Les Roberts – “P.S. Realizing our Chiefs hide deaths for exactly the same reasons”

Les Roberts – Chicago, USA – April 23, 2015

What a lovely trip to Sierra Leone I have had. I worked with the coolest people… medical students, now contact tracer supervisors, having the education of a lifetime and not yet realizing it, former students and friends of former students. Being there in the era of panic and fear last fall and being back now was a wonderful contrast. Seeing schools start up again 10 days ago with that burst of joy accompanying quiet households and traffic jams for the first time in months was magical! But, what I wasn’t expecting is that the gifts of the trip keep coming even after being home.

I wrote a bit on April 9th about the chief’s lying or hiding deaths. I did not get into all the complexities then but with regard to reporting deaths and testing all bodies for Ebola, the chiefs are in a tough spot.  There are about a dozen dozen chiefs and thus at least a dozen dozen cultures across Sierra Leone, but in general, in the crudest of terms, the chief sits at the pivot point between the ancestors and the traditional forces of the universe and mundane world in which I walk. According to an amazing anthropologist named Joe Opala (who came to SL with the Peace Corps in the 1970s and never really escaped http://en.wikipedia.org/wiki/Joseph_Opala ), the traditional belief system tends to believe that the ancestors and the forces of the universe only want peace and calm. That is, unlike Christianity or Islam, their god-like forces have no capacity of wrath. I had never thought about this but if your god(s) only wants peace and calm, and you live in a world with tangible injustice and threats and things to fear, you need something other than your god to cope. In the traditional village, that is black magic, and most typically is controlled by secret societies. The secret societies have all kinds of beliefs about what needs to happen when an elder dies, or when something special or scary happens. Typically, the chief is the one who calls the secret societies to meet but is not an active member. On rare occasions a chief needs to be removed and they might poison him. The village women’s society tends to perform the female circumcisions, the men’s society that of males. In some real sense, the chief gets his standing within the village, and thus his power, by keeping the secret societies on his side. Thus, when the government says he will be breaking the law when he does not report the death of an elder but the secret society has other plans, he is in a tough spot. No wonder the chiefs often lie!

So, getting to the ongoing gift part… I had an interview a couple days ago with Jerome MacDonald at WBEZ in Chicago. I botched a couple of things (called the ancestors elders, got confused with my own double negative…) but it was by and large the friendliest interview I have ever had. He had followed this blog and he just kept asking questions which he already knew that I knew the answers. He was fascinated about this notion of the chiefs being in a tough spot and hiding deaths and that was mostly what we discussed. As I walked out of the studio, I had an image pop into my head from two days before that made me realize President Obama does the exact same thing as those chiefs. He never discusses how many civilians are killed by drones thus far. He ran a campaign to be elected in 2008 largely in opposition to the war in Iraq, but when discussing the costs and benefits, he and almost no leader, will ever admit how many Iraqis have been killed by us. And the reason is, because if they admit the truths about deaths they will lose support from a key constituent (the defense community) that is needed to maintain power. So again and again, spokespeople and elected officials avoid or lie about deaths for exactly the same motive as those Sierra Leonean chiefs. While however grim the topic of denied deaths anywhere, here is where the story gets nice for me.

When I was five or six years old, one day I accompanied my mother into the small dry cleaners’ shop that my parents used. Being an ignorant little kid, I thought nothing of it when I said to the shop owner, “Mr. Bergman, why do you have that number on your arm?” My mother was mortified and told me to hush… and Mr. Bergman just smiled and went on with his business. In the car afterward, my mother scolded me to never probe into people’s body issues or personal matters because you might offend them.  She told me that the tattoo on his arm was because he had been a Nazi prisoner, and that it was hurtful of me to have brought that up. This was exactly why I should not stare at deformities or ask about people’s personal things, because one never knows what will bring pain to a person. I have not thought of this experience for years, until the last couple days.

On my last day in Freetown, I bought some cloth bags from a guy whose hands had been severed off, I am sure in the war. That was a famous method of punishment in the war in the late 1990’s. He was about 40, we bartered a bit, he was good at it and lighthearted in his bartering. When I agreed to buy six, he separated the bags by untying a sting with his teeth. When I handed him money, he dropped some so I picked it up and held it on a railing until he could take a stump and push the money into his elbow joint to hold it. Then he pushed the money from his elbow joint with the other arm stump into a sack he had on his side. As I held the money and helped him re-sort his bags he was giggling with the struggle of it all… and I think it was genuine lightheartedness as he had now sold almost all of his bags.

As I walked out of that radio station, I suddenly had an image of that man with no hands and I instantly was reminded how recently the war was, which made me realize keeping the black magic happy for the chiefs was exactly analogous to keeping the military happy for the Commander in Chief. I wish I had that insight minutes earlier while I was on the radio! Then I realized, maybe for the first time, that I had touched the stump of the bag seller in Sierra Leone and I had not cared or noticed at the time. I had become the person my mother hoped (but never could have believed would happen) I would become 47 years earlier. I had encountered someone with perhaps the ultimate deformity associated with torture and was able to not have it get in the way of our interacting as two humans.

What a blessing that Mr. Bergman was there to sow thoughts and feelings in the impressionable mind of a six year old. What a great mother I had. What great luck that one of the last people I saw in Sierra Leone seared such a visceral image of how recent the war was, making me realize I was hypocritical to think chiefs hiding deaths was anything other than universal political dynamics. How lovely that in this crisis, unrelated to any legacies of colonialism or abusive capitalism or any political crap, the world stepped up in a big way and I got to be one of that world’s tools of compassion.  What a lovely trip to Sierra Leone I have had!

Bye,

Les

Life back to normal: This kind of crowded activity has only been visible the last couple weeks since school restarted.

Life back to normal: This kind of crowded activity has only been visible the last couple weeks since school restarted.

Finally, it is true!

Finally, it is true!

Les Roberts: “Seeing Ebola through the dead.”

Les Roberts – Freetown, Sierra Leone – April 19, 2015

I am getting ready to go and I have found that my main point from all of my field work is a hard sell here in Freetown. There are three ways we are finding out about new cases these days:

  1. People call 117 or walk into a facility because they suspect they are sick (and this has been most new cases in the last couple months)
  2. People are screened at a clinic or a road check point or a house visit during quarantine and get detected
  3. As every corpse is supposed to be tested for EVD and probably half are, we detect some from death swabs.

As a humanitarian community, category 2 above consumes about 90% of our surveillance energy and has, over the last couple months, probably produced about 10% of our new cases. Thus, I want to cut back our energy on those things and spend more effort finding and swabbing every corpse… but few are at peace with that suggestion.

In the most Ebola lingering District in recent weeks, Kambia, they had 880 blood samples taken in March and one was positive. There have been a couple of positive samples so far in April, so it is likely the rate of positives in April will be a couple times higher. That contrasts with four percent positive death swabs in Kambia during March. That means per sample taken, a death swab is at least ten times more likely to identify a new case. Finally, about half of all deaths in Sierra Leone, perhaps a little more, are being tested for EVD. If we assume that people experience a fever of 38°C and three of the potential Ebola symptoms (e.g. headache, body ache, exhaustion, diarrhea, vomiting) on average once per year, then not one in a thousand people who should be coming for testing are coming in. Thus, when you combine the rate of positives with the effort needed to get samples with the coverage rate, you would think all the effort would be going into getting more and more deaths sampled and safely buried.

But, others use other calculus. Some people value finding people who are still alive because one can get them into treatment and perhaps save them. Given that 20 or 30% who do not go for treatment survive and that 30% or sometimes 50% survive in the ETU’s, the marginal increase in the chance of survival is perhaps 20 or 25%. (There are folks who will protest this but they usually do not distinguish those detected by others with the self-induced early treatment seekers or include all the chances of death after being tested while waiting for transport, being transported…). There are others, especially Sierra Leoneans, who know that getting more chiefs and remote villages to call in deaths involves huge cultural barriers.

I just repeated a sensitivity exercise in two high incidence Districts that we had assessed in October. The system is no better. We missed two thirds of cases then, we probably have missed two thirds in 2015. The solution would be to put a lot more effort into monitoring all deaths. That is not going to happen…. and it might not be that big a deal. The outbreak is winding down because of social changes and widespread safe burial practices and services. In the grand scheme, it may not be important that the surveillance is poor.

Epidemiology… it might not always matter? Clearly, time for me to go home!

Cheers,

Les

Les Roberts – “Part b: Hope”

Les Roberts – Port Loko, Sierra Leone – April 18, 2015

While the exaggerating village we visited yesterday was not a positive story, the visit to the clinic was… almost unimaginably inspirational. The nurse, Mariatu, who runs the clinic, was very good-natured and sharp as a tack. When we came to her to verify the claims that over a dozen people had come to her clinic and died, she verified that and told us oh so much more. Back in October, patients with Ebola started coming. Because if they do not die, they would typically spend three weeks, it got crowded. As they have only a couple beds in the facility, most of the October – November period of hell involved the majority of patients laying on the floor vomiting and defecating. She runs a health post and was absolutely not supposed to accept Ebola patients, but they were her people and she said she could not turn them away. Every day she repeatedly called 117 and asked for help. But, as I wrote back in the Day 54 blog, at the peak of the outbreak there were no beds available so none of the supportive services worked, including ambulance pick-up.

Mariatu had no protective clothing. She had no gloves. She kept calling her superiors asking for these things, and for help, but none came. She did have chlorine. She had some knowledge about infection prevention… and she had guts! Every day she would have the patients drag themselves onto the veranda and she would pour chlorine solution over the floor. They buried the body when a patient died. She kept giving them fluids and food. By late November she could refer patients, and an ambulance would come when she called; by then she had treated 16 patients and 7 of them had lived. Miraculously, neither she nor her assistant became sick! Whether she was astonishingly brave and lucky or astonishingly brave and smart (or both), I cannot assess. I can only say, wow was it humbling to meet her!

Onward!

Les

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Mariatu in front of the graves behind her clinic. She was so chuffed that I wanted to take her picture so I could tell my students about her!

Les Roberts – “Part a: Triangulation – a scientist’s best friend when data quality is not an option.”

Les Roberts – Port Loko, Sierra Leone – April 18, 2015

I had a wonderful experience yesterday about my own inability to be analytical. We were repeating a sensitivity assessment that we had done in November to see where things stand and to document any improvement in surveillance over time. The process goes like this: in each village we ask the chief about the details of any deaths this year, articulated as since Christmas, and if there have been any Ebola cases in his or the neighboring village this year. After starting with the chief, we always try and triangulate the findings with some other source like counting recent graves or speaking to a local clinic nurse. In the end, we see the fraction of credible reports that had been detected by the surveillance system… and while not perfect, it gives us a reasonable insight into the system sensitivity. We went to a village… maybe with around 300 people… where the chief reported five survivors and about 17 deaths this year, all but one from Ebola. This was really uncool in several ways. This would be more cases than this Chiefdom (their equivalent of a county) had recorded for this entire year. If this were true, this would be a huge undetected flare-up and cause us to doubt the entire knowledge about the state of the outbreak in this District. According to the chief, six of the cases had been in March and one was just last week. Even before analyzing the data fully, I was sensing that the surveillance system was not performing well but this was a monumental oversight. Making it worse, most of the cases had gone to a local government clinic and died there making the under-reporting more inconceivable. On the other hand, the chief and the villagers around him seemed unusually unsure about the dates of the deaths and we had seen elsewhere that people often report deaths from 2014 as being in 2015, so I was not completely distraught yet.

We did our usual procedure; at the end of the interview with the chief we asked if we could go see the graveyard where he has told us all of the safe burials occurred. In this rather remote village there was not one graveyard but the chief graciously gave us a tour and showed us 14 graves, some of which could have been four or five months old.  It has not rained since October and lack of vegetation proves little.  But, a couple were very fresh, like only a couple weeks old and probably another seven sure looked like they were from this year. Given that most of the 20 deaths had supposedly happened at the clinic and the patients were buried there, this sure seemed to verify the chief’s report. Making it more disturbing and plausible, the six deaths reported for March had all not gone to the clinic and had died at home.  People grew to think if you go to the clinic you will die, so late in the outbreak they tended to stay home. I was bummed. We thought we were at ten cases a week nationwide. If we could randomly pick 12 villages in Port Loko and just by chance find a village like this, how many hundred others must be out there under the radar?

The surveillance system has so many shortcomings that this was completely possible. Given how major a surveillance failure this was, we decided to go to the clinic where most of the deaths had taken place.

On the drive there, I was thinking of how to break this news to my boss Dr. Yoti, who has been here for months and months working unbelievably hard and barely seeing his family in Uganda… and the NERC (National Ebola Response Centre) in Freetown… oh my gosh will they be apoplectic! I started to write my e-mail to Dr. Yoti in my head. Should I come back with a team the next day and interview the families and get all the details before bringing this to my superiors? With so many graves and so many deaths reported by the chief, something had to be going on.

When we arrived at the Cadick Maternal and Child Health Post we were lucky enough to encounter both the nurse and her assistant. They were really impressive, and more importantly, had kept great records.  They confirmed every name and every death that the chief had attributed to this clinic, but showed how almost all had been in November and October, back when we knew there were widespread undetected cases. Whew! The one death the chief said happened at the clinic last week did indeed, and while it was suspected EVD, the lab results were not yet known. Thus, even with many fresh graves, there apparently was not a huge outbreak that had gone undetected in recent weeks.

A team of local staff went back to the village today and now the chief says only two deaths happened this year. Based on the graves I saw I do not believe that either. I suspect that this chief wanted support and aid for his village where ten percent have died since October and they have been given little beyond the blessing of quarantine. In this case, I suspect they had a bad outbreak in 2014 and a few cases spilled into early 2015 but he was allowing the families to bury their own so the last cases went unreported… but this was not evidence of a recent (post February) massive outbreak going undetected.

Oh my gosh! Thank goodness for triangulation and the ability to put some check on crude and deceptive data. Thank goodness I don’t tweet (… which if we are honest, sounds rather rude in polite company).

Cheers,

Les

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A pretty recent grave! That is weeks not months.

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A grave probably from recent months but not recent weeks.

Les Roberts – “Curiosity may have killed the cat but it might not kill Ebola!”

Les Roberts – Freetown, Sierra Leone – April 12, 2015

There are some amazing events that keep passing-by just beyond my comprehension, and I really want to explore them, but I know they will do little or nothing to stop the present outbreak, so I have to resist.

We were doing a sensitivity assessment in Bombali District this week, looking at the system for recording deaths. The idea is, you pick some villages at random, you go out and find out about the deaths there since New Year’s Day, and then you see how many of those deaths were recorded by the surveillance system. We did this in a village way off the beaten path on a road barely passable by car. It began as usual with a conversation with the Chief. Early on, in my asking about deaths, the 30 men and children hanging around got rather agitated and I was a little worried, briefly, that we might get beaten, but that passed. There were three deaths, and one was a little suspicious on the Ebola front as it was a middle-aged woman dying with a headache, no fever. Upon further probing, it turns out she had arrived from Freetown just a couple days before her demise. But, they insisted that she was without fever and that there was a safe burial team that buried her and she was Ebola negative… and the Chief could show me. He returned with some of her medical records and it turns out, she had been living in Freetown, was HIV+, had entered an ETU in December and been discharged after testing negative on the 12th, re-entered a different holding center almost six weeks later on January 19th, and was discharged with a letter showing her negative test for Ebola on the 21st. She died 10 or 11 days later. That delay would make me think that she got infected while in the holding center, except that the Viral Hemorrhagic Fever database (VHF) shows that when entering the facility in Freetown she had fever, vomiting, diarrhea, body pain, and severe fatigue. Thus, maybe she took a long time to have detectable virus in her blood? I don’t know. It is just an interesting case. Perhaps most disturbing is that the District Alert database and the CDC’s VHF database both show that she had a swab taken at her death, as should have happened, but there was no test result recorded. Thus, we may never know for sure if she is an Ebola case, but my counterpart in Bombali is trying to chase down that test result. Looking back on the agitated crowd, I think they thought she was EVD+ and they feared I would bring quarantine to the village. If they knew, they might have bribed the burial team to lose the sample… which would be useful to know in terms of fixing the present system. But the rest of the fascinating case, I just want to know about that out of curiosity and my fondness for historical records.

Likewise, on the same day that Bombali counterpart, Oleg Storozhenko, who is following up on the lab test, went to a tiny village with less than 150 people that experienced 48 cases of EVD in late 2014 with 42 of them dying. The Chief was very clear and up-front about it all. Someone came from outside and died. They had a funeral where people drank the body rinse water, and then lots more got sick… Of those 48 reported cases, it appears only 3 are recorded in the VHF. We asked a WHO colleague who was there all this time and he remembers the village being decimated but says record keeping was so bad that, yes, it is possible only 3 out of 48 got properly recorded. A part of me wants to go to the village and spend a couple days confirming the information to try and understand how a quarter of a village could be infected and why it stopped… and how the surveillance system missed them or mis-recorded them. But, that was five and six months ago, and it might not teach us much about improving our systems and services right now. So, I will try and block it from my mind and figure out how deaths are getting missed in the next District. It is painful to think about the lessons we are not learning.

Cheers, Les

Les Roberts – “Liar, liar, your country is on fire!”

Les Roberts – Makeni, Sierra Leone – April 9 2015

As an outsider, with only a couple of months experience in Sierra Leone back in 2001 and 2002, it is really hard to digest the nuances of the culture here. For example, when people lie to you or to the record, it is hard to know if you should be ticked-off.

About two weeks ago, I was with a couple of colleagues investigating a case involving a woman who had died in the District hospital; almost everything went wrong. She died just before the three days lockdown so it took four days for the District health officials to start investigating and then:

  • She had arrived with clear symptoms of Ebola but she was related to the head nurse, so when a nurse wanted to call the “Ebola Alert” line to take her as a suspect case to a treatment center (in the next District over), the head nurse said “no”, she was fine.
  • She died around 36 hours after arriving but it then took 12 hours for the body to be picked up by the safe burial team with her lying dead in the full ward for that period.
  • None of the nurses were practicing any of the minimal infection control practices (wearing gloves, washing hands between patients…).
  • When the safe burial team sprayed chlorine around the bed, they did not spray the mattress and instead set it outside in the sun. When a new patient arrived some hours later, she was put on that mattress.
  • When during the inquiry four days later, my colleague saw a women vomit and brought it to the attention of the staff, they realized she had a temperature of 38 degrees Celsius, they said it was not an issue because she had been fine before. They could not be talked into calling the 117 Ebola Alert line… nor could the hospital safety officer… it just goes on and on.

So when I heard the chief nurse yelling at someone, mad as hell because she was now quarantined with nine other nurses, claiming that her nurses on the women’s ward always wash their hands between patients when I had just witnessed the opposite 20 times, I felt a little miffed! Many of my Sierra Leonean counterparts have had their lives ruined. The schools have been closed for a year. Selfishly, it has been weeks since I woke-up next to my wife. I have students that have waited two months to get papers back – that has never happened before. And hundreds of others and I are here now because of a systematic series of sanitary catastrophes, still happening 12 months into this outbreak. I later learned that four of the seven deaths logged in that women’s ward were never registered as a death within the District. Our local co-workers insist that this is because the families bribe the burial teams to give them the body so they can have a traditional burial… which if true, only increases my miffedness.

On the other hand, I have visited about a dozen Public Health Units (PHUs) in the past days and all of them are ignoring the rules about screening febrile patients. The government insists that anyone with fever and three symptoms must be turned away from the PHU and sent to be tested for Ebola at a Community Care Center (CCC) or Ebola Treatment Unit (ETU) for further screening, and when appropriate, testing. Often this involves travelling great distances. Even when the CCC is nearby, it means having your blood drawn and staying for a day or two before getting the results back. In the rural district with the highest attack rate this week, they had one positive blood sample out of around 880 taken at the screening centers in March, so almost all people tested experience two days of fear and loneliness for no benefit. Most people will just not go to these treatment centers. They are scary. There are human-like figures in PPE. It is hot and away from people, which is unnatural here. Thus, the nurses at the PHUs just do not enforce the screening requirement. They see a woman walking in with her child, the child is 1,000 or 10,000 times more likely to have malaria than Ebola. If they enforce the screening rules, that woman and child will not come to the clinic and that child will not be treated. The nurse knows the rules, she knows the risks, and she is choosing to do what is best for that mother and child while ignoring what is best for catching those last couple cases of Ebola in the country, which is my agenda. When I arrive in my nice WHO vehicle and she lies to me about having no patients that matched the suspect Ebola case definition, and I see dozens of malaria and typhoid cases diagnosed in the past weeks which mostly had to fit the suspect Ebola definition, I feel nothing but affection for her. My agenda and the Government Ebola agenda are not well aligned with her life-saving agenda.

Thus, I am not sure what to think and how to feel when I catch Chiefs in a bold-faced lie. For example, three out of five villages in Kambia District where the Chiefs told me they had no deaths this year had fresh graves in the cemetery. Not fresh like no vegetative cover, fresh like in recent days where the soil is not yet dried out and sun-bleached. I know they fear quarantine. I know they have broken the law by hiding deaths. But, what I cannot fully understand is their motives and how much these lying, Chief hiding deaths are markers for those populations that practice unsafe burials, and how much they are inducing risks for the collective good. The wounds of the war are fresh. Many tribes don’t trust their District leaders. I don’t fully understand the implications of their deception.

There are a lot of deaths still hidden in the rural areas. But I take great comfort that two weeks to the day after the debacle with the dead woman in the hospital ward, no secondary infections have arisen from her nurses or fellow patients. Last week we only had nine cases nation-wide in spite of all these widespread appalling practices. Thank goodness Ebola is only an intermittently infectious disease.

Onward! Les

Onward!   Les

Les Roberts – “What if the baseline does not equal zero?”

Les Roberts – Freetown, Sierra Leone – April 4, 2015

I had a call from our alum Laura Miller this morning. She was bummed… and a little freaked out about an infant case that arose in Kailahun where there has not been a case for quite a while. This is where the outbreak seems to have entered Sierra Leone. The child’s parents are EVD negative. Something similar (psychologically but not epidemiologically) has happened in Liberia in recent days, and if I believe the newspapers, perhaps those are linked to sexual transmission. Laura and thousands of others have been really demoralized by embers of Ebola arising where we thought the outbreak had come and gone.

I think in part this is because everyone around me has been promoting this phrase “Getting to Zero.” It is driving me crazy, as it is probably an impossible concept. It strongly appears that Ebola has been present in the region for years and was simply unrecognized. Evidence of this includes:

Analysis of hundreds of frozen blood samples from 2011 – 2014 at the Kenema Hospital Lassa Fever Ward found 22% of Lassa Negative patients were EVD +. See: Boisen ML et al. Multiple circulating infections can mimic the early stages of viral hemorrhagic fevers and possible human exposure to filoviruses in Sierra Leone prior to the 2014 outbreak. Viral Immunol. 2015 Feb;28(1):19-31. doi: 10.1089/vim.2014.0108.

A 1996 WHO press release described a 25 year old male on the Liberia / Cote d’Ivoire border “was confirmed by serological tests carried out at the Institute Pasteur in Paris” as EVD positive. See: http://www.who.int/csr/don/1996_01_22c/en/

A population-based random blood sample of 433 residents “in rural areas” of Liberia in 1978-’79 found 6% to be EVD positive. They tested for anti-bodies (range of positives 1/16 to 1/1024). See: Knobloch J. A serological Survey on Viral Hemorrhagic Fevers in Liberia. Ann. Virol. 1982, 133E, 125 – 128.

Frozen sera from 592 residents of mining company settlements were taken in 1973 and analyzed in 1986 and 14% were EVD positive and 21% positive for Marburg. See Neppert J et al. No evidence of LAV infection in Liberia, West Africa, in the year 1973. Blut (1986) 53: 115-117.

While I know little about virology and I know there was a lot of kibitzing about the precision/specificity /cross-reactivity of those indirect immunofluorescence anti-body tests back in the ‘80’s, I think the 1996 case and the recent Kenema data make it probable that there have been tens or hundreds of cases in Sierra Leone in recent years and that getting to a non-outbreak baseline is not the same as getting to zero. Surveillance has been very very poor in the region.

Back in a 2001, a gang of us from the Ministry and IRC did a 500 households random survey about mortality in Kenema District. Only around 16 of 78 reported febrile deaths had even gone for any medical care before dying. And, we all know, a health post or a Primary Health Unit (PHU… a fancier clinic with beds for in-patients usually staffed by a nurse) would have never diagnosed EVD before this past year. (An aside, back then IRC had a network of hundreds of TBA’s and several ambulances who were proud that there were zero known household maternal deaths in Kenema District in 2000, only those few hundred at the hospital; that is, they were perfect in their complicated birth referral record! We estimated there were 1900 and discovered that IRC’s TBA’s were actively hiding them because their training had emphasized how terrible and unacceptable maternal deaths were, creating stigma about reporting. If stigma about reporting maternal deaths arose so easily, think of what household and village quarantine is doing to Ebola surveillance now!)

Adding to the counter-productivity of the “Getting to Zero” concept is the notion of ecological equilibrium. If in past years there was a certain viral load in the animal community, ecological equilibrium would suggest that typically a certain number of human cases would be induced based on how often people killed game, were shat upon by passing bats, had a dog bring back an infected squirrel… Perhaps it was just purely human-related luck in 2014 that triggered these favorable human transmission events (like just by chance a couple of the victims had large body-rinsing funerals), but it is more likely the animal load is now higher. Thus (and I am making this up for the sake of discussion), if nationally the baseline was 10 animal based transmission events for an average of 30 cases a year, we should expect far more sporadic cases this year… and now we can test for it and now we are looking!

I hate campaign slogans predestined to fail. “Yes we can” is the perfect slogan because it is so ambiguous you are never sure if it succeeded or failed. “Getting to zero” is anything but ambiguous. Talk about setting yourself up for failure!

Onward! Les

Les Roberts – “Ebola, an intermittently infectious disease”

Les Roberts – Kambia, Sierra Leone – March 31, 2015

I just do not understand how two nurses in Houston managed to get infected in a high containment ward by this same disease I am seeing out here. After those infections, millions of Americans were convinced that this was a World War Z-like virus, in that if it could even come close to a human it would likely infect them. Here most of the time when a house gets an infected member, no one else gets infected. Last October, I gave notebooks to monitors in four villages that had not yet had any Ebola cases; one of them also monitored a dozen or so little collections of 20 houses around his area. Most of the time when there is a case in a village, it seems there is not even a second case. But of course, there were two villages with over a dozen cases each, so the story still favors a notion that Ebola spreads easily… but just not most of the time.

Last November, my Ministry counterparts and I went out to try and assess if household quarantine promoted household transmission at a time where there were no referral beds and sick people stayed, and mostly died, in their homes. The important part of that study for this tale is that we found 18 households that had an index case in October and the case stayed in the household, but the household was not quarantined. This is not a sample! It was illegal for there to be a known case and the household and contacts not to be quarantined. We learned about these folks because they were in the database of cases but not in the quarantine list or the contact tracers in their areas had heard rumors of these households. I have no idea what processes of bias brought these cases to our attention. But, they are the best insight into “natural” household transmission at that moment given all the social dynamics in play.

Blog march 31

The figure above shows how many other people became infected in these Western Rural District households over a period of at least 3 weeks since the index case. Note that in 13 of the 18 households, no one else gets infected! But in one of the 18 households, 16 freakin’ people got infected and 14 of them died. Without that one house, this insight would suggest a disease with an R0 (an outdated and inappropriate concept for Ebola) less than one. These are crowded small households, mostly without running water! And these 18 households are typical of all the other insights that I have, like my four monitors with notebooks. How is it possible that, in Houston, two people got infected giving us one impression while some villages had a case and usually no more, giving the opposite impression? I think the answer is in part bias.

I suspect every case investigation with a transmission chain record I see here is (when referring to the graphic above) one of the hyper-transmission events like the 16 infections household. In Kambia, where I am, in Freetown, where I was last week, most case investigations find no certain link to a past case. But, those do not make a big mental impression. When talking about the transmissions in 2015 in Freetown, people talk about the boats of sick sailors that came back and spread themselves around the neighborhood of Aberdeen causing dozens more cases… or the “herbalists” (traditional healers) who got together in a secret ceremony and cut open their dead colleague and then went and treated their patients causing dozens more cases. These are the freak, hyper-transmissible events. They are like the 16 infected member household above. They are probably unusual, and maybe even outliers, but they are what make this outbreak so tough to stomp out. Given that over a dozen more sick patients in the US have come for treatment without another infection and 30,000ish returnees have come back from the infected countries and only two (Craig Spencer and the Houston case) have gotten sick post return suggests the Houston hospital infections were unusual as well.

There is a growing body of evidence that there have been many, maybe hundreds of Ebola cases in this region each year for decades. The question arises, why at this time did it conspire to run amuck and spread to cities? What are the outlier characteristics this time around? The rinsing of bodies at burials has been going on. The tradition of people having the herbalist cut open their loved one to look for curses inside has been going on. The herbalists’ secret autopsies of one another has been going on. But this year, this intermittently transmittable disease has been anything but.

So on it goes, Les

Les Roberts – “Oh what a difference 140 days makes!”

Les Roberts – Freetown, Sierra Leone – March 24, 2015

I got back here a few days ago after 3.5 months back home, and oh my gosh are things different! The posters and billboards from last September were all about, “Ebola is Real!” in an attempt to get people to believe that this outbreak was a “natural” disease and that the messages people were giving could save the lives of their families and them. By the time I left, most people believed that Ebola was real. Lots of huge social changes had happened, like people reducing their touching and kissing of bodies at funerals, and the messages popping up on posters were focused on key measures to prevent the disease: Know the Signs and Symptoms, Get treatment early, Call safe burial teams to bury a body… Now the new billboards are mostly about believing the government will function. The emergency Ebola call number is 117, so one popular poster says “117 Works!” meaning that after months of people calling that number with no one answering the phone or no meaningful response if they did pick up, now if you call 117 you will get help. Another one says, “Ambulances are clean and safe” to battle the perception that if you call for an ambulance and get in it you will probably die… which unfortunately is still true.  My favorite one says something like, “Hospital beds are available” with a picture of a nice bed and a European looking doctor in PPE. As I talked about before in the Day 54 posting, this past fall the lack of Ebola treatment beds available made it so that nothing in the interlinked response system worked. People viscerally knew that; now there are plenty of beds and now most everything works as it should. The idea that the fundamental messages have shifted from battling disbelief in the reality of Ebola to battling distrust in the functioning of government and relief community seems to me a big victory. People in the wealthy countries often don’t trust their government’s ability to function in a disaster… so at times of crisis when there will always be some disbelief and discontent, this might be as good as our species gets.

The fact that there are lots of beds, far fewer cases, and all the elements in the Ebola response (117 call-lines, ambulances that arrive, treatment and safe burial teams) have become sufficient has made for a radically different vibe! My peers have gone from a desperate state of 19 hours a day panic mode driven by fear and terror about where this outbreak is headed, to an upbeat “there are clear tasks that need to get done” mindset. Everyone now can see that what has been happening in terms of social dynamics and social messaging, and in terms of the services they have created, is making a difference. The fact that Liberia might be back to near baseline is very encouraging.

Most importantly, the vibe among the Sierra Leoneans has changed in the same way.  When I arrived, the receptionist at the hotel said “Welcome back. We are now winning!” The children on the streets who were friendly but physically distant before now run right up beside you and get physically close in their exuberance. They have some of the classes going again in school and kids are playing soccer together on the streets and in the fields which was not allowed before. The most humorous change for me are the gals on the street who rent their services. Before, they would sit in their chairs as men walked by and casually say, “Good evening.” Now, they get up and are much more aggressive in their friendliness clearly indicating that they are actively back in business. As a public health person, knowing that sperm can transmit the virus for over 90 days, I see this last social uptick as not completely positive.   There are only about five well described sexually transmitted cases from survivors here, but as we get to the end game, these lower population attributable risk routes of transmission are likely to be either more detectable and perhaps more important; especially cases associated with people crossing the border from Guinea. Thus, I fear while the forest fire called “Ebola” looks a lot smaller and people are soooo ready to celebrate, we are likely some months away from declaring the country Ebola free. All those 2015 graduates hoping to work on Ebola might just get their chance. Darn!

Cheers, Les

Tim Cunningham – “Committing to sharing a story”

Tim Cunningham – Sierra Leone – February 2015

Fires slowly rip through fields desecrating the lowest brush. They singe the branches of the mango trees closest to the ground, creating swaths of smoldering ash following the direction of the wind. Every day, a new fire leaps from field to field. Then it seems like in short time bright green sprouts with small leaves proliferate the scorched earth, moving everything from black and grey to green. 

We turn off of the main road that heads towards Freetown, an unmarked road, like most. Patchy and full of holes with a subtle downhill gradient, just enough that in front of us opens a horizon humid and hazed with palm trees as far as we can see.  Immediately to our right and left hardy undergrowth flanks the trail springing from the new ash. The road is red.

About one half of a mile down there is a tin shelter, perhaps eight feet by eight feet with an upward tilting roof that opens onto a cleared field, not black like most burned land, but red, clay, full of gravel and large stones. Beyond the field, facing this shelter is another structure, a skeleton of wood decorated with laundry drying in the sun. Around it, 28 young men talking quietly.

We have arrived at the Port Loko New Cemetery; today it is rudaceous with 522 mounds and 10 or 20 open pits, deep rectangular graves. In front of many of the mounds sits a wooden post with a crosspiece plank, black with white paint:  A name or “unknown,” and age or blank space, the name of a village, a site number. 

Mr. Sesay (his name is changed here; all forthcoming names are changed too to respect privacy) has invited us to come to his work place. He built the tin structure for a viewing area in which family members can stand at a safe distance to watch their loved ones laid to rest with distant dignity. At death, the body is most contagious with Ebola and yet in this place funeral rites, for time immemorial, have consisted of caring for, cleaning and closely honoring the decedent. Mr. Sesay and his team of 28 gravediggers and burial teams try to bridge the gap between culture and contagion.

He claims he was the first man in Port Loko District to wear Personal Protective Equipment (PPE) when this epidemic was first named. His corps of 28 young men, some ex-soldiers, most of them previously jobless, all strong, free volunteered to this work. The first person they placed in the ground was a police officer. His body lies at “site 1,” his maker reads “unknown,” based at the roots of a large mango tree. 

When we, four nurses from the Maforki ETU, descended our vehicles to step on this sacred land, Mr. Sesay and the 28 gravediggers quickly approached us saying we were welcome, but with a pressurized tone that another agenda was in place.  Mr. Sesay encourages us to take photographs as do the gravediggers. “That way people can know,” he says. A gravedigger then speaks up from the crowd and iterates, “You are free to walk wherever you like.  We need to speak with you when you are done.” 

And the crowd steps back. 

Mr. Sesay asks: “So, who are you here for?” We don’t respond. We may be here for ourselves. Since December 25th more than 100 patients have died in our facility, most from Ebola. 

One of our nurses asks to see the site where a patient named Hawa lies. She was 8 years old and this particular nurse helped admit her when she cried out to her headman, “Mr. Bangura!  I will die!  I will die!” He comforted her, speaking her own language, Temne, calmed her and daily brought her treats during her rapid decline. He had planned to set up financial support for her to get her through school when she was discharged. Hawa, like many of our pediatric patients stole our hearts with her ferocity, her constant attempts to pull out her IV cannulas, her refusal to drink and eat when we told her (but her love to eat when we turned our backs). Even as she got more sick, she still fought us with what strength she had, comforted only by this nurse Cheedy, whom she trusted the most. 

When Cheedy asked to see where she was, Mr. Sesay pulled out a meticulous document, a matrix of names, dates and site numbers and took us directly to her home in the earth. Then names flooded our minds and we walked the coarse stone graveyard, each name provoking vivid memories covering the spectrum from joy and laughter to loss and the gnawing feeling of complete failure. 

We visit Hassan next, a boy who was 1 and ½ years old when he died. He had days of looking like he could die at any minute and then his last day was his best. He was beginning to recover, we thought. He looked better, stronger, his skin took on a healthy tone and then the next day he stopped breathing in his father’s arms. Frequently, we have seen this trajectory with children; they look horrible and we fight to resuscitate them, they take a turn for the better, they often eat, sit up and play. They have their “best day” and all too often, it is their last.

Hassan’s gravesite is mammoth compared to the size of his body. All graves are uniform in length, depth and width.  This one-year old fought like a grown man though, fought like an adult, fought like the strongest of our fighters and therefore he fills a grown man’s grave.

More visits, more sites, a sea of names. We walk for I don’t know how long. 

And then the cadre of gravediggers approaches us again; perhaps we have spent enough time in near silence. The critical mass of burly young men present their spokesperson who I will call Ali. Ali appears younger than the others and is energetic. He speaks like a politician, vehement and focused. His speech sounds well-rehearsed. 

There is a discourse that I have heard at the ETU and in all of the communities I have visited in the Port Loko and Kambia districts. It has shifted from, “How do we contain this disease and end Ebola?” to “What will we do now?”

Ali spoke about how he and his colleagues came to this work, one of the most important fronts in the fight against Ebola, jobless, but wanting to serve their country. They have all experienced the war that ravaged their homeland, a “seen war” confused by enemies, politics and power and now they see themselves at the front line of an “unseen war” with a known enemy unquestionably evil. And they know this war is ending soon and they are fearful. 

Ali eloquently describes how NGOs came after the “seen war” and provided work and assistance rebuilding. He talks about how, over time the NGOs left and then there were no more jobs. He and his compatriots are concerned that once the Ebola war is over, NGOs will again leave and then leave an all too familiar swath of joblessness, “Will you all leave us again? Who will remain and help?”

Ali’s team is proud of the work they have done. They no longer have to volunteer as they have been hired by a large NGO and been given tools to continue to provide safe and dignified burials. Through their work, this disease is closer to being contained.  He rallies his group at the end of his speech with words of hopefulness and ideas of rebuilding his country, springing forth from the damaged earth. He asked again what we could do to help.

We respond as best we can, that we don’t know what the future will bring. Tearfully, we thank him for his work caring for the bodies of patients we loved. And we also tell him that we can commit to sharing his story. We can promise that we will tell about the work of the gravediggers, their bravery and their commitment to their country to rebuild after this second war. Ali is happy and thanks us; he and his team pose for a photograph, explicitly asking us to share it with their story. 

©TimCunningham

The team of gravediggers in Port Loko New Cemetery

There is nothing else to say. And we are ready to leave.

Mr. Sesay asks again that we share photos and stories of the graveyard. 

The four of us walk back to our car parked on the opposite diagonal of this field. We walk from site 1 to site 522, each taking a different line of the grid in order to walk alone and have yet another “one last goodbye.”

As if my path was predetermined, I glance at a marker while exiting the space and see the name of the first child who died in our hands, I will call him “Issa.” He had a “good” death: good in that his body was clean, he wore the most colorful lappas as bed sheets and he was not alone. He had been sick for days and when we found him while doing our morning rounds he lay listless with agonal breathing and in his own bodily fluids. We cleaned him, lifted him to a bed, and rolled him in a position where his breathing seemed a bit less painful and he shortly succumbed to Ebola. Issa was 9 years old. 

At the foot of his grave, amidst this field of rubble, was a tall green sprout. It stood just a foot high off the ground with stalwart blades soon to be leaves. It had pushed its way through the dry stone, despite lack of rain and pounding sun. 

Clinics and hospitals are slowly reopening here. Schools are slated to start by the end of March. The need is great: for health care workers, for teachers, for community servants able to make this place fertile again. The fires are subsiding.