Carolyn Henry: Eliminating Parasitic Worm Infections

Schis­to­so­mi­a­sis af­fects about a quar­ter of a billion peo­ple wor­ld­wide, par­tic­u­larly peo­ple liv­ing in some of the world’s poor­est coun­tries. In this talk from EA Global 2018: Lon­don, Carolyn Henry of the Schis­to­so­mi­a­sis Con­trol Ini­ti­a­tive talks about SCI’s work against the dis­ease, the value of buy-in from the re­cip­i­ents of their aid, and the im­por­tance of men­tor­ing lo­cal gov­ern­ment offi­cials.

A tran­script of Carolyn’s talk is be­low, in­clud­ing ques­tions from the au­di­ence, which CEA has lightly ed­ited for clar­ity. You can also read the tran­script on effec­tivealtru­ism.org, or watch the talk on YouTube.

The Talk

Eight years ago, I started work­ing for Médecins Sans Fron­tières, and I was placed in Nige­ria. I was su­per ex­cited to go out for the first time, to feel like I was do­ing good first­hand as a nurse in a very re­mote clinic in Zam­fara State, which is near the boarder of Niger. The pro­ject was for chil­dren un­der five and there was a great need there, be­cause at the time there had been an en­vi­ron­men­tal im­pact which had re­sulted in lead poi­son­ing, caus­ing thou­sands of chil­dren to die and a lot more to be de­vel­op­men­tally challenged. On top of that, there was the usual malaria, with its mas­sive prob­lems, and also out­breaks of cholera and an­nual out­breaks of menin­gitis. So there was a huge bur­den of poor health and mor­tal­ity in the area. I turned up to man­age the lo­cal hos­pi­tal and the out­reach clinic there, and was ex­pect­ing peo­ple to be as ex­cited to re­ceive the treat­ment as I was to give it. But it was ac­tu­ally quite difficult to get peo­ple to come to the clinics. They were a bit sus­pi­cious about even the world-class meds that had been spe­cially pro­duced for this lead poi­son­ing. They were quite sus­pi­cious of that, and also ob­vi­ously sus­pi­cious of us com­ing in from the out­side to their very ru­ral com­mu­nity.

1600 Carolyn Henry

And this came to the fore­front of my mind when I was sent to go to an out­reach clinic, where we were look­ing to see if we could ex­pand the scope of the pro­ject. We went to see the lo­cal health cen­ter, which as you can imag­ine was very re­source poor. It was not pro­vid­ing high qual­ity ser­vice to that com­mu­nity. But when we were there on that day, there was also a tra­di­tional medicine man who was trav­el­ing through the village. Peo­ple were queu­ing up to go and pay quite a large pro­por­tion of their in­come to get herbal teas, which they be­lieved would cure them, rather than the medicines that we would be able to give them for free, that were ev­i­denced and effec­tive. This re­ally struck me, re­ally in the face, about how it was so im­por­tant for not just me to know the ev­i­dence and to know the effec­tive­ness of the med­i­cal care, but about that com­mu­nity and how we can em­power them to ask for that treat­ment them­selves, and to get the med­i­cal care they de­serve.

Fast for­ward a few years, I now work for the Schis­to­so­mi­a­sis Con­trol Ini­ti­a­tive. I’m a Se­nior Pro­gram Ad­vi­sor, mostly work­ing in Ethiopia and Tan­za­nia. SCI has just go­ing through a strat­egy change. We’ve got a new strat­egy out this year. And now we are re­ally fo­cus­ing on that ex­act point, is how do we em­power lo­cal com­mu­ni­ties? Not just de­liv­er­ing our sig­na­ture, a cost effec­tive treat­ment pro­gram, but also ar­tic­u­lat­ing more about how we do that, and how we are able to em­power not just na­tional gov­ern­ments to have own­er­ship of their pro­jects, but also lo­cal com­mu­ni­ties.

I’m go­ing to just talk a bit about our strat­egy and our challenges. We’d love some feed­back from the EA com­mu­nity, and in­put to make our pro­jects as good as pos­si­ble.

1600 Carolyn Henry (1)

For those who are not fa­mil­iar with SCI, we work in 15 Sub-Sa­haran Afri­can coun­tries. We are de­liv­er­ing treat­ments for par­a­sitic worm in­fec­tions, mostly fo­cus­ing on schis­to­so­mi­a­sis and soil-trans­mit­ted helminths, or for short, schisto and STH. We de­liver those pro­grams through na­tional gov­ern­ments, so we don’t di­rectly im­ple­ment, but rather sup­port na­tional gov­ern­ments to de­liver their own pro­grams through their ex­ist­ing health sys­tems. We’re re­ally try­ing, in our new strat­egy, to bet­ter ar­tic­u­late our ap­proach. So how we do things, not just what we’re able to achieve at the end of treat­ment.

1600 Carolyn Henry (2)

One of our big things we want to em­pha­size, though we’ve been main­tain­ing them for a long time, is our part­ner­ships. Look­ing at the part­ner­ships and col­lab­o­ra­tions with other sec­tors like wa­ter san­i­ta­tion and hy­giene, and also other sec­tors like ed­u­ca­tion and nu­tri­tion which are over­lap­ping as well. But also, we re­ally want to show how we’re work­ing through the part­ner­ships with lo­cal gov­ern­ments, to make our work as effec­tive as it can be. We are also look­ing at our own pro­cesses and pro­ce­dures, mak­ing them as effec­tive in­ter­nally, but also mak­ing them ac­cessible for the coun­tries and gov­ern­ments with which we work, so they can have their own em­bed­ded knowl­edge man­age­ment sys­tems, and they can men­tor some of the ap­proaches that we might use as stan­dards, and learn pro­ce­dures they might not have oth­er­wise known about. So we’re re­ally keen to put some in­no­va­tion into each coun­try’s pro­grams.

We’re also try­ing to keep a sus­tain­abil­ity el­e­ment. Schis­to­so­mi­a­sis in par­tic­u­lar is not go­ing to go away very quickly. We’re go­ing to have to work for many years at de­liv­er­ing the mass drug ad­minis­tra­tion pro­grams. And then af­ter that, there still needs to be a health sys­tem in place that can sus­tain the surveillance, so that these dis­eases don’t just come back again. It’s not good enough to treat un­til the rate goes down enough, be­cause it will just come back up with­out the proper wa­ter san­i­ta­tion, ed­u­ca­tion, and be­hav­ior change. We need to make sure that lo­cal health sys­tems are strong and ro­bust to be able to sus­tain the pro­grams now, but also to do the nec­es­sary surveillance in the fu­ture.

Fi­nally, we are always ev­i­dence based. We’re not only ev­i­denc­ing about the treat­ments for the par­a­sitic worm in­fec­tion, we also want to ev­i­dence the ap­proach that we use to prove that it is a very effec­tive method, and also just un­der­stand more about how we’re con­nect­ing to ex­ist­ing health sys­tems and strength­en­ing them from them the in­side. We want to un­der­stand, and to be able to ar­tic­u­late that bet­ter.

Here’s a case study from Ethiopia, where SCI mostly works. So what hap­pens at the be­gin­ning of the year is that the WHO, through a drug dona­tion pro­gram, can de­liver the drug so that the coun­try teams are able to dis­tribute them all over the coun­try. We also get fund­ing for the pro­gram from a va­ri­ety of sources. So SCI is just one of those sources for the Ethiopian gov­ern­ment. This year in to­tal they’ve had hun­dreds of mil­lions of tablets, and even just the sheer schisto and STH pro­grams are over $6 mil­lion this year.

1600 Carolyn Henry (3)

So what we do at SCI is sup­port the na­tional level gov­ern­ments. So think­ing about the size of that pro­gram, there’s only one per­son in the Ministry of Health that’s re­spon­si­ble for the schisto and STH pro­grams. So you can imag­ine the ca­pac­ity that he has to be able to try and ini­ti­ate, sus­tain, main­tain that level of pro­gram on his own. It’s a lot. And also he’s been as­signed to that po­si­tion, rather than se­lected be­cause of his knowl­edge on Ne­glected Trop­i­cal Diseases (NTDs). So we are there to re­ally sup­port, men­tor and coach in all the ar­eas of the pro­gram, in­clud­ing lead­er­ship, where we’re talk­ing about ad­vo­cacy and how to mo­bi­lize the staff at lower la­bels. We’re train­ing peo­ple, and think­ing about how they can train oth­ers in turn. We’re do­ing drug dis­tri­bu­tion and pro­cure­ment. So mak­ing sure they have a good pro­cess of in­ven­tory, where the drugs ar­rive savely and on time. We make sure that the drugs are well stored for the peo­ple who need them, and figure out how to mo­bi­lize the com­mu­nity to make sure they come, and are aware of a drug dis­tri­bu­tion on that par­tic­u­lar day.

And lastly, mon­i­tor­ing and eval­u­a­tion. So we’re re­ally mak­ing sure that our benefi­cia­ries un­der­stand the im­pact of the pro­cesses and of de­liv­er­ing those drugs. And then that re­lies on a cas­cade. So in Ethiopia, that one per­son at na­tional level will train the nine re­gional NTD co­or­di­na­tors. They do all the ne­glected trop­i­cal dis­eases. So we have eight en­demic in Ethiopia plus they’ll have to do malaria pro­grams and TB pro­grams. So you can imag­ine it’s a huge vol­ume of work they have to do. So we need to make sure that the pack­ages are very eas­ily ac­cessible and un­der­stand­able, so they can un­der­stand, pick them up, and de­liver a very good pro­gram that’s safe. They will then train the dis­trict level co­or­di­na­tors. So we are work­ing in over 550 dis­tricts in Ethiopia, and they will then train the health ex­ten­sion work­ers.

So this year we’re do­ing over 22,000 health ex­ten­sion worker train­ings, as well as train­ing schoolteach­ers for aware­ness so that they can sup­port the health ex­ten­sion work­ers. That’s all to de­liver over 8 mil­lion treat­ments for schis­to­so­mi­a­sis this year, and 15 mil­lion for soil-trans­mit­ted helminths. And then we need to make sure that they can mon­i­tor and eval­u­ate, but ac­tu­ally the im­pact of them be­ing able to do that mon­i­tor­ing and eval­u­a­tion is more about ac­countabil­ity. So they un­der­stand that they can go to the fun­ders and re­port back to them, in­clud­ing us at SCI, to show what they have man­aged to achieve, and also re­ally to take charge and own­er­ship of that pro­gram, be­cause they feel that buy-in from when they see that things have ac­tu­ally im­proved. So we use this pro­gram cy­cle to help en­sure there’s own­er­ship and ac­countabil­ity.

1600 Carolyn Henry (4)

So, of course, our ul­ti­mate aim is to have dis­ease elimi­na­tion of par­a­sitic worm in­fec­tions. But it’s not as sim­ple as just stick­ing to the WHO cov­er­age tar­get of 75% for school age chil­dren. We ac­tu­ally need to go above and be­yond. So we’re look­ing now at how we can reach those hard-to-reach chil­dren, the ones that don’t go to school, that will re­ceive the medicine at the school-based plat­form. We want to make sure that the chil­dren who are in re­fugee camps, who are no­madic, who maybe have to work from a very young age and are out­do­ing the agri­cul­tural field work, are still able to get those tablets ev­ery year on the de-worm­ing date. But as well, alongside the dis­ease elimi­na­tion, we re­ally want to make sure that there are strong health sys­tems along the way. So we don’t want to in­ter­rupt the health sys­tem by tak­ing over or in­ter­ject­ing. We want to make sure that all the teams are learn­ing alongside us through the whole jour­ney, to make sure that in­sti­tu­tional learn­ing will per­sist for these na­tional health sys­tems. And we need to make sure that they’re ro­bust and re­silient.

Th­ese coun­tries of­ten face so many dis­asters. For ex­am­ple, Libe­ria had to stop their pro­gram at some time for Ebola. And we man­aged to quickly en­gage them again, but we need to make sure that if there’s flood­ing, na­tional dis­asters or other dis­ease epi­demics, that coun­tries from now on can con­tinue their de-worm­ing pro­grams. And to be able to make sure that it’s not always a stan­dalone, ex­ter­nally funded pro­gram. We need to make sure that we can con­tain health pro­grams to a size that they are more man­age­able and eco­nom­i­cally vi­able, so that the pro­grams can then tran­si­tion into the main­stream health sys­tem. And that’s more likely to be the case when we perform a smaller pro­por­tion of treat­ments an­nu­ally. And also definitely when we get into the surveillance stage, be­cause the health sys­tem will need to main­tain that surveillance level on their own. So this leads us to some of our challenges, like that we’re re­ally hop­ing that the gov­ern­ments will be able to think about their in­vest­ment into NTD pro­grams in gen­eral, but speci­fi­cally schis­to­so­mi­a­sis and soil-trans­mit­ted helminths.

1600 Carolyn Henry (5)

We want to make sure that there’s the poli­ti­cal will to en­gage with these pro­grams, that peo­ple un­der­stand what the com­plex­ity of their health bur­den is on young peo­ple, and the im­pact that they can have from tak­ing very sim­ple mea­sures. So we want to cre­ate the poli­ti­cal will, but also we want to make sure that that not only comes from us ex­ter­nally, but also from the com­mu­ni­ties them­selves. We want to make sure that those com­mu­ni­ties will be able to cre­ate de­mand on their own. If a train is late in the UK, peo­ple get on Twit­ter; they de­mand a re­fund. That’s a strong pub­lic de­mand for qual­ity ser­vice. But in the com­mu­ni­ties where we work, they don’t even have any ex­pec­ta­tion of a health ser­vice, let alone a qual­ity health ser­vice.

So that’s what we want to make sure that the com­mu­nity knows, what is qual­ity and what they de­serve in a health sys­tem. And then we want to make sure that their health sys­tems have that ca­pac­ity not only to de­liver the de-worm­ing pro­gram now, but as cir­cum­stances change over the years. It may be we’ll need re­assess­ments, we’ll need to eval­u­ate the data, we’ll need to make sure that we work alongside other NTD-con­trol efforts, and also alongside the wa­ter and san­i­ta­tion sec­tors. So we need health ser­vice teams to have ca­pac­ity to be able to do that.

Now, our challenge is how do we tran­si­tion from be­ing a very cost effec­tive or­ga­ni­za­tion who’s hori­zon­tally scaled to de­liver huge amounts of treat­ments with quite a small team, but hav­ing a big im­pact, to an or­ga­ni­za­tion that’s em­bed­ded ver­ti­cally into the health sys­tem, mak­ing sure we get all those hard to reach chil­dren and elimi­nate the dis­ease? How do we make sure that the health sys­tem is strong enough, and that we’ve helped build the nec­es­sary ca­pac­ity. So that is now our challenge, is to think about how we can effec­tively mea­sure and also ar­tic­u­late what the value add is of our ap­proaches and our pro­cesses.

Questions

Ques­tion: What is schis­to­so­mi­a­sis? What hap­pens when you get it?

Carolyn: Yeah, so it’s a par­a­sitic worm. When chil­dren have the dis­ease, it can be ei­ther in the bowel or the blad­der. So there’s two differ­ent types, but they’re both treated with the same medicine. And the way that it’s trans­mit­ted, we call the life cy­cle of that par­tic­u­lar worm. It’s found in a fresh wa­ter lake. So if a per­son goes into the lake, there might be some snails in the lake. And they pro­duce what we call cer­cariae. The lit­tle cer­cariae can min­gle in­side the skin. They’re so small, they can just slip in­side of the skin, and then they will go through the sys­tem and en­ter ei­ther the bowel or the blad­der. The bur­den of dis­ease is seen mostly in school-aged chil­dren, be­cause they’re smaller, so they feel the effects more strongly. It can pro­duce a va­ri­ety of differ­ent con­di­tions.

Some of them you might not see ini­tially. So that’s one of our challenges, is that peo­ple some­times don’t know that they’re ill, or don’t im­me­di­ately see the con­se­quences of the dis­ease. They’re not think­ing, “I want to go and take medicine for that.” So some of these dis­eases can ac­tu­ally… the im­pact of the dis­ease can ac­tu­ally lie dor­mant for quite some time. And the way it goes back into the lake is through open defe­ca­tion or through be­ing passed from ei­ther the urine or the stool back into the lake. The snail is what we call an in­ter­mit­tent host. Then it pro­duces the cer­cariae. The cer­cariae go back into the skin. So things like ac­cess to wa­ter are what makes schis­to­so­mi­a­sis so differ­ent from other par­a­sitic worms. It’s not as easy as say­ing, get some toi­lets for ex­am­ple, be­cause if the cer­cariae is in the wa­ter, and you’ve got nowhere else to wash your­self or your clothes, or if your liveli­hood is fish­ing, then you’re always go­ing to be con­tam­i­nated by that wa­ter.

So it’s quite a challeng­ing prob­lem in terms of the causal­ity, but also the bur­den of dis­ease, which is not seen im­me­di­ately, which won’t cause peo­ple ini­tially to go and get ac­cess to med­i­cal treat­ment.

Ques­tion: So ul­ti­mately, nei­ther medicine nor san­i­ta­tion alone can re­ally solve the prob­lem?

Carolyn: Yeah. So we sort of think about it like a three legged stool. There’s a part about the these snails as vec­tors, and think­ing about in­ter­mit­tent host con­trol. So the ques­tion of whether there’s any­thing we can do in terms of the lakes and un­der­stand­ing the snail as that vec­tor.

And then there’s also the part about the wa­ter and san­i­ta­tion, but it’s not as sim­ple as just hav­ing the toi­let or just a lit­tle bit of wa­ter. It would have to be on such a scale that peo­ple wouldn’t need to have the con­tact with the wa­ter at all, or they would be able, for ex­am­ple, if they’re fish­er­men, to be able to pro­tect them­selves against that risk and un­der­stand the risks so much they can wear cer­tain boots to pro­tect them­selves from the wa­ter.

And then there’s mass drug ad­minis­tra­tion, which is the most cost effec­tive way for the con­trol of the dis­ease as a pub­lic health prob­lem. But when re­mov­ing to think about elimi­na­tion of that dis­ease, yes, you’re right. You have to think about ev­ery­thing to­gether.

Ques­tion: So I was read­ing a lit­tle bit just as you were talk­ing also on Wikipe­dia, this af­fects 250 mil­lion peo­ple an­nu­ally. This is with your or­ga­ni­za­tion work­ing on it, and pre­sum­ably oth­ers?

Carolyn Yeah, ex­actly. And they’re all in the poor­est coun­tries. So at the mo­ment we’re aiming for con­trol of the dis­ease.

So peo­ple are still af­fected, but they wouldn’t have the bur­den of the dis­ease, be­cause ev­ery year they’ll get treat­ments through their schools. So we are bring­ing down that bur­den of dis­ease. But in our new strat­egy, ob­vi­ously we know that ul­ti­mately it’s not enough just to con­trol. We’re now push­ing to­ward elimi­na­tion. So that’s where you have to think of that ex­tra mile. How do you not just con­trol? So the WHO recom­mends 75% cov­er­age of all school aged chil­dren to con­trol the bur­den of dis­ease. But when we’re think­ing about elimi­na­tion goals, it shoots up to above 90% cov­er­age. So that means we need to be think­ing of those hard to reach chil­dren. And ac­tu­ally we don’t re­ally know where they all are; they’re not in a cen­sus. So we don’t know ex­actly how many we’re talk­ing about or where those chil­dren are. So that’s a lot of the re­search we’re do­ing at the mo­ment.

Ques­tion: Has 75% cov­er­age been ac­com­plished? Is it the re­al­ity in a lot of the places where you’re work­ing?

Carolyn: So that’s what the WHO and all the ev­i­dence proves, that the 75% cov­er­age is nec­es­sary for the con­trol of the dis­ease. How­ever, like any ev­i­dence, you could ac­tu­ally ask “how do you know it’s 75%” if maybe you don’t have an ac­cu­rate cen­sus to make sure your de­nom­i­na­tor is right. So it’s like any re­search. You can find ways that you would ar­gue the point. But definitely the over­whelming pool of ev­i­dence that’s out there shows that there’s a great im­pact on peo­ple’s lives by reach­ing 75% cov­er­age.

Ques­tion: What does the team look like? What are you guys do­ing day to day? If we were to ob­serve your work, what would we see and what sort of skills do you feel like are miss­ing from your team that you would love to add to be able to ex­tend your work?

Yeah, so that’s in­ter­est­ing. So at the mo­ment we have four main teams. So I’m in the pro­grams team, and we are pro­gram ad­vi­sors. So we have two or three coun­tries each that we go out to reg­u­larly. So for ex­am­ple, I some­times go once a month to Ethiopia for about a week, or some­times I just go for train­ing to help or spe­cific times dur­ing when the drugs are be­ing given out. So day to day we’re ei­ther in the office catch­ing up with the rest of the teams or we are out in our coun­tries, maybe about 30% travel time for most of us. And then there’s the mon­i­tor­ing eval­u­a­tion and re­search team, which has got bio-statis­ti­ci­ans, so­cial sci­en­tists, and an eco­nomic ad­vi­sor, so value-for-money officer. And they sup­port the coun­try pro­grams mostly through us as the pro­gram ad­vi­sors, and they would help with all their statis­ti­cal anal­y­sis of the data that we bring back, par­tic­u­larly about im­pact re­ports, and cov­er­age val­i­da­tion. But they don’t just do it for us. They also travel to the coun­tries to help us train in-coun­try teams. So even­tu­ally those peo­ple can do it them­selves and build that skill. And then we have a fi­nance team to sup­port us, and also a com­mu­ni­ca­tions team to help ar­tic­u­late our work. So we’re at about 25 peo­ple to­tal.

In terms of more skills that we would like, I think we’re at a re­ally in­ter­est­ing point, where we could scale a lot and that’s ev­i­denced when GiveWell does their as­sess­ments. We’re ranked sec­ond by GiveWell as the most cost effec­tive non­profit ini­ti­a­tive. When we’re look­ing at the roles, I think we could go so many di­rec­tions, but it’s how we’re at the tip­ping point that we’ve got a core team of roles and peo­ple that we need, but at differ­ent points we are think­ing more about the so­cial sci­ence as­pect. So we’ve got one so­cial sci­en­tist, but we could do so much in that field. It also think­ing about, do we ei­ther col­lab­o­rate or have con­sul­tancy about wash ex­perts, to help us think about that a lit­tle more? But mostly I think we’re in a re­ally nice po­si­tion where the com­mu­nity that work on ne­glected trop­i­cal dis­eases is very good at col­lab­o­rat­ing. So of­ten we do get skills just through col­lab­o­ra­tion with ei­ther re­search or differ­ent or­ga­ni­za­tions.

Ques­tion: If I un­der­stood cor­rectly, as an or­ga­ni­za­tion, you’re try­ing to make a shift from a pretty nar­row, well-defined set of pro­grams that you’re sup­port­ing to an in­sti­tu­tion build­ing type of challenge. Is that right?

Carolyn: So I think that rather than a shift, it’s more like an or­ganic move­ment that’s prob­a­bly hap­pened from the be­gin­ning. And it was some­thing we were always known for, the Pro­gram Ad­vi­sors, in­clud­ing peo­ple be­fore me, have had very good re­la­tion­ships with the gov­ern­ments that we work with. So ac­tu­ally I guess rather than a shift, it’s more just think­ing ac­tu­ally, this is what we do, and it works re­ally well. So how do we ev­i­dence it? How do we ar­tic­u­late it and how do we mea­sure it to re­ally en­cap­su­late what the whole pro­gram is? Yeah.