Finding Hope in Kenya: Growing Up With HIV

Naina Dhingra

Naina Dhingra is the Director of International Policy at Advocates for Youth and serves on the Developed Country NGO Board Delegation of the Global Fund.

The drive is one you don't forget: a terrible pot-holed road from town usually filled with bumper to bumper traffic. But the destination is well worth the price. Karen, a wealthy Nairobi suburb of mizungus (Swahili for "white people") is usually not a destination for those working in international development. Kangemi and Kibera, the slums of Nairobi, are more up our alley. But tucked away in Karen is an inspiring program called Nyumbani. Nyumbani, which means "home" in Swahili, is a home for HIV+ children who have been orphaned or abandoned.

Naina Dhingra is the Director of International Policy at Advocates for Youth and serves on the Developed Country NGO Board Delegation of the Global Fund.

The drive is one you don't forget: a terrible pot-holed road from town usually filled with bumper to bumper traffic. But the destination is well worth the price. Karen, a wealthy Nairobi suburb of mizungus (Swahili for "white people") is usually not a destination for those working in international development. Kangemi and Kibera, the slums of Nairobi, are more up our alley. But tucked away in Karen is an inspiring program called Nyumbani. Nyumbani, which means "home" in Swahili, is a home for HIV+ children who have been orphaned or abandoned.

Nyumbani was founded in 1992. At the time, the home was essentially a hospice for children dying of AIDS. There was little hope for long-term survival. As Nyumbani grew in size over the years, the staff refused to sit idly by and watch the children die. They broke up adult antiretroviral (ARV) drugs to give to the children based on new pediatric formula recommendations issued by WHO. They were accused of testing on children and using them as guinea pigs. But it was the only way they knew to give them a chance of survival. Miraculously, they saw a remarkable difference that convinced them to make a commitment to ensure that Nyumbani's small residents had access to life-saving ARVs.

Three years ago, I was a volunteer at Nyumbani and was constantly amazed by the commitment of the Kenyan staff to ensure that these children had as normal of a life as possible. There is a misinterpretation that Nyumbani is an orphanage, with Dickensian images coming to mind. But life at Nyumbani is far from the soup lines and harsh discipline of Oliver Twist. The children live in small cottages and have house "moms." These moms are Kenyan staff members who take care of them as a mother would her own children.

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I returned to Nyumbani this past December and had to remind myself repeatedly that the children were indeed HIV+. I saw remarkable changes in some of them. Amal, a young Somali girl who had arrived three years ago, was talkative and outgoing. She had come to Nyumbani as a toddler barely able to walk; she had been tied to a bed by her grandmother for fear that the villagers would kill her due to the stigma of AIDS. Three years of love and compassion at Nyumbani had turned Amal into a child with a constant smile and friendly attitude.

Nyumbani had certainly come a long way since 1992. Most of the children came to Nyumbani as infants or toddlers. These children are now becoming teenagers. Living long, relatively healthy lives has now become a reality for the children with better access to pediatric and adult ARVs. The home, which has largely been funded through private contributions, is now receiving all its AIDS medications from the President's Emergency Plan for AIDS Relief (PEPFAR), which has dramatically freed up limited resources.

Nyumbani is unique because of its insistence on providing ARVs to children before ARVs were available for adults in Kenya. Nyumbani, which houses around 100 children, is a model for abandoned children. But it is not likely to be replicated in wide scale due to the trend in Kenya for children to stay with extended families as stigma reduces around AIDS.

The issues that Nyumbani faces now with its residents becoming teenagers is a case study for what the future holds for the many children receiving ARVs thanks to PEPFAR and other funding sources. A critical factor for donors, NGOs, and national governments will be recognizing the sexual and reproductive health needs of HIV+ youth as they mature into adolescence to keep themselves and their future partners healthy. Abstinence-until-marriage prevention strategies for HIV prevention could end up causing even more harm due to the fact the youth audience is already HIV infected, leading the young person to engage in risky behavior, as the most serious consequence (HIV infection) is already a reality.

When talking with the teenagers at Nyumbani, the first thing you realize is that they are just like any other teenagers. They have hopes, dreams, crushes, uncertainty about their bodies, and insecurities. They no longer can be treated exclusively as AIDS patients for pure survival. Recognizing this, Nyumbani just completed building a new set of cottages on the property that are known as the adolescent homes. Those who are older than fifteen will live in these houses, divided by sex, with a house mom or uncle. The purpose is to give them independence and to learn to take care of themselves by cooking their own meals.

But Nyumbani still faces challenges in dealing with the emotional needs of these teenagers. What will happen to them as they become young adults in their 20s? Nyumbani, like the international community that is working to give HIV+ children a better life, will need to be prepared to offer psychosocial support in the years ahead. This will help to ensure the HIV+ adults of tomorrow are educated about their own sexual and reproductive health and can have healthy relationships in the future.

Photo captions, from top: Faith being given her ARVs by her house mom; Adele and Faith playing with their new doll (a gift from British Airways crew members); Celebrating Purity's 17th birthday (she is one of the oldest teenagers at Nyumbani); the new adolescent homes being built.

News Sexual Health

Teenager in France in Remission From HIV Infection Without Medication for 12 Years

Martha Kempner

Researchers from France recently presented the results of a case in which a girl born with HIV who was treated early in life has remained in remission without medication for 12 years. Experts are excited but cautious because similar cases have ended with HIV being detected in patients blood again.

Researchers at an IAS conference on HIV pathogenesis, treatment, and prevention held last week in Vancouver presented the case of an 18-year-old girl in France who was born with HIV but appears to be in remission, despite not having taken medication since the age of 6.

Though there is no cure for HIV, there have been some cases in which the virus remains undetectable in someone’s blood without intervention. Researchers hope that by studying this young woman, they can understand how this is possible and how they can replicate it.

The young woman was born to an HIV-positive mother and given an antiretroviral drug called zidovudine for six weeks beginning soon after birth. The original goal of treatment was to prevent her from becoming infected with HIV, but when her viral load got higher, doctors decided to change course and start her on a combination of four drugs.

She stayed on this regimen for years. At some point between the ages of 5 and 6, however, her family decided to discontinue the drugs, though they have not publicly explained why.

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Doctors saw her again at age 6 and were surprised to find that the girl had an undetectable level of HIV in her blood, despite the lack of medication. Twelve years have gone by and the young woman is still not taking medication and still has an undetectable level of HIV.

There are other patients for whom this has happened, at least in the short term. For example, Rewire has written about an infant known as the “Mississippi Baby,” who was born to an HIV-positive mother and given powerful antiretroviral drugs just 30 hours after birth. The baby remained on these drugs for 18 months, at which time her mother stopped bringing her to the clinic.

The next time the doctors saw her, the baby had no detectable virus in her blood stream despite having been off of the medication for five months. She remained off of her medication and continued to have an undetectable viral load until just before her fourth birthday, when a routine test once again found HIV in her blood.

Asier Sáez-Cirión, the researcher who presented this new case last week, also worked with a group of adults in France known as the Visconti patients. These 20 individuals were treated for HIV soon after infection but stopped taking their drugs three years later. Most18 of them—were able to keep the virus at bay on their own; they have an average of ten years in remission.

Some refer to this kind of remission as a “functional cure” because it does not eliminate the virus from the body, but it prevents the virus from causing harm.

A “true cure” would eradicate HIV from a person’s body. This has proven extremely hard to do because of so-called viral reservoirs—cells in which HIV “takes up residence” and can hide for decades. Functional cures are easier to achieve. In fact, in some ways, antiretroviral therapy can be considered a functional cure because it keeps viral loads down and prevents the virus from causing harm. For most people, however, these drugs will stop working as soon as they are discontinued.

Researchers do not yet know why some patients, like this French teenager or the Visconti patients, are able to continue the success of the drug therapy on their own. These patients seem to share immune gene variations that predispose them to severe early HIV infections. Researchers aren’t sure how this helps them later, but one theory suggests that it may cause their infections to be noticed, and therefore treated, sooner than most people.

Early treatment seems to be a key to functional cures, but it’s also a stumbling block to widespread use of these therapies, because most people don’t know they are infected until months after it happens.

“We are learning from this patient, that’s why it’s so exciting. We are learning clearly which kind of response the strategy for the future should use,” Françoise Barré-Sinoussi, who is credited with co-discovering HIV in 1983 and won a Nobel Prize for her research, said in an interview with CNN. She works at the Institut Pasteur with Sáez-Cirión. “This is critical if we want to make progress in the field of remission in the future,” added Barré-Sinoussi.

Many in the field seem to be tempering their excitement after what happened with Mississippi Baby and other cases in which functional cures ultimately stopped working. Moreover, experts are warning parents that most children will not fare well off of their medication.

Analysis Sexual Health

The Pillars and Possibilities of a Global Plan to Address HIV in Women and Their Children

Alice Welbourn

A Global Plan on HIV and AIDS? It has to work for women as well as for their children. Here's how we can make that happen.

The following article based on a presentation by Alice Welbourn at the Women Deliver Conference, which took place earlier this month in Kuala Lumpur, Malaysia.

I was recently invited to take part in a panel discussion at the Women Deliver Conference in Kuala Lumpur, Malaysia, the theme of which was “More than mothers: upholding the sexual and reproductive health and rights of women in the Global Plan.”

The plan in question is the “Global Plan Towards the Elimination of New HIV Infections in Children and Keeping their Mothers Alive,” about which I have co-written before. Since maternal mortality among women living with HIV is still so very high, especially in sub-Saharan Africa, it is critical that we have a Global Plan which works for women as well as for their children.

According to UNAIDS, over 40 percent of maternal deaths in some hyper-endemic countries are attributable to AIDS-related illnesses. Despite these extraordinary figures, sessions on HIV and AIDS still play a rather minor role in this conferences, and this was reflected by a rather sparsely populated hall for this session, despite the presence of such great advocates for women’s rights as politician and lawyer, Dame Carol Kidu of Papua New Guinea, UNAIDS Ambassador Crown Princess Mette-Marit of Norway, Sia Nyama Koroma, the First Lady of Sierra Leone (who is also an organic chemist and psychiatric nurse), and Helena Nangombe a dynamic young AIDS activist from Namibia, one of the Women Deliver 100 Young Leaders.

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During the panel, Jan Beagle put this question to me: “Alice, we have seen significant progress through the Global Plan but we know we need to do more. Can you tell us what you consider has worked and what needs to be improved, to ensure that the HIV and sexual and reproductive health and rights of women and girls are adequately addressed?

This is what I replied:

What has worked is a scientific revolution. It is fantastic that the science is there now for anti-retroviral medication (ARVs) to support women with HIV to fulfill our sexual and reproductive rights, including the right to motherhood, if we wish. When I was diagnosed with HIV in 1992, when I was expecting a baby, it was feared that I might die, because ARVs didn’t exist in those days and it was also feared that the baby would die. So I was advised to have an abortion. Many women of my generation with HIV had no children at all. So it is wonderful now to see younger women with HIV able to fulfill their dreams of motherhood, since with ARVs it is now possible to have 99 percent HIV-free births, even with a normal vaginal delivery. So this is a brilliant breakthrough and huge cause for celebration for us all.

In terms of what could be improved, I would like to focus on three areas today, namely language, care and support and safety.

Firstly, language matters. Just reflect – please read out the following words to yourself aloud: “blame, stigma, fear, prevention, violence, discrimination, sickness, death.” How did that feel? We are learning from neuroscientists now that very negative language increases cortisol levels in our bodies, which in turn make us feel stressed. We are also learning from neuroscientists that if we use positive language this increases levels of oxytocin and serotonin in our bodies, which both make us feel happier and more positive in outlook. From this springs feelings and thoughts of hope, opportunities and possibilities, which we can harness to “think outside the box” and create new ways of addressing old challenges.

So what has this got to do with the Global Plan? Well the Global Plan is made up of four “prongs”, about more of which below. I am afraid the very word “prongs” rather makes me squirm. It feels invasive, sharp, attacking, threatening, and reminds me of pitchforks and damnation, abortions gone wrong or impalement.

Presumably because they also preferred more positive language, Anandi Yuvaraj and Aditi Sharma, the authors of an inspiring report from India last year, presented the Global Plan using the idea of four pillars instead of four prongs. To me the word pillars immediately invites an image of something strong, uplifting, bigger than us all, building up the best in us all, in all our societies worldwide.

So how does this shift of language play out in practice? Well the Indian report authors shifted the whole language of the Global Plan as follows. Instead of Prong 1 (which covers “preventing HIV among women of reproductive age”) the proposed “Pillar One: My Health.” Rather than Prong 2 (“Meeting unmet Family Planning needs of women with HIV”) they proposed “Pillar Two: My Choice.” They replaced Prong 3 (“Preventing HIV transmission to Infants”) with “Pillar Three: My Child.” And instead of Prong 4 (“Treatment, care and support for women and families”) they proposed Pillar Four: “My Life.”

Can you hear the difference? If not, just read that last paragraph out loud to yourself. If you were a woman living with HIV, which would you rather hear?

There is a complete about-turn shift from negative prongs, prevention and needs to positive, women-focused pillars and possibilities. Wow. And these possibilities are now open to us all.

So how do we weave care and support and safety into all this?

Well as I have explained previously with other co-authors, there is no mention of the words “voluntary,” confidential,” or “informed consent” in the Global Plan, which has now been adopted by quite a few states around the world. Sadly, care, support and safety are hugely wanting, both from the Global Plan and from peri-natal services for women in general, as well as for women with HIV around the world. Yet these ingredients are also paramount in an effective response to infant and maternal mortality, with or without HIV.

So to expand on Pillar One, instead of the existing language above, we could seek to ensure informed choice and access to condoms, needle exchange program and negotiation skills training for all women and girls, including girls born with HIV, who often feel very excluded by this “prevention” language.

We could describe Pillar Two as “access for all women and girls to dual protection (i.e. from unplanned pregnancy and from transmission of sexually transmitted infections, through, for instance, use of a condom and the contraceptive pill) that is judgment-free, youth- and women-centered.” In Asia now our colleagues tell us that many women with HIV are just being told by health staff to use condoms, since they shouldn’t be having sex anyway, in their view, and certainly shouldn’t be thinking of having children. Just imagine the power of a replacement “pillar” like this to counteract that message.

Pillar Three could be to “support all women with HIV in our deep commitments to keep our children HIV-free.” What a transformation that would be.

And Pillar Four could be “ensure care, support, love, respect, food, shelter and treatment (when we need it and not before) for all women with HIV and for our families. Louise Binder has written eloquently previously about our concerns regarding the “treatment as prevention” movement.

As an aside, there is also on-going and increasing concern out there about the “Option B+” roll-out, which puts all women in a country when pregnant on ARVs for life, whether they actually need them yet for themselves or not and whether they want them or are ready to start them or not. The “option” bit is only for each government to decide, there is no real option for women at all. It’s a bit of a post-code lottery writ large. We hear of some women throwing their package of ARVs away as soon as they have passed through the health centre gates en route home – for them the idea of being found with ARVs is too terrifying for them to contemplate and outweighs any possible good the medication might do.

I’m all in favor of options for women when they are real options, but not when they are just wrapping up lack of choice in something pretty. Policy makers and practitioners: please mind your language.

Finally, safety.

WHO tells us that gender-based violence (GBV) occurs during pregnancy worldwide – especially in circumstances where the pregnancy is unplanned. Add HIV into this mix and it is like throwing a match into dry grass. We have a potential conflagration of physical, sexual, and psychological violence. We know already that GBV increases women’s vulnerability to HIV. It is also clear that an HIV diagnosis can provoke or exacerbate GBV globally.

Therefore “safety, safety, safety” must be our mantra, at home, in the workplace, and in health care settings. It is vital to turn the tide on the “cascade effect” of women dropping away from health services during pregnancy or after child-birth, once they have been diagnosed, because of their fear of this diagnosis and their terror of what it will bring to themselves and their children. Safety, safety, safety is the mantra. Maybe then we could start to avoid the awful tragedy of so many women dying through AIDS-related issues connected to maternity. Then we could truly have a really powerful and effective Global Plan.

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