People are fighting in this war

People in Sierra Leone are not only fighting this invisible, deadly virus, they are fighting against huge amounts of poverty (the country is among the bottom countries on the Human Development Index) and a grossly inadequate social welfare system.  Sometimes they are fighting with no supplies, like the cases we heard of a maternity nurse who was performing deliveries without gloves and the driver who couldn't access chlorine to clean her ambulance of the remains of human suffering.  It angers me to hear of these situations, which should not happen in an epidemic of this proportion, but it's hard to know who's to blame.  To Susan and me it really seems like everyone, from the Ministry of Health to the CDC, to the international and local NGOs, are working hard and trying their best.  The most heartening stories for me to witness were those about ordinary about Sierra Leoneans fighting for each other. As we prepare to fly home from this beautiful, heartbroken country, these are the hopeful stories that I want to tell.

My favorite prevention story was told to us by staff at CCYA, a local NGO that focuses on young people's development and leadership.  Their staff were involved in a case where a family wanted to dignify their dead father with a burial in his hometown.  To get through the checkpoints, the family sat the dead father in their car and dressed him like a passenger.  They then headed to their father's hometown and asked their relatives their to receive them.  The relatives initially said yes, they would receive them, as is customary. While the corpse was making its way to the hometown, community members intervened with the relatives, pleading with them not to accept the corpse and the people in the car who were exposed to Ebola (Ebola corpses are very contagious).  Many community members, including CCYA's leaders, spent time convincing the father in the household not to accept the corpse. He eventually conceded and refused the visiting family.  Several people in the car with the corpse later died.  This story speaks to me about the power of community-based networks to intervene, persist and ultimately prevent transmission.

We also witnessed first hand how Sierra Leoneans are working hard on surveillance and quarantine.  We tagged along with a district surveillance officer, Musa (a medical student), and a contact tracing team in Freetown.  Musa was assigned to the area where he lives so he knows the streets well.  He had the lab reports from the command center and it was his job to go out and follow up on the positive cases.  We visited two households that he had recently quarantined due to a woman who had recently tested positive and was now in a treatment unit.  There was a rope around the two quarantined households and the people were out in their yards. Musa and his team spoke to them on the other side of the rope.  The families were quite agitated and upset about their conditions. Food and supplies had not been delivered to them. There was also a man there who had traveled to the area from up-country and resented the fact that he had to be quarantined. Musa and his team spent at least half an hour convincing the people to stay under quarantine and asking them to be patient for the supplies (as I mentioned earlier, coordination of supply delivery is a problem).   They also told the husband where his wife was taken for treatment.  It was impressive to see Musa and his team -- how much they had learned about the dynamics of the epidemic, how committed they were to doing their jobs and connecting people to resources, and how they seemed to care about the people they visited.

The effects of this epidemic on children are the hardest for me to see. We saw one very poor, quarantined household where a mother lost her infant to Ebola.  There were about 12 children, most of them toddlers and babies who were all climbing on top of each other, and they had about 3 meters space to play.  The mother's look of trauma was one that I will not forget.  And all the shell-shocked parents and children can't leave, they have to just sit there for 21 days while they watch their children and hope they will survive. Musa couldn't do much for them except check to see if anyone was feeling unwell. I felt badly that more couldn't be done. It's hard in this outbreak - you can't even reach out and comfort someone, you can just hand them something across a rope.

But there was another story about children that was somewhat positive.  We went with Musa to  a quarantined household where three children, ages 8, 4 and 2, were sitting inside with the corpse of their dead father.  Their mother had already died of Ebola. The burial teams had not come to pick up the father's body for over 24 hours and there was a rumor that the burial teams were on strike because they had not been paid.  Community members were gathered outside the house and were very concerned, none of them wanted to touch the children because they feared they were contagious, but they were worried that the children would starve. With Musa and the CDC's help, a burial team finally arrived.  Musa then called the child protection hotline to take the children to an orphan interim care center, but the person who answered said their vehicle was not working.  After many phone calls and a visit to UNICEF by Susan, a vehicle was dispatched to get the children.


Susan and I are glad that we came here. I have to admit that it was a hard time to be away from the U.S., with our own country's problems to work on and wanting to be a part of that. It was also scary  to come to a place where we knew that we would be at risk.  But it wasn't as scary as we imagined. We enjoyed listening and hearing ordinary people's stories, and learning more about the challenges in stopping this epidemic. Susan even offered some suggestions which I am proud of her for and I hope will be heard. She suggested that the radio, which everyone listens to, offer some programming specifically for children who are not in school (this was also done during the war). We have heard that people are now working on this.  She also suggested that the child protection teams be better integrated with the surveillance teams, which seems very important to caring for orphans and also for mitigating the spread of the disease through children.

I am very impressed with Mama Salone's people. I will be thinking of them and hoping hard that they win this fight soon. I hope to come back some day and enjoy some good times together.
Ah tell god tanki,
~Nina

Commodification of Survivors

Ebola survivors have been through hell.  Just imagine the pain, the fear, staying in an Ebola Treatment Centre with people dying all around you every day.  But they are the lucky ones.  And as the number of cases grows, the number of survivors also grows. 

They are in great demand. 

·       To make the case that it is possible to survive, they are used in radio, television, posters, even smart phone apps. 

·       Because they have antibodies to the disease, there are stories that their blood is traded on the black market and more reputable stories about the use of plasma therapy.  So their stories and their bodies are valuable.

·       They have been called on to work where others dare not, most frequently with children whose parents have died from EVD in OICCs.  (Let’s hope these are short term jobs as the crisis ends.)

Nina and I have been interviewing people on the streets about what they know about Ebola, what they do to protect themselves, whose messages do they trust, and so on.  But many of our interview subjects have not come close enough to the system to have much to say about it.  So earlier this week we were thinking that it might be nice to talk to some survivors, to hear about their experiences in treatment and to get their recommendations for how to improve the system. 

A colleague here shared the contact information of a survivor, and head of a survivors group organizing in Freetown.  I called to see if we could set up a time to talk, and hear more about the group they were organizing.  He wasn’t sure, and complained that he’d already been called on to talk on the national television station.  He said he’d have to get something out of it.  I asked how much and he said $100.  In all my years of interviewing people in Sierra Leone, this is the first time I’ve been asked to pay for an interview.  I certainly don’t blame the man for trying to get paid.  When I told the story to one of my Sierra Leonean friends who works in the NGO world, she said he’s probably being contacted by NGOs who are scrambling to put together proposals to work with survivors and get some of the Ebola money that is reaching the international NGOs now and probably soon to trickle down to the local NGOs.  To me, it was just a very clear symbol of the commodification of survivors.

One last story.  A former colleague of mine lost six members of his wife’s family to Ebola over a week and a half period in October. The wife told us her awful story. One of her brothers was sick, but survived.  Over a beer, I asked my former colleague how his brother-in-law is doing now, or whether they ever talk about what happened in the Ebola Treatment Centre.  He said he doesn’t want to talk about it, people dying all around him.  So now my colleague says when they come together they “play and laugh” and try to help him forget.  It’s not easy. 

Honestly, this is why I believe in ethnography as a method. When I was in Sierra Leone during the war and working with former child soldiers I had the chance to take the time to build relationships with people over time.  I never asked anyone “what happened to you during the war?”  We talked about football, or America, or whatever.  If they felt like opening up, I was ready to listen, but to ask someone directly to talk about their trauma always seemed unethical or even inhuman to me. 

Community Organized Checkpoints

A banner hangs above the entrance to a Freetown community.  There is a small covered area with a few benches, a bucket with water and soap to wash your hands, and a young man with a laser pointer thermometer.  He asks me to wash my hands, and I do so (for probably the fifth time today.)  He says my temperature is 31 degrees (or 87.8 degrees Fahrenheit), clearly not correct, but part of the standard theater. 

I ask if I can talk to them about the checkpoint, and I am directed to a woman sitting on the nearest bench.  After the informed consent process, we begin.  During the interview, people are passing through the checkpoint, washing their hands and having their temperatures taken.

Susan:  So, you said you all organized this place?

Woman:  We have one brother who, you can see his name up here (written on the banner), [name redacted].  So, he thought it was a good idea to help the community.  

Susan:  He lives here?

Woman:  He lives here.  So, he said let’s organize this Ebola center, where people can wash their hands, because we don’t have anyone in this community who has been infected by Ebola.  So we’ll make the thing continue, and let it not infect anyone inside the community.  So we took the bold step to do this kind of thing.  They don’t pay us, but we just give our voluntary labor.  So, we can be with people, do things well, no problem.  Around 10 to half past 10 at night then we’re off. 

Susan:  So, do you stop people? Say they can’t come inside if you don’t know them?

Woman:  Yes, if there are people who want to come in here, if you’re a stranger, if we don’t know you, we send you away.  We say not to come inside here to bring the sickness, because we don’t know you.  But if we know you, we don’t have any problem.  We accept you to come inside.  But if we don’t know you, we will tell you to turn around and go back.  Until you have someone to come and say, “this is my person.”  So then we can give you space to come inside, but we’ll still be watching.  If anything happens concerning Ebola, we won’t go along with it.

Susan:  Have you all reported to any authority in the city to say that you’re here?  To say, “we’re blocking here” or “we’re doing this”?  Do you understand?  Is there any coordination with any other….  Police, or, I don’t know, Ebola response effort?  Or you just did it?

Woman:   Yeah, we just did it.  Because we didn’t see anyone take the initiative to come do something like this.  We didn’t see the councilor, we didn’t see the Minister, we didn’t see anybody.  So this man here (gesturing towards the name on the banner) he thought it was a good idea for him to do this thing.  Because we were looking for the councilor or the Minister to come to the community, but we looked and didn’t see anyone, so we decided to do it for ourselves. 

Susan:  Well, that’s fine.  Is there ever any tension here at the checkpoint?  Like, someone says they don’t want to stop?

Woman:  (laughing) Yes, exactly what you’re saying.  Actually, we have one case right now.  Look at the car’s license plate number (points to writing on the brick wall behind us).  This is the number Ma’am. When we said to wash his hands, the driver refused and said he wouldn’t get out of the car.  We said, “why?”  He refused to explain, and caused a scene.  He said, “When Ebola has come and you’ve got money out of it, you want to eat the Ebola money.  You think we want to join you?” 

Susan:  Did you ask him, “Which money are we eating?” (laughing)

Woman: yeah, we asked him, “Which money?  Where’s the money that Ebola brought for us to eat? So if you know that Ebola brought money for us, come join us!”  That’s what we often tell them.  It’s not really easy for us here.  Some people curse us, and say, “leave me alone, I’m tired of washing my hands.  All the time!  I’m tired of washing my hands!  I’m cold.”  You know?  They have some words they can bring, so we are just patient.  After all, it’s voluntary work, we don’t want a problem, so we say, “OK, continue.  If you were the only one to get sick, fine.  But if you get sick, it will affect everyone in your house.  So we feel you should wash your hands.  Because if you have the sickness, and you make people inside your house get it, then it’ll affect all of us.” So that’s why we say pa-o-pa (no matter what), you should wash your hands.  If you don’t wash your hands then turn around and go back where you came from.  If you’re coming inside this community, you should wash your hands. 

  Susan:  So, you all don’t have any more doubts that Ebola is real?

Woman:  (enthusiastically) No, Ebola is real.  Ebola is real because of the way they show us, it’s a sickness that doesn’t have a cure.  If it affects one person inside this house, then it will affect everyone inside the house.  So we know Ebola is real and it’s here. 

Susan:  And you’ve received all the messages about how to prevent it?

Woman:  Yes Ma’am.  They say you should wash your hands, don’t touch, avoid body contact – ABC.  So we have all those things. 

Susan: Do you think everyone in your community is following the rules?

Woman:  Yeah, no problem.  We’re doing it.  We’re not perfect, but we’re doing our best.  Because some people when you tell them to wash their hands they refuse, but later on when we talk to him and encourage him, he turns around and does it. 

Susan:  Do you think everyone in Sierra Leone has got the message?

Woman:  Yeah, because the radio, the television, you sleep and wake up and that’s all that’s on right now.  Ebola, Ebola.  Ebola, Ebola.  So that’s the song we have now:  Ebola, Ebola.  Even a small child, if you ask him what’s here right now, he’ll say “Ebola.”  So they know it, they say, “Don’t touch me.  Ebola.  Don’t shake my hand.  Ebola.”  So, we know, Ma’am.

Susan:  So why do you think people are still getting Ebola, if everyone knows how to protect themselves?

Woman:  Because people are stubborn (tranga yes).  Like how the Minister and the President say, it’s the educated people who are the most stubborn.  The ones who have learned the most book are the most stubborn.  The reason I say they’re stubborn, because if you say, this thing here, don’t do it, they’ll say pa-o-pa (no matter what) I want to do it.  So the educated are stubborn.  Because if you tell them, this thing here, if you do it, it will affect you.  He’ll say, well, I want to take the risk.  If this thing will be hard for me or won’t be hard for me.  So the educated are stubborn. 

Susan:  So are they the ones who catch it more often?

Woman:  The Ebola gets them, the educated ones. 

Susan:  Interesting.

Another woman sitting nearby: This community effort, we thank God for it.  We really guard it, and that’s why we make it strict here.  We don’t have any problem.  So, we thank God for that.  Let God continue to do it for us more and more.  That’s why we don’t joke with anybody who passes here.  What we say they should do, they do it. 

Susan: So is it mainly the women who organized this thing?

Woman:  The men too.  It was the man who volunteered, [name redacted]. 

Susan:  Yeah, I see his name there.  So, he paid to make the sign, and ….

Woman:  He did everything for us.  He made T-shirts for us.  What we eat here, he provided it for us. 

  Susan:  So, what do you think about the government’s response to the Ebola crisis?

Woman:  Well, they’ve responded.  No problem, because he is trying.  All the best, he is trying.  He’s going all out to see that this illness is finished.  He’s going all out, he’s praying to make the sickness finish.  Because everything we wanted to do inside 2014, we weren’t able to complete it.  So he is praying, and we really see that he’s stressing this illness.  Because it’s not his own will that this sickness should be here at this time. 

Susan:  You mean, Pa Ernest? (the president)

Woman:  Yeah, Pa Ernest (laughing). 

Susan:  What about the international community?  (“the whites”)

Woman:  They are also helping us.  They are also trying to make the illness be done.  We’re happy for them.  We’re happy for the ones who’ve come to help us.  We appreciate them.  They didn’t just leave us here, they came to help us.  So, we’re happy for them, the white people who’ve come, to come help us and see that this sickness is done. 

Susan:  So, if you see a person here with some of the symptoms, maybe he has fever, maybe he’s begun to vomit, what would you do?

Woman:  Well, we would call 117, for them to come collect him and take him away.  But thank God, we haven’t seen anybody like that.  We haven’t seen anybody who is shivering, and then vomiting, then you see some symptoms around.  Thank God for that.  We haven’t observed it yet.  Because if we observe it, we won’t wait until it’s worse.  As it begins, we’ll call 117. 

Susan:  You wouldn’t be afraid the person would say, “oh man, why are you reporting me?”

Woman: No, I wouldn’t be afraid.  Because I know it’s a family issue (it affects us all).  If I say I’ll wait to report until it’s worse, then I will be a victim. 

Susan:  Well, that’s all my questions.  I don’t know if you have any questions you want to ask me, or anything else you’d like to say that I didn’t ask you about. 

Woman: No, I don’t have any questions.  I just appreciate you, that you came and interviewed me.  I’m happy about that, because we were hoping we’d have someone come interview us and ask about the community, how we were able to get this help in our community.  I’m really happy that you came to interview me. 

Susan:  Do you mind if I take your picture? 

Woman:  I don’t mind at all!

The MSF Community-Based Model of Treatment

I have always admired the humanitarian organization Médecins Sans Frontières, or Doctors Without Borders (www.msf.org), without knowing the details about what they do on the ground. We had the privilege of touring an MSF treatment center being constructed at a school in Kissy, Freetown (there were no patients there yet).  Since school is closed right now, they are using the school grounds for the center.  Fernanda Falero with MSF Spain gave us the tour.  Fernanda is a humanitarian anthropologist with a specialty in Ebola. MSF has been responding to VHF outbreaks since 1995, and Fernanda started in 2006. As an anthropologist she does her best to make the treatment processes transparent and participatory. Her initiatives, she hopes, help to clear up misconceptions about Ebola, make treatment more accessible and acceptable, and involve community members in prevention (see below).

We have not visited other centers, so we are not sure if these efforts are unique to MSF. Sierra Leone has treatment centers around the country that are being run by different groups, including the Sierra Leonean government,  Partners in Health, Save the Children, the British Military, and the Chinese, Canadians, Nigerians, and Italians.  Each one of these groups comes with their own protocols, logistics, data and staff.   There is even a debate among some of them about whether to provide IV therapy to Ebola patients (http://www.nytimes.com/2015/01/02/health/ebola-doctors-are-divided-on-iv-therapy-in-africa.html?_r=0). From a patient and community perspective, interaction with the centers likely varies depending on which group built a center close to them.  I bet that not all centers employ the kinds of community outreach that Fernanda and her team do.  Also, it's no surprise, given all these NGOs, that people here perceive that internationals are profiting from this epidemic (more later).

From what we learned today, MSF seems to have a thoughtful model that reaches beyond medical treatment and into the community. And the fact that MSF hired Fernanda, an anthropologist, to work with their team may be unique and useful.  It would be great to someday see the MSF model formally evaluated.  Here are a few of the ways in which Fernanda and her team intend to employ transparency and community participation in their work:

1. The treatment center is open to the community as much as it can be.  On the perimeter, the center is surrounded with open chain-link fencing so that community members can see inside. This is in contrast to some centers that put up opaque walls on the perimeter. Community members are invited to visit the center. Family members are invited to visit patients, and if the patient is very sick, one person from the family can wear PPE and go inside to visit the patient.  MSF is also producing a video that shows the entire process of detection to treatment to survival that they will show to the surrounding community. 

 2. 150 community members, both skilled and unskilled workers, are being paid to construct the center.  Fernanda believes that this increases buy-in of the community for the center. We met the Member of Parliament whose constituency is in this community.  He said that as a politician people always ask him "What have you done for this community?" and now he can say he has done something, which makes him proud.  He also said that this center brings resources to the school, which will be good for the school once it reopens.

3. The family will be allowed to visit their sick loved ones in the treatment unit. Family members can wear PPE and visit their sick loved ones. This is important because people have not wanted to send their loved ones to treatment centers because of fear that their loved ones will be mistreated or will never return. The patients who are well enough to walk can meet their family members outside the sick (red zone) tent. Patients and their family members are instructed to sit two meters apart during the visit. Below is Fernanda with the poles indicating the two meters distance.  Family members can bring anything to a patient (food, etc.), knowing that whatever goes into the treatment center will not come out. MSF also provides confirmed patients with phones so that they can communicate with their loved ones while they are in the treatment center.

4. Once a patient dies, MSF will consult the family on what to do with the dead body.  It is critical for the family to believe that their loved one has received a dignified burial. Fernanda explained: "When the body is prepared for burial, the family is allowed to come in and have a moment with their loved one...the best way to do this is to sit down with the people and talk. You explain the protocols and why the body cannot be manipulated because of the transmission of infection. Then we ask them  'Do you have any alternative [ritual other than touching the body] that your heart and your soul will feel fine with?' Because it’s a special moment. I did burials in other outbreaks and it worked fine. It’s just you need to take that time to listen.... And then when it comes from them, then it’s fine because they accept it."  

It seems so logical when Fernanda says it, and it seems like this process would help allay people's fears in Sierra Leone that dead loved ones won't make it to the afterlife. We wish this consultation with family members would be the usual procedure. We have heard stories of a corpse either left on the ground for hours or days until the ambulance picks it up or the family buries the corpse themselves, which puts them at tremendous risk of infection. 

5. MSF hired health promoters from the community and is training them to talk to their community members about prevention. Below are some health promoters who were just being trained.  This woman is a teacher who has not been working because school has been closed due to Ebola. She was not afraid, but rather excited to have a job and talk to people about prevention.  As Fernanda said: "[The prevention work is] what needs to be done at the level of the community. We have to close the tap. We don’t want more transmission, we don’t want more cases. But.. we cannot reach that tap from here (the treatment center). We need to empower people to be part of the solution to their own problems." We have heard that health promoters have made a difference in reversing the tide of this outbreak and hope to see them in action soon.