2015 Public Health Grand Rounds 10/02

PUBLIC HEALTH GRAND ROUNDS Linking Research to Community Health Improvement

- And rounds hosted by the Center Community Health,
and I'm Doctor Christi Green.
In collaboration with the Department
of Public Health Sciences and doctor who organizes
(mumbles)
This particular session is co-sponsored
also with (mumbles) Center for AIDS Research,
and it's through their generous support
and enthusiastic suggestion that we bring in
the guest speaker today that we're able to sponsor
Doctor Ezeanolue, which I can say,
but I have to say it like, six times,
and it's not gonna come out right today.
So we're very honored.
You'll see also the speaker for two weeks from today.
Yeah, two weeks from today.
Dr. Chan will be here as well,
so put that on your calendar.
Thank you all for coming.
Doctor Ezeanolue.
Oh my gosh, I can't, now I can't say it,
is professor of pediatrics and public health
at the University of Nevada, in Las Vegas.
He serves as the director of global public health
and implementation research initiatives.
Dr. Ezeanolue, I cannot say your name,
research focuses on the use of implementation of science
and community-based participatory research.
Concepts near and dear to many of our hearts.
To enhance the quality and effectiveness
of population health sciences,
and to reduce health outcome disparity.
He serves on numerous national committees,
including the advisory committee
on immunization practices, or the ACIP.
NIH cooperative projects, American Academy of Pediatrics,
Committee on Pediatric AIDS,
Patient-Centered Outcome Research Initiatives, or PCORI,
and the Strategic Committee
on the American Board of Pediatrics.
Dr. Ezeanolue has been recognized
as Nevada's Public Health Leader of the Year in 2007,
Nevada's Healthcare Hero in 2008,
Nevada's Immunization Champion in 2009,
and the American Academy of Pediatrics local hero in 2010
for all of his contributions in public health.
We are very honored, and please join me
in welcoming the doctor.
(applause)
(mumbles)
I'm sorry?
- Do we have internet access?
- We do have internet access, I believe.
I hope. (laughs)
If that is the plan.
- If not, I can play it from my--
- Okay.
Jen, are we loaded on the desk?
Lookout? This one?
No, that's intros.
- It's an IW.
Ah there, I see.
- Oh, it's in, (mumbles) I'm sorry.
I was looking for it in PowerPoint.
Thank you.
- Okay.
- [Dr. Green] You're all set then.
- Yup.
- [Dr. Green] Good.
- I have to do this.
Okay.
Thank you so much for having me.
For me, coming to Rochester, when I got invitation,
was like homecoming for me.
I used to live here.
I left here 20 years ago.
My brother did his residency here.
My father was here for a long while.
Back in the '70s, this had been home for me
until 20 years ago when I decided I like a warmer place
and I moved to Vegas.
(laughter)
I'm happy to be back.
I just wanted want to deciding
have anything that I'm gonna discuss together
will violate your sense of food.
But what I want to do today is really to show you
very exciting what we've been trying to do
in terms of implementation research.
For some of you I told you a little story this morning
about how I actually got myself
to do and implement the shown research.
The idea is that I did the things I wanted to do.
I asked the questions that I wanted to ask,
and I try to find a solution to the things
that I'm passionate about.
I didn't know that the other things I was trying to do
was called implementation science
until I was told that's what it's called.
What I'm going to do today is to go a little bit about
the mother to child transmission of HIV.
What the problems are.
I'm gonna go a little bit about the challenges
of HIV testing, engagement, linkage, and retention in care.
Then I'm gonna show you one of a program we designed
and implemented in Nigeria recently
that was supported by NIH.
Tell you exactly what we think, how implementation science,
and community-based participation research
come together to help us improve health outcome
and reduce disparity.
So what is the problem?
Think about this, that in 2013 an estimate that 70.5%
of people living with HIV worldwide,
reside in sub-Saharan Africa.
If you look at that you find that this includes
80% of 16 million women, and also 85%
of those who are pregnant, and 91% of children
live in sub-Saharan Africa.
So if you look at that data, you'll find out the same thing
we're talking about if we are talking about
if we have been able to get it down here in the US,
what is happening there?
If you look at this (mumbles) 1.5 million women
that are infected with HIV that gave back in 2013,
that 54% of them in researching test setting
did not get HIV tested.
That means they became aware and even aware
of the HIV testing at the time of delivery.
If you look at only 60% of them received
anti-retroviral therapy again,
because they didn't know their HIV diagnosis,
and you look that in that same year
that 240,000 children were infected with HIV.
So let's put this in perspective.
I run the HIV program for the state of Nevada,
and in 2006, we put in a program in Nevada to well we said,
reduce HIV transmission from mother to child.
But over the year from 2007, to 2012,
actually until last year, we had no child infected
with HIV in the whole state.
So we know that it's possible to actually reduce
or eliminate mother to child transmission.
So that same year, I was invited (mumbles)
health policy fellow, and I spent a year
working with the secretary for health in DC,
and every day she would make me do the math.
She said, Eche you got to my office
because you were able to put in a program
that no child was infected with HIV in Nevada.
Do you know how many children that were infected
with HIV in Nigeria today?
We do the math.
That same year, 75,000 children
were infected with HIV in Nigeria.
So we divide that by 364,
and every day she made me do the math,
and every day she told me to do something about it.
Before that time I have never worked
in Nigeria since I left.
I left Nigeria after medical school 25 years ago,
and I haven't gone back since then to do any work
until this period, she wanted me to do something about it.
But there wasn't much I could do about it
because at the same time, there was many
universities in Nigeria working.
University of Maryland, Harvard University,
Duke, Hopkins, Columbia.
So there were a lot of smart people there working
and there was a lot of money being spent
'cause one of the things the secretary was concerned
that in that same year that 75,000 children were infected,
the United States Government spent 450 million
in supporting the country through all this medical school,
and this school of public health
to reduce mother to child transmission.
So what she told me basically was we are not getting
the bang for our money.
We're spending $450 million to get Nigeria had
only less than 20% of people screened for HIV,
and they were getting 75,000 children infected with HIV.
So I don't think if they paid you 450 million
this would be a good result for somebody to get,
so she was concerned about it.
Of the nine countries, or nine of the 15 countries
that account to 75% of 2.1 million people
that new infection in 2013 were also in sub-Saharan Africa.
But when I say that it looks like progress hasn't been made,
well progress has indeed been made.
If you look at this 2014 report
one of the things you see from this 2014 report
is that this was the first time since 2009
that the number of children infected with HIV
in the 21 priority countries that account for 90%
of children that are infected with HIV,
this was the first year it dropped below 200,000.
Since 2009, it has always been above 200,000.
This is the first year that it dropped down to that.
So that's a 43% drop from what it was in 2009
when more than 500, half a million children
were infected each year with HIV.
So you can see that 199,000 is a lot,
but that's a lot better than 550,000.
If you also look, you'll see that seven out of 10
pregnant women with HIV receive anti-retroviral therapy.
So things have improved a lot.
If you also look at six out of 10 of them
received anti-retroviral therapy during pregnancy
and during breast feeding to prevent
mother to child transmission.
To understand why we actually haven't been able
to eliminate totally, HIV transmission,
you want to look at the complex steps
that actually leads to child being infected.
Okay, what did I do wrong?
It's still up here, okay.
Where's the pointer?
No, where's the pointer?
- [Female] I think it's in the middle of that there.
The top one maybe.
- Okay, here we go.
All right.
So this is turn of events at least,
so if you look at those, you look at the proportion
of women who are HIV infected,
you look at those who are HIV infected and become pregnant,
you look at those who did not engage in prenatal care,
look at those who refuse testing,
look at those who got tested but who were not offered
with prophylaxis and it because it was not available.
Look at those who declined prophylaxis.
Look at those who did not complete entire prophylaxis,
and look at those who become infected
despite everything that you do.
So if you look at each of these stage's potential
for you to prevent mother to child transmission.
Okay, I did something wrong.
It's not moving.
What did I do wrong?
- [Female] I can get you to the next slide.
(mumbles)
- Okay, so if you look at this, one of the things you see
is the step each of them, you have a particular idea
of what you could do to prevent
mother to child transmission.
So it starts with your primary HIV prevention in women,
prevention of unplanned pregnancy among women
who are HIV infected.
Look at the preconception counseling.
Accessible, affordable, welcoming,
universal prenatal testing.
We offer in those who refuse, provide an air we support.
This is a very complex step for you
to actually prevent HIV intervention.
So it is not as simple as people think,
well if it has worked in Nevada,
why is it not working in Nigeria?
Or why is it not working in other countries
where there are problems with this?
So this is the four-pronged (mumbles)
that the United Nation and WHO comes together.
That if you want to look at this,
you want to look at primary prevention
of HIV infection among women of child bearing age.
You want a prevention of unplanned pregnancy
among those who are living with HIV.
You want prevention of HIV transmission for women
to their infants, and you want provision
of appropriate treatment for those who are living with HIV.
This is the biggest problem we've found in Nigeria
when we tried to assess what the problem is
because when she asked me to do something about Nigeria,
I really was out of place.
A, I haven't been there for awhile,
and I wholeheartedly believed that the people
who are working there are smart enough to have identified
the problem and the solutions of anyone.
I didn't think I was gonna have anything to offer.
But when we went there to look at it
this was the biggest thing we saw.
They have HIV testing of less than 20%.
We have close to 90% in this country.
South Africa has close to 90%.
So Nigeria account for 25% of the global gap in HIV.
So of all those 199,000 children
that were born with HIV that year,
Nigeria accounted for think about it,
for 75,000 or 70,000 of that.
So that country alone is important,
but that happened to be a country
that have HIV testing rate of 20%.
So to me, of all the other problem,
the poor access to anti-retroviral therapy,
the late identification of exposed infant,
the high loss to follow up, and poor attention in care,
the poor diagnostic tests for infant, which at four percent,
and less than 30% of male participation.
There is none that was as important to me
as the first and the last one.
The first one is HIV testing
where that is less than 20% percent.
But I also understand the culture of this place
to recognize that this is important.
It may not be as important in the United States,
of the male participation, but in these countries
the male partner do drive a lot of the resources
to get them to where testing is available.
A lot of the transportation to get where
the testing's available, and sometimes even the consent
of the male is required for HIV testing.
So not to look at this is a very important
thing that it means.
What I'm gonna describe to you is really the program
which had to put in place in terms of
reducing those transmission.
When I went to Nigeria to talk to a few friends of mine
that were working for the Harvard, Duke program,
Columbia, whatever the university was,
I told them, so what is the problem?
They told me well, we actually
couldn't find a pregnant woman.
It sounds funny that you can't find pregnant women.
They should be everywhere.
But what they were essentially describing to me
was the fact that most of the programs we have in the US
is established in the hospitals.
Every pregnant woman get tested when pregnant
when they went to their doctor for prenatal care.
They get tested when they come to the hospital.
But how do you do that in a country
where only 25%, 30%, 35% of the pregnant women
deliver in the hospital?
So even if you put all the best things in the hospitals,
and you capture 100%, which we haven't
been able to do in the US,
but if you capture 100% of those who come to the hospital,
you're barely capturing 35% of the pregnant women.
So that is not a viable place.
We were thinking about how do we find the pregnant women?
As funny as it might be, that was the biggest problem
because if you want to do that, you want to do it
in a way you can find the women repeatedly.
It is easy for women to access.
It's in a place where you can get women tested,
and you can find women with the result
to be able to link them to the appropriate care.
Think of it as where they've thought about it
also in Nigeria.
They went and did community-based HIV testing.
If you go and do community-based HIV testing here,
you have your Social Security number,
you have your ID card, national ID,
or your driver's license.
There's a way to identify the woman.
If you do that in Nigeria,
A, there is no Social Security number,
I can give you whatever name I give you,
there's no way to verify that.
The most important thing, I can give you my address,
and if you ask me the address where I was born in Nigeria,
I used to get my mail here Kiar, a church.
Kiar Saint Michael's Church.
That's how the mails come, in the little village where,
and then that's how you distribute that.
So there is no 5B permanent lane where you can drive
and find the person who have the HIV result.
What happened at the time is that after repeating
the community-based testing,
they would start with all these test result
that they didn't find the people
who have the positive test result.
So it wasn't working very well.
One of the things we did was,
I was talking to a friend of mine who is a bishop.
I said I can't find a pregnant woman (mumbles).
The question about finding the pregnant woman was funny
because she came down to I think it was California
during the American Academy of Pediatrics.
There were saying oh, for a program we did in Nevada.
She said well, if you have done all this in Nevada,
why are you not doing it in Nigeria?
I said well the problem in Nigeria
is that I can't find the pregnant woman.
She said, well why don't you come,
I'll show you the pregnant women?
(laughter)
I said, okay.
You think it was a joke, but I actually bought my ticket
and I went to Nigeria so he can show me the pregnant women.
We went to church that first day
and the priest get into the church, and he said,
I want every pregnant woman in this church to stand up.
I want them to come to the altar.
I want to pray for the safe delivery
and safe pregnancy for them.
What do you think happened?
The altar began to be filled by people.
So while he was doing that, that was surprising to me.
So I said, can you ask about the man?
He said, well if you're the man responsible
for this pregnancy I want you to stand by your woman.
Okay, so the men started, before we know it,
the men started standing by their women.
I'll show you a video, a little bit,
if we have internet access, hopefully we do.
But what we did was to actually say, wow.
So we can actually find the pregnant women here.
But what does that mean?
If you offer them the same HIV testing,
you're gonna run into the problem.
But this is where the experience here in the United States
would make you come, and this is where the CVS idea
that you see on the title comes in.
So when we couldn't get a lot of people
to get their flu shot from their doctor, what did we do?
We put them in Walgreen, we put them in CVS.
So why did we put it in CVS?
Why did we put it in Walgreen?
The reason that in every community around here,
or whatever that grocery chain is,
so when I say CVS, you understand what I mean.
Could be Wegman.
But in every one of these where is something
that is in every community that is accessible
to everybody there that they have to travel long enough
to be able to get it.
And this is a place they go repeatedly.
So one thing we know about Nigeria
is that Nigeria ranks number one in church attendance.
In all the 53 countries that were surveyed
by the FEW Foundation, with 90% of the population
attending church or religious service,
whether it be a mosque, at least once a week.
So this is a place they go.
This is a place they go week, and week, and week.
One other thing that you find is that people
don't really change where they go to worship
as much as they change the grocery store they went to.
So you might go to CVS today,
and next week Walgreen has a sale, you might go to Walgreen.
But you don't decide to go to this church today,
and next week you just go to another church.
Most people go to their same church
even if they go visit another church,
or mosque, or Hindu temple, or whatever that place may be.
But if it's one place they go to congregate to worship,
they keep going there over and over.
So we thought that that was an ideal place
to actually put an intervention.
But then, the second thing was how do you
actually put an intervention in a way
that is not stigmatizing in these places?
And again, if you go to Nigeria, it's a different culture,
but you can borrow the culture from here,
and that's one thing about doing global health,
is that you can go down to Nigeria,
and come back here with an idea
that you didn't think you had before.
So one of the things when I came to the US with my wife
is that her friends, she got pregnant,
her friends wanted to do a baby shower for her.
I didn't know what a baby shower was before then.
But you know, so they got together,
they made us play some games, and they bought us some gift,
and there was a little reception,
and they play some pregnancy games, and that was very good.
So we thought that that's a very nice place
to get the program, but we know that in Nigeria
the culture is more of a communal culture,
and you're not gonna put that kind of intervention
in place for one single woman.
So what we did was why don't the church
organize a baby shower for all pregnant women
in their church?
And then that's one of the things we did.
So the next thing was how do you actually put
intervention in that place?
What happened is that during that baby shower,
we put the baby shower here, and we do what we all do here,
we put in a health bay right there.
So the women are coming in for the baby shower,
for the reception, but as they're coming in
they have this free testing.
And one of the things we thought about
when we had a focus group we asked the women
why don't they get tested?
A lot of them were actually upset, they find out.
Everybody wants to test for HIV,
everybody want to test HIV.
Is that the only problem we have?
And we said, what is important to you?
That is when you really have to ask the community
what is important to you?
So we started getting some feedback from them saying,
well you know, I know more people who have died
from Hepatitis B than from HIV.
But nobody in their community knew what Hepatitis B
prevalence was actually, because we spent all the money
just doing HIV.
I said, well I know somebody,
remember that the number one killer for pregnant woman
in this country is postpartum hemorrhage.
Majority of the women don't even know
their hemoglobin level.
Things we take for granted.
So they would like to know that.
What about malaria?
So what we did was actually to stay with the women
and the men locally just to find out
what was important to them,
and to find out that the problem,
one of the problem of the programs
that we had in the country is that there was many
enter the HIV program, but then in putting the HIV program
singled out if you go to any hospital,
the best building there is the HIV programs
because they have received funding.
If you go to the community the best program
built in there is HIV program.
But let me give you an example of what happened
when I went to Nigeria.
I went to Nigeria to visit one of the programs
that was HIV program.
I went in there and I was coming out.
I meet a classmate of mine.
He said, oh I didn't know you come here, too.
Does that tell you anything?
This is a HIV clinic.
So all he was in his own mind
he have already made assumption that I was HIV positive.
That was why, oh I didn't know you come here.
But if you are living that place you are a woman with HIV,
will you want to go to that building?
No, whether you have HIV or not,
people see you go in, come out, you have HIV.
And that's one of the stigmatism in there.
So what we tried to do is actually how do you get along
with actually integrating this or that test?
That this stigmatizes the idea of HIV-only test approach.
So that was another intervention that we did.
The third thing that we did was how do you actually
let them know why they are doing this testing?
Instead of, come here let me draw the blood,
I need to get you HIV tested.
The first response you get from people is that,
have I done anything wrong?
Why do you want to screen me for HIV?
If you ask your partner to screen for HIV,
you say oh, you think I'm cheating?
So there is always this defense about getting HIV screening,
but then when you offer it as part of a testing there
and said well, what is important to you?
Why don't you add sickle cell to it?
25% of the population have sickle cell trait.
So there is not stigmatizing.
Most people know somebody with sickle cell trait.
Most people know somebody with sickle cell disease.
So why don't you integrate that to the HIV testing?
That's essentially some of the things that we did
in terms of intervention.
We wanted to make sure that the diseases
that we integrated was disease that are common,
that the community considered important to them,
and also the diseases that are not stigmatized
in the community.
Also, that there is something that you can do for them.
So if there wasn't anything you can do for the disease
we did not include them.
What we did was we have an integrated testing approach
which you see there.
We have HIV, Hepatitis B, sickle cell genotype,
hemoglobin, malaria, and syphilis.
We actually presented this as
a healthy beginning initiative.
One of the things you see as simple as it might be,
when we put in the program we did not put a HIV program.
We put in a healthy beginning initiative,
and you might say what's in a name?
Well it was important because what happened is that they...
Okay, what I do?
Yeah, I wanted to see if we could go in.
(laughing)
I have it on that flash.
Okay.
Do you have internet here at all?
- [Female] We do have internet, yes.
- Okay.
(mumbles)
I am on it today, right?
Okay, I can just go in there.
- [Female] New account?
- See, we don't have internet at all?
- [Female] No we do, you're in the internet,
but it's telling you, your account somehow is not working.
- Can you sign in to the internet?
Huh?
So how do I get to the web?
- [Female] I think you're on it 'cause that's our internet.
- Not intranet, internet.
- [Female] Internet, but you're on Sun, so you should be
yeah, like pick one.
Yeah it doesn't like your...
Your world.
Yeah, want to try another--
- Try that one?
- [Female] Try the Chrome.
- Okay. Sorry.
I wanted you to see this video because it would
actually help you understand what we did.
Let's see.
(mumbles)
- [Female] Thinking.
- It's saying setup Chrome.
- [Female] Yeah, but we don't want to set it up.
Yeah, you're still getting--
- Anybody know how to do this now?
- [Male] It looks like the Chrome, just the site is down.
- [Female] Right.
It looks like you're getting to the internet,
but the Health Sunrise is not--
- Can I play from the flash drive?
- [Female] You could try.
I mean the flash drive's going in there.
- Okay, so let me do it here.
- [Female] Is it on this one?
- Yes.
- [Female] So go, yeah.
Mm-hmm.
- [Narrator] Healthy Sunrise Foundation
is a non-profit organization dedicated
to the service of humanity
with a core mission to improve birth outcomes
through enhanced maternal child health--
- So what I want you to see, I will let you watch the video,
but I want you to see actually the baby shower program,
what it looks like.
- [Narrator] 287,000 pregnant women died worldwide--
- That's me, by the way, and I'm dancing.
- [Narrator] In 2012, 6.6 million children died worldwide
before reaching their fifth birthday.
- So this is the church, so you can understand
why we went to the church as our CVS.
- [Narrator] Assisting communities,
and develop and implement culturally appropriate
and effective interventions.
- I want you to see that is where the bishop showed us here,
he called out the pregnant women
for them to come out to pray.
- [Narrator] HBI--
- And you see the man come stand by the woman.
- [Narrator] That utilizes--
- I want you to see what happened here
because that was a very big change for our study.
Before we designed it at the priest,
we give it to the woman, but here you see the change.
We gave it to the man to give to the woman
and I explain to you (speech drowned out by narrator).
- [Narrator] Provide health interventions
such as health education.
- I can explain that.
(energetic music)
- [Narrator] On-site laboratory testing.
And celebration of pregnancy.
Male partner involvement is critical to the success of HBI.
Baby reception welcomes a new life,
and provides post-delivery follow up
at the most vulnerable time for women, and their families.
HBI respects, celebrates, and supports
the pregnant woman and her family.
18,000 children die every day.
Majority of these deaths are preventable.
- So what I wanted you to see from those program
is exactly what we actually did in the intervention
is that we find a way for finding pregnant woman
which was the biggest problem that we're having.
But if you find the pregnant woman,
how do you put an intervention
that is not stigmatizing in a way?
And if you see that it's HBI support the pregnant woman,
nobody's talking about HIV testing,
which is one of the things we think
was a really big problems.
Is that every program that was there is prepped for,
it's HIV, that's all you could do.
So almost at a time that people started to resist that,
and say why do we just have to stand here
like that's all we got, that the only problem?
The second thing is that you wanted to find a place
that if you do test people that you can find
results back for them, and you can actually link them up
and find them to link them to the clinics.
You also satisfy the place that if you do
link them to clinic and they get lost to follow up
that you find a place where you can reengage them.
The second thing is that during the baby receptions
initially when we started it, the party was for the women,
and the women came in the first time,
then the men started to say, well why are you guys
just going over there for the women's program?
That actually started to hold it back
until somebody said wait until,
what we used to do is that the material is,
they used to have these little bags
and they give to women who are HIV positive.
So if somebody, if you are HIV positive woman,
and PEPFAR puts in some nice bag for you
and gives you that everybody knows
that this is given to HIV positive woman, will you carry it?
So these are some of the things people didn't do
without actually thinking about it.
So what we did was we said okay,
we're gonna give those bags to people
but we're gonna give it to all the pregnant who tested.
So it more like I'm tested,
here is my you know, you have the bag.
So the bag only show that you have tested.
It doesn't tell about your results
instead of just having that for HIV.
The second thing we did initially
that we were given the bags to the women from the priest.
So after the priest prays for them,
it was the church own baby shower,
so the church gives that to the pregnant woman
during that reception.
During that reception we allowed each church
to integrate their own, whatever they wanted,
so that's why you see the variety.
You see some places where the church decided
during that period the man and the woman will feed.
You see where they decided to do a catwalk
by the pregnant woman, you see where they decided
to show love and the man has to carry the woman.
So whatever you wanted to do, all we are trying to do
is to de-stigmatize the idea of HIV testing alone.
To put it in the context of a healthy beginning,
that every child that is born deserves a healthy beginning,
and that healthy beginning begins with the child
during the pregnancy.
So that's really the whole point that we're trying to pass
across to everybody that was there.
How do I make it all full length?
Okay.
So when we thought about this again,
so we now went to NIH and said, well maybe
we can actually do the first thing,
which is actually increase HIV testing among pregnant women.
And also, increase HIV testing among the male partners
of the pregnant women, and increase linkage to care
among HIV infected patient.
This is something they have always wanted to do.
A, there was a low male involvement,
and there have been studies coming out
that show that low male involvement
was affecting the female uptake of prevention
of mother to child transmission.
And that even we know that even after you get the testing
because it was done in the community without a linkage,
that there was a poor linkage,
so that they have a result of positive result,
and they didn't know what to do with it.
So these our three aims in this study,
is to try to decide whether this is actually going to do
any of these three things that we need.
What we proposed to do, and what we did was
we picked 40 churches.
We used a cluster randomized design,
we picked 40 churches in 40 different communities,
and we randomly assigned them
to either the intervention, or the control.
In that period we actually got the community
to help us in design which is very important
in terms of doing this.
The community developed this program as part of the program
that the church wanted to provide for their pregnant women.
That's the way it was sold to the bishop.
That's the way the bishop sold it to the priest.
That's the way the priest sold it to the pregnant women.
This is our church program to do that.
To even make it more important to them,
instead of hiring such assistants
which we had funding to do in the research,
we decided to form what are called a health team.
So in each of these churches we developed a health team.
A health team is made up of five people.
One is the priest, one is the leader of the man group
in that church, the other one is the leader
of the female group, and then we have two,
what we call church base volunteer health advisors.
These volunteer health advisors,
we train one of them to collect blood.
Imagine it, they don't have enough phlebotomists in Nigeria,
neither do they have here, but here most people
are trained to do that.
But in Nigeria, there's actually no
specific training for phlebotomists.
It's done by lab scientists,
and there weren't enough of them.
But we actually found out that we could actually train
those people within a couple of weeks
to actually draw blood safely.
So that's what we did in those places.
One of them has to be somebody that's educated.
Remember, some of this was happening in rural areas
where a lot of people weren't educated.
We wanted to make sure that they actually
could collect a data report.
So in each health team were five people,
but those five people were selected
from each of the churches.
That was one of the things we started
from early thinking about sustainability.
When our research is done, what happens?
So when we studied equipment, we had planned
that we're gonna be there for two years
because we're supposed to recruit 5,000 people.
One of the things, once you got the report
I called my co-investigator in NYU
and said we got the grant.
He said, what did we say again?
I said we're gonna recruit 6,000 people.
He said, are you out of your mind?
(laughter)
I said, but you already proposed that.
He said yes, but I've not been able
to recruit 500 people in Ghana.
So I got a little bit scared, I have to tell you.
So I took a flight and went to Nigeria,
and say boy, this is another one that I just got,
and we're gonna recruit 6,000 people.
How are we supposed to do this?
So we actually spend this times
in getting the community involved.
Spend those times in getting them,
that's when we changed some of our protocol.
We revised our protocol 10 times in six weeks
because once we heard, you know it's different
than when you write it in your room.
And then you get down there, they said okay, simple things.
It wasn't anything different in the protocol.
What did we change?
We initially had said that the mama packs,
which is the gift that the priest will give it to the woman
after praying for them.
We changed that.
The priest no longer give it to the woman,
they give it to the male partner of the pregnant woman
to give to their partner as a present.
That single change, you'll see what it did
to male participation.
The second thing that we did differently
is that we changed the baby reception after the baby is born
to coincide with the time they do infant baptism.
That's supposed to be about six to eight weeks,
but that is also the time you get your first PCR
for HIV exposed children.
So we use that part to increase our HIV testing
for HIV exposed children.
Other thing that you'll find out
that we did differently was the health teams.
We had research coordinators supposed to do these positions.
We didn't have research coordinators.
We changed to the health teams within the church.
What happened is that we started this study in January.
By June, in six months, we had 6,000 people.
Our problem became we told the community
that we are gonna be there for two years.
We got our data in six months, and we're about to leave,
and they said oh, it was all about the data.
This was something we have tried to preach
that it wasn't about the data,
that we were interested in the community,
we are gonna be here for two years,
but suddenly we got our data in six months,
instead of two years we thought.
And here we was trying to stop this.
That's actually how we started a non-profit foundation,
the Healthy Sunrise Foundation.
Was basically to continue this program in a basic way
because what they told us is that majority of work
you're actually doing doesn't cost you money.
The priest say well the prayers don't cost money
because what happened as we started the program
we were supposed to be, and that's how we got to 6,000,
we were supposed to be in 40 communities.
But then when the other churches that weren't involved
found out that some churches were praying for pregnant women
you may not understand this, but they left their church
to go to receive this prayer from the priest.
This doesn't cost money, but we found out
that it was very important to them.
So what we did was to say okay,
if you are in this community or intervention,
there are smaller churches around you
that want to participate they followed
the randomization of that community.
If you're here and you're control,
if there are small churches that want to participate
they can participate but follow the randomization of that.
So we suddenly went from 50 churches to 200 churches
that wanted to participate in this (mumbles).
And all of them were doing this.
Remember, we're using volunteer health advisors
so they weren't paid.
What we did with the money we saved from that
we used it to provide the other people
more of the, continued to provide them
the attention which was testing.
The HIV testing was actually free.
The thing that cost us the money was Hep B and sickle cell,
which was the things we introduced newly
that was paid by the grant.
Apart from that, the government was paying
for the HIV testing.
So what we did was actually put that
and then put those 200 churches,
those 200 hundred churches do what they normally do,
so they will have the same because I was concerned
about the women moving from one church
which you have to notice when you do studies
in developing countries, is if you do randomized studies
if you don't control for people moving
from controlled intervention,
you're gonna end up blunting your difference.
So what we did was actually (mumbles) something
and put intervention and control.
So there was the prayer session
for the control and intervention,
there was the baby shower for the control and intervention.
The difference is that during the baby shower
in the control, they just had the reception,
and they would ask them to go to their doctor
and get prenatal care.
We knew that that alone is a quasi-intervention,
and that it was going to increase HIV screening.
So we did treat our hypothesis was not
that we increase HIV testing by 20%.
Our hypothesis was no matter what the HIV testing rate
is in the control, that intervention will be 20% higher.
So if the HIV testing in the control was 40%,
you will be 60% at least, in the intervention.
So that was an effect size instead of
just an increase of 20%, so that was how we overcome that.
Yes.
No, they had this on three platforms.
They had the prayer session
where they identified the pregnant women,
and that's who they recruit them into the study,
whether intervention charge, or the control charges.
They both have the baby shower,
which is where they have the reception,
then they both had the baby reception,
which is where they come in after the baby is born
for post-delivery (mumbles).
So they had these three platform.
What is the difference?
The difference is what happens during the baby shower.
During the baby shower in the control
the women follow the standard care in the community
which is go to your physician and get your test done,
and get your prenatal test done.
In the intervention group, we explain to them
why those tests for those six diseases were included,
and we'll factor them right on the spot
at the charge during the baby shower.
That was only two intervention.
Okay.
So this is what we got.
What we got the first time was in the control
like we expected, it wasn't the 20%
that everybody had before, it was 54%.
Because we did increase HIV in the control
because we had a baby shower for them,
we asked them to go to the doctor,
so we knew it was gonna increase.
But this is where we have an intervention.
We had 92% of those pregnant women in those plan tested.
No matter how we calculated it, no matter how we diced it,
no matter how we did that was the probability
that you're gonna be tested as a pregnant woman
in intervention church was 11 times higher
than if you were in the control.
Again, remember this simple intervention we did.
We did almost all the same thing,
and we knew that even if you did that alone
and don't offer testing to them,
and you just send them to the doctor,
just as those involvement prayer sessions,
the thing that don't cost money,
then you still get up to 54.
Then if you added doing that testing on-site by 1/3,
they actually can approach 92% with that.
The second part was the male partners.
This was very interesting for us,
and we see initially we didn't start
where we had about 3,000 men that was recruited.
Now we have 10,000 people in this study,
but it's no longer a study now.
It's just a follow up now because we ended it.
So it's 3,000 people that we recruited here initially.
We got back and got 83% of the males participating.
You may have seen studies from Kenya, from South Africa
where they've done so many different intervention
for male partner involvement.
They've sent letters of invitation to them,
love letter from their wife, from their doctor.
They have done different things,
and each of them have increased participation to 30%,
have increased participation to 40%.
This is the largest of any male actually coming there.
I can tell you an example, and this is cultural.
When I got here, my wife was in labor,
they told me I had to go in.
I said, why do I have to go in?
So normally in Nigeria when the woman is pregnant
and woman goes into labor, you are the man,
you wait outside until the baby is handed over to you.
When I came to the US you are supposed to go
into the delivery room.
That's how you support your wife.
But that was not cultural for me so I resisted it.
I'm a doctor, my wife is a doctor,
but it didn't matter your level of training.
It didn't matter your level of education.
That was not culturally what is done there.
So to get the man to go to prenatal care
with their wife was nuts.
Somebody has to make a living, they will tell you.
But what happened is that on Sundays,
neither do the men, nor the women, work.
And they go to church.
Suddenly there's an opportunity for the man
to express love by his wife by giving his wife
a present, which was the bag.
So you will see that there is there,
you see the priest come in and said,
oh well you know, come out if you're pregnant.
I'm gonna pray for you.
If your husband is not here you call him
because we have a gift for you from the church.
Again, that's ownership by the church from the beginning.
It was the church giving the present, it wasn't us.
So one of the things that happened
is that you see the woman go on the phone and say,
you better come here now or there's no food for you
when I come back.
(laughter)
Actually, I didn't think there was any bigger pressure
you could have put on a man, more than that.
When there was a public display of affection,
and you're not there for them.
So your wife wants you to come and give her the present.
That was one thing that actually helped us
a lot in the male.
Well you can see that we did get about
83% of the men involved.
More importantly, it's not just that they were involved,
it's that there are 86% of them tested for HIV.
And if you're wondering what it would have been,
consider the same thing in the control
where we did the same thing, apart from those two things,
but remember, when the man comes to give the woman
the present in the church, right there is the testing
for both of them.
Both of them are offered the testing.
So that is what happened, and you have the 86% of that.
Again, telling you that if you are a man
in the controlled intervention,
and also if you're getting tested,
it's close to 12 times higher
than those who are in the control.
The other thing we did also check was linkage to care
when we identified them and you see that
this is the last part of our study
we have to now follow down the road,
but you shall see that in the intervention group
we had 85% of them linked to care
for those who are infected.
So these are all the women who are infected with HIV
in the linkage to care, compared to 48% in the control.
You have to access to delivered during that period
you find that that wasn't true
because once they're identified to be HIV positive,
the program's already there for them to be linked to.
The problem was initially getting those people tested.
That was the biggest thing,
and then linking them to initial care.
Once they linked them to the care
you find out that there wasn't that much difference
in terms of whether ones are in care.
This continues currently in care,
once we got them in care you find out
that you can actually retain them.
You find out that's almost 80% of that.
So this is about all the things that I wanted to show you,
which the women pointed out to us.
If you look at HIV prevalence among the women,
it's three percent.
This is not different from the real thing
that been found in Nigeria.
You see studies initially in Nigeria was 5.4%,
but what happened is that almost all those studies
were done in hospitals where there was a selection bias.
So if you go to any of the community-based prevalency
Nigeria that have been done,
that's the prevalence that you'll be getting.
This is something that also is different
than what we see in the US.
Majority of the rates here in the US is also among men,
but in Africa and Nigeria, it's reversed,
where the majority of infection is actually women.
There are biological reasons,
and a lot of other reasons for that.
One important list also, look at this.
It's Hepatitis B.
The same thing they were pointing to us
that they knew somebody.
So you find the man with almost two percent
of HIV prevalence, but look at the Hepatitis B.
Six percent.
Look at the woman with three percent,
look at Hepatitis B.
Look at sickle cell.
Again, one of the things we were talking about,
if you look at the almost 21, 23% of the of the people
in terms of sickle cell trait,
this tells you bad news, which is what we already know,
that 80% of (mumbles) with sickle cell in Nigeria,
died before age five.
So a majority of them did not survive the child bearing age.
This is the thing that surprised us here
is actually the syphilis.
We expected okay, if you have HIV
maybe there is something related, but look at that.
We screened close to, more than 2,000 women,
we only got 11 people with syphilis.
There's something even in men, which in 1,000
we only got .6% in there.
So this is some of the things that we actually thought
that if you're doing those interventions
that you should actually find out from the community
we included these tests.
Some of them now, we no longer include syphilis
in our testing now because we think it's not
as prevalent as it were, but now we include these three.
We have HIV testing, we have Heb B testing,
we have sickle cell, and in most of the programs
we're doing in Nigeria now,
we integrate this testing together.
The good thing about them is that
there is intervention for each of them.
If you find a woman that is HIV positive,
you can prevent the transmission to the baby.
If you find one with Hepatitis B,
you can prevent transmission to the baby.
If you find a woman that have sickle cell trait
you can screen the child, and you are able to start
that child on penicillin prophylaxis
and you can prevent deaths.
So there is things you can do for each
of the three things that we integrated.
There are challenges that we learned,
and I don't know how much time that I have,
but these studies are not without challenges.
We can stop here for questions,
I can go through them quickly.
But one of the challenges that we have
is that at the beginning we did have
somebody was asking this morning
about challenges about looking like them.
If you want to a study in a community way
don't look like them.
Well I look like a Nigerian, but you think that that's,
because of that, that is good.
That I should have no problem in doing the study.
No.
When I went to the study, the priest listened to me
and said this is a nice, great things,
why didn't you take it if it was such nice,
why didn't you take it away when I was born?
Why did you come here?
And he looked at me and said, you're not even Catholic.
Why are you coming to a Catholic church?
So again, just because you look like people
doesn't mean that getting the study done
will be easy for you.
What was easy for us is our understanding
importance of community ownership,
and letting them take ownership of this project,
become their own project.
That's why that program is still running up 'til today.
Because they took it as their program
and saw us as supporting them to do this
instead of a program where they were actually supporting us.
The other thing that we did, as I mentioned before
was getting those things, getting the women,
getting the men involved in those things.
There were a lack of trained research staff
with proper knowledge of HIV
so we actually had to spend a lot of time
training those judge-based health advisors.
It was worthwhile at the end.
At the beginning it was a lot of wasted research time.
Your NIH grant time funding is running,
and you haven't started but we spent six months
doing the training, but when time we started recruitment
from the one in six months we had all our equipment done.
So it tells you that the time you invest
in getting committee buying into community program
is actually very important.
There are lessons we learned from interventions.
We thought that what we were giving
was actually a little mama pack.
But we didn't know that it was enough
to make people go to another church
to get another mama pack.
Well that happened, so we have people
who were going to one church and get there,
but again, why do you think we were able to count them?
The people that we use in those churches
were church members.
And if you noted (mumbles) majority of them know
who is their church member.
So they could actually, no you're not from our church.
You're from the other church.
And then we're actually able to eliminate a lot of that.
It doesn't mean we eliminated all of them,
but that was one of the thing that happened to them.
The unintended consequences that you wouldn't believe
that we found this out, none of those women
ever hugged me for actually testing them for HIV.
Women would come to me and hug me,
and say thank you so much, this is the first time
my husband kissed me since we got married.
You may not understand the part of those in those places,
but then you get to something else,
some of the women who have finished having a baby said
I never want to have a baby.
We're actually looking at that now
because what we found out some of them would call and say,
well I went back to try to have a baby
so I can participate in this.
I never felt celebrated when I had my babies,
and now I want to.
So the good thing, wasn't intended
for people to have more babies, but it does tell you
the power of people wanting to be celebrated.
And that if you wanted to do the HIV screening
and you find something that is not stigmatizing,
but something that is celebrated about it,
that people do actually flock to it
and get tested without knowing exactly,
without making you look at it negatively.
We talked about HIV being a female focus program
and what we did to change that.
The data collection is one of the things
you have to spend time if you're doing that
in any developing country.
So if you're doing global health
and you plan to go to a place
and spend two weeks to collect data,
you have to be able to make sure
that you did a lot of time spent in planning.
If you want to develop a survey,
do not develop a survey from here,
take it there, and get it administered.
Send it in time, let them look at it,
let them give you input.
Do the work here before you go and see
if you get something done in two weeks,
but it's not that you spend only two weeks
in designing a questionnaire that you downloaded
from a study that was published in Hopkins,
and you take it to Nigeria.
It's not gonna work.
If you go there they'll just give you the answer you want to
and at the end you're not actually gonna be able to
design a very good intervention.
Get input of the community
even in the data collection forms.
We revised our data collection initially from four pages,
at the end of the time do you know what we had?
One page.
Because the community say, oh no, no.
Nobody's gonna fill these four pages for you.
Why don't you come down what do you want in the data?
So we went to specifically the things we want in the data,
and we were able to fine tune that important to one page.
And with that one page, we had almost no missing datas,
it was easier to complete, but we had their input.
We also had their input about how to ask the question
because we included a lot of things here in sickle cell,
a lot in contraception, so we have to learn from them
how to ask the question.
For example, the Catholic church would not allow me
to ask for contraception.
But they would allow me to ask for child spacing.
In asking for that I said, what would you like to do?
Would you like to space your children?
If you would like to space your children,
will you use some help doing that?
What kind of help would you want to use in this?
Again, I could have asked,
what kind of contraception do you want to use?
But the Catholic church wouldn't want that.
So again, I was working with both Catholic church,
Anglican church, Pentecostal churches,
but you have to be sensitive to that,
but they would allow me to talk
everything about child spacing.
To me, there wasn't any different,
but to them it was a huge different,
and that's something that is culturally sensitive
that you have to understand in those terms.
The platform that we thought that we actually use,
and this is the platform that I try to use
when I evaluate any grant that I see.
Now that I sit at NIH review panels,
I want to make sure that if I see a grant,
that I want to make sure that my grant is visible.
They are using a widely available infrastructure
that they can actually get it done,
and that it can be reproduced.
I want to make sure that it's acceptable,
that it's culturally adapted
and it's family centered in these places.
If it's not, majority of the time you can get the result
because you're spending the money,
and once the money stops that is not
a permissible target money.
That's a good thing there again that it's sustainable,
there's a long-lasting impact.
I can tell you the truth, if we had brought in
our own research team, did all the training,
at the end of that, they actually can carry that program on.
But right now, we don't do anything.
When I took NIH there last two weeks
they went there and it was surprising to them
that all the people running the program were church members.
My research had ended a long time ago,
and these things have been run by them again.
So a lot of the things that we did here
that was also important is that this was a framework
and we have added a couple of things to it.
A few people went with me from Yale
because they had me present this at the beginning
at NIH and they went to there, and they wanted to enter
prenatal screening for depression into it.
So they just published they're study
and they just got the arrow one.
What they did was integrate screening
for postpartum depression.
They say, you have all these pregnant women here,
why can't we do that here?
Then they developed their own intervention from that.
The other thing we did was the role of male partners
and up take of modern contraception.
That's also added.
Another thing we did was targeted
newborn screening for sick cell.
The platform that you have you can actually adapt
to so many other things.
This time I went last time, the CDC data was saying,
you have enough men here that I can do prostate screening.
Again, you can do whatever you want to add at this platform.
I just want to add that it does take
a lot of people to do this,
and there is a lot people who suggest still had made
research revising so many times to make it good.
If you do once you can go to that website.
I don't know what's wrong, but healthysunrise.org.
You can see a lot of the project that we did
in different communities.
And you can see how different committee adapted
the things they wanted to do.
Thank you.
(applause)
Yes.
- [Female] We're out of time,
I just have to interrupt for one second.
If you have to leave, that's fine.
Please fill out your evaluation.
Doctor Ezeanolue can stay for a couple of minutes,
and we have the room for a minute if you have questions,
but understand if (mumbles).
- Thank you.
(mumbling)
So this was important.
Thank you, you brought that up.
So while we had to drew the blood,
but they didn't do the testing.
So what we did is that the HIV testing
that was done by the treatment areas.
They drew the blood and sent it to them,
and they would once had did the testing result,
but the only good thing about them
is that they can find who have that result
when they come back to look at them.
But the same small community,
the same people in that church they would draw the blood,
but they don't do the HIV testing.
They don't know the result of the HIV testing.
So that was important.
Yes.
Yeah.
No, I wasn't sure.
Initially we thought you will see it
in a lot of women more than men.
There are two hypothesis that we have.
One of them we say well, is it directional,
in that you in pregnancy you may get that directional
in terms of that, but secondly the thing we find out
culturally that they were trying to explain
to us was like it's the way you were pregnant
in that culture you get better food.
So they almost change all their resources
to feed the pregnant woman.
So actually, people do not understand why women get pregnant
much more times in this community.
Some of them is done.
They get pregnant, their husband takes good care of them,
they get better food, they get better things done.
And there may be one of the things I think maybe more
than our biological reason for it.
So I think it is more of that one of the things we did
in this program is that they were talking about,
we allowed them to talk, one of the things
they talked about was nutrition.
About what you eat when you're pregnant.
They all spent, we didn't do that.
It wasn't pat of our study, but each of the community,
remember we allowed here 40 communities to modify this
in terms of what else they talk about,
as long as it added things we had.
So one of the things we'll find consistent in all of them,
all of them talked about nutrition during pregnancy.
That was important thing to them.
Yes.
(mumbles)
Yes.
- [Male] How did you (mumbles) for the actual,
but the actual data (mumbles)--
- Yes.
(mumbles)
On the population level?
- [Male] Exactly.
- Yeah, so in actually the topic
we had an implement science meeting about in Nigeria
on Sunday, I came back on Sunday.
The title of my presentation was
going from guesstimates, to estimates.
And they're taking away the guess
because most of the things you see were guesstimate
because again, they were not done
in the community population level.
They were done in the hospital settings.
So the USAID is putting this program now and (mumbles).
So what they did, they identified the 34 local governments
in Nigeria that account for 90% of infections in Nigeria,
by using this kind of program.
What they're now doing is that they're putting this program,
they're supporting the scale up of this program
in those 32 states.
So that's the discussion we're having with them.
Also, we are leaving this infrastructure now.
We just had a new grant
for disease preparedness and management.
And to be able to continue these things
in the community like that, that you can actually,
because of the cost that is actually minimal
to actually do this, that you can continue.
Remember also, instead of you being interested
in Hepatitis B, you'll be interested in Hep C,
and all of you are drawing blood from these women.
I draw one blood, and on that platform
you can do the sickle cell, the HIV testing,
the prostate screening, whatever is it that you want.
But by the way, because we have a place
you can come back and do them,
you don't have to use the rapid test, sort of say.
You can go back, get it done in the lab,
and come back with the results
because you have a stable community
that you can re-find and re-find the people.
So there is a lot of opportunity.
One of the reasons that I'm actually here at Rochester
is to let you know that if those infrastructure do exist,
and if any of you is interested in collaborating
in terms of research, that is our infrastructure
that many people have had.
We have a collaborator from University of Chicago
who has gone down to actually look at Hep B,
and now they're putting a national program
to eliminate Hepatitis B.
But how are you gonna do that
if you actually don't get it at a community level?
And that's one of the things that I've adopted for that.
Thank you.
(applause)