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When It Comes To HIV, Knowledge Is Power

This World AIDS Day, know your status. Because while no one wants to have HIV, knowing for sure will give you power you wouldn't otherwise have.

This post is part of a collaboration with Inspire, a healthcare social network with more than one million patients and caregivers.


“This is so 1980s,” I told my doctor in 2005, after finding out that I could have been HIV+ for three years already—all without any warning signs whatsoever.


I said this because, to my mind, what happened to me was so much like what happened to thousands of  people in the 1980s: they learned they had HIV only after being rushed to the hospital with potentially fatal pneumonia, or some other opportunistic infection that runs rampant when the immune system is seriously compromised.

My doctor assured me that medical treatment for HIV infection was far advanced from the “dark years” of the 1980s and early 1990s. The first effective treatment for HIV didn’t arrive until 1996, but now, a combination of therapies involving antiretroviral drugs make it possible to live with HIV rather than almost inevitably progress to AIDS and die.

I knew all of this—intellectually, anyway—because by the time of my own diagnosis, I had been reporting on HIV-AIDS for two decades as a health/medical journalist in Washington, D.C. But it’s one thing to report on other people’s illnesses, and another thing entirely to live with HIV one’s self. Now I had to relearn the basics of HIV, like what a healthy T-cell count is (600-1,200), when my own health, and my own life, was on the line.

It’s one thing to report on other people’s illnesses, and another thing entirely to live with HIV one’s self.

An Unexpected Blood Test

I learned about being HIV-positive as part of the blood work for my annual physical exam. I had believed I was being  tested for HIV every year since 1988, but it turned out my doctor had skipped the test for the past three years. I hasten to point out that he didn’t do the test based on our discussion about my sexual behavior; neither of us considered it ‘high-risk.’ I could have been infected at any point during that time.

I had to remind myself that the only thing that actually changed after my diagnosis was that now I knew what I was dealing with. Even before my doctor’s phone call, I was already HIV-positive; I simply didn’t know it.

Despite what they say, ignorance is not bliss. When it comes to HIV, what you don’t know can most assuredly harm you.

Despite what they say, ignorance is not bliss. When it comes to HIV, what you don’t know can most assuredly harm you: for example, if you don’t know you have HIV, you can’t undertake the regimen of drugs that can prevent it from escalating to full-blown AIDS. So knowing your HIV status is an essential first step in asserting power over your health. Because believe it or not, HIV doesn’t define you.

More Than Just HIV

I offer myself as “Exhibit A” where it comes to living well with HIV. Although I speak and write publicly using my real name about my experience of living with the virus, HIV isn’t what makes me who I am. As I like to say, I have HIV; I am John.

It’s been challenging at times, when others choose to see my HIV-positive status before they see John. It’s always jarring, for example, when someone who doesn’t know me well asks, “How is your health?” Even worse is when another gay man simply dismisses me and other HIV-positive gay men as “unclean,” unrealistically certain of his own HIV-negative status, which could be months or even years out of date.

I can’t stop someone from seeing me only through the lens of HIV. But I can live my life as a man who embraces all of my identities.

But I’ve also chosen not to allow the stigma such people still attach to HIV to undermine my self-esteem. I can’t stop someone from seeing me only through the lens of HIV. But I can live my life as a man who embraces all of my identities—including “person living with HIV”—without reducing myself to any one of them. Living with HIV doesn’t change the fact that I am still a New Englander, a journalist, or someone who loves to cook, garden, hike, and follow politics. They are all part of what makes me the man I know.

That kind of integration and wholeness begins with the power of knowledge. Not knowing your HIV status robs you of agency and power over your own health. Buying into others’ stigma if you have the virus lets others define you on their terms, and that is not something I care to do.

Know Your Status…

This is why “Know Your Status” is the theme of this year’s World AIDS Day, to be marked on Saturday, December 1. For the 30th year, World AIDS Day will honor all of us living with HIV, and memorialize those killed by the virus.

John-Manuel Andriote.

Worldwide, UNAIDS estimates that as of 2017, 36.9 million people were living with HIV, while another 1.8 million were newly infected that year. Of those living with the virus, only 21.7 million are taking the antiretroviral medication that effectively prevents HIV infection from progressing to late-stage AIDS. Nearly 36 million women, men, and children have died from AIDS-related causes since the illness was first identified in 1981.

In the United States, the Centers for Disease Control and Prevention (CDC) reports that an estimated 1.1 million people were living with HIV as of the end of 2015, the latest year for which figures are available. In 2016, there were 39,782 new HIV diagnoses nationwide. The CDC estimates that 15 percent of people who are infected with HIV don’t know they have the virus. Their health is at risk for serious illness, and their sexual and drug-sharing partners are at risk of being infected.

Because Knowledge Is Power

I was one of those people. I hadn’t a clue HIV was already undermining my immune system. I had no warning, no night sweats, swollen lymph glands—nothing. If I hadn’t gotten an HIV test as part of my annual checkup in 2005, I likely wouldn’t have found out I had it until I faced a serious health crisis as my immune system deteriorated.

Once I found out what I was dealing with, I was able to make smart, informed choices to care for my physical and mental health. This is why, 13 years after my diagnosis, I can still say: If I didn’t know I have HIV, I wouldn’t know.

Know your status because knowledge is power.

Creative Commons photo by Antti T. Nissinen.

Q&As The Good Fight

The Dog Walker Who Beat HIV

Otherwise known as the Berlin Patient, Timothy Brown is the only known person to have been cured of HIV/AIDS. But he won't rest until a cure is found for everyone.

There are around 36.7 million people in the world living with HIV/AIDS. Since it appeared in 1981, 35 million have died from complications associated with the deadly autoimmune disorder, and another million or so are expected to be infected by year’s end. Countless fortunes have been spent on concocting a cure which has not materialized. There is one person, though, who has beaten HIV for good, a 51-year-old professional dog walker in Palm Springs named Timothy Brown. Between 2007, when a bone marrow transplant in Germany rid him of the virus, and 2010, Brown was known simply as the Berlin Patient. For reasons pertaining to his health, he had chosen to conceal his identity for nearly three years. Brown, who had lived in Europe for two decades working odd jobs, decided to reveal himself to the world after relocating to San Francisco. Back stateside, he had to adjust not only to life back home but to his new role as humanity’s sole HIV miracle.

Timothy Brown, also known as the Berlin Patient, is the only person known to have ever been cured of HIV.

At first, attention was intense. Brown’s email inbox overflowed with messages, many of them from HIV patients hoping to hear how he did it. He tries to respond to as many as he can but he cannot reach them all; currently he has around 100,000 unread emails. Since Brown’s transplant under a doctor named Gero Hütter, dozens have tried to replicate the procedure but none have found lasting success. Brown has been poked and prodded by countless researchers; his blood stored in labs across the globe, but how exactly his transplant cleared him of HIV remains pretty much a mystery.

Brown has become a leading advocate and spokesperson for the cause of finding a cure. When not walking dogs, exercising, or doing yoga in Palm Springs, where he recently moved, he attends HIV/AIDS conferences around the globe, often as a keynote speaker. In July, he will be bearing a torch for HIV survivors during the 22nd International AIDS Conference in Amsterdam. His existence gives hope to patients and researchers alike; he proves the possibility of a cure. We reached out to Brown to hear more about him and his advocacy work.

You are known famously as the Berlin Patient. But you’re from Seattle. What brought you to Germany in the first place?

I had taken a post-graduation Eurorail trip with two female friends in 1990. We started in London and went all over western Europe. I was gone for three months. When I got back to the US, at 24, I started working in banks. I grew bored with that so I quit and took on temp jobs. I didn’t know what the hell I was doing. I decided I’d move to Europe and picked Barcelona, which had been my favorite place I visited. In April 1991 I moved and stayed there awhile. At one point I lost my apartment in Barcelona and this guy I was seeing asked if I wanted to live with him in Berlin. I hitchhiked there. I worked for the British military as a translator then at a cafe near Checkpoint Charlie.

When did you find out you had HIV?

June of 1985. I had been going out with this guy for six months when he told me that he tested positive for it. He said that I should get tested; he was concerned about my health, though not really for his own. The doctor said my CD4 count was pretty low at that point, about 250, low enough to think that I had had HIV for a long time. She thought I should start treatment immediately. The next year, 1996, Protease inhibitor, an antiretroviral drug, came out and I started taking that. It made people who looked on the edge of death get better; it was like you got a new lease on life. Eventually, I was switched to a combination of three drugs and then was able to kind of forget that I had HIV. It just became, Okay I have it but I’m doing fine and feel healthy.

What made you take the step from being contently HIV+ to getting your fateful bone marrow transplant?

In 2006, I took a trip to New York to attend a wedding. The whole time I was very tired and didn’t know why. I thought it was jet lag but it continued back in Berlin. I saw a doctor and eventually, it was determined I had leukemia. I didn’t want to go to a hospital where there’d be a lot of stigma so he sent me to a university hospital in Berlin. I thought I’d do a round of chemo and the whole thing would be over. I’d be cured. But after the second round Dr. Hütter said he wanted to send my blood to a bone marrow stem cell blood bank to see if it had matches for my tissue type. It was just in case the chemo wasn’t effective, something to fall back on.

It ended up that there were way more matches for my blood then most people get–230 possible matches. That gave him the idea to look for a donor who was immune to HIV.

It ended up that there were way more matches for my blood then most people get–230 possible matches. That gave him the idea to look for a donor who was immune to HIV. He explained that 1% of northern Europeans have a gene mutation which makes them immune. Both parents have to have the mutation for the child to get it. Out of my 230 matches they hoped to find that donor. Eventually, they did.

I had the transplant in February 2007. The doctor’s theory was that if I got this transplant I would also become immune to HIV. I quit taking my HIV meds the day of the surgery. After it, I noticed physical effects. With HIV, I wasn’t able to gain muscle mass. But I was going to the gym every day and suddenly gaining muscle. I felt better. I was able to return to work. At first, after I stopped taking medication the virus went way, way up but then went down to undetectable levels. That took about three months.

You kept your identity a secret until 2010. Why?

My health, basically. I had to do a second transplant because the leukemia came back. I didn’t do so well after that one. My health was horrible. I had quit working before the second transplant. Then after the surgery, I had an episode of extreme delirium–mumbling and so on–and went back to the hospital where it was determined I should get a brain biopsy. Of course, they were worried that they’d find HIV or leukemia in my brain. They didn’t find either. However, the surgeons left an air-bubble in my brain. They did an emergency surgery and removed it. But having that there for several hours has screwed up my balance to this day. I walk like I’m drunk.

So the reason you decided to remain anonymous is because you were recovering?

Yeah.

Why then did you move back to the US?

Because I would either have had to go live temporarily in a home or find someone to take care of me at my home. I was basically bedridden, incontinent. I was in horrible shape. Through physical therapy, I was able to walk again. Then on Halloween of 2009 in Berlin I was out very late and got mugged, probably because I looked like an easy target. I was hit over the head and had my wallet stolen. I fell onto my left shoulder and hit my head on the ground. I got a concussion. It was kind of like having a stroke. I lost my ability to enunciate and had to do speech therapy.

That was a rough patch of years for you.

Yeah it was. But I’m on the other side of it and doing very well.

What has your advocacy work been like since returning to America?

My case is very important because it has proven that curing HIV is possible

My case is very important because it has proven that curing HIV is possible. I tell people that I don’t recommend curing HIV the way I did. It’s hard, expensive,and dangerous. It has been tried a few times but no one’s made it yet. And doing a stem cell bone marrow transplant is not something that can be done just for HIV because HIV treatment now is so good, it wouldn’t be ethical to do one on somebody.

Given how well managed HIV is today through antiretroviral drugs, do you think people are complacent about finding a cure?

Yes. I talked about that in a recent article I wrote. For HIV+ patients, a cure would mean they’d have to give up their benefits. Moreover, they’re doing fine on the medication so why do something that might kill them.

Do you sympathize with that view?

I do. But it’s disappointing. I was very disappointed after an HIV conference I went to recently in Seattle. It was something like 60% of the attendees who said that they really didn’t want a cure.

Brown credits a bone marrow transplant which gave him a rare gene for HIV immunity for his cure.

That’s surprising.

From a public health perspective, it is very important to find a cure. It’s way too expensive for governments and insurance companies to pay for HIV medication in the long term. It can really bankrupt smaller poorer countries. South Africa is a good example. At least twelve percent of the population is HIV+. That’s huge expenses. Not to mention the lives that are wasted.

How do you see your role as a public figure?

I won’t give up until a cure is found for everyone.

For people with HIV and their loved ones, I think I give them hope. I’m told by many, many researchers that I’ve inspired them.

No one has settled the debate yet over how you were cured. But how do you think you were?

I think the reason I’m cured is because I don’t have the CCR5 protein, which is absent from my body. I think that’s the main reason but there is still debate about that.

Are you hopeful that a cure will be developed in your lifetime?

Yes. I won’t give up until a cure is found for everyone. I have survivor’s guilt to a huge a degree. I’m the only person that’s been cured of it. I’m not a scientist but I do what I can to make sure the research goes on. I couldn’t sleep at night if I didn’t.

Profiles

The Condom Woman of the Cape Coast

In Ghana, where HIV/AIDs is on the increase and sex education focuses on abstinence, one 59-year-old woman walks the beaches, dancing and using props to get people interested in safe sex.

When I tell people about my friend Martha Jonah, I like to lead with the fact that she spends holidays on a beach in Ghana, handing out condoms and showing people pictures of what sexually transmitted diseases can do.

She has this book of photos of male and female genitalia in the full ravages of syphilis or gonorrhea.  The book shocks people: those Martha shows it to raise their hands to their mouths, bulging their eyes in disbelief.

Martha isn’t just trying to gross people out, though. She wants them to ask themselves a question: if you aren’t using a condom, how do you know you aren’t sleeping with someone with an STD?

“The lights are out,” she’ll say. “How can you know for sure?”

On public holidays and on weekends, the short, energetic 59-year-old heads to the beach in Ola, Cape Coast with a box of condoms, her book and her warm, welcoming way of engaging revelers. She is offering lessons and advice they wouldn’t have had at school, where a frank discussion of sex–let alone sex education–is often taboo.

There’s not many people who could so easily get away with handing out condoms in a socially conservative part of the world like Ghana, but Martha has it down to an art.

“As you hold the box you are chatting, dancing, being part of the fun,” she says. “You say you need to show them something, then you bring a condom out, and give it to them. Some don’t know how to use a condom, so they don’t take it. If you see two or three people are interested, we have a book given to use by the Ghana AIDs Commission, where there are all these photographs of STIs. Those who are interested, we say ‘this is what happens when we really don’t protect ourselves’.”

It’s a gruesome attraction, but it works.

It’s a gruesome attraction, but it works.

Ghana is in the midst of an HIV epidemic. As of 2016, round 2% of the country’s adults have HIV, and according to UNAIDS, Ghana’s has 20,000 new infections every year. Other STDs, like syphillis and gonorrhea, are just as much—if not more—rampant.

According to Martha, the problem is a lack of understanding about sexual education in Ghana, as well as most Ghanaian’s inability to afford condoms. The socially conservative political environment doesn’t help: a 2017 Guttmacher Institute study found that sexual education was largely focused on abstinence in senior high schools in Ghana, with fewer than half the students ever learning about contraception.

Religion also has its part to play in low condom patronage. Martha finds some people will shun her offer of free condoms, suggesting it would be irreligious to take them. Churches in Ghana will often preach that HIV, AIDs, and other STIs “only affect sinners–people who are cursed by God.”

I met Martha five years ago when I first moved to Cape Coast in Ghana. Surrounded by trees, her house was just down the road from where I was staying. We became fast friends, and have remained so ever since.

Martha Jones. Photo: Stacey Knott

She takes in children and teenagers from across the region to live with her, while they attend local schools. Often these kids come from hard backgrounds, where their educations aren’t prioritized. Under Martha, school is mandatory, and she even lobbies locals and businesses for the money to pay their school fees.

Over the years, sitting around with this big cobbled-together family, I’ve absorbed her life story, but on a recent visit, I wanted to get it all down in writing: how this tiny, jovial lady earned the reputation as the “condom woman”.

It started in 2008, when Martha realized that her region had some of the highest STD rates in the country. She had recently set up her Care Love Charity Foundation for fighting poverty, and through it, was trying to educate young Ghanaians about their sexual health. Groups of beach revelers near her house seemed like a good place to start. With her box of condoms, a penis replica and picturebook, she would walk the few minutes to the coconut tree-lined beach, weaving through groups making the most of a day off.

At first, the people Martha approached were suspicious, but soon, with her picture book and penis stick, she got people’s attention, demonstrating to them how to wear a condom safely and effectively.

With her picture book and penis stick, [Martha] got people’s attention, demonstrating to them how to wear a condom safely and effectively.

With funding from the Ghana AIDS Commission, Martha’s charity has worked through Ghana’s Central Region, running programs to reduce stigma around safe sex in villages, townships, and schools. She also arranges for STD testing, and links up people with appropriate counseling and health services.

And in a country where people with HIV are routinely shunned, Martha emphasizes the importance of compassion, even as she educates people about the realities of AIDS transmission. “We let them know you can’t contract HIV or AIDS by eating with people,” she says. “You cannot contact it when they live with you.”

What’s interesting about Martha’s mission is that once she gets people talking to her, she finds that most people are actually happy to use condoms. “You have to tell them it’s good, and good for you to protect yourself from STIs and STDs. Then they ask how they use it.”

Ultimately, Martha wants to see condoms distributed freely through Ghana, and for the country to move away from abstinence-only education. But even when she’s not on duty as the Condom Woman of the Cape Coast, Martha says people will come up to her and ask her for a new supply.  “Sometimes I will be at home and someone will call me and say ‘do you have the stuff’,” she says, throwing her head back with a hearty laugh.

Something she’s doing must be working.

Histories

“You Might As Well Live”

Chronic medical issues--including a genetic mutation which gave her her showstopper eyes--impacted much of Elizabeth Taylor's life, but never defined it.

At any stage of her storied acting career, Dame Elizabeth Taylor is remembered for her effortless glamour, and a lifestyle as high profile as her onscreen roles. Born in 1932 to wealthy American parents living in London, she enjoyed dual American-British citizenship that helped fuel her jet-set lifestyle later in life. For almost as long as she was alive, Taylor–who catapulted to success at age 12 in National Velvet–was a fixture in popular culture.

An iconic photo of Elizabeth Taylor for Time-Life.

Hiding behind a beautiful façade and generous philanthropy was a personal history of health struggles and setbacks that, for others, might have seemed insurmountable. But Taylor was undaunted. According to her later retellings of her childhood, coping with numerous conditions had little impact on her ambition and work ethic. If anything, it seems as though her work distracted her from what might have easily been a lot of self-pity. “I’m a survivor,” she once said. “A living example of what people can go through and survive.”

From birth, Taylor had health issues with which to contend. She was born with scoliosis, a curvature of the spine. From a young age, the spirited and talented adolescent worked long hours on film sets with little time to be stressed about her health. Still, her physical state was impacted by her work. In 1944, while filming her first major movie role in National Velvet, she broke her back falling off a horse; the injury, coupled with her already bent bank, went untreated for months and caused her lifelong chronic issues and pain. Even one of her most striking features, the lush eyelashes that rimmed her bright blue eyes, was the result of a genetic mutation known as distichiasis, which results in a second or “accessory” row of eyelashes.

One of Taylor’s most striking features, the lush eyelashes that rimmed her bright blue eyes, was the result of a genetic mutation known as distichiasis.

Tempering any tendency Taylor might’ve had toward self-pity about her health was her rather dramatic personal life. She was famously married eight times (to seven husbands; she married fellow actor Richard Burton twice) while steering a thriving film career. Even when she fell ill while filming—perhaps most notably, suffering from near-fatal pneumonia in 1961 during the filming of Cleopatra, undergoing an emergency tracheotomy that saved her life—she kept climbing the Hollywood ranks, becoming one of LA’s most bankable, beloved screen siren, and earning two Academy Awards for Best Actress, one for Butterfield 8 in 1960 and the other for Who’s Afraid of Virginia Woolf? In 1966, She was almost never heard complaining:  “I’ve been through it all, baby,” she said. “I’m mother courage.”

In fact, Taylor seemed more interested in alleviating the suffering of others than tending to her own health woes. She was an early celebrity supporter of research to treat and cure HIV/AIDS. In 1983, she co-founded the National AIDS Research Foundation, one of the two organizations that later merged to become the highly influential international nonprofit American Foundation for AIDS Research (amfAR).

Elizabeth Taylor as she appeared in National Velvet, the role that propelled her to stardom.

In the early 1980s, seeking treatment for alcohol and prescription painkiller addiction, she was one of the first celebrities to check herself into the Betty Ford Center and openly speak about her addiction struggles. Taylor was also a heavy smoker, which led to further battles with pneumonia later in her life.

There’s a school of thought that suggests a positive attitude can offer a sort of inoculation against being swallowed up by adversity. Taylor seems to have been one of those plucky people who, when faced with setbacks, felt even more compelled to survive and thrive. She was hospitalized over 100 times in her life, yet for decades, she was also one of the most famous, globetrotting women in the world. How else to square those two facts if not to suggest her optimism, persevering spirit, and joie de vivre fueled her desire to keep living life to its fullest? Indeed, one of her favorite phrases was, “You might as well live.” Plus, her tremendous wealth no doubt helped her treat and cope with any condition that might impact her ability to keep going.

“You might as well live.”

In the final two decades of her life, despite her outgoing personality, Taylor was mostly out of sight following several difficult diagnoses. In 1997, she was diagnosed with a brain tumor, which doctors removed without incident. In 2002, she received treatment for skin cancer. As is often the case when someone manages multiple conditions, Taylor’s social life was impacted—a particularly rough turn for someone who had thrived in the spotlight.

“I’ve become one of those poor little women who [has been] bent sideways. I feel so stupid and feeble that I can’t do the work I was meant to do because of my bloody body,” Taylor admitted in 2004, at age 72. “My body’s a real mess…. There must be some reason that God wants me to live. There must be something left for me to do. And I have to find out what that something is and go out there and do it.”

Taylor as Cleopatra in 1963’s Anthony and Cleopatra.

The following year, she showed up at Elton John’s Oscar party and even got out of her wheelchair to make the rounds. “I want to make sure people know I’m still alive,” she said at the time. In 2009, after joining Twitter, she tweeted after a successful heart procedure, “It’s like having a brand new ticker.”

Taylor’s resiliency was well known. Her Los Angeles Times obituary writer noted in a piece about the dozen years during which she kept updating Taylor’s life story as fans and Taylor herself lived through “Taylor’s nearly annual brushes with death.” In a Vanity Fair piece published following her death, Taylor’s friend and publicist Sally Morrison said that Taylor’s friends and family had a hard time accepting that she finally succumbed to congestive heart failure. “She’d come back from the brink so many times. We all expected her to do it again,” Morrison explained. At her 79th birthday party two months before her death, Taylor had crowed to the assembled guests, “I’m not dead yet!”

Taylor, later in life, recovering from surgery to remove a brain tumor.

“I’m a survivor,” Taylor once said. “A living example of what people can go through and survive.”

It was a lighthearted pronouncement from a woman who had, at one time, been among the most famous people in the world. The truth behind her statement was more sobering. Age is hardly a disability, but with older age does often come an invisibility, especially for women. Taylor didn’t complain about this so much as occasionally note how much her health issues had impacted her ability to stay engaged with the wider world. As she aged and her health complications naturally became more serious in nature, joking about her health may have been her best coping mechanism.

When Taylor passed away in 2011 after refusing further cardiac surgeries, her loved ones and countless fans knew it wasn’t without putting up a noble fight for many years. Her hopeful, joyous attitude continues to outshine any shadows her health struggles could have cast over her glittering legacy.

The Good Fight

Breaking The Cone Of HIV Silence

In Kenya, a woman organizes her community to fight the stigma of AIDs.

The year was 2006. Joyce Nipher, then a 38-year-old housewife with three children, found herself an AIDS widow with an HIV positive status and negative finances.

“I thought to myself: ‘Where am I going to start? I’m not working, I have to pay house rent, I have to pay school fees for my children.’ You couldn’t recognize me at that time, I was just like this,” she says, imitating a small, hunched over woman with her head down.

The Kenyan woman’s life has been demarcated by the scourge of AIDS, though to see her now you wouldn’t know it.

joyce-5

Joyce Nipher.

Mama Brian, as she’s known in the East African manner that renames woman after their first sons, has a broad smile and an easy laugh. The cozy one-room shanty she now lives in, decorated with photos of her posing with international friends and of Brian at graduation, is a vast improvement on the slum she was living in a decade ago.

Nipher estimates 75 percent of the people she knows are living with HIV. Her uncle was the first in her family to die from the immunodeficiency syndrome in 1995, before her sister in 1999.

In 2002, she noticed she was getting sick all the time and not recovering.

“I caught malaria. When I took the drugs for malaria, it was not getting better. Then I decided to go for a test. I was tested for HIV and it was positive.”

joyce-6

75% of the people Joyce knows are living with HIV.

Nipher is not certain how she contracted HIV, as she has had blood transfusions at the hospital before. However, she knows her husband, Moses, was sleeping with other woman, unprotected.

To make matters worse, he refused to get an HIV test done even when her own status became clear.

“For my husband, he said he didn’t want to hear about HIV. If he heard he had HIV [he said] he would poison everyone in the house.”

Until her diagnosis, Nipher continued to have unprotected sex with her husband.

She says she never thought about the possibility she could contract HIV before she started getting sick. There was very little awareness about the AIDS epidemic that began in in the 1980s.

In 2005, Moses was admitted to hospital but he again refused an HIV test, instead being diagnosed with tuberculosis–a common AIDS comorbidity. The World Health Organization estimates the risk of having tuberculosis is between 26 and 31 times greater in populations with HIV.

joyce-2

 

An alcoholic, Moses continued to drink while taking his medication and eventually died of meningitis seven months later.

She was angry with her husband for his refusal to fight to survive, she says, “but then what could I do?”.

“It really hurt me. I was like, ‘When he is going to die how am I going to take care of the children? I’m not a working woman, I’m just a housewife, I don’t have any work’. I was very thin, I was sick.”

When a Canadian foundation first came into contact with Nipher in 2006, she was lying on her deathbed in the Nairobi slum of Kijiji–which means ‘village’ in Swahili. But the foundation offered her a lifeline, put her three sons in school, educated her about HIV/AIDS and even gave her money to start giving HIV awareness trainings in her area.

She began making money slowly through giving awareness trainings, supplementing this by washing clothes and cleaning houses.

In 2008, Nipher decided to start her own group, Women Against Stigma. The group began with 10 HIV-positive women from her slum, with the idea to be open about their HIV statuses in order to combat the secrecy and fear that Nipher says often accompanies the illness. Fear of stigma prevents people from seeking treatment, she says, and is the reason her own husband died.

joyce-8

“Many people were dying because of the stigma.”

“Many people were dying because of the stigma. We said ‘No, we have to come up and do something to support the people who are dying’.”

There are now 26 women in the group, although stigma is still a problem in their local communities and only ten are open about their HIV status. However, the women band together to help each other find economic power.

“We decided to start making beads, we can make smart jewelry, we can go and sell.”

The first beads were bought with funds from a German group that Nipher met through one of her HIV trainings. As the years have passed, the women have added more skills to their retinue; weaving baskets, making detergents and tie-dying clothes.

Each woman is entitled to a KSH6000 loan (USD$59), but they must pay KSH1000 back each month over the course of six months plus an interest of KSH100.

That money is pooled, interest compounds and then that money is channelled into one of the existing businesses; or, ideally, into a new business entirely.

The women are now looking to buy a house when they have enough saved up.

“It’s better to work together,” Nipher says. The women work largely from home and visit clients around where they live, but meet up once or twice a month to discuss business, among other issues.

joyce-7

HIV medication can be hard to come by in Kenya.

It is still hard to make sales at times, given the poverty in the areas in which they work, but it has given an economic pathway to women who have lost jobs or husbands or been ostracized by their families.

Nipher is a known advocate in the slum she has now left behind, thanks to the economic advantages she has gained since she began Women Against Stigma.

She is also the first person many in the slum turn to when an HIV positive result comes in.

“They used to hate me, but nowadays they love me. When someone is sick, I get a phone call [saying] ‘You’ve got to come and take her to the hospital, come and talk to so and so’.”

That’s a big change from the discrimination she used to face 10 years ago.

“When you go to someone to ask for a job, they’d say ‘She’s HIV positive, she cannot work here’. I could not even talk with people in the beginning.”

Joyce even lost a job cleaning a house in 2007, after her employee discovered her taking antiretroviral drugs, or ARVs.

“Everyone thought I was going to die and my children could not go to school, but now they are wondering,” she laughs.

Nipher also volunteers three times a week in an orphanage run by the Canadian NGO that originally helped her, the Hanne Howard Fund.

joyce-4

“Women against stigma.”

A number of orphans are AIDS orphans and a handful are HIV positive. It is these orphans who Nipher has a particular interest in looking out for.

As part of her outspoken role, Nipher has sung songs and written poetry encouraging the community to combat HIV stigma. One she can still recite from memory:

“Oh let me speak, oh let me write, oh let me tell people I can remember, I can remember, I can remember. My beloved sister died, my beloved uncle died, my beloved husband died. It was because of the stigma. I am living because I am above the stigma. You people living with HIV speak out the status, you people living with HIV preach the gospel on HIV and Aids, you people living with HIV, don’t joke around with Mr Virus. Fight the stigma of discrimination with all means.”

All photos by Humphrey Odero.