Community Voices in Political Decisions: Why, How and Steps to Action

Kim Ozano: 00:00:04

Hello listeners, I'm Dr.

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Kim Ozano and this is Connecting Citizens

to Science, a podcast where we discuss

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how researchers across the world try to

connect with communities and people to...

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Solve global challenges together.

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This is a second part of a two part

mini series where we have been really

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focusing on health system strengthening.

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And today's episode, we get

to hear from two advocates who

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have been acting within health

diplomacy spaces and as researchers.

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We hear from Emmanuel Zaizay, who

is affected by Neglected Tropical

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Disease Buruli Ulcer, as he talks

about his experience of growing

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skills and capacity to communicate the

needs of people he is representing.

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We also hear from Maurine Murenga,

who is a TB advocate and has been

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present in high level UN meetings

to represent her community.

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She is open and honest about both

the strengths and opportunities of

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being an advocate, but also what

this means to her on a personal

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level and what she's experienced.

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Her open reflections are really

critical to how researchers function

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when engaging with communities.

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Enjoy the episode

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This episode follows on from the

first episode and both are from the

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Centre for Health System Strengthening

at the Liverpool School of Tropical

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Medicine, or CHESS for short.

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In the first episode, we focused on

something called health diplomacy and how

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researchers can advocate for health system

strengthening approaches and community

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voices in these health diplomacy spaces.

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So if you haven't had a chance to listen

to that as yet, please do go back.

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It's really quite enlightening.

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One of the guests from

that first episode was Dr.

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Kerry Millington, and she's joining us

today as a co host as we speak with Mr.

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Emmanuel Zaizay and Ms.

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Maurine Murenga, who are

both experts by experience.

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They both have lived experience of

navigating complex health systems

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in different contexts, and they

are advocates for strengthening

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health systems and care pathways.

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They are going to help us add depth of

understanding about how best to embed

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community knowledge and lived experience

into these health diplomacy spaces.

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Maurine Murenga is a TB HIV survivor

and coordinator of TB Women.

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She is also on the steering committee

of The Union's working group on gender

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equity in TB and very impressively,

closed the UN multi stakeholder hearing

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on the fight against tuberculosis.

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We will also be hearing from Emmanuel

Zaizay from Lofa County in Liberia.

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Emmanuel is a person affected by the

neglective tropical disease Buruli

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Ulcer, and he will be speaking

about community engagement from his

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perspective as a person affected.

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We have heard from Emmanuel before

on season eight, episode three.

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So if you want to hear more

from Emmanuel, check that out.

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So, for this episode, let's hear from Dr.

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Kerry Millington.

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Kerry, welcome to the podcast,

this time as a co-host.

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Tell us a bit about yourself and then

set us up by outlining how the existing

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political processes around health system

strengthening are trying to include the

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voices of people with lived experience.

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Kerry Millington: Hi everyone, I've

been working in academia for over 20

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years on global health and most recently

I've been working with a range of

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stakeholders to ensure health research

informs policy and practice to improve

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health and sustainable development.

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I'm privileged to work with affected

communities and advocates whose voice

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should always be up front and heard.

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For example, I work on tuberculosis, the

world's leading infectious disease killer.

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It was wonderful to hear the voice

of the TB community so energised

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and loud at both the United Nations

multi stakeholder hearing on TB and

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the United Nations high level meeting

on TB, which was warmly welcome.

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So on that note, let us hear the

voice of our first guest today.

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Maurine, tell us the story of

how you became an advocate.

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Maurine Murenga: Hi, my

name is Maurine Murenga.

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I'm from Kenya.

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I'm a mother of two.

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I became an advocate when

I was diagnosed with HIV.

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During that time, there was no treatment,

and therefore HIV was like a process.

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You, you are diagnosed when you're

in stage one or two, and slowly

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the disease progress, and then you

reach stage four, and then after

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stage four, people would die.

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And what I saw was that our health systems

were not strong enough to handle the

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number of people who went to hospital

during stage four in their final stages of

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the AIDS disease, and therefore they asked

people to stay at home and die from home.

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It is then that as, communities of people

living with the disease, we decided

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to, we were trained on home based care

because of the stigma related to HIV.

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I learned that, most of the people

who are actually in stage four had TB.

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Most of the people who die of

TB actually die of preventable

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disease, of a treatable disease,

and therefore it should not happen.

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Everyone, regardless of where

they are, needs services.

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So that strengthened my urge to

join advocacy very seriously, HIV

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and TB advocacy, to ensure that the

generation that comes after us do

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not fight the same battles we fought.

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They don't lose lives

that can be prevented.

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Kerry Millington: Thanks so much.

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Emmanuel, tell us the story

of how you became an advocate.

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Emmanuel Zaizay: So I began to advocate

on the REDRESS project when I was

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diagnosed with Buruli Ulcer, from

the health facility in Lofa County,

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precisely, Kpakamai Health Facility.

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With REDRESS I went to all of the

activities and from the interventions

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meeting where I served as observer

the meeting, where they were training

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health workers in different areas or

teaching them how to part diagnose NTD

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conditions and how to see if, if what

is Buruli Ulcer and what is leprosy.

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From my actions, I was chosen to serve

as co-researchers in the process of,

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uh, doing patient survey, new patient

survey, and also doing a follow up and

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also from the baseline aspect, where

we went to do health workers interview

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to know how many cases can surface a

month or a day within the facility.

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I serve as peer advocate and

also where other people call me,

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other persons affected, call me.

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'Oh, please, please come for me.

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I'm in this condition.

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Please come and talk to me',

and I go and share my stories.

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And that is what I do.

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Kerry Millington: And how do you

think speaking out breaks down stigma?

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Emmanuel Zayzay: I think speaking

out breaks stigma because uh, I have

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the life experience, where I almost

got crippled, I no longer wear short

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trousers, but when I go talking to persons

affected, I show them my conditions.

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So from the real pictures of my

condition, you see, you get convinced

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that I can make it because this man

with the kind of condition he got

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okay, and today he's serving as an

ambassador for our project and he's

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serving as a peer advocate for, for

our community and our persons affected.

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So I think I can hear by his

advices and go by what our treatment

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he took to get to this level.

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That alone can help them, it can

change, it can change the community.

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It will help the Ministry of Health and

also to the health facilities because

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new patients will be pulled in because

I have gone to the community with my

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experience with showing my wound marks,

showing the mark to the community.

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As I was speaking now, we got more

than 15 persons, 20 persons that

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have, because of my influence or

because of my story sharing with

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them, they are coming for treatment.

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So those are things that I do.

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And that is what I need.

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I need support from other partners to,

to make me a ambassador for persons

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affected in my country, so that I

can help to eliminate NTDs globally.

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Kerry Millington: You are so

positive and a wonderful role model.

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Thank you so much for sharing that

journey of how you became an advocate..

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Maurine, What have you found

worked well in communicating what

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you need and the needs of others?

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Maurine Murenga: For us to communicate

our needs and the needs of others.

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It took a lot of different interventions.

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It depended on the context.

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There are times when dialogue helped.

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There are times when we needed to

really demonstrate and fight back.

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Um, what we call resistance because when

our health systems cannot manage the

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number of people that need services, they

tend to go into a motion of burying the

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head in the sand or being very defensive.

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And so it takes a lot of pushback,

a lot of fighting, for us to be able

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to really communicate the needs of

the people and the importance of

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ensuring that we are saving lives.

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So we had, um, we had moments

where we demonstrated.

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We had moments where we got

into trouble with authorities.

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We also had moments where we were able

to just have dialogue with decision

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makers and get our voices heard.

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So what I would say it was a

mixture of interventions, um,

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that worked, but we always started

with an opportunity for dialogue.

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If that didn't work, then we

would take it to the next level.

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Kim Ozano: Okay, and Emmanuel, over the

last year, you've been speaking with

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ministers and lots of important people.

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Were you nervous at first and what

helped you to become more confident?

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Emmanuel Zaizay: So I was, I was

nervous at first, my first time

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meeting with deputy ministers, uh,

meeting with former ministers, that

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was at the Murex Plaza, where REDRESS

had a intervention meeting, where we

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met with those, those hierarchies.

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I found it difficult, but the second

time meeting where we were able to meet

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with, with the NTD director, Karsor

Kollie, things became easier because it

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was not my first time and I overcome it.

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I imitated what people were

doing and I did the same thing.

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While it's true, I have now been

out of school for more than nine

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years because of my condition.

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So, speaking in front of a

group has been a challenge.

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But later, after some time, I overcome it.

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And I came, I came to get used to it.

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And after that, I'm

getting flexible with them.

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Kim Ozano: I just wonder from a

personal perspective, being an

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advocate is obviously a very personal,

very emotional, um, role to have.

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How have you balanced this yourself

with your desire to make change

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and your own personal needs?

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Maurine Murenga: As an advocate,

internally, sometimes I give up

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many times, but then I reflect and

I say, well, giving up will not

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take me to where we want to go.

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And so you put yourself out there.

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The life of an advocate is met with a

lot of, like I said, resistance, and some

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of our health systems are structured to

look at advocates like people who are

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critics, who mean to criticise and bring

down the efforts that have been made.

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Um, I can also say that, uh, because of

some of the things we faced, especially

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dealing with the HIV and stigma and people

dying, there was a lot of, uh, violent

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moments, or there was a lot of times when

advocates became very violent, and we took

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to the streets many times than we took

to the boardrooms to have discussions.

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So I think there's lots of lessons that we

have learned in terms of balancing between

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pushing, negotiating, um, influencing.

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And so there's always a need for a

balance, but I would say that as an

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advocate, I have created as many enemies

as I've created friends, and it takes

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a lot of thick skin to survive some

of the backlashes we get as advocates.

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I have been cyberbullied.

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My kids have been cyberbullied.

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Um, some wrong information about me

has been put out there, and all this is

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because of my engagement in advocacy.

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So I would say that real, real advocacy

is not for the faint hearted, but if

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you you need to get where you need to

get, then you have to do what it takes.

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So, real advocates are never compromised.

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We are very dedicated and we

always look at the positive side

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from our minds we always see the

light at the end of the tunnel.

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So we work so hard to get through

this tunnel, regardless of the

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many challenges that we get.

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It is a very thankless space,

but again, it's very satisfying.

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When you see people's lives getting

better, when your own life gets

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better, then you, you see the fruits

of the advocacy and you enjoy them.

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Kim Ozano: I think that really

helps us to understand the context

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you're working in and also the

challenges of being an advocate.

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Do you think that researchers, decision

makers and implementers need to consider

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safeguarding and making safe spaces for

participation of people like yourself?

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Maurine Murenga: I definitely think,

um, researchers, programmers, need

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to have spaces for people like me.

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A story is told of, um, it's not a story.

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It's actually an experience of

when we were developing the post

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exposure, prophylaxis prep, oral prep.

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And there was a study, in Kenya, to roll

out oral prep among the sex workers.

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So because they were not engaged in

the research, they were not engaged in

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designing the programme, we just saw the

final commodity that had been brought

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and we had mobilised them for enrolling.

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A lot of work went to prepare the project

for enrollment of the sex workers.

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Everything was put in place.

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All the procedures and processes

were followed and then the

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day of the launch came.

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And they were very excited about oral

prep, so they came in big numbers.

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But when they came, the only

challenge they had with the whole

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process was the color of the pill.

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The pill was blue, and they had a problem

with the color of the pill because there

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was some drugs that were used to drug

people that were also blue in color.

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And when sex workers were found with these

blue pills, they would be beaten, because

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it was assumed that they were going to

drug their clients and steal from them.

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So the color of the pill alone

aborted the whole process.

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So we could not continue

with the enrollment.

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They told us, well, if you

change the color to white or

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pink or any other, please let us

know, we will come and enroll.

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So, engagement is very, very critical.

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It helps us shape, it helps us design

programmes that are people centered,

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that will work for the people.

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So the voice people like I bring to

the table is just to guide the process.

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We are a very critical component

of the design, the research, the

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programming, um, it is very, very

critical that our voice is there so

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that we are shaping the process to

succeed, because we know what works.

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Kim Ozano: Maurine thank you

so much for these insights.

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I think you've raised some very important

issues that, you know, there are

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challenges, but the rewards are strong.

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We need to think about safeguarding.

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We need to think about spaces

for people to participate.

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So, if you were to give advice, Emmanuel,

to someone who is like yourself, affected

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by an NTD, but wanted to become an

advocate, what advice would you give them?

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Emmanuel Zaizay: My

advice is is to be strong.

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If you got means to go to school,

we could share with you to sustain

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yourself, to learn, to come

back and help persons affected.

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And to help your community and to

work along with a health system

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in a country or in your community.

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Kim Ozano: Maurine, what advice do

you have for both people who want to

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become advocates to make changes in

health diplomacy spaces, and also for

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researchers and programmers so that

they can make sure people like you have

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the space they need to make change.

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Maurine Murenga: My advice

to advocates and activists is

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that they should be informed.

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Um, knowledge is power and one of

the things that makes it successful

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in this field is that when you have

your knowledge and your facts right.

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Collaboration and

networking is also very key.

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There's, there's power in more.

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We are stronger together

than we are apart.

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So collaboration is important, and

we need resources to ensure that

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these networks are strengthened.

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There's also the component of being

strategic which I talked about, to know

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when to have a dialogue to know when

to get a bit more action, especially

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when you want to do demonstrations

to know when to be persuasive,

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to know when to have trade offs.

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So you really need to be strategic

in how you approach advocacy.

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And then the most powerful thing

we have as advocates is our voice.

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So we always say that, use your voice

with every opportunity you get, whether

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it is a meeting talking about male

circumcision and your interest is

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preventing mother to child transmission.

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Just find a way of getting it in there!

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That's one of the strategies that we have

found very successful using our voice and

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ensuring that we are getting into those

spaces where those decisions are being

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made and participating meaningfully.

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Kerry Millington: I don't think

it's just researchers that are able

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to provide those opportunities,

it's all the stakeholders, and it's

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forming those connections, trusted

relationships with the stakeholders.

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So when those opportunities arise

to engage with policymakers or to

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engage with politicians, you can

bring the voices of the community to

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them for them to understand through

pictures, through words, through

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discussions, the challenges that

people affected by these diseases face.

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Maurine Murenga: Another one thing

that I found very satisfactory is

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about empowering others, because

advocacy is not just about one's

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voice, it is about empowering

others to find their voices too.

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So encouraging people affected by

the issues to advocate and share

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their stories and experiences

amplifies what we are doing.

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So that is another critical, uh, thing.

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And then it's about celebrating victories.

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We get a lot of challenges sometimes

and we forget to share our victories.

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One day someone told me that every

time they give us a document to review,

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we always find the negative things.

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We never comment on the

positives in that document.

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Uh, so I think celebrating victories, big

or small, um, is, is, is really important.

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And recognising each other, the

little progress or the, the,

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whatever, or the milestones we

have made, fuels that motivation

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to continue in fighting for change.

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So...

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Always remember to

celebrate the milestones.

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Another one is about self care.

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I say, I shared some of the challenges

that we experience as advocates.

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So the self care is

really, really critical.

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It can be very emotionally draining this

space and, and mentally draining as well.

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So taking care of ourselves,

prioritising self care is very critical.

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I learned that later, but it has really

been helpful because nowadays I find time

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for self care and also having an ability

or a network that can support fellow

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activists to support fellow advocates,

um, so that we are not having burnouts.

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And then, um, the issue around resilience.

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It's never, like, a walk in the park.

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Um, it's not always gonna be easy.

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But resilience is very, uh, important.

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Setbacks are inevitable, but that

shouldn't really kill the spirit of

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advocating for what we really believe in.

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So, we have learned to

learn from failures.

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To adapt to new strategies, keep

pushing forward and remembering

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that change takes time.

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Our perseverance is important in ensuring

that we make a difference in the long run.

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Um, so, for scientists and programmers,

we may not have the same skill set,

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but simplicity goes a long way when we

attend your meetings and your forums

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and your, uh, spaces, making it simpler

for us to be able to understand helps

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us to contribute more meaningfully.

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So sometimes the science, science is

too much and, and we find ourselves

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lost in the process and then,

uh, you don't get a lot from us.

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So I think, uh, for that

is about simplicity.

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It's about trusting us, trusting our

data, trusting what we tell you about

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what works and what doesn't work.

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Kerry Millington: I think it's really

key to maintain that energy, both

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through the good and bad times.

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And you talk, Maurine, about finding

the opportunity, every opportunity you

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can to give your voice, but I think we

also have to find the opportunity to

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make sure that voice is heard as well.

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: 00:21:19

You know, we're very much trying to

work towards that with the researchers

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to have that exchange of ideas that can

be understood from both perspectives

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to ensure we work effectively together.

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Because, as you said, we all have the

same common goal, which is to end TB.

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And if we can do that better, then we

will achieve this quicker for everybody.

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Kim Ozano: Thank you

so much to our guests.

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: 00:21:42

I've learned so much today and

it's really clear that we as

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researchers have a lot to consider.

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: 00:21:48

We need to understand that it's our

responsibility to provide opportunities

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for advocates to develop soft and hard

skills so that they feel confident

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and comfortable communicating the

needs of the communities they are

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representing in different spaces.

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: 00:22:04

Don't forget to check out the previous

episode, which is all about health

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: 00:22:07

diplomacy spaces from the Center

for Health System Strengthening.

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: 00:22:11

And hit that subscribe button

now so you can get our next

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: 00:22:14

episode as soon as it's available.

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: 00:22:16

Thank you for now and have a good day.

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: 00:22:18

Bye bye