inACTIVISM, in Kenya : Boniface Mwangi

The title ‘activist’ in cities like New York, London or Oakland can carry some progressive prestige. But in Kenya, ‘activist’ is a dirty and dangerous word, at least according to Boniface Mwangi, one of the Kenya’s most prominent young demonstrators.

“It’s a label that is used very loosely for somebody who is outspoken,” he says. “People who are afraid to speak their mind call you a dissenter, they call you an activist, they call you unpatriotic. But I think opposition — that’s our patriotic duty.”

The Kenyan government does not appear to agree.

Mwangi, 30, is a ‘photoactivist.’ The photo part came first; as a photojournalist for Kenya’s The Standard, and then as a freelancer for AFP, Reuters and other international outlets.

In 2007, violence erupted after Kenya’s fraught presidential elections; Mwangi took to the streets to document horrific and widespread attacks.

He then launched a traveling photo exhibition in ten cities across the country to spark dialogue and reconciliation.

Mwangi now spends most of his time running a new art-activism hub in Nairobi called PAWA 254, where he organizes demonstrations, campaigns and discussions for social and political change.

PAWA 254 office, based in Nairobi.

From the laid-back vibe at PAWA — friends chat on bean bag chairs sprinkled among rooms painted with inspirational quotes from activists of old — you may not expect that working here could lead to imprisonment, harassment or threats on you and your family’s life.

But Kenya’s recent history would tell you otherwise.

While the country’s new Constitution formed in 2010 may grant protection for citizens speaking out, it’s in the last few years that significant evidence has emerged showing just how dangerous being a Kenyan activist can be.

In March 2009, Oscar Kingara and John Paul Oulu, two activists investigating extrajudicial killings that took place during the post-election violence in 2008, were shot dead by two unidentified gunmen.

Spring 2010 brought unlawful arrests, detainments and torture for several activists. In late 2012, a human rights worker pursuing voter registration corruption was beaten to the point of needing surgery on the back of his head.

In September of this year, two lawyers working on prominent human rights cases filed against the Kenyan government were shot to death, and the former chairman of Kenya’s National Commission on Human Rights received threats that her home would be burnt to the ground.

And just recently, Human Rights Watch has since reported an overall increase in threats, intimidation and violence against human rights defenders in Kenya.

Mwangi’s international acclaim — he won numerous prestigious awards for his photography of post-election violence, and holds a senior TED fellowship — has brought him some protection. But he believes the real key to protecting freedom of speech in Kenya comes with decentralizing activism and getting the masses involved.

“If you have everyone involved, well… who’s going to kill everyone?” he says.

Good question. It’s clear that being an activist in Kenya right now requires a leap of faith in that very notion.

#inACTIVISM is a video series exploring the current conditions for human rights work around the globe through brief talks with activists working on the front lines. Follow Mo on Twitter for future #inACTIVISM episodes : @moscarpelli

for RYOT News: NYPD, ‘Stop and Frisk’ Takes a Hit

I recently reported a text + photo story for RYOT News on the most contentious legal issue of NYC’s summer: a duo of bills known as the Community Safety Act, which would primarily fight the NYPD’s practice of Stop, Question and Frisk (known more commonly as just ‘Stop and Frisk’). A rally was staged outside of City Hall on a sunny August afternoon, as the City Council considered overriding NYC Mayor Michael Bloomberg’s veto of the Community Safety Act.

The council considered, debated, and eventually – to an eruptions of cheers by the activists who stuck the whole council meeting out – overrode Bloomberg’s veto by the end of the afternoon.

Bloomberg made it clear rather quickly he’d be appealing their decision, furthering the legality decision of Stop and Frisk for at least months.

Read the whole story here: NYPD Takes a Hit: Oversight bills voted back into action by NY City Council

Here are additional photos beyond the few that ran with the story on RYOT:

nyc rally

Lower Manhattan, NYC.

back this film!

Last year, I joined Red Reel (Alexandria Bombach) in Afghanistan to shoot a story on Afghan photographers. We found an incredible story that was much bigger than what we’d anticipated.

So — we’re making a feature-length documentary. It’s called Frame by Frame – the story of four Afghan photojournalists helping build free press in Afghanistan. To make it happen, we need to get back to Kabul and get the full story. We launched a Kickstarter this week to fund the rest of production. Take a watch:

Learn more about the story, and please support it here:

http://kck.st/1c7QN04

You can also find Frame by Frame…
on Facebook: facebook.com/framebyframethefilm
on Twitter: @framebyframedoc
on Instagram: @framebyframedoc
aaaand on Tumblr: tumblr.com/framebyframe-thefilm

data gaps muddle drug-resistant TB story

How do we fight an airborne, infectious disease that we haven’t been able to effectively track?

We have a fairly solid sense of how much drug-susceptible tuberculosis exists today. More than 1.4 million people die, and 9 million new people contract TB each year around the globe.

But drug-resistant TB has slipped under the surveillance radar for decades, with a price. The lack of data is making it difficult for advocates, researchers, and storytellers to explain to the public just how threatening and deadly the current drug-resistant TB epidemic is right now.

Take India, which has the second-highest TB burden in the world. As of 2011, the World Health Organization believes around 73,000 people in India have multidrug-resistant TB right now; the Wall Street Journal reports 100,000. But tallies from India are coming from ‘limited sub-national areas.’ There are no nation-wide surveys of drug resistant TB cases in the country as of yet and India reported no data at all for how many people have been tested for drug-resistant TB.

Even worse (and more confusing)? The WHO estimates that just 6% of TB patients who actually had drug-resistant TB in 2011 were diagnosed as such. If this is true, then given India has 3.1 million TB cases, that means there’s around 2.9 million people in India who have drug-resistant TB and don’t even know it.

Dr. Ramanan Laxminarayan of the Public Health Foundation of India and the University of Princeton has been studying drug resistance for more than a decade. When I cocked an eyebrow at him about the high rates of DR-TB cases in India, he cocked an eyebrow right back.

“I mean, fine. You point fingers at India, but the fact is everyone missed this,” he said, ‘this’ meaning the capability and growth of drug-resistant TB. Dr. Laximinarayan has been researching drug-resistance for years; he’s not unused to explaining its potential. “But the bugs are smart, I mean, you hit them with one thing and they’re going to figure out how to become resistant.”


TB patients wait for their treatment at a DOTS Centre near New Delhi, India. Several
of these patients have drug-resistant TB.

So far, TB has done just that.

Drug-resistant TB is just what is sounds like: strains of Mycobacterium tuberculosis that do not respond to treatment.

Multidrug-resistant TB (MDR-TB) is unaffected by at least the two most powerful treatments (isoniazid and rifampicin).

Extensively drug-resistant TB (XDR-TB) does not respond to even more TB medications.

The WHO says we don’t have enough data to make conclusions about MDR-TB and XDR-TB trends.

But the three dozen infectious disease scientists, policy makers, advocates and researchers I spoke with about DR-TB agreed: new resistant strains of TB are posing a serious and growing danger now more than ever before.

And for the most part, the world outside of the TB-focused institutions — meaning most of the world — have not paid mind.

Why aren’t we talking about drug-resistant TB?

It could be chalked up as a research problem: since the data is so sparse, posing DR-TB as a global threat is a tough sell. A number of obstacles — poor lab infrastructure, patients hiding their disease to avoid societal stigma, lack of accurate diagnoses before a patient passes away, to name a few — make sleuthing out the actual number of cases we have in the world pretty difficult. Any estimates we do have on TB cases are likely far below the truth.

It’s a social problem: TB exists and thrives mostly among the poor, marginalized and malnourished; these communities have less access to health care, can go untested or undiagnosed, and can be very hard to survey. Patients don’t always want to tell their family, friends, or neighbors that they have TB, fearing the social rejection and fear surrounding the disease.


Sputum samples in a New Delhi lab await analysis.

It’s a scientific problem: drug-resistant TB is hard to test. Only recently has the sector developed a way to find out if a strain of TB will turn out to be resistant to the first-line drug treatments. So the most common way to treat drug-resistant TB right now is to put someone on a drug, then wait at least six months, as they take handfulls of pills per week, to see if they respond to them. As you’ll see from a young South African girl named Phumeza in the film below, this way of treatment can devastate — or even ruin — a life.

We’ve made some progress of late on surveillance: India recently labeled TB a ‘notifiable disease’, meaning doctors and patients and family members of patients are required to report cases of TB in their communities to the government if they’re aware of them. A recent rapid diagnostics machine called the GeneXpert has helped identify TB cases (and even some forms of drug-resistant TB cases) within as little as an hour’s time. These are a start. But across the world, new drug-resistant strains of TB continue to pop up everywhere, and the TB sector is well aware that their data is not telling the whole story.

An updated map of extensively drug-resistant TB (XDR-TB) incidence will show you a cluster of countries with XDR-TB; at first glance, you may think, “Ok, it’s not so bad, right? It’s not like XDR-TB is in every country in the world…” But experts told me that the map is more an indicator of our testing progress than it is of actual XDR cases. XDR isn’t necessarily limited to these countries; these are the 69 countries who have been able to submit data identifying XDR-TB:

This map is constantly changing to include more countries testing improves. The lack of reliable or definitive data makes it hard for global health professionals to gauge the gravity of the TB epidemic. But it also makes reporting on TB hard. How many caveats can you include in citing disease rate data before the whole thing seems irrelevant or not worth reporting until we really know?

TB has afflicted humans for centuries. It’s runner-up to HIV in the world’s most deadly infectious diseases. And yet, TB remains a relative blip on the global health agenda radar. Take the recent 66th World Health Assembly, for example, which brought together around 2,000 delegates from each of the WHO Member States for ‘intense discussions’ on global health priorities. The week-long gathering resulted in ‘key outputs,’ or what the WHO states are the most important diseases and health concerns on the globe. A glance over the agenda will show coronavirus, malaria, polio and other diseases called out specifically for discussion. Tuberculosis rests, as it tends to, snugly in the long list of other Millenium Development Goals, and with a cheery update: that TB cases and mortality rates across the world are declining, that treatment coverage is doing better than expected. Nothing about drug-resistant TB. Nothing about improving or reducing the incredibly long timeline of treatment (which has contributed to, if not caused, drug-resistance in the first place). Nothing about the need for new data or surveillance of DR-TB, nothing about improving diagnostics, and a blink of a mention of TB vaccines.

“Yes, the number of people with tuberculosis is going down slightly,” Aaron Oxley, Executive Director of a TB advocacy organization called RESULTS in the UK, told me in February. “But the number of people who have drug-resistant TB is going up, and nobody’s talking about it.”

Can the world afford to wait for the numbers that prove drug-resistance is a major global threat? From Anthony Fauci at the US National Institutes of Health to Khasim Sayyad, a local health worker in New Delhi, the experts I spoke with don’t think so.

Right now, we know at least 3-4% of TB cases in the world are drug-resistant. That feels like a minuscule amount, and if DR-TB stays there, it might be. But tuberculosis is an airborne disease. Beyond the current strains of DR-TB floating around right now, new and even more resistant strains are already popping up (XDR-TB). TB has already started evolving; it is outpacing the drugs we have to fight it.

“It would be extremely foolish for us to ignore MDR-TB at this point,” said Dr. Laxminarayan. “First the resistant strains are weaker than the non-resistant strains and then over time they pick up these other mutations which enables them to be just as fit as what they were with less resistance…”

He paused. “We would have an absolutely nightmare on our hands.”

The world is full of diseases that threaten us; it’s no surprise that we prioritize the ones that statistically affect the most people. But when it comes to an airborne, mutating superbug, can we afford to wait for the disease to affect many more?

Learn about drug-resistant TB in Chapter 2 of a four-part series on tuberculosis, supported by nonprofit Aeras, called Exposed:

See all the Exposed films at aeras.org/exposed.

the global epidemic we’re not talking about.

I had no idea.

After nearly four years of working with various nonprofits, I consider myself relatively knowledgable about diseases that afflict the world. Relatively. But when my pal Simon from GATHER rang me up and told me about tuberculosis — I was honestly shocked.

TB is ancient. We as humans have been wrestling with it, coughing up blood because of it, spreading it through the air, and dying from it for centuries. The disease is a slow killer; the bacteria takes months to grow, has the ability to hide in the body’s tissue, all the while eating away at you and laying you to waste if untreated over time. We’ve had a helluva time fighting it — it’s a tricky bug to snuff out — and it continues to kill more than 1.4 million people each year. The only vaccine we have for TB is only effective in very young babies, and doesn’t prevent the most common form of TB — pulmonary (airborne).

Ok, so TB is the second deadliest infectious disease in the world… that’s bad enough as it is. But there’s something even scarier to consider: TB is mutating. It’s getting stronger. Drug-resistant strains of TB are popping up all over the world — tuberculosis that cannot be treated with drugs that we currently have to fight the disease.

Few are talking about it. Few understand that TB is a threat in the world today (even, I found, in countries were the disease rates are alarmingly high).

In short: an airborne, deadly, and potentially drug-resistant disease is gaining on us.

The stories of those who’ve survived, who work each day to fight the disease, who are working on new technologies to fight TB… they have gone largely untold. That was my biggest motivation for diving into this project; a four-part character-driven series on the race against TB.

Watch Chapter 1: The Global Epidemic -

See it on aeras.org/exposed here >