My Work in Kenya: Cervical Cancer Screening

I’m working with a pilot cervical cancer screening and prevention (CCSP) program in a rural area of Kenya on the shores of Lake Victoria.

I first became interested in this topic while working in Moshi with Minjeni Women’s Group (some of you may recall the original ‘moshi moments’ stories). During that time, I learned that cervical cancer – one of the few highly preventable cancers with early screening!!! – is the leading cause of cancer death in women in Eastern Africa. And no one knows. So women get diagnosed when the cancer has reached advanced stages and all that can be offered is palliative care. Oftentimes even getting palliative care is a challenge. So women are dying. They are dying painfully. They are dying unnecessarily. They are dying without anyone saying a word. And when you hear a story like that, it’s hard to forget.

I couldn’t forget. Throughout medical school, it kept coming back to me. We had tried to link women in Moshi to screening services, but the screening services were practically non-existent. We failed. But I couldn’t forget. In medical school, I got involved with some research examining provider’s knowledge of the HPV vaccine, I joined forces with a similarly crazy med student to start a women’s clinic offering pap smears to homeless women (and now trying to offer Garadasil, the HPV vaccine), and I kept thinking about the women back in East Africa dying of a preventable cancer.

It only seemed natural that when I started to look at research fellowships back in Africa, that I would hone in on cervical cancer screening projects. And so I found my way into a research project in Kenya run through Family Aids Care and Educations Services (FACES), a partnership between UCSF and the Kenyan Medical Research Institute. I received funding through the Doris Duke Clinical Research Fellowship and launched myself into a year dedicated to improving cervical cancer screening in a little place on the lake.

So that’s how it all started. Now I’ll tell you a bit about what I’m “supposed” to be doing and what I’m actually doing. For the fellowship, I designed a study to look at how we can improve patients’ understanding of cervical cancer screening and thus improve screening uptake. My study design is a randomized control trial of an educational intervention. That’s a fancy way of saying that I am dividing women into two groups – one group gets a short health talk about cervical cancer and the other group doesn’t. Then we compare the two groups by surveying them about their knowledge and attitudes and then checking to see who ultimately goes for screening. It’s a simple idea that I spent months pouring over the details of how to execute. And then I spent several more months waiting for approval to start my project.

See, all clinical research must first be reviewed and approved by an ethical review committee before it can commence. This is generally a good thing. It serves as an important check to ensure that patients are not being put at undue risk for harm and that they are properly consented about any research in which they participate. Unfortunately, it can also be the bane of a researcher’s existence. The waiting game in Africa is notorious and naturally, ethical review is no exception. So I have spent the first three-quarters of my fellowship (yes, 9 months) waiting. Waiting is not so bad when you know you have to wait. What is challenging is the continuous string of “tomorrows”… the anticipation that approval is just around the corner… the frenzies of preparation that are ultimately wasted. As the cycle repeats itself, you finally learn to stop preparing, to stop expecting. And when you finally release your expectations, a subtle calm creeps in and a way forward emerges.

For the last several months, I have been visiting our screening sites. I’ve mainly been learning how to drive on insane 4WD roads and fix my car when it breaks - seriously two of my biggest accomplishments this year. I’ve also been trying to understand what is going on at our screening sites and trying to provide support and ideas for improving screening, but never launching into full-blown program management mode because every other week I thought I’d soon be pulled into full-blown researcher mode. And then a little over a month ago, I gave up. I fully released this idea that my intended study would ever start. And I ramped into program evaluation and improvement mode.  I started thinking more long-term, more big-picture. And I loved it. I don’t regret my first several months here. I think my expectations of starting a study helped keep me in a place where I was able to observe, build relationships, and slowly understand the reality of the barriers to screening. I found myself pulled into the service delivery challenges at the various health facilities – the systemic challenges of inconsistent supplies and staffing shortages that chronically plague the health-care system in Kenya. I stumbled upon the science of program implementation.

So I am now in full-blown program evaluation mode, trying to figure out how a small research-based screening program can be scaled up and ultimately be incorporated into a national screening program. Big dreams. It will take time. But I’ve learned how to wait… until tomorrow. In the meantime, I’ll practice driving through the mud.

Reflections on A Genocide

Walking down the streets of Kigali the absence of smog, traffic, garbage, panhandlers, roadside peddlers and touts is striking. The buildings are beautiful and new. Plastic bags are nowhere to be found. People are friendly. You feel safe. Corruption hasn’t emptied the coffers. Development has taken off. You don’t feel like you are in the middle of an African capital city. You don’t feel like you are in Africa. (Almost.) Even the open air markets seem orderly.  Perhaps a bit too orderly. Perhaps a bit too controlled. But quiet, beautiful, and safe nonetheless.

It’s hard to imagine that a genocide of over a million people occurred in this tiny country less than two decades ago. It’s hard to imagine, but it’s impossible to forget. Most of the adults here lived through it. Looking at men and women my age, I can’t help but wonder what they experienced 18 years ago. But I don’t dare bring it up. It seems too sensitive, too close, too painful to bring up with a stranger on a taxi ride or on the side of the street. It’s not just the normal political banter that you can toss back and forth. It’s too deep, too raw, too personal.

So I went to the Rwandan Genocide Memorial in Kigali. And there you are confronted with the horrific history of this place. The ethnic divisions established by the Belgium colonial rule, the subsequent decades of violence and discrimination, the systematic brainwashing and careful planning of an annihilation of a people, the blatant lack of a response by the international community, and the loss of over a million innocent lives. I walk through the memorial, reading every word, looking at every picture, taking in a deep breath over the rows of mass graves. I hold it together. Until I reach the final exhibit.

The children. Pictures of children, under which is written their names, their ages, their favorite foods, their favorite games, and then how they were killed. How they were murdered. An 8 year old boy beaten to death by a club. A 4 year old boy machetted to death. A 7 year old girl stabbed in the eyes and the head. A 9 month old girl burned in her mother’s arm in a church. He liked to play soccer. Her favorite food was chocolate. How did this happen?

How can we do this to each other? How are we capable of such violence? This is not a single, isolated event. It has happened over and over again. What makes people turn on their friends, their loved ones, and treat them with such brutality?

It’s strange being in Rwanda, asking these questions, especially on this particular day. Today is March 4^th, 2013. Today is election day in Kenya. Five years ago Kenya’s elections turned violent, with over 1,000 people killed. As one tribe turned against the other, as the roadblocks were put up, as the machetes were wielded, as the churches were burned, as neighbor killed neighbor and husband killed wife, it looked like Kenya was on the brink of becoming the next Rwanda. The violence was brought under control, but the issues were not resolved. And now Kenya is preparing for round two. Most Kenyans are proudly voting and desperately praying for peace. But their idealism is gone. Workers migrated back to their home region to vote, criss-crossing the country. Mamas stocked up on food, water, and phone credit in anticipation of a potential shut-down. Businesses ran down their stocks in case of widespread (or targeted) theft. Everyone hopes, but no one believes. Because they know it can happen… again.

How does this happen? How do we stop it? What makes us capable of such violence? What makes up capable of love and compassion? And what makes one person risk their life to save a fellow human being while another person joins the violence? And if placed in that situation, who would you be? Who are you now?

I left Kenya during the elections. I have that option. I can’t vote. I can leave. Is that right? Can I say this isn’t my fight? Can I say that I’m more likely to be a burden than a help if things get bad? That’s certainly how I felt the last time I was in Kenya during the election violence. Do I believe that? Yes, I do. But there is still a fluttering of guilt, a feeling that I abandoned my fellow humans… a reminder that the world fled Rwanda.

Croc Lady

“I just imagined the crocodile chewing on my head and I couldn’t take that imagine, so I started fighting again.”

-       Shirley, age 84

So I finally got my glimpse of a Kenyan Cowgirl. Introducing Shirley, one tough cookie… or maybe we should be more direct and just say she is a total badass!

Yup, Shirley is 84 and lives alone on a little island on Lake Biringo. She has spent the last several decades living on that lake, raised her kids on that lake, and swam in that lake everyday for thirty years.

And about ten years ago, she was out swimming like usual when a crocodile attacked her. And she fought it off. She describes how at one point, she looked down at her arms and saw what a tortured mess they were and thought, “well, I should just let him take me, but then I just imagined the crocodile chewing on my head and I couldn’t take that imagine, so I started fighting again.” She won.

As she sits at the table, her right arm curled uselessly again her body, a wine glass carefully held at the end of a disfigured left arm, she chuckles and says “aw, I knew that crocodile and I don’t blame him – he was hungry”. That’s quite forgiving of you, Shirley. She continues, going up to bat for the creature that tried to eat her, explaining that it had been a tough year and there was little food for the wildlife at that time; saying she should have noticed the signs and known better. They caught and killed the crocodile and he did in fact have an empty belly. Still not sure if I would be as generous as her towards it though.

Shirley: Kenyan Cowgirl, Crocodile Survivor, Genuine Badass.

So when you think you’re in over your head and you can’t handle something… think about how it could be worse… how you could have a croc chewing on your head… and keep fighting… like Shirley.

Anthropological Study of the Kenyan Cowboy Tribe

There is an interesting little tribe in Kenya called the “Kenyan Cowboys” or more colloquially known as the “KC’s”.  Often overlooked by anthropologists, this small group has a fascinating culture quite different than their neighboring tribes. There origins are European, quite often British, but they and their forefathers were born and raised in Kenya and thus they are uniquely Kenyan.

Their reputation is not the most flattering. They are known for being a bunch of “loud, privileged, racist drunks.” Born and raised in Kenya, they often prefer gallivanting around the bush, running far away from the quickly expanding urban sprawl. 

Although they may be a bit wild in more ways than one, they are also quite handy and can usually fix your car, your tractor, or your broken window. They can find their way out of a sticky situation (that they probably created themselves). They can get a job done and get it done well. They manage a variety of businesses, from tourism to agriculture. They understand many of the systemic problems that plague East Africa better than many of the “non-racist” philanthropists that come in to throw money at a bad situation. They care about the environmental and social issues around them, even as they rudely call for the “help” to serve them their tea.

They contribute a great deal to Kenyan development but are not regarded as true Kenyans by the government. Many do not own Kenyan passports and must buy work permits every year in order to remain in Kenya, many cannot vote or in some way feel disenfranchised from the electoral process. They are loud, obnoxious, and rude in many ways but must quietly bow their heads in many others.

They are white Kenyans, they are the KC’s.

So when a dozen KC’s rolled into Mbita one weekend, the anthropologist in me couldn’t help but put on my participant-observer hat and study them. Little did I know, that I was about to witness a rare and sacred ritual of the KC’s: the stag party. It took me awhile to figure out exactly what ritual was taking place. When introduced to “the stag”, I figured that was just a nickname. It wasn’t until well into the ritual that I realized a “stag party” is our version of a bachelor party. Anthropology game on!

As a young female attending a bachelor party, it is difficult not to alter the natural environment, but such is the plight of a ‘participant observer’ (note: this is truly an anthropological method and not something that I just made up!). I believe my presence did not dramatically alter the natural course of events. The KC’s proved themselves to be extraordinary drunks, menaces to the locals, and crude sexist pigs. (Though I wonder if this would be any different at a bachelor party for men of any other tribe.) Although I cannot and will not excuse this inappropriate behavior, when removed from the group chaos, some of their better traits were also revealed. One-on-one, they could fix my car, clearly articulate strategies for better environmental management of the country’s natural resources, and proudly talk about their little kids (note: although this was a stag party, all of the men were married or nearly married). And so with time, my horror over the drunken savagery transformed into a reserved fondness for these notorious tribesmen. Now I just wish I could get a glimpse of the womenfolk…