To beat Aids, we must show compassion for the infected

Agnes Nyambura and her husband Peter Waweru, a discordant couple, at their home in Banana, Kiambu County. PHOTO | ERIC WAINIANA

What you need to know:

  • “HIV is not a killer disease like previous campaigns sought to portray it. On the contrary, it’s manageable and not painful like cancers and other ailments but the reason people die is because they are in denial due to stigma, so they end up not taking  drugs,” she says.
  • Mr Waweru believes that the anti-HIV campaigns that have been going on cannot achieve much, saying that, instead of focusing on zero infections and eliminating the stigma that was created by campaigns in the past,  the focus has been on collecting statistics of the victims. 
  • The isolated VCT and ARV services discourage many people from taking the test, while patients feel isolated and exposed, which makes them reluctant to go for ARV drugs.

Agnes Nyambura left the clinic in a daze. A prenatal check up had just revealed that she was HIV positive. Yet she had been married for less than a year and was two months pregnant.

“I wished the ground would open up and swallow me,” she says of the life-changing discovery in June 2006.“The news came as a real shock. I didn’t know what to do because I couldn’t figure out where I had contracted it [HIV] from since I had been faithful to by husband,” she says.

Confused, Ms Nyambura returned to her home in Karuru Village in Banana, Kiambu County, but could not gather the courage to tell her husband. Then, while cleaning her house a few days later, she found some medicine hidden under the carpet. She had already been put on antiretroviral (ARV) drugs at the clinic, so she knew exactly what they were for. And since only she and her husband were living in the house at the time, she was sure they were his, so she decided to confront him.

“He did not deny it and even admitted that he had been on ARVs for a while but was afraid to tell me because he feared losing me,” she explains. “That really broke my heart because I knew that having the virus would subject me to public disdain and eventually wipe out my entire family. I contemplated suicide several times because I wasn’t prepared to undergo what I had seen people going through.”

As days went by, she and her husband started losing weight and were soon the subject of gossip among their neighbours. Though it was difficult, Ms Nyambura, who had grown to hate her husband, decided to follow the doctors’ advice and continue taking her medication as she awaited her fate.

“Though we were still living under the same roof, we were not on speaking terms. In fact, we had separate bedrooms but couldn’t file for divorce since we didn’t not know what reasons we would give for the break-up,” she adds. 

TAKING CHARGE

In the meantime, she continued attending her prenatal clinics, where the nurses consistently assured her that being HIV positive was not a death sentence, and that if she heeded their advice, she could even give birth to an HIV-negative child. But it sounded too good to be true.

About five months later, during one of her visits to the clinic, she met a counsellor who had lived with the virus for 13 years, which convinced her that, indeed, all was not lost. That gave her the courage to approach her husband: “If you were afraid of telling me the truth because you thought you would lose me, now I am here and we can start all over again. And if we accept our condition and follow the doctors’ advice, we will both live long.” 

In January 2007, the couple had an HIV-free baby. Ms Nyambura did not breastfeed him to avoid the risk of infecting him. In addition, the baby was put on medication for a year to prevent mother-to-child transmission and subjected to regular testing until it was ascertained that he did not have the virus.

But while Ms Nyambura had accepted her condition and moved on, her husband couldn’t and resorted to heavy drinking. He died of HIV/Aids-related complications in 2008.

Though Ms Nyambura had accepted her situation, her husband’s death dealt her a severe emotional blow.

“My friends and in-laws started rejecting me and made me the talk of the town. I had a small business from which I earned a living but with all the gossip, my customers fled and I had to close it down. To survive, I sought casual jobs far from home where nobody knew me,” she says.

Not even her church was willing to offer her a shoulder to lean on, so after some time, she stopped going there.

Alone and dejected, Ms Nyambura found solace in her son, the health workers at the clinic and a few people living with the virus whom she met there.

Then, after a lot of soul searching, she decided to take the bull by the horns. “First, I had accepted my status, only that people had made it a topic of discussion. So I decided to talk about it myself, which helped end the gossip because apart from backbiting me, there was nothing else my neighbours could do. I also prioritised my health and left the rest to God,” she says.

That silenced her neighbours, especially after she started talking to people about HIV with a view to reducing the stigma associated with it. She even received invitations to different fora and churches to talk about HIV/Aids.

Her health improved dramatically, such that people found it hard to believe she was HIV-positive; some even doubted her. Men started making sexual advances at her but since she did not want to tell them she was HIV-positive, she would tell them to first undergo an HIV test, which put them off. But after a while, she decided it was best to tell those seeking a romantic relationship the truth.

Agnes Nyambura and her husband Peter Waweru, a discordant couple at their home in Banana, Kiambu County. PHOTO | ERIC WAINIANA

NEW BEGINNING

In 2009, she met Mr Peter Waweru, who treated her differently, although he was not aware of her status. After months of friendship, he made advances at her, but since Ms Nyambura did not want to reject him to his face, she sent him a text message.

“I told him that whatever he was talking about was good, but my status would not allow me to let him into my life because I had vowed never to infect anyone with the virus,” she recalls.

But Mr Waweru took it as a joke, arguing that, given society’s views on the condition, no HIV-positive person would genuinely reveal their status.

To put him off, Ms Nyambura insisted that they both go for HIV testing, to which Mr Waweru agreed; the results showed that he was HIV negative.

Not one to give up, Waweru continued pursuing her despite discouragement by his family and friends. And blown away by his determination, Ms Nyambura, who saw real love and acceptance which she had been missing, gave in and they became part of the statistics of the estimated 260,000 discordant couples  — where only one partner is infected — in Kenya.

They both went for intensive counselling, during which they were assured that they could  live together, as long as they took certain precautions.

“To me, she had great potential and I did not let the differences in our status come between us. At first she was hesitant, but she eventually accepted my proposal,” says Mr Waweru, adding they started getting intimate, but with protection. After some months, the couple decided to have a child to prove their critics wrong but did not know how due to the risks associated with unprotected sex.

For reasons they cannot explain, they risked unprotected sex, which fulfilled their wish of having a child but left them both deeply worried.

Ms Nyambura feared that she might have infected Mr Waweru, who was also afraid that he might have contacted the virus. After some time, he began preparing himself psychologically for any eventuality.

Mr Waweru says it was probably because Ms Nyambura’s viral load had been suppressed by the medication that she had been taking consistently that he did not contract the virus.

However, he kept undergoing regular tests to clear any doubts, as did their baby, who had also been put on preventive medication. Thankfully, the results have been negative.

Ms Nyambura and Mr Waweru say very few people understand HIV/Aids, which leads to stigmatisation, adding that people with the virus deserve love.

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SPEAKING OUT

Agnes Nyambura and her husband, Peter Waweru work in their farm in Banana, Kiambu County. The couple also aims to reach out to those infected with HIV. PHOTO | ERIC WAINAINA

Networking to help reduce Aids stigma

Agnes Nyambura and Peter Waweru  have become household names in the Banana, thanks to their voluntary efforts  to empower  people living with Aids.

“I have lost count of the people we have found on their death beds, having given up in life. After talking to them, they gain confidence and looking at them today, we can hardly believe they are the same people,” Ms Nyambura says.

They have created a network within the community which ensures that anytime there is a patient who is about to give up, they are notified. Their activities include monitoring to ensure total adherence to medication as well as proper eating habits.

At the moment, they have a network of 300 people living with the virus in Banana and its environs, including about 100 children.

The patients encourage each other through peer support by sharing challenges, working them out and learning from, and encouraging, each other.

Ms Nyambura, whose viral load has reached a barely detectable level, says  they are sometimes andgive their food to people who are seriously sick,  or to live with them in their corrugated iron sheet-walled, earthen-floor house. Sometimes she hosts more than 10 people at ago, especially the youth.

“HIV is not a killer disease like previous campaigns sought to portray it. On the contrary, it’s manageable and not painful like cancers and other ailments but the reason people die is because they are in denial due to stigma, so they end up not taking  drugs,” she says.

The couple believes it is possible to run a campaign that is geared towards ensuring a virus-free society, which they believe can only be achieved if the world worked to ensure zero infections, which has been a challenge, especially among the youth.

Last year alone, the National Aids Control Council (NACC) director, Mr Nduku Kilonzo, released statistics showing that there were at least 35,000 new HIV infections among women aged 15-24 years.

“Today, an HIV-positive positive mother can give birth without transmitting the virus to her child or spouse. If we were to ensure that anyone living with the virus does not pass it to anybody, we would be guaranteed a virus-free generation,” she says.

Meanwhile, Mr Waweru believes that the anti-HIV campaigns that have been going on cannot achieve much, saying that, instead of focusing on zero infections and eliminating the stigma that was created by campaigns in the past,  the focus has been on collecting statistics of the victims. 

“There is a huge problem among the youth, who are transmitting the virus either intentionally out of anger or unknowingly. Some people lack the courage to visit a health centre for a test or to collect medicine because the stigma is still very much alive,” he says.

He adds that if the campaigns focused on ensuring all people voluntarily get tested and created an environment that ensured that all patients took their medication as prescribed, and above all that no one was transmitting the virus to others, it would be the beginning of having an HIV-free generation. 

Karuri County Assembly member Martin Njoroge agrees, saying that all isolated HIV/Aids standalone service centres should be abolished and the services integrated into mainstream health services. 

Mr Njoroge argues that the isolated VCT and ARV services discourage many people from taking the test, while patients feel isolated and exposed, which makes them reluctant to go for ARV drugs.

 In 2014, the MCA, who previously worked with HIV and Aids organisations, successfully moved a motion stating that the greatest stigma emanates from the discrimination that people living with HIV/Aids encounter in health institutions.

“One’s HIV status, or any other status, is a personal and confidential issue but when you line up people and put a banner above of them written ‘VCT’, you carelessly expose their status,” Mr Njoroge said.

He claims that more than 70 per cent of the people living with Aids in Kiambu seek treatment in Nairobi while others go  as far as Murang’a and Nyeri counties for treatment.