Her project “chronicles young women coming of age amidst the H.I.V/AIDS epidemic in Swaziland. Coming of age for Swazi girls is tough. A tiny African kingdom of 1 million, Swaziland reports the highest percentage of H.I.V positive people in the world, with the hardest hit being women aged 15-29.” The images are startling - both intimate and universal, and a testament to the power of visual storytelling in the hands of a committed documentarian. Be sure to check out her work, and if she needs funding anytime in the future and and head over there and make a donation. I can’t think of a better way to spend $10.

First, a bit from my review:

In a new book, Genocide by Denial: How Profiteering from HIV/AIDS Killed Millions, Dr Peter Mugyenyi tells the story of the AIDS epidemic in Uganda from its frontlines: hospitals, orphanages, graveyards, witch doctors’ homes – everywhere but from a drug supply cupboard.

Mugyenyi was one of the founders of Uganda’s Joint Clinical Research Centre for HIV/AIDS (JCRC), which pioneered the provision of life-prolonging antiretroviral (ARV) drug treatment in Uganda in the mid-1990s.

The book is a personal account of “throw[ing] a bucket of water into the towering inferno” of Uganda’s HIV epidemic at a time when the country could do little more than look on as its people died slow and preventable deaths.

After doing his medical training in the United Kingdom, Mugyenyi returned to Uganda to find a mounting death toll from AIDS. Every day he watched parents burying their children and children burying parents. The drugs that could save his patients’ lives were available, if they could only afford them. “The vast majority of my patients died not just of AIDS but of poverty,” he writes.

The vast majority of my patients died not just of AIDS but of poverty

In the early 1990s the first generation of protease inhibitors [anti-HIV drugs designed to suppress virus replication] cost US$14,000 per year per patient, at a time when most Ugandans earned less than a dollar a day.

Mugyenyi had to turn away thousands of patients, including some of his own relatives, because the life-saving medication was so prohibitively expensive; neither his relatives nor his many other patients could understand why, if there were drugs for their condition, they could not get them.

In his narrative about Uganda’s battle for affordable AIDS drugs, Mugyenyi recalls details that are almost unimaginable in today’s world of $10-a-month ARVs: how at the height of the epidemic people started planning funerals as soon as their relatives began coughing; and how Kampala’s ubiquitous pork eateries gained popularity as people sought to avoid the weight loss associated with ‘slim’ disease [a local euphemism for HIV/AIDS].
MORE…..

What I wanted to add, I will quote directly from the book, about the combination of two topics I write about too often: orphans and misguided attempts at aid.

Setup: well meaning aid workers trawl the slums looking for AIDS orphans to help, many of whom are staying with relatives and extended family members. The aid workers provide blankets, school fees, and other assistance to the orphans – just the orphans.

What these well meaning benefactors did not immediately realize were the dire circumstances endured by all children in the home. They all lived and shared the same miserable conditions. The added burden of orphans in their destitute family had made their dire situation much more miserable. All the children spent nights huddled together trying without success to keep warm in the dilapidated dwelling as they all had no blankets. Reportedly only two of the children were now going to school… It does not take much imagination to visualize what the atmosphere in the shanty home must have been like after the departure of the naive donors.

See more of my PlusNews reporting:

Using mobile phones to fight AIDS
Marriage, the new frontier in HIV prevention
Dating is so hectic, I put a personal ad in the paper
Overcrowded Prisons heighten TB risk
The government is only looking after straight people
Change brings new risk for the Karamojong

(The list goes on and on – a good portion of the PlusNews reporting from Uganda comes from the Scarlett Lion laptop.)

(And yes, the red background behind the book cover pictured above is indeed my dining room table.)

The story proved much harder to report than I had expected. My idea was to speak with people who were living with HIV about finding partners through the personals. Every week, I culled the adverts and sent emails and text messages to people who identified as HIV positive in their ads.

I received few replies. And some people bothered to reply only to tell me never to contact them again. One woman replied, but then wouldn’t meet me. One woman set a meeting time with me and didn’t show. Another man replied but really only seemed interested in dating me. Another person met me only to complain about how someone had found his email address in the New Vision and subsequently conned him out of several hundred dollars.

Needless to say, I spent a lot of time trying to report this story, and a very small amount of time actually reporting it. The result is here. One of my only successful interviews was with this lady, who was thoughtful and funny – I could have spoken with her for hours. About six pages of single spaced typed notes were whittled down to this 600 word story.

It would have been great if I could have talked to a bunch of people and gotten multiple perspectives, written a really interesting feature that showed a real trend emerging, but as it is, I had a few sodas with a very nice lady.

Joanna: “Dating is hectic, so I put a personal ad in the paper”

KAMPALA, Joanna*, 25, an HIV-positive schoolteacher who lives in the Ugandan capital, Kampala, decided to take a chance on love by putting a personal advertisement in the newspaper. She spoke to IRIN/PlusNews before her first date with a man who responded.

“I’ve only dated one person who doesn’t have HIV. It’s kind of hectic, because you don’t know your future or how it’s going to be. You’re not ready to pass on the infection to this other person. That’s why I put up my ad in the Meeting Point section of the New Vision [a national daily].

I just wanted to see, would it work? Does it work? But then … I opened my e-mail and there were a lot of e-mails from guys – maybe 20.

I’m going on a date this Sunday. We’re not so sure what we’re going to do – I don’t like sitting down when I’m meeting a person for the first time, so maybe we’ll go somewhere or do something. Somewhere with an activity, not just to talk and eat.

What I liked about him is that when we talk, he treats you like a person. The others were interested in ‘How do you look?’ and I don’t want a person who is interested in how I look, but in my character. We have talked on the phone for three weeks now. He works upcountry – he’s an administrator with some NGO [non-governmental organisation] dealing with HIV.

I hope he’ll be like the kind of person I imagined on the phone; someone who is fun, not someone who has sadness or is into depression. Some people go on and on about their status and that kind of thing – they haven’t gotten over it. I hope he shows some character; I want someone who is free to be himself.

I’m scared, I really want it to work out, but what if it doesn’t? What if we get there and we can’t talk? What if we communicate so much on the phone but then there’s nothing in person?

READ MORE…

Moses Kajenda may not have eaten lunch because of me. When I entered his ward with the supervising doctor at the medical facility of Luzira Prison, Uganda’s biggest penitentiary situated in a Kampala suburb, the sick inmates were eating lunch. Each had a bowl of posho, a flour and water based staple, and a bowl of the broth of bean soup without beans.

The doctor led me over to Kajenda’s bed, neatly made, with pink sheets folded over a dark green and black blanket. I was reporting on the co-infection of Tuberculosis and HIV/AIDS in the prison system, and Kajenda had both viruses. The doctor told me a bit about his medical condition – on first line TB drugs and now ARVs, while before he only took Septrin, a prophylaxis antibiotic. He was doing better here, eating more, not subject to hard labor as he had been at the upcountry facility where he’d previously been serving time.

Kajenda, gaunt and stiff, folded his hands, one over another, and spoke with his eyes to the floor. He answered the doctor, who translated, only looking at me fleetingly from time to time.

The other inmates in the ward sat quietly on their beds, eating their lunch. I was worried about Kajenda’s lunch as soon as we started speaking, and sure enough, an attendant came and took away his food. At first it seemed like the food was just placed on a surface at the front of the room, but by the time we had finished speaking, all the others’ plates had been cleared.

I asked the doctor if he would still get his lunch. Oh yes, yes, the doctor reassured me, and spouted off a list of extra rations prisoners in the medical facility receive – soya, greens grown in the yard behind the facility, and tomatoes and onions from the central prison system.

I asked when they receive this food, since I certainly didn’t see anyone with a tomato or greens. The doctor assured me it’s every other day, or every couple of days, just not today.

As we started to leave the ward, it didn’t seem the attendant was bringing Kajenda his unfinished meal. I voiced my concerns again, but the doctor said, “No, this one will eat, he is just a slow eater, he will finish his food later.”

According to prisoners, they eat only once a day. Food is needed to properly absorb ARVs, and regular caloric intake to give the body strength to fight TB. I thought about saying something more, or about waiting until I saw Kajenda receive his lunch. But I decided against this. Maybe that would just make it worse for him later today, or tomorrow and the tomorrow after that. I couldn’t anticipate what kind of effect my intervention would have.

Walking out of the room with the doctor, who was on his way to lunch, I wondered whether Kajenda would eat lunch.

Probably not.

Perhaps, speaking to him about TB in the prison is important enough to interrupt him temporarily. Maybe it will make health officials more aware of the overstretched facilities and resources at Luzira and that would be advantageous to the inmates in the long run.

But it certainly wouldn’t be advantageous to Kajenda. I couldn’t have told the doctor, no, let’s come back later and let him eat. The doctor was busy and I was taking up his time. And my presence in the ward was sanctioned – by the commissioner of prisons, the officer in charge of this part of the prison, every one of the dozen or so guards who checked my permission letter and ID, the officer in charge of the medical facility, and this doctor, in charge of this ward. Probably twenty or so people in all had agreed to my presence and played some role in me getting from my flat in Kampala to this ward in Luzira.

I always tell people, before I interview them, that it’s up to them whether they speak to me, and if they do, which questions they answer. I said that to Kajenda, but just like I didn’t set the terms with the doctor, Kajenda didn’t set the terms with me.

And so, because of me, Kajenda probably never ate lunch. Or anything that day.



Lately, those words have felt hollow. I take a lot of pictures, and not a lot of things change. And something changing at some point in the future doesn’t pay school fees today.

But, there’s been a lot of response to the AP story about Stephen and the quarry in Kireka. The Nairobi bureau chief of AP called me the other day and said she’ll probably want Katy and me to do a follow up story. Additionally, the AP has had so many letters saying people wanted to do something that she asked me where she should direct them.

I’ve also gotten several emails, not to mention comments on this blog, about the topic. So, here are a few places you can look into if you want to do something.

• If you’re in Uganda, one of the women in the community who acts as a local leader is named Milly and can be reached via her mobile, which I won’t put here, but if you’d like her contacts, leave a comment or send me an email.
• Meeting Point International works with HIV positive women in the quarry, and they are supported by AVSI.

Mainly, though, I would like to emphasize that though Stephen’s story is sad and heartbreaking, right next to him on a pile of rocks is another kid who is also sad and heartbreaking. This is one of the fundamental problems of both aid work and journalism – every time there’s one kid like this, there’s a dozen. Or a hundred. Or a thousand.

I honestly think that while Stephen deserves help of course, something structural must change and it’s more important to funnel resources to that end. The Refugee Law Project had done a lot of advocacy work around the issue of IDPs in Kampala, and in terms of helping the community rather than an individual, they would be the way to go.

A few facts about the conference, compared to facts about ARVs:

1,500 people attending the conference
$22 for lunch

$33,000 for lunch. In Kampala, you can get a nice local lunch for about Ush 3,000 ($1.50). The conference goes from Wednesday to Saturday, so that’s 4 lunch sessions, for a total of $132,000.

$15 Generic ARVs for one month

Therefore, if all these delegates forgo their pricey lunch, 8,800 people could be on ARVs for a month, or 733 people for a year.

Insecurity affecting HIV funding in Karamoja

KOTIDO, 3 June 2008 (PlusNews) – Frances Otim, living in Kotido, an urban centre in Uganda’s northeastern Karamoja region, doesn’t use condoms because he doesn’t know how, and doesn’t use a mosquito net because the one he has is ripped.

For most adults, malaria isn’t life threatening, but for people living with HIV, acute malaria causes a spike in viral load – the amount of the virus present in the body. This in turn heightens a sexual partner’s risk of contracting the virus. “I had malaria last week,” Otim, who is HIV-positive, told IRIN/PlusNews at the Church of Uganda Health Centre in Kotido.

“We need to teach about condoms,” said Patience Ajok, the centre’s programme coordinator. She would like to do this, as well as a lot of other activities related to HIV prevention and treatment, but is limited by a tiny budget and having very few staff members. “The number of [HIV-positive] clients is increasing, but personnel and funding is not.”

(More…)

KOTIDO, 3 June 2008 (PlusNews) – Frances Otim, living in Kotido, an urban centre in Uganda’s northeastern Karamoja region, doesn’t use condoms because he doesn’t know how, and doesn’t use a mosquito net because the one he has is ripped.

For most adults, malaria isn’t life threatening, but for people living with HIV, acute malaria causes a spike in viral load – the amount of the virus present in the body. This in turn heightens a sexual partner’s risk of contracting the virus. “I had malaria last week,” Otim, who is HIV-positive, told IRIN/PlusNews at the Church of Uganda Health Centre in Kotido.

“We need to teach about condoms,” said Patience Ajok, the centre’s programme coordinator. She would like to do this, as well as a lot of other activities related to HIV prevention and treatment, but is limited by a tiny budget and having very few staff members. “The number of [HIV-positive] clients is increasing, but personnel and funding is not.”

(More…)

Ngeleca Maddalina – “I don’t remember the last time there was meat to eat”

KARAMOJA, The Ik are one of several ethnic communities in Uganda’s northeastern region of Karamoja, near the border with Kenya.

Culturally and linguistically distinct from the rest of Uganda, Karamoja has often been marginalised and lacks the kind of services and infrastructure found in the rest of the country. While most ethnic groups in Uganda are Bantu, the Karamojong are Nilotic – they are taller than most Bantu people, speak a dissimilar language, and still dress in traditional clothes. (More…)

Namoe Aisha: “I’m ready for the medicine, me myself, I’m ready for it”

MATANY, Namoe Aisha, an HIV-positive widow with four children, is currently undergoing treatment for tuberculosis at the Matany Hospital in Moroto district, a remote region of Karamoja in northeastern Uganda. She told IRIN/PlusNews about the difficulties she has encountered since being diagnosed with the virus two years ago.

“When I was still young I went to Soroti [a district in eastern Uganda] for school, and there I married a Musoga [ethnic group in eastern Uganda] man. We had four children. Two years ago he became very ill and he died.

“I was also sick and I went to test and found that I have HIV. My co-wife [her husband's other wife] was also sick with AIDS and she died soon after our husband. She had refused to be admitted to hospital even though she was coughing with blood. (More…)