This morning's panels were
organized by Susan cousins who

introductions a professor
of public policy and

associate research dollars

also serves as director of a Technology
Policy Center at Georgia Tech.

Susan.

Thank you.
Our first panel is coming up and

it's my pleasure to introduce
the moderator of this panel

which is on health and humanitarian goals.

Lynn Austin made me promise not
to do a long introduction and

of course I don't want
to use at their time and

you've got her biography in your folder so
you can read that impressive

list of things that they're I
just want to say that I for

Lynne was actually one of the first people
that I met when I came to Georgia Tech

because she was in the first cohort of
students who went through the new Ph D.

in public policy which was just
being set up at that time and I

always think of these three women who were
in the first cohort as a kind of phalanx.

Because they were three
women on their way up and

one of the things that they did
was they said we got a new chair.

We need to meet her.

We need to inform her of what
she needs to do in Georgia Tech.

So they took me out to lunch and let me
know how things work at the university and

they have all been on their way
up since and Lynn is certainly

an example of that she's been chief
of staff for the director of C.D.C..

And she's now deputy director in the
office of public health preparedness and

response and as far as I can tell is kind
of a key link in making sure that if we

ever had a bioterrorist
attack we'd be ready for it.

Solenn thank you very much for joining us
again moderating this panel thank you to.

The panelists.

And we're probably about ready to go.

Then.

I want to give a brief
introduction of our panel and

I also want to to try to tie in
a bit from yesterday's conversation

as I was here yesterday and
listened to the program and

thought about the content of
the program that what happened today.

It really tied together
the humanity humanitarianism and

social courage that is the thing for
you know this this conference and

also of this award humanitarianism
an ethic of kindness benevolence and

sympathy extended universally and

impartially to all human beings
social courage means not

conforming to the expectations of others
being willing to show your true self.

Even if it means risking social
disapproval or punishment.

It means being able to express opinions
and preferences without checking

to see if they are in line with everyone
else's opinions and preferences and

it is not about attracting or
craving attention.

It's about not minding the tension
social courage often involves helping

others developing a charitable
consciousness and

acting on behalf of others whether
anyone else can see it or not and

you know that the evidence as we saw from
from Ivan Allen and The Namesake for

the school and the social courage
award for Dr faggy recognising is he's

just such a fitting recipient of this
award at this time and place and

the examples of humanitarianism that have
been displayed throughout his his career.

I think when we first
start out at sea the sea.

We don't necessarily think of them
as being humanitarian efforts.

We're out there you know to
stop the spread of disease and

yet when you look back at history and
all that you've accomplished.

It truly is that.

And greatly appreciate
your leadership there.

You'll hear from to our faculty
today Dr Julie Swan On my far right

is an associate professor in the School
of Industrial and systems engineering.

She's currently focused on the modeling
and the analysis of problems and

logistics transportation and supply chain
management which is critical to us as we

have distribution needs around
the Strategic National Stockpile So

we're often very interested
in this kind of work.

She's currently doing work in
humanitarian supply chains and

she has received the National Science
Foundation grant in two thousand and four.

And one of her papers was selected
as a finalist in the C.D.C.

childish Charles Sheppard award which
is a very prestigious award for

scientific research at C.D.C..

In the middle daughter and Pollack is an
assistant professor of science technology

and culture in the school of
literature communication and culture.

Dr Pollock's research focuses
on vile medicine and culture.

She's particularly interested
in how medical categories and

technologies are in role in
telling stories about identity and

difference especially with regard
to race gender and citizenship and

her recent work a forthcoming book
medicating race heart disease and

durable preoccupations with difference
tracks the intersecting discourses of race

pharmaceuticals and cardiovascular
disease in the U.S. And Dr Jennifer Singh

is assistant professor in the school
of history technology and society.

She spece specializes in medical sociology
and science and technology studies.

She's interested in the intersections
of genetics Health and Society and

draws on her experiences of working in the
biotech industry as a molecular biologist

and as a public health researcher at
the C.D.C. her current research focuses

on the implications of gentleman
technologies on the etiology diagnosis and

treatment of optimism spectrum disorder so
we'll start first with Dr Julie Swan.

Thank you.

I don't have to speak very well.

Michel.

I want to talk a little
bit about goals and

in the health and humanitarian area
in where compassion can play a role.

So I'm going to talk to a little bit about
some things that we've been doing in

discuss how compassion can
play a role in things like

science and engineering and
I will also point to my colleagues

we have a center in this area and
I would like to point to my colleagues and

all of the students involved with
the center because they participated in

both the projects that I briefly mentioned
today as well as many others in the area.

And those those colleagues
are Professor as Lemaire going to

Professor in arc is going to check and
then of course we have

many collaborators both across Georgia
Tech as well as at other organizations.

And look to define what I mean by
humanitarian when I say humanitarian

in in my world I think
a partly about disasters but

also about much bigger issues
crises that face our world.

There's a list of top ten problems facing
humanity for the next fifty years and

some of those include things like water
and food insecurity energy terrorism and

war and most of us in our daily lives
don't face challenges with those but

globally there are many people who do face
challenges with those and moving forward.

I think we're going to see even more
challenges in those areas and so

those are areas where certainly compassion
can play a role but also institutes

like Georgia Tech in people working in
the in the sciences can play a role.

In in the world of engineering
we often think least in my

field often think about decisions
that are at different levels so

so we might look at system wide
decisions that are strategic or or

maybe medium term decisions or or even
decisions made on a more real time basis.

And so the role of compassion can play.

A role in each of these different kinds of
decision areas and there's also a feedback

loop as well that that should go across
the decisions and help you improve.

The decisions or

analysis as you move forward and science
also has a role to play in that area.

One example projects where
we are we've worked has been

malaria interventions in Africa.

You may well know but

there are millions of children who face
malaria on a regular basis and of course

it's it's one of the great contributors
to mortality among young children.

There are many different things that
one can do for malaria including

pharmaceuticals and other kinds of things
one of the things that our group has been

looking at is interventions that did or
not pharmaceutical because for

countries that don't have those
kinds of funds or resources and

it becomes a very difficult problem
to manage when you look at trying

to deal with illyria which is a seasonal
disease across a large country and so

their science and technology have a role
in being able to help address it and

compassion also has a role because even
though you're designing these systems

which in my case maybe engineering systems
you need to design them in a way to

have a great impact on the population and
so that's that's one

of the places where compassion has a role
is in trying to reach the maximum number

of people that you can reach when
you do have limited resources.

A second area where where
we've been looking is in

addressing infant mortality with
the distribution of breast milk.

This is in particular with the
collaboration within N.G.O.s South Africa

and here the question is not
just about trying to maximize

the outcomes that you have but
it's also looking at goals like equity.

So how do you promote equity across
the country when you're you're looking at

distributing this breast milk for for
infants who need it when you have.

Differences in where your supply comes
from because of the the income levels or

the disease prevalence
among different groups and

differences in where your demand is and
so we've been looking at you know how can

you design equitable systems and
then also what is the cost of equity so

how many equity is a very
important goal but

it also means that you might be able
to reach fewer people on the whole and

so those are very tough decisions and
tough tradeoffs but we can do analysis

to help us look at those kinds of things
to help non-governmental organizations

make those decisions and
make those decisions with their donors.

Another area where we've been working
is looking at disaster impacts and

this is this project is particularly
focused on the Caribbean.

It is a joint project across
Engineering College of Architecture and

in many other individuals
who are participating

the group that I work with is looking
at disaster preparedness plans and

one of the questions is how can we look at
these plans in advance of these disasters

which are in some cases rare events but
we're using science and technology to

look at measuring the performance of the
system in the in the countries in advance

of the disasters and it also allows
us to look at vulnerabilities so

where are the places like Haiti that are
both vulnerable due to the earthquake but

also because of the infrastructure
that's there and

what can we do to help prevent
the next Haiti from occurring.

And so overall I think that
you know certainly science and

technology and in this sense I mean
science quite broadly to include all of

the things that Georgia Tech certainly
the social sciences have a role as well.

Well as literature and communication and
all the other areas but

there's an important role to play and
help in humanitarian systems.

Sometimes it might be about choosing
what problems that you that you work on

like the problems that we that we heard
about yesterday and in Dr Veiga bio and

it can also be in how you
think about those problems in

what your goals might be and
those problems.

In With that I'll turn
it over to back to Lynn.

Go to the next speaker I want to
open it for questions for Julie.

And I have a couple that I can
start with the audience is shy.

So.

How did you operationalize
equity in the context of

an engineering system I
like the combination.

A lot and this is equity in the fairness
sense not equity in the investment sense.

Still yes.

People don't always think about equity and
engineering great but

when you start talking about things in the
health area or in the humanitarian area.

These questions around equity often
come up it came up from the C.D.C.

when I was there working on H
one N one during the campaign

it comes up in the humanitarian sector
with N.G.O.s and you win agencies.

So one thing is that you can look
at distribution of resources and

look at M I distribute ing the same
amount relative to their population and

then you can design the system so
that you either constrain the decisions

too to enable equal distribution
relative to the population or

relative to the OR
you can actually make it your objective.

We're also doing other work where we're
looking at measuring the equity that's

already in the system using very
detailed data from the health system and

in that sense it might be something
like access to providers for children.

So you may or may not know but
pediatricians in Georgia.

There are a number of.

Counties in Georgia that have
no pediatricians at all.

And so if you thought about it.

I mean there certainly are children
who live there but but

the access to those fees to physicians
is much more limited there in that case

we're looking at the first measuring
the equity and models play a role in that.

Secondly explaining the equity or
inequities that result and

what kinds of factors relate to it and
then looking at the targeting of

interventions to help promote higher
equity through you know constraining

your decisions in some
way other question thing

I'm always struck by people who have
these really wonderfully creative and

innovative ideas and invention of
the ground with those of us who are not

involved with that are not always aware of
what makes interventions like that work.

The example that comes to mind for
me is when I came to understand that

there were there were interventions for
HIV AIDS but

they work when people have
a stable food supply.

So I was struck by your
connecting of breast milk and

the aids this I think that should
be a critical problem in an area of

Africa where it is so prevalent.

So I want you to talk with

humanitarian engineering systems
to bring to a situation like that.

That's a great example
because you know in the U.S.

you might not think about breast
milk as being connected to that but

in South Africa that was
really the main driver of not

having sufficient supplies of press notice
that the mothers would have HIV And so

therefore you know it just wouldn't work
and you have lower donations breast milk.

It's disease free.

I think of looking at systems as
being able to connect some of those

dots in the picture that you might
not think about in advance in so

you can do this by you know getting
a really good understanding of the problem

and what might be driving the need or
the differences in supply.

I also do it by modeling and so

if you think that there might be an
interaction between you know one thing in

other than Then you can put that into the
model and look at it some evaluation also

plays an important role in this connecting
of different pieces of the problem.

I heard an example where this
was putting in latrines in

a place that had not had them before but
when they came back two years later or

at least the story goes that when another
organization came in it increased

the malaria problem in that area because
now the mosquitoes were using the you know

the latrines as a bed for their their
infants in and so there are these

multiple interacting pieces and it's been
it's important to look at the whole system

in least think about those to try to
elicit some of those kinds of connections.

Let me move next to Dr Ann Pollock and
her topic.

So thank you so
much to Susan cousins for including me.

My research focuses on biomedicine and
culture and

drugs are a particularly interesting area
to me because they are such a tangible

object around which to both intervene and
measure intervention and

also to articulate the world
that we would have it be.

For diverse groups so one group that
uses drugs in articulating a world

is activist groups so some of you may have
heard about the ongoing case in India.

No virus is challenging Indian
rejection of a patent for

a drug and there is really
a turning point potentially for

ability to provide low cost drugs
internationally and about ninety

percent of the drugs that are provided
by a lot of N.G.O.s come from India.

So this is a really kind
of hot button issue for

social activists to kind of promote access
to generic drugs and affordable drugs.

I think that it also points out.

Maybe that we need to look at more
diverse Aleutians than just looking for

generic drugs from India.

If so much can rest on these problems.

Drugs are also important in articulating
the world as we would have it

before government.

But President Bill Clinton
has since being president

been very involved in
pharmaceutical philanthropy.

And Bill and
Melinda Gates have been very involved

even President Bush was very
involved in promoting and

access anti-retrovirals in places
like South Africa where I also work.

And yet this too is not always
enough to be appropriate and

relevant to the problems.

There's a problem of the volatile
international order.

So this means that there's probably
a role for African manufacture of drugs.

So if India and sources are no longer
there that there would be African sources

the U.S. government has not always been
great at promoting that as was kind of

evocatively and
poignantly demonstrated with the U.S.

bombing of the pharmaceutical
plant in the Sudan.

And it's also a problem because a lot
of the drugs just aren't good enough

in the case of tuberculosis which
is the important problem with

HIV in South Africa.

There haven't been new drugs in decades.

And the treatment is Honoris And
so some of them and

some of the most promising new approaches
are not appropriate in resource

poor context so
some things need to be refrigerator.

Door have really complicated logistics and
so on one level.

You know we need not only better
distribution but also better drugs and

so I got interested in a company that some
of you may have heard about since one of

the directors is at Emory a company called
Temper Pharmaceuticals which is aiming

to do drug discovery in South Africa which
would focus on on the one hand providing

low cost drugs in South Africa including
anti-retrovirals and also developing

new drugs that would be affordable to
Africans and relevant to their needs.

And I think that this is a really you
know kind of exciting way to think

about how Africans can participate not
just as consumers of compassion but

providers of compassion not just as
come consumers of humanitarian goals but

as providers of humanitarian goals.

And yet.

Drugs are so

obviously not equal to the task of
actually achieving equity and health.

So my field of work in resource poor
context has showed me both the promise and

the ultimate kind of
insufficiency of drugs.

One of the thought one of
the scientists that I interviewed

talked about it in this way.

You said that the activists
say that it's possible

to have two point five million people on
treatment so this is in South Africa.

But he points out that in order to be on
treatment you need very special skills so

as Dean rice or

pointed out often to be on anti-retroviral
treatment you need access to food and

you also need access to transportation so
that you can get to the clinic.

You need all of these aspects that are not

universally accepted you know exert
universally accessible in South Africa.

So I want to say here is two things.

So first of all the anti-retrovirals
are not themselves enough

to solve the problem since there are these
other goals but I also want to point out

that in this context access to enter
retrovirus is not your only problem.

And so you have serious health issues with
or without access to enter retroviral.

Unless you actually find ways to
address the extreme poverty and

lack of infrastructure.

And so I do see a lot of hope.

Amid this context so the pharmaceutical
company where I do my fieldwork

is called attend which is Zulu for
hope and

this picture comes from during the
World Cup which was kind of the lead up

to the World Cup which was when I was
first there in two thousand and ten and

I was really inspired by the way is
that the science of this use of research

in the collective diseases as a way to
articulate a broader social mission for

South Africa as a way that Africans
a scientist can address African means.

So they articulated in terms of
things like African solutions for

African problems and also as a way for
Africa to participate in global science.

And so I think that you know in some
ways African drug discovery is like

the World Cup but more so you know where
it becomes an opportunity to be shown

on a world stage but yet in a way that is
just that much more kind of meaningful for

shaping the lives of people but
as I kind of wrap up my own comments I

also want to point out that this
is this is really fraught tangible

appeal of drugs is also there danger as a
rallying cry and I think that you know for

that South African scientists this
isn't a danger to forget that access to

drugs is not itself access to health but I
think from a distance we can often forget

that we can think that if we have solved
access to our problems then we have solved

the kind of broader issue but I would
point out and I'll just close with this

that drugs are a vital part of a social
justice mission but only one component and

so we can't lose sight of that
broader call for social justice.

So this matters both for how we articulate
problems and solutions and then also for

how we participate in them.

Thank you.

Thank you for
other questions for Dr Pollack.

Yes.

About the company but about a government
with a privately funded and

also how the company make money if you can
imagine malaria versus depression drugs

more money and
depression drugs than Or is malaria so

how the company actually
make money on vacations.

So so there's two things.

So first of all yes they are funded
by the government and in

considerable part it's fifty one percent
owned by the South African government but

they also get money from the and
then from investment and

that's connected to the fact that they
have a very elite international board so

that including scientists from Emory and
from Cambridge and from Imperial College

of London who you know help them to do
that but in the in the terms of cash flow.

They actually support themselves
by doing contract research so

that you know if you are in Switzerland
and you want to have a molecule synthesise

often you would do that in India or
China but they're trying to kind of

compete in that market where they would
synthesize your molecule for you and

they can do it much more cheaply than
in Europe not as cheaply as India and

India or China but
they're in the same time zone as Europe so

you have a little bit of a competitive
advantage in that sense so

you can talk to your
scientists during the day.

And then the other thing is they're
working on developing indigenous

manufacture of active pharmaceutical and
radians which you know as I mentioned is

really important in terms of robustness
of the infrastructure in South Africa but

it would also be potentially you know
if they can they're working on you

know a lower cost way to make active
pharmaceutical and gradients and currently

active pharmaceutical and Koreans are not
made in South Africa at all but if

they can make their own low cost way they
can actually you know the margin is lower.

Volume is high.

If they can provide
antiretrovirals to Africa.

So it's kind of this tricky
thing of both kind of

working within a resource poor context but

also wanting to participate in drug
discovery and science at a global level.

QUESTION Thank you.

Thank you.
You point out how complex this system

is and when you get everything
else right the food and

the fact that people have access and
so forth.

It still turns out to be cheaper.

To duplicate the packaging
than the medicine itself.

And so third of all the drugs in
Africa are said to be adulterated.

What solutions would you see for
that problem.

Yeah I mean I think that
that's that's a huge

from my most probably
more to Effexor have not.

But I do think I mean this is actually one
of the ways that the African scientists

actually also talk about the importance
of indigenous manufacture a sense that.

That of a sense of kind of
a control over the supply chain so

that that way you know if you.

You know most of the anti-retrovirals
are in South Africa are purchased

by the government or
by aid organizations and so

if you can kind of verify
the supply chain of those drugs.

You know it's not just the individual
going to the pharmacy.

If you can kind of verify that supply
chain that would do a lot to help you know

with those issues of adulteration I
mean that is a you know beyond my

zone of expertise there is
a whole nother level to.

The ways in which
antiretrovirals have brought so

many people in South Africa into
the biomedical system which they may have

previously been very skeptical and then
there are all of these competing ways of

understanding health to where you know
a lot of the natural remedies themselves

are also adulterated so that I don't know
how you would solve that problem because

that's not within the purview of either
the government or the organization.

Julie do you do you want to make a comment
on that question in May on OK Yes Yes I am

I think it and
is right that one element that can help is

the quality and
reliability across the supply chain so

if you can do you know sampling and
various other kinds of things and

understand the where
the product is coming in or

understand if there are particular
areas geographical areas where that's

more likely to happen then there are some
things that can be done with respect

to the supply chain itself but
certainly it is a very difficult problem.

How do how to.

How do companies like Demba do
product testing for safety never could

see of the drugs that they develop I would
think that takes both time and money.

Well they don't do it yet so I mean so
they don't I mean you know they don't yet

have any drugs on the market so.

If I could have a following.

It's struck me as you were answering that
you might have a chance to actually solve

this problem and you're working in
South Africa to students from gonna

have come up with the idea that
if you're making something there.

You could put a lotto.

Type number that a person
scratches off and

then they call a phone number enter that
number and they mediately find out whether

this is adulterated or genuine Since
you're working on the ground there.

That's might be something
that you could implement.

It's so easy and the main students
estimate it would cost only one

cent per vial or bottle or whatever you're
using So it's an idea that we're trying.

Yeah and I think that I mean I
think that one of the things that.

You know we've learned from this kind of
the broader project that I think that

people like partners and so like Paul
Farmer is a great example of this is you

know both highlighting that these changes
are possible in resource poor context and

then also you know not losing sight
of that as one component right so

I think that you know the more that
we can kind of both keep the focus on

actually creating the access to
the drugs that are needed and

then also not solving it not thinking that
it's solved with that one cent solution.

You know this is this is for me that
the kind of ever pressing challenge.

In South Africa.

You have a dozen competing sometimes
complementary sometimes competing

languages of Afrikaans involution
Zulu in ninety plus more languages.

How does the language challenge
in South Africa affect the.

Development dissemination in
the use of pharmaceuticals.

Well it doesn't affect
the development very much because

overwhelmingly drug development
happens in English and so I mean it's

an extraordinarily diverse group in South
Africa and this is actually one of those

things you know where I mean coming
in growing up kind of inspired me and

social justice was you know the Rainbow
Nation which was coming into existence you

know at the same time that I was kind
of coming to political awareness and

you know so this kind of vision is
happening on the ground and for scientists

they speak in English the issues of
distribution are much more complicated and

so you know this is definitely I mean
this is a tremendous challenge for

the South African government and for
many African and Asian governments.

A place where the collaboration and

partnerships is extremely critical
in the distribution chain.

Yeah.

Let me move next to Jennifer saying
about Jennifer saying and her topic.

Thank you everyone for coming today.

Susan for
inviting me to be on this panel and

my discussion today is compassion for
a kid here and

the collaboration efforts that were
really necessary to bring a sense

of community into autism research I'm
really going to look at local activism and

how compassion has played
a part in creating change and

I'd like to start with a quote
from Portia Iverson She's a parent

whose son has guy who got a diagnosis
of autism and subsequently she and

her husband started an advocacy group
centered on raising awareness and

increasing research funds towards autism.

And it starts like this.

It was like a forced driving me
something I couldn't resist.

Even if I tried all parents
have it basically you will do

anything to save your child and

I wanted to start with this quote to
give you a perspective of the type of

compassion that has driven countless
numbers of parents to raise awareness and

research dollars towards the plight of
autism and one of the reoccurring theme to

that really resonates in the work that
Dr William Petit has done his remarkable

work are the levels of compassion that
are needed for social change including

the collaboration between activists
scientists and political leaders.

The work I've been conducting on autism
really captures these processes of

collaboration and various levels of
compassion that are necessary to

bring what was once a rare diagnosis
of autism to now the current

prevalence of one in one
hundred children diagnosed and

this is twenty times higher than
the problem of seventy's or the seventy's.

And so today I want to share with you.

Three accounts of compassion that
have really transcended autism

from a local concern parent parents
having a child diagnosed with autism

to the celebration of world ought to.

And Awareness Day which will be
celebrating its fifth anniversary

next month on April second.

And I demonstrated how the work of these
parent advocacy groups have really

really dramatically changed
the direction of autism awareness and

research over the last fifteen years.

This whole social movement has generated
new forms of collaboration between parents

activists and scientists and political
leaders as well as in their their pursuers

treatment prevention research
expanded funding but

parents are also becoming part
of the research enterprise.

So I investigated the the work of parent
advocacy groups Cure Autism Now and

the National Alliance for autism research
which has recently to in two thousand and

six joined a third group Autism Speaks so
it's now all Autism Speaks their

compassionate work really demonstrates the
collective mobilization around disease and

how parents advocates have really emerged
as new partners in building awareness and

research both nationally and globally.

So the first story of compassion started
in New Jersey after Karen and Eric London

got a diagnosis of their son for autism
in the months following the diagnosis.

They they really noticed that there was
a severe lack of information they couldn't

even find much information on autism which
seems hard to believe at this day and

age and when they try to donate money for

autism research there was one
nonprofit organization that was

you know was accepting money and
actually doing research five years later

autism research was still poorly funded
both in the private and public sectors and

it was at this point that they decided to
start their own advocacy organization in

the basement of their New Jersey home
in one thousand nine hundred four and.

They called it the National Alliance for
autism research and

basically it was the first nonprofit
organization dedicated to funding and

promoting biomedical research and
treatment of autism organizations name

really represented the goals of achieving
a nationwide alliance of families autism

organizations researchers and concerned
others who are united in concerned

in the same purpose and their primary
mission was really to stimulate biomedical

research into the causes prevention and
ultimately the cure for autism and

principal components really were to
accelerate science by providing direct

funding recruiting scientific talent

into the field and really facilitating
communication among scientists.

So the second story of compassion

occurred across the country
in Los Angeles California.

Another family got
a diagnosis of their son.

And these parents John and
Portia Iverson quickly looked

into the literature and found out that
there wasn't a lot of research being done.

The doctors basically told them to get on
with their lives because there was nothing

that they can do and

they refused to accept that as they saw
it there had never really been a better

time in the history of medicine in
science to try to find a cure for autism.

So in one thousand nine hundred five.

So this is just a year after it
was established they founded

the Research Foundation Cure Autism Now
and

the name really meant a lot of
resistance because professionals and

parents alike because they
felt it provided false hope.

And you know the name as

the name indicates they not only
wanted to increase awareness and

research funding towards autism but
they also wanted to find a cure.

So despite resistance they effectively
lobbied Washington to increase

research dollars for up to.

Research they actually became
experts in the field of autism and

they were created in funded researchers
in the field in fields related to autism

to to join the fields
a third story of compassion

centers on the advocacy group
of volunteers and speaks so

this was founded in two thousand and
five by Suzanne and

Bob Bob right after their grandson
Christian had been diagnosed with autism

their longtime friend Bernie Marcus which
some of you probably know donated twenty

five million dollars to help them
establish their organization and

in two thousand and six in two
thousand and seven an in-car man.

Narain can join the Autism Speaks and
so now it's one entity and

it was based on their joint
commitment to accelerate funding for

research to look at the causes
the prevention and treatment for

autism as well as established resources
for families and increase awareness

as a result Autism Speaks has really
grown into the largest autism science and

advocacy organization in the world and
as of two thousand and ten.

They've committed over one hundred sixty
million dollars to fund research and

develop innovative new resources for
families.

So the compassionate work.

The compassionate work of Nahr and can.

And now Autism Speaks are really
reflective of a range of activities these

groups have initiated such as fund raising
enhancing Family Services creating

public awareness campaigns organizing and
promoting research initiatives influencing

policy establishing government
relations and partnerships and

what I'd like to do is just demonstrate
some of these efforts that really

focus on collaboration and partnership
with scientists government officials and

policymakers and so
I just want to highlight a few examples.

And so the first one

is the success of can in are in
now Autism Speaks has really been.

Partly based on their ability to establish
strong relationships with government

in order to secure federal legislation
that advances autism research and for

example these groups were pivotal pivotal
pivotal in establishing and pushing for

the two thousand and six passage of the
cure autism or the Combating Autism Act.

This is the first ever autism specific
legislation that authorized nearly one

million one billion dollars towards
autism research awareness as well as

environmental research and surveillance
the act really represents the dedicated

effort of parents and families they
really brought this legislation

to action to confront the increasing
prevalence of autism.

And this history just really shows
the grassroots leadership both can in

our cause they were very much
part of this passage and

the commitment of Autism Speaks and
has has also helped establish the reactive

visitation act the re authorization of
this Act in two thousand and eleven.

So to raise awareness of autism and

can also partners and now I just I'm
speak sparked or partnered with so

there are several other national
organizations and the Centers for

Disease Control to launch learn
the signs act early campaign and

this was designed to help healthcare
providers and parents really learn early

developmental signs earlier
included that would help them

see if there were signs for autism as
well as hearing loss and cerebral palsy.

They also launched a public service
campaign the Autism Speaks worked with

the ad cancel and so there's a public
service campaigns that really demonstrate

the increase in the prevalence and
the odds of actually being diagnosed with

autism a prime example of can in their and
their ability.

Need to get scientists to collaborate and
promote autism research was their joint

collaboration with U.C. Davis mind
interest Institute to launch the first

interdisciplinary autism research
meeting a conference in two thousand and

one said the international meeting for
autism research it represented the first

time that inner disciplinary scientists
can come together and share their research

at the before this time they went to their
own specific research conferences and

didn't even talk to one another
necessarily And last year it celebrated

its tenth anniversary and essentially
has become the largest international

meeting dedicated to autism research
the compassionate work of Canon

are also took a form of putting a lot of
pressure on scientists to collaborate.

For example this is evident
establishment of the autism.

Jeanette the autism genome project which
is the International Research Consortium

dedicated to pulling their samples
together to do genetics research and

was really one of the initial
funders getting scientists

to collaborate because nobody really
funded scientists to get together and

do research as one scientist remarked
that I interviewed he stated

I think the word community really
was infused by the advocates.

It's all about community and

I think that advocates of autism really
infuse that now into the formula.

So that's their pressure their pressure on
scientists to work together as a community

as opposed to individually made a huge
difference in the direction of autism

research and really encouraged
multi-disciplinary research among

geneticists basic scientists clinical
investigators and others that were working

together to push autism research forward
and help families at the same time

one of the most substantial
awareness efforts by Autism Speaks

was their critical support to the state of
Qatar in the creation of the First World.

Autism Awareness Day

sanctioned by the United Nations
to be celebrated on April second.

It was the first it was first celebrated
in two thousand and eight so over there.

It's about four forty countries and
six continents.

Really brought the message of autism
awareness to millions of people

around the world.

Essentially it's a global effort to
heighten awareness which is one of

the three and in autism is just one of the
three one of three days diseases the U.N.

has actually named a specific date for and

they Autism Speaks really
describes this effort as

an effort to inspire compassion
inclusion and hope and

then another Global Initiative really
looks at trying to better understand.

And again Autism Speaks
partnered with the C.D.C.

try to understand globally
better prevalence estimates.

Currently there is there is good evidence
for prevalence in North America and

the U.K. but very very little
understanding prevalence around the world.

OK So these are just some examples
that highlight the compassion work of

parents and grandparents children and

in fact my last slide

looks at Bob and Susan Wright they've
really been noted for their work and

have received a humanitarian award for
their work especially their

dedication to contributing to worldwide
global awareness around autism and

I guess the questions that I have when I
think about this type of work is how can

we really transfer this compassion
to global health clearly parents

in developing countries don't have the
social capital that these parents do many

of them like they were talked to
lawyers Hollywood professionals T.V.

executives these are people who
had a lot of connections and.

Really able to make noise and
for their cars so.

You know what form of social mobility
sation us occur to bring these type of

issues these type of issues to
global health inequalities and

must occur from developed
countries themselves.

I'm from the communities themselves and

how does that work with other other
groups outside of those communities.

And finally how do we really begin
to establish that sense of community

between activists scientists and political
leaders when thinking about global health.

Thank you doctor saying questions on this.

I think I'm very pleased
that this is going on.

I do raise questions about the you
know I think having people aware

of the issue and having people
intervening as soon as possible is very

critical having a partially
autistic child myself but

I also wonder how much actual results

are coming apart from the public education
side of this and how much of the money is

going into the actual work as
opposed to the infrastructure for

it doesn't just be concerns that I would
raise with any any issue of this sort.

So you mean results in terms

of the major goal.

Give me.
Are there are there any signs of achieving

major goals outside of the greater
awareness of the issue

is a problem and the importance of early
intervention I mean there are these

dozens of you know claims
to have cures for.

Autism how much should I mean there
you know there is no magic bullet or

here that has been has been
demonstrated in the research and

my my research really focused
on genetics research and

even though there is a strong heritable
component to genetic to autism.

There is no gene for autism and they're
finding out that it's much more complex

than that and that the environment and
genetics actually work together

is where the shift is focusing
on back in two thousand and

six I did a content analysis and
looked it.

What research was actually being
funded and in can in our as well as

the end I age because a lot of the pilot
projects that they started got leveraged

through the N H So that you know they
started research in the N.H. picked it up.

And so the focus there was really
on neuro science genetics and

treatment epidemiology and helping
families with much much lower environment

was really not even on the table but that
is definitely shifting there is more focus

on the environment now as well as
services for adults because as you

can imagine there's been a huge increase
in prevalence Well this isn't children

well those children are going up in these
parents who started these organizations

when their their children were small their
children are now older and so the shift is

really more focused on how you live
every day here and one back there.

So let me make sure I get to those high.

I know you're asking about forming a sense
of community among the organisations and

I was just wondering how involved are the
parents of children with autism within

their organizations because I know that
public health professionals are involved.

Researchers.

But how involved are that they
have only they're very involved.

They're very involved so
they raise money here in Atlantic Station.

There's And throughout the.

I did States they have walk for
autism and they raise families raise

raise a lot of the money that
goes back to the researchers and

that's part of why we know about I does
them today is because of the families.

I'm also a parent of
a child with autism and

as we know service is very state by
state and insurance and Georgia.

We have not had much success in
Georgia and it cost a fortune.

I mean we put every penny we have into
our son and I'm curious how compassion

can perhaps play a part or
awareness and what we can do as parents

to help get insurance reform for
our children here in the state of Georgia.

That's a great question.

I think there's about twenty nine states
that have actually an acted insurance

reform so those you know national mandate
that health insurance actually has

to pay for treatment for autism and

one of the forms of treatment that
has been tested in shown to be

effective applied behavior
analysis is very costly and

parents will spend
everything that they can.

So in terms of compassion I mean I'm sure
you're aware of autism votes writing to

your legislators again you know working
in towards that front because that's

really what's going to happen and I know
there was a national bill on the table.

I don't know where that's out now but
getting involved in that way and they have

a mechanism Autism Speaks has mechanisms
where you get informed immediately for

autism vote as a parent and
what you need to do right then and

there will just suit.

This is a question more for the panel as a
whole so sorry this is a question more for

the panel as a whole and
just to explain my background as well.

I graduated from Georgia Tech and
international affairs and

then went on to the Peace Corps.

Or and in West Africa and then law school
looking at international human rights law

and one thing that I've read about
I can't remember his name but

the researcher in the U.K.
several years ago did some research into

the degree of compassion in relation
to how far people are away from you.

So how much compassion can you offer to
your child versus your sibling versus

your cousin and was actually able
to put a formula to this and

there's an impact on that of
course when you look at lawmaking

as well when you're trying to introduce
lawmakers to the idea of helping

to put through legislation to support
children with autism in their communities.

But then when you also look
at foreign aid as well.

People in the US know people
with cancer with autism.

We don't generally know people who have
malaria or who have tuberculosis and so

when you look at funding for these things
that is the farther it gets away bring

the less compassion we have perhaps and I
wanted to go back to South Africa briefly

because South Africa has been pretty
innovative in their constitution and

from one thousand nine hundred six
that they are one of the innovators in

the the number of human rights that they
recognize in their constitution human

rights to health and human right to
housing and to the degree that they're

trying to actually enforce that and
really put that into into place and

not just pay lip service to it and
where was I going with this excuse me.

I've gotten along all right.

But so

coming from my background in
Peace Corps I think also I mean I

know the post Peace Corps I pay attention
to these things a lot more I feel

a lot more strongly about this because I
was in a small village in West Africa and

I knew people with malaria pregnant
women who had children with severe birth

defects because they had had malaria while
they were pregnant and had taken so.

Feel that they got in the marketplaces
labels were all in Chinese and

they couldn't read but
somebody said this is good for malaria.

I guess I just like to address that idea
of compassion as part of a community you

look at lawmakers in South Africa
in one thousand nine hundred sixty.

They were facing these issues
with people they knew and

how do we extend that to governments
when we don't know those people when

our government officials don't know these
people who are suffering from this.

I mean the many of the scientists
who are involved in this research.

So the area for example is not
very common in South Africa but

a lot of the scientists are from Zambia.

For example or further north
which are malarial regions and

they'll talk about their own
personal experiences with malaria

as something that motivated their research
and I think that you know more broadly

they talk about the role of HIV and
tuberculosis.

As I mean there's a lot of
frustration over the fact that

most philanthropists would rather
fund researchers in the U.S.

or the global north broadly
because of a proven track record.

And they say no actually they should
fund us because if we are the ones who

feel the urgency of these problems
we see them in our communities

we see the repercussions of
the lack of infrastructure for

the treatment of HIV We see that you
know the challenges of tuberculosis and

so we are the ones who should be doing the
research and so that's you know kind of

one of the things that is the most
striking in terms of the gap

maybe between compassion responsibility or
something because I think that you know

certainly the philanthropic organizations
are very focused on compassion for

neglected diseases but not necessarily
on thinking about that locality.

You know and when it's looking at you know
how do you kind of empower communities

is generally empowering communities to do
what folks I mean here at Georgia Tech or

elsewhere right.

Say.

And so there's this kind of there's
a tension I think there between

the proximity and the distance so
that actually distance can foster

a particular kind of compassion and
there's an.

To the compassion maybe but it's more.

When it's more tactile
when it's more grounded.

It was on the slide yesterday I think Dr
Fay kind of lives by is that we will see

their faces and that when you see
their faces and there is a face

behind the numbers of disease of disease
prevalence or morbidity and mortality.

There is more likelihood
of having compassion and

humanitarian assistance in those areas and

in whatever disease it is be it autism
malaria or any of the systems and

distribution of drugs if we know that
there are people behind that I think it

provides more of an opportunity to
inspire us to be a part of that solution.

So I think we're being called for

time but thank you thank you to
the panel thank you very much.

Thank you.