four lines of ARVs, such that if a patient's body rejects the first two lines of treatment they can try the third or fourth.
However, the third and fourth lines have not been made readily available in Kenya.
“I think it is very sad that in Kenya we only have the first two lines of treatment. If your body rejects both of them, you die. The other two are too expensive,” says Mary Wandera, Director of Living Positive Kenya.
Of course the ultimate goal of the scientific community is a vaccine or a cure, and there have been significant developments towards that end as well. In 2009, Timothy Ray Brown, now commonly known as the Berlin Patient, was effectively cured of HIV. Brown, who also had leukaemia, was given a bone marrow transplant from a donor who had a natural mutation that made his immune system resistant to the virus. Once Brown's HIV infected marrow was replaced, his body was able to fight off the disease without the use of AVRs.
Then, in March 2013, news came that a baby who had tested positive at birth was functionally cured by early and extreme dosages of AVRs. After flooding her system with the treatment, there were still traces of the virus in her blood but they were negligible enough that she will lead a normal life.
Shortly after, came a study on adults who had received treatment soon after infection who also seemed to be healthy without ARVs.
Kenyan doctors are also in the race for a cure, and, with the Berlin patient as his inspiration, Dr. Barasa Sitati thinks he may have found one.
Sitati thinks he has been able to turn the Berlin patient's treatment - which was experimental, expensive and exclusive - into something that could be cheaply replicated around the world. Essentially, his technique works by purging the CD4 progenitor cells in the patient's bone marrow, which he believes serve as a reservoir for the virus. According to his theory, once the reservoir is cleared out the patients can stop taking ARVs and maintain negligible viral loads in their system.
“We have been running this procedure since last year and have had 36 patients so far, four of whom have attained functional cure from the HIV virus.” What's more, the patients only pay for their lab work. “This has proven to be a cheaper treatment,” assures Sitati.
These developments mark a greater understanding of the virus and how we can move from managing it to defeating it.
“We will have a breakthrough just like in most diseases that came before AIDS,” assures Kiregu. Muthiora shares his enthusiasm, saying, “It's a fight being fought all over the world. Over the years patients have learned to eat well, stick to medication and keep appointments with doctors, and research to a cure is being carried out day and night.”
However the optimism, at least in Kenya, must be tempered. While people with HIV can live a long life, it is not usually a normal life in light of the societal taboo that still surrounds the disease. It is seen as something dirty, yet alongside prostitutes and drug users there are housewives whose husbands have cheated on them and children who have been infected by a misguided mother. Since its discovery in 1984, more than 1.5 million Kenyans have died of AIDS.
Currently, there are 1.6 million Kenyans living with the virus and 1.2 million children who've been orphaned by AIDS. While HIV/AIDS will not be defeated for many years - possibly never - proper management in Kenya now relies on an acceptance of the disease. It is a part of life here, but realising that is not surrendering to it - it gives us more power to prevent its spread and limit its effects.