Some Ebola posters

This poster is the most graphic one I've seen.  You can really see the diarrhea!

This one is just about safe burial.

Ebola is a Disease of Love

A friend heard someone say that Ebola is a disease of love. People know that they are putting themselves at risk when they care for a sick child or loved one.  But who wouldn't do it? It is human nature to help someone who is sick.

I think it must be especially difficult to know what to do when a young child is sick. Young children require care and may not be able to communicate when they feel ill. Sierra Leone has the highest child mortality rate in the world at 182 children who die by the age of five per thousand live births per year (http://www.unicef.org/infobycountry/sierraleone_statistics.html, 2012).  Approximately 12% of deaths of children under 5 in Sierra Leone are caused by diarrhea ( www.path.org/publications/.../VAD_rotavirus_sierra_leone_fs.pdf) and about 38% of the deaths are due to malaria (http://www.aho.afro.who.int/profiles_information/index.php/Sierra_Leone:Analytical_summary_-_Malaria).  Even if a child doesn't die from diarrhea or malaria, she or he is likely to have one of these diseases at some point.  So a mother may think that a young child's diarrhea is from ingesting unclean water or a child's fever is from malaria, not Ebola .  She may not want to call 117 because she fears that her child will be taken away from her, away to a holding center to await a lab test, where her child might get Ebola from others, or be taken to a treatment center and she might never see her child again.   Right now there are few health services for people experiencing problems other than Ebola. So, the mother might wait, or consult a community nurse or a traditional healer, in the hopes that her child is not infected with Ebola.. the mother then may become ill herself.  The people we met with today say they want to do more to prevent infections among nurses and traditional healers in communities.

Another point about love - many people in Sierra Leone feel that if they don't wash the corpses of their loved ones,  their ancestors will not pass to the afterlife. This is a real and powerful belief that is not so easily changed. The woman who lost 6 family members said that she was not allowed to wash her mother's corpse.  She said that one of her friends had a dream that her mother was unhappy because she was unclean. This dream haunts the daughter and adds to her grief.

Washing dead bodies and attending funerals frustrates responders to this outbreak because it is where they suspect that a lot of transmission happens.  Corpses are very infectious so people are warned not to touch them or be near them. Many people have stopped attending funerals now or are watching them from a distance, which is great because touching or kissing the corpse is also a tradition. Among people we talked to who had Ebola deaths in their networks, all of them reported going to the funeral but watching from a safe distance. But not washing the body is like a Christian condemning someone to hell (see Les Roberts' blog: http://pfmhcolumbia.wordpress.com/2014/11/28/les-roberts-day-53-what-r0-is-not/).  People persist in this behavior, even though Imams and Pastors have warned them against it.

Speaking of pastors, we saw a lot of people gathering together at church today. It was nice to see so many people out, like normal, in their fine Sunday dress.

So how can we get people not to wash dead bodies?  This is not an easy question to study.. we know that people are washing and burying corpses in secret when they know they shouldn't. People may not own up to it or they may just tell us what we want to hear. I think there must be some way to acknowledge that people need to be able to wash their loved ones' corpses, while reducing Ebola transmission. As I mentioned in an earlier blog, one of the innovations is allowing people of the Muslim faith to bury white clothes with their dead loved ones. But, still, maybe we need more of this... to somehow acknowledge the need to ensure ancestors' transition to the afterlife while reducing Ebola transmission.  In HIV there is what is called a harm reduction approach to transmission among injecting drug users - we don't try to change their drug using behavior, but we give them clean needles to inject so that they don't get HIV.  Would it be acceptable for one person to wash a dead body while wearing PPE (personal protective equipment)? What about assigning an elder or an immune Ebola survivor to clean the body? I'm not sure.

How do we prevent the spread of a disease of love? We definitely need to start by respecting people's feelings about their loved ones and their beliefs.  This is happening in many ways - we saw good evidence of this at MSF today (more on that later). Today Susan said that instead of messages that say "Don't do this!", how about we say "This is the problem. What can we do together?".  There are lots of things people are doing together in this fight.. we need to keep going.

Tracking Suspected Ebola Cases

One of the problems in this epidemic so far has been the lack of good surveillance data that can identify Ebola cases and potential transmission events. Epidemiologists might say that if we had good data, it would be easier to dispense teams of prevention workers to hot spots and stop Ebola transmission.  To understand the challenges of collecting good surveillance data in this environment, you have to understand how cases are tracked through the system.  This process has become clearer (but probably imperfectly clear) to me while we have been here in Freetown. The procedures that are being used here are the same ones used everywhere when outbreaks occur, and these procedures can work really well, as we saw they did in Nigeria.  However, the lack of coordination, a strong government and health system has created obstacles to the procedures working as they should.

If someone suspects a case of Ebola in their community or is a suspected case themselves, they are advised to call the national hotline (117) in Freetown.  I've read that only about three percent of these calls trigger a household visit for a suspected case of Ebola.  Once a household visit is triggered, a surveillance team goes to the house in an ambulance wearing full PPE (personal protective equipment), which I imagine is a bit scary.  At the house, the surveillance team then evaluates whether the person meets the case definition for Ebola (http://www.cdc.gov/vhf/ebola/hcp/case-definition.html):

1. Fever or symptoms, including severe headache, fatigue, muscle pain, vomiting, diarrhea, abdominal pain, or unexplained hemorrhage; and 
2. An epidemiologic risk factor within the 21 days before the onset of symptoms, including but not limited to exposure to: contact with body fluids of someone with Ebola, a dead body from Ebola, or a person who had symptomatic Ebola. 

If the person meets the case definition, the surveillance team washes the area with chlorine and then takes the person to a holding center where they await the results of a laboratory test for Ebola and malaria.  Today we heard from MSF that 48 hours is the fastest they can get an Ebola test result back from their laboratory (and this is probably the fastest in the country).  So for two days the person who possibly has Ebola is sitting in the holding center waiting for the lab result with all other cases that could possibly be Ebola.  If there are good and rapid lab services, people who only have malaria get identified and out quickly, reducing the chances they get Ebola.  However, if the lab services are not good, or if the person's malaria test was negative, the person waits longer, increasing possible exposure to Ebola at the holding center.  If the Ebola test comes back negative, the person is sent back home. However, it is possible that the person had Ebola all along but needed a couple more days before the test turned positive (remember there is a lag time between getting the virus and having a positive Ebola test because you have to be symptomatic). It is also possible that the person contracted Ebola while at the holding center. So, really, they will need to test again.  Then anyone who returns home from a holding center is supposed to be monitored daily and quarantined for 21 days.

Once a person has been confirmed positive with an Ebola laboratory test, that person provides a list of all people they have had physical contact with in the past 3 weeks (physical contact includes sharing the same room/bed, caring for a patient, touching body fluids, or closely participating in a burial www.ebolaalert.org/SOPct.pdf).  There is a team of contact tracers (in Sierra Leone many are volunteer medical students) who elicit and then trace the infected person's contacts.  All of these contacts are then monitored daily for 21 days for fever and symptoms. In addition, the contacts are quarantined for 21 days and given food, buckets, gloves and bleach. There have been some concerns mentioned to us that quarantined households have not been given enough supplies or food.  During the daily visits, the quarantined contacts are asked if there are others in their households have become sick. If anyone falls ill while under quarantine, they are taken to a holding center for the Ebola test.

A person with a positive Ebola test goes from a holding center to a treatment unit, if there are beds available. In the beginning of this epidemic, even people who had a positive Ebola test could not get a treatment bed because there were so few in the country.  People would stay at home and infect their household members.  Fewer people were reporting suspected cases to the hotline because they knew there would be no treatment beds for them.  Now there are a lot more treatment centers in Sierra Leone, which leads to improved surveillance and contact tracing. But no one knows the effect that those early days had on the response. Some people fear that people don't trust the hotline anymore. The other problem is that treatment centers are still not everywhere in the country.  A sick person might have to travel many hours to then wait for a laboratory test or a treatment bed.

Who is providing all of these services? The government of Sierra Leone is taking all the help it can get. This means that in the contact tracers might be hired by the WHO, but the holding center is run by MSF or another organization.  The burial teams are being largely run by the Red Cross. There is no one entity coordinating all these agencies, and therefore there is no one entity tracking identified or suspected cases.   Which brings me back to my point about surveillance.. without coordination it's nearly impossible to track people through the system, creating a huge barrier to precise data collection and monitoring.

Working at the Car Wash

There have been some unanticipated challenges to the fieldwork as planned.  (Aren’t there always?).  Our plan was to meet with people working in the response for various agencies, but also to do a number of open-ended interviews with regular people about whether they’d received the Ebola messages, whose messages they trust, and what behaviors they’d changed.  As a fluent Krio speaker, in the past I have found it pretty easy to strike up conversations with people on the street.  We start with an explanation of why I speak Krio so well, I then ask whether they have time for me to ask them a few quick questions, and 95% of the time people are more than happy to talk to me quite openly and enthusiastically.

What we didn’t anticipate was that the city would be on lock down for so much of our time here.  Most days, all shops lock at 6.  Yesterday, Saturday, all shops locked at noon.  (Thank goodness a friend invited us over to her house for lunch when we realized there were no restaurants open.)  This has meant that my usual hunting grounds for interview subjects have been sparsely populated.  Even the usually raucous Kroo Town Road market was deserted when we went by yesterday.  Our driver David agreed with me that he couldn’t remember ever seeing it like that.  But then we hit on an idea:  what about the youths who wash cars, they are always there. 

I came down from the vehicle and started chatting with the young men.  They were surprised I could talk Krio, and when I asked if I could ask them a few questions about Ebola, they took me to their Chairman.  (In Sierra Leone, groups of young men who are struggling to make a living are often self-organized into groups:  okada drivers union, cassette sellers union, etc.).  They took me to sit in the nicest chair, and Nina followed along.  I said she was my friend from America and that she didn’t speak Krio.  They said, “You are welcome mommy.”  I cleaned my hands with hand sanitizer, then handed the bottle to the chairman, saying he should keep it.  He handed it around to the about ten young men gathered there.

The first thing they talked about was their “sufferness.”  Things are much harder for them under Ebola.  The chairman said, “in fact, we shouldn’t even be out here now, but we just have to ‘dreg’ (struggle to survive.)”  They said that the police have always harassed them, but that it’s even worse now.  One young man said he was released from the police station only yesterday, and that he was charged with public gathering but really it was a shakedown. 

The good news is that they were all aware of the Ebola messages:  avoid body contact, wash your hands with soap, don’t touch dead bodies, don’t attend funerals.  (That said, we were all sitting pretty close together.)  One joked that as car washers, since they spend all day with their hands in soapy water, they have the cleanest hands in Freetown. I asked whether they believed Ebola was real, and they enthusiastically said yes; that, in fact, in October one of the car washers just down the road had died from Ebola along with his wife, and that they had left behind two small children who had survived Ebola.  The chairman said he had attended the funeral—from a distance, as required—and that seeing all the fresh graves at the cemetery had really convinced him that this thing is real.  I asked whether they would welcome the two children to come and visit them, and there was some disagreement.  Some said, “of course I would be afraid to be near them.”  Others said, “but the government has said that once someone is cured we shouldn’t fear them. We should embrace them.”  Then I asked, “So you believe what the government says?”  And they said, “Oh yes, in fact, the President visited us here!  He came to us and told us that Ebola is real and that we should protect ourselves!” (Our driver later confirmed that, indeed, it was reported in the news that the president had driven there with his own car and talked with the youth personally.)  I asked if they were happy with the government’s response so far, and they said there had been delays early on because things were politicized, but that they really believed the president himself was doing a good job. It was only that he had greedy people around him who were making things difficult.  One said, “If the president tells us, we must believe.  After God is the president.” 

We then asked, well, if everyone has got the prevention message, how are people still getting Ebola?  They said, “well, we here in Freetown are educated, but the people in the rest of the country still believe in traditional culture.  They are stubborn and it’s very hard to get them to change.”  We asked, “If one of you had a fever or other symptoms, what would you do?”  They all said, “We would call 117 and go for testing because we are here so close together, if one of us were sick it would put us all in danger.”  I pushed a little, saying, “really?  You’d turn your colleague in?” And they admitted, “well, we’d call in secret so they wouldn’t know it was us who called.”

I said, “Well, we don’t want to get in trouble for gathering in a group.  Any other comments or questions?”  Then they said, “thank you mommy, we really appreciate you taking the time to come and talk to us.”  As we were walking back to the car, one of them asked me for Nina, and I had to disappoint him and say that Nina is already married. 

My sense is that, at least in Freetown, there is no longer denial that Ebola is real.  The basic prevention messages are getting out there.  However, some of the measures taken to control people’s movement are having a real economic impact on the poorest members of society. 

Echoes of War

Nina’s making me look bad by posting so regularly, so I guess I’ll dive in. 

I’m finding it hard to know what to say about our time here.  I’ve been coming to Sierra Leone intermittently since 1987 when I first arrived as a Peace Corps Volunteer.  Since then, I’ve seen the country during the tail end of the war and during the decade long reconstruction afterwards.  As we move around Freetown, I keep experiencing moments of déjà vu.  Shops are locked and streets are empty after 6PM due to government decree, and it reminds me of times during the war when the streets were empty because of fear. 

We stopped by NERC (National Ebola Response Centre) Headquarters today to attempt to pick up our passes to travel through the quarantined districts next week.  It’s housed in the complex that used to be the Special Court for Sierra Leone.  An echo of the post-war period was the fleet of NGO vehicles outside the compound.  The driver commented that they are all circling around, looking for contracts.  That felt a lot like the post-war NGO-ization as well.  As happy as people are that international experts are here battling the virus, we also heard some stories of grumbling that expatriates were enjoying themselves on the local beaches.  I remember exactly the same story with the UN peacekeepers fifteen years ago. 

I am not the only one making these comparisons.  Several of the people we have interviewed so far have said things like, “this is just like the war” or even “this is worse than the war.”  One woman said, “during the war, if you needed to, you could run to your neighbors house and beg for a few cups of rice.  But now we all sit at home, afraid to even go to our neighbors.”  This war is about an invisible enemy, and perhaps the hardest part for Sierra Leoneans is that they have to fight it isolation from each other.  On the other hand, a professor friend told us today, “the war was worse than this.  Maybe people don’t remember, or they were in Freetown throughout so didn’t experience the worst of the war.”  People are also invoking the resilience they learned during the war, saying things like, “we survived the war, and we will survive Ebola, by God’s grace.”

I'm so glad Nina is here with me.  Not just because she is better about remembering the Clorox wipes than I am.  I think it would be easy for me to be distracted by my decades' long ethnographic project, and want to spend all my time thinking about what aspects of Sierra Leone's culture are changing or not as a result of this crisis.  Nina keeps me on track, always bringing it back to the question:  how can this knowledge help.  

On Transmission and Testing

To be in Freetown, you wouldn't necessarily know that this is a country with an Ebola epidemic.  I have been here for 3 days and have yet to see a person dying or vomiting in the street.  Our driver, who lives here, has never seen these things either.  Some of Susan's Sierra Leonean friends don't know anyone who has died from Ebola.  People still gather, albeit with caution. Yesterday there was a birthday party at the guest house where we're staying.

Nevertheless, there are messages about preventing Ebola everywhere.  The messages include: wash your hands, don't touch others, and don't attend funerals. Here are some of the many signs I've seen:

We have interviewed a few people so far and everyone says that they understand that Ebola is real (in the beginning of the epidemic some people did not believe it was real or thought it was a conspiracy).  People say that what convinced them that Ebola is real is knowing people who died.  They also say they are convinced that engaging in prevention behaviors is a good thing: they wash their hands, they don't gather, and avoid touching people. 

But.. if everyone is adhering to these prevention messages, then why are people still getting Ebola? Some people say that only rural people or health workers are getting it.  Another person said that mostly poor people get it.  These perceptions may be partially true. In Freetown, most of the people who have died of Ebola lived in a slum or a ward where people from the rural areas often stop on their way into Freetown.  However, we don't really know the demographics of people who died of Ebola because we lack good data (see previous blog post).

We asked a few people whose family members died how their family members got Ebola.  One person said that his mother contracted it while caring for her sick child and they both died.  Another woman said that a traveler with Ebola came from a rural area to her parents' neighborhood. The traveler was taken into a house in the neighborhood and subsequently died of Ebola.  Several people in that neighborhood also died, including 6 members of the woman's family.  She doesn't know how her family members first contracted Ebola, other than that they may have been exposed to the traveler. However, she does know that at first her mother was inaccurately diagnosed with HIV which may have caused her to delay seeking care. She also knows that her brother slept in the bedroom of someone who had died of Ebola (even though people told him not to) and that's probably how he contracted Ebola and died.

One problem with tracing Ebola transmission is the time lag between infection and diagnosis. Currently, Ebola can only be tested once there is enough detectable virus in the blood, which usually accompanies a fever. It may take up to three days after symptoms start for someone to test positive for Ebola (http://www.cdc.gov/vhf/ebola/diagnosis/index.html).  And people might attribute their fever not to Ebola but to malaria which is pretty common in Sierra Leone.

I'm not sure how people are being informed of the time lag for diagnosing Ebola.   We heard from the woman who lost 6 members of her family that after her mother died, her brother went to get tested for Ebola.  Apparently his symptoms were not severe enough and he was sent home without being tested (he probably did not meet the case definition).  The family saw this as a slight and lost trust in the medical providers.  Her brother later developed Ebola and died.

Tomorrow we meet with the CDC social mobilization team so I'm hoping we'll get some answers to these questions. Maybe we can also craft some research that will help them. Meanwhile, here is a picture of me at a Sierra Leonean buffet (the food was good!).

Challenges and innovations

Today we heard about some of the many challenges in this epidemic. These have not necessarily been reported by the popular media so I will share them here:

• Surveillance (tracking the number of Ebola cases in the country) is difficult and imprecise. Health workers who come into contact with a suspected case of Ebola are supposed to fill out forms that give very basic information about the person, including name, date of birth, etc.  They are also supposed to fill out whether the person traveled or had a contact with someone with Ebola, but this information is rarely filled out.  All the data are written by hand and then later entered into a computer. Right now the data entry to the computer is about two weeks behind the written forms.  Also each person is given a unique identifier (a sticker with a number on it) that is supposed to identify their blood for the health care worker and the laboratory. There have been some problems with people putting the stickers incorrectly on the forms.  All this makes it difficult to know who is getting Ebola and who is at risk for getting it.
• People want to know what are the risk factors for Ebola - who is getting it and how. But if the system can't collect the basic data described above, right now it seems impossible to collect more complicated data about how Ebola spread from person to person.
• There is limited coordination among agencies with similar missions. For example, WHO and CDC both have epidemiologists in the field who are supposed to be working with the contact tracers, workers who go to people's homes to find people with Ebola and ask them who they've been in contact with.  There is speculation that some households may be counted twice. Another example is that different agencies provide different goods. For example, each house that is quarantined with a case is supposed to get a bucket with oral rehydration solution, food, gloves and bleach so that others in the household can protect themselves.  We heard that there are different agencies providing each of these goods, and as a consequence these goods are not being delivered regularly. 
• Ebola can be treated with good hydration. However, when people with Ebola ride in ambulances to the treatment centers (which can sometimes be 5 hours away on a bumpy road), they are not given water to drink. 
• People can't find their loved ones. A person with Ebola can be taken to any one of the 10 treatment centers in the country and their families don't know where they go. Also a lot of people have the same names, making tracing loved ones even more challenging.

We also heard about some interesting innovations:

• Dignified burials are very important to the people of Sierra Leone, but are difficult to achieve given that corpses are so infectious. People are currently forbidden from attending funerals or burials. Corpses are treated swiftly by the burial teams. We heard from one woman today that when her mother died of Ebola, her mother's corpse was thrown on the ground in front of her community and sprayed with chlorine. This episode was naturally very upsetting to her daughter.  
• Nevertheless, we heard of two improved practices today when it comes to burials. One is that burial teams are allowing bereaved loved ones to provide white clothing that is buried on top of the corpse (it is a Muslim tradition to clothe people in white before burial, but because of Ebola the corpse cannot be wrapped in the cloth).  Family members are also allowed to see the burials from a safe distance. Some say that developing strategies to bring about dignified AND safe burials will be key to controlling this epidemic.