it was 1991 hurricane Bob was roaring up
the coast and I was in a basement with
twenty four kids ages 6 7 and 8 with no
electricity for six hours I was a
first-year counselor at a summer camp
that was for children with
life-threatening illnesses the
hole-in-the-wall gang camp it was
founded by actor philanthropist race car
driver and all-around good guy Paul
Newman at one point yes he deserves it
believe me
at one point we gathered up all the
flashlights in the room and we created a
flashlight campfire in the middle of the
room and we meticulously placed out
sandwiches for every kid based on their
specific needs
some were peanut butters some were jelly
peanut butter and jelly some with crusts
some no crust you get the idea
one particular young man his name was
Quinn he was seven and some day I swore
he was going to lead the country he came
to us with an idea he had a bag full of
styrofoam clown noses and he said we
need to put one of these in each one of
the sandwiches listen he said we need
them for the hurricane well we
negotiated we talked about and we
decided that perhaps the nose on the
side of the sandwich might work as well
as it would in we agreed and I have to
tell you you can write this down a clown
nose and a peanut butter jelly sandwich
make for a hilarious lunch and it does
make a hurricane better so we did our
job we kept them safe and we kept them
occupied as best as we could and they
did their job and they kept us running
around with our heads cut off for the
entire six hours but eventually we came
above ground and we had a wonderful week
at camp at this point I realized that
this was a very resilient group of kids
also in the back of my mind I
realized many of them were going to be
dying because of AIDS over the course of
30 years I’ve gotten to know 2,000 kids
just like those first 24 and like any
kid anywhere some were shy some were
bold some were strong some were
thoughtful but every one of them had to
deal with this issue that was so
misunderstood and so underfunded at that
point and there was so much stigma
around it even their families wouldn’t
talk to them about what they actually
had they were the they were the leaders
in the beginning they were the ones that
had to move us forward they were the
ones that had to push the envelope and
as I look back now I see that they did
that they took us from a point where HIV
and AIDS was a death sentence to where
we are now but I’m getting ahead of
myself let’s go back to the beginning to
the then in 1981 the CDC published a
report about five previously healthy gay
men that mysteriously had this lung
infection that was killing them along
with other random infections that seemed
to indicate that their entire immune
system was just shutting down as soon as
they published this report the CDC was
inundated with similar reports from a
car across the country within six months
there were 270 confirmed cases of AIDS
and half of them had already died at the
same time there was a similar
circumstance that seemed to be happening
with 23 infants in 1989 the number of
AIDS cases in the United States had
risen to a hundred thousand by 1991 only
two years later AIDS was the leading
cause of death for young men in the
United States between the ages of 25 and
44 at the same time the rate of birth
for hiv-positive infants or as we you
familiar them back then aids babies was
2,000 per year back at the
hole-in-the-wall during the 90s we were
serving about
200 kids living with HIV every summer
now at most camps the emergencies that
you’ll run into our broken flip-flop may
be a twisted ankle or a bee sting or too
much pudding at lunch the hole in the
wall it was a little bit different a
fever could represent the potential
onset of AIDS because a child wasn’t
taking their meds now imagine yourself
as a cabin counselor working with these
children and there’s a hundred of them
and there’s doctors and nurses and there
are these med protocols they need to
take them three and four times a day
fistfuls of pills and liquids that just
tastes awful along with these terrible
side effects Ali was a young lady who
had she had some fire I knew her for
three years her medications changed so
often over the course of those three
years I couldn’t keep track of them and
they had they had these terrible side
effects when she was nine years old her
torso and her legs were covered with
sores we would walk together to an
activity hand in hand and suddenly she
would just collapse in pain when she was
ten sorry the psychiatric effects
started to take hold she would lash out
for no reason because of fear or anger
by the time she was 11 she was wising up
she didn’t want to take her meds anymore
she knew that they were hard to swallow
she knew that they made her feel sick
she knew that they made her feel sad she
also suspected that they were the cause
of the sores inside of her mouth and
down her throat that made it almost
impossible for her to speak medical
science was doing everything they could
to save Ali’s life but let’s be very
clear
she was an experiment she and many kids
like her that had to suffer through this
they were the data that was allowing
these brilliant researchers to come up
with techniques that were going to save
lives unfortunately not on time for Ali
at that point it seemed so hopeless the
cards seemed to be dealt to these kids
they would get sicker and sicker every
year we didn’t know what to do so there
was I I remember us having the cooks and
the doctors and the social workers and
the nurses all of us we would do
everything we could every moment of the
day to try and make it as magical as
possible for these kids at camp and it
was mostly for them but it was partly
for us because we needed to feel like we
could do something then in 1996
antiretrovirals became available and
everything changed the death rate for
aids dropped by 80% many of the kids the
summer before that had left that were
too sick or too weak to participate in
any of our programs came back and they
were energized and they were ready to
rock there was a group of kids that were
now healthy and they were becoming
teenagers we didn’t even expect them to
survive a lot of them when they came
back started to struggle a little bit of
camp we noticed that they were some of
them were bored some of them were even
acting out we tried desperately to
figure out what was going on and we
could see they needed more these kids as
they became teenagers were thinking
about the same thing that every teenager
thinks about sex drugs and rock and roll
and their careers and school and
partnerships and fitting in and trying
to create a you a unique identity for
themselves as burgeoning adolescents
camp was built to have fun they needed
something different they needed a place
where they could engage in those
conversations where they could take some
risks where they could have
conversations about how HIV was going to
affect them moving forward I loved my
job at camp it was my dream job for 10
years
but I realized finally there was a
potential next step for these kids and I
needed to take the leap and we needed to
do an experiment so in 2001 I left my
dream job at the hole-in-the-wall gang
camp to found next step with the mission
of shattering limitations and elevating
aspirations of teenagers and young
adults leaving living with serious
illness and we experimented tried to
grab the magic we were innovative we
were cutting-edge we were energized we
were also too white too old and not
quite sick enough there’s a mantra in
the youth development world particularly
in the world of HIV youth development
never about us without us or in the wide
so we came to understand that it was not
about us designing and delivering these
amazing programs to these kids it was
about us designing and delivering these
programs with these kids and they taught
us so much in 2009 we decided to hire 18
teens and young adults living with HIV
to design and develop a one-of-a-kind
program in the world for people living
with HIV in their age group they came
together and they told us we really want
the magic of camp we want that community
but we also want to be able to have the
conversations the plenary sessions the
workshops of a conference so they wanted
a camp and a conference so we listened
and that year we launched the first next
it’s true and it’s stuck to that name
it’s stuck
we have we had our 10th one this last
summer and we’ve been bringing thank you
we’ve brought together teens and young
adults from around the world living with
HIV to sit in the room with their peers
leading a discussion or experts leading
a discussion about how to comply with
your meds about the impact of drugs and
alcohol on your health about sexuality
about the power structure and also
finding their community finding their
tribe and the impact of that a most
sixteen-years-old beautiful smile
blazing red hair she was an athlete she
was a scholar she was in clubs but she
had a secret she had a really heavy
secret one day she decided to tell that
secret to her best friend and that
secret was texted to another person and
then it was on social media then AIDS
was painted on her locker and she
had to move schools then that secret
caused behavior struggles cause
substance abuse issues cause social
isolation HIV and its stigma robbed
Emma’s identity it would take a
tremendous act of courage for her to
ever trust anyone again with her secret
and somehow amazingly a year later she
found that trust and with a group of
total strangers she traveled to
Massachusetts to participate in next
steps no longer voiceless camp Prince
and there she knew she realized that she
could leave those labels at the door
that she was free to talk about what
happened to her she was free to process
what was going on with her right now and
she was free to think about what her
future could be we asked her after that
first year and she said I now realize
that I can be a wife
a mother and a writer someday it was an
amazing transformation and Emma became
an advisor for us like many of these
other kids we’ve been listening to those
kids for years and since then our camp
Prince has expanded to year-round
programming both virtual and in-person
that include workshops and project
groups and mentorship opportunities and
music therapy it’s a place where these
young people can actually be themselves
where they can leave the label behind
but they can discuss HIV perhaps for the
very first time in their life they can
just be teenagers and young adults they
can be silly they can be vulnerable and
they can find their community for people
like Emma it can be a lifeline back to
their identity for young men like Monty
who struggled to take his meds regularly
it can be the inspiration that he needs
to be able to stay healthy to fully
participate in his life for young people
like Juanita who are achievers it can be
the opportunity to to have an internship
and get her dream job as a health
advocate and for young people like Janie
and Cantrell it can be where they fall
in love happy to say they have a healthy
and happy HIV negative two year old baby
that was conceived well after their time
with next step
just FYI so that brings us to today then
they were babies dying of AIDS then they
were kids living with HIV today with
grit and determination tons of hard work
and courage beyond what I can imagine
they are now classroom teachers their
research assistants their youth
ministers they are artists
they’re writers they’re mothers and
fathers but I’m not naive so then in
1991 I was an optimists optimist most
optimistic person you’ve ever met
now well I’m still really optimistic but
there’s a little bit of realism in there
consider this in the United States right
now there are 1.1 million people that
are HIV positive and one in seven of
them aren’t aware of their status the
vast majority of new diagnoses each year
are men and women of color over half of
the new diagnoses are happening in the
southern part and particularly the rural
southern part of the United States with
only about 30 percent of the population
there there are countries around the
world that are ten to twenty years
behind where the United States is in
providing services for people living
with HIV and AIDS and funding is going
away these battles were too hard-fought
and there were so many victories and
there’s a lot of heroes to thank for
those victories researchers advocates
politicians cultural icons that have
broken through some of the social and
medical barriers and gotten us to where
we are today but I’m telling you that
right beside them and often leading the
way are these young people these young
people that I work with every single day
are so many questions still remaining
why is it that stigma still exists why
can’t I show the faces of these young
people in this presentation because of
stigma why is it that resources aren’t
getting to our most needy population
living with HIV and AIDS can we cure HIV
I think we need to we need to channel
Quinn again and we need to listen just
listen and we need to truly hear more
today than ever and we need to act on
what we hear and imagine what’s possible
in the future thank you so much for your time
the coast and I was in a basement with
twenty four kids ages 6 7 and 8 with no
electricity for six hours I was a
first-year counselor at a summer camp
that was for children with
life-threatening illnesses the
hole-in-the-wall gang camp it was
founded by actor philanthropist race car
driver and all-around good guy Paul
Newman at one point yes he deserves it
believe me
at one point we gathered up all the
flashlights in the room and we created a
flashlight campfire in the middle of the
room and we meticulously placed out
sandwiches for every kid based on their
specific needs
some were peanut butters some were jelly
peanut butter and jelly some with crusts
some no crust you get the idea
one particular young man his name was
Quinn he was seven and some day I swore
he was going to lead the country he came
to us with an idea he had a bag full of
styrofoam clown noses and he said we
need to put one of these in each one of
the sandwiches listen he said we need
them for the hurricane well we
negotiated we talked about and we
decided that perhaps the nose on the
side of the sandwich might work as well
as it would in we agreed and I have to
tell you you can write this down a clown
nose and a peanut butter jelly sandwich
make for a hilarious lunch and it does
make a hurricane better so we did our
job we kept them safe and we kept them
occupied as best as we could and they
did their job and they kept us running
around with our heads cut off for the
entire six hours but eventually we came
above ground and we had a wonderful week
at camp at this point I realized that
this was a very resilient group of kids
also in the back of my mind I
realized many of them were going to be
dying because of AIDS over the course of
30 years I’ve gotten to know 2,000 kids
just like those first 24 and like any
kid anywhere some were shy some were
bold some were strong some were
thoughtful but every one of them had to
deal with this issue that was so
misunderstood and so underfunded at that
point and there was so much stigma
around it even their families wouldn’t
talk to them about what they actually
had they were the they were the leaders
in the beginning they were the ones that
had to move us forward they were the
ones that had to push the envelope and
as I look back now I see that they did
that they took us from a point where HIV
and AIDS was a death sentence to where
we are now but I’m getting ahead of
myself let’s go back to the beginning to
the then in 1981 the CDC published a
report about five previously healthy gay
men that mysteriously had this lung
infection that was killing them along
with other random infections that seemed
to indicate that their entire immune
system was just shutting down as soon as
they published this report the CDC was
inundated with similar reports from a
car across the country within six months
there were 270 confirmed cases of AIDS
and half of them had already died at the
same time there was a similar
circumstance that seemed to be happening
with 23 infants in 1989 the number of
AIDS cases in the United States had
risen to a hundred thousand by 1991 only
two years later AIDS was the leading
cause of death for young men in the
United States between the ages of 25 and
44 at the same time the rate of birth
for hiv-positive infants or as we you
familiar them back then aids babies was
2,000 per year back at the
hole-in-the-wall during the 90s we were
serving about
200 kids living with HIV every summer
now at most camps the emergencies that
you’ll run into our broken flip-flop may
be a twisted ankle or a bee sting or too
much pudding at lunch the hole in the
wall it was a little bit different a
fever could represent the potential
onset of AIDS because a child wasn’t
taking their meds now imagine yourself
as a cabin counselor working with these
children and there’s a hundred of them
and there’s doctors and nurses and there
are these med protocols they need to
take them three and four times a day
fistfuls of pills and liquids that just
tastes awful along with these terrible
side effects Ali was a young lady who
had she had some fire I knew her for
three years her medications changed so
often over the course of those three
years I couldn’t keep track of them and
they had they had these terrible side
effects when she was nine years old her
torso and her legs were covered with
sores we would walk together to an
activity hand in hand and suddenly she
would just collapse in pain when she was
ten sorry the psychiatric effects
started to take hold she would lash out
for no reason because of fear or anger
by the time she was 11 she was wising up
she didn’t want to take her meds anymore
she knew that they were hard to swallow
she knew that they made her feel sick
she knew that they made her feel sad she
also suspected that they were the cause
of the sores inside of her mouth and
down her throat that made it almost
impossible for her to speak medical
science was doing everything they could
to save Ali’s life but let’s be very
clear
she was an experiment she and many kids
like her that had to suffer through this
they were the data that was allowing
these brilliant researchers to come up
with techniques that were going to save
lives unfortunately not on time for Ali
at that point it seemed so hopeless the
cards seemed to be dealt to these kids
they would get sicker and sicker every
year we didn’t know what to do so there
was I I remember us having the cooks and
the doctors and the social workers and
the nurses all of us we would do
everything we could every moment of the
day to try and make it as magical as
possible for these kids at camp and it
was mostly for them but it was partly
for us because we needed to feel like we
could do something then in 1996
antiretrovirals became available and
everything changed the death rate for
aids dropped by 80% many of the kids the
summer before that had left that were
too sick or too weak to participate in
any of our programs came back and they
were energized and they were ready to
rock there was a group of kids that were
now healthy and they were becoming
teenagers we didn’t even expect them to
survive a lot of them when they came
back started to struggle a little bit of
camp we noticed that they were some of
them were bored some of them were even
acting out we tried desperately to
figure out what was going on and we
could see they needed more these kids as
they became teenagers were thinking
about the same thing that every teenager
thinks about sex drugs and rock and roll
and their careers and school and
partnerships and fitting in and trying
to create a you a unique identity for
themselves as burgeoning adolescents
camp was built to have fun they needed
something different they needed a place
where they could engage in those
conversations where they could take some
risks where they could have
conversations about how HIV was going to
affect them moving forward I loved my
job at camp it was my dream job for 10
years
but I realized finally there was a
potential next step for these kids and I
needed to take the leap and we needed to
do an experiment so in 2001 I left my
dream job at the hole-in-the-wall gang
camp to found next step with the mission
of shattering limitations and elevating
aspirations of teenagers and young
adults leaving living with serious
illness and we experimented tried to
grab the magic we were innovative we
were cutting-edge we were energized we
were also too white too old and not
quite sick enough there’s a mantra in
the youth development world particularly
in the world of HIV youth development
never about us without us or in the wide
so we came to understand that it was not
about us designing and delivering these
amazing programs to these kids it was
about us designing and delivering these
programs with these kids and they taught
us so much in 2009 we decided to hire 18
teens and young adults living with HIV
to design and develop a one-of-a-kind
program in the world for people living
with HIV in their age group they came
together and they told us we really want
the magic of camp we want that community
but we also want to be able to have the
conversations the plenary sessions the
workshops of a conference so they wanted
a camp and a conference so we listened
and that year we launched the first next
it’s true and it’s stuck to that name
it’s stuck
we have we had our 10th one this last
summer and we’ve been bringing thank you
we’ve brought together teens and young
adults from around the world living with
HIV to sit in the room with their peers
leading a discussion or experts leading
a discussion about how to comply with
your meds about the impact of drugs and
alcohol on your health about sexuality
about the power structure and also
finding their community finding their
tribe and the impact of that a most
sixteen-years-old beautiful smile
blazing red hair she was an athlete she
was a scholar she was in clubs but she
had a secret she had a really heavy
secret one day she decided to tell that
secret to her best friend and that
secret was texted to another person and
then it was on social media then AIDS
was painted on her locker and she
had to move schools then that secret
caused behavior struggles cause
substance abuse issues cause social
isolation HIV and its stigma robbed
Emma’s identity it would take a
tremendous act of courage for her to
ever trust anyone again with her secret
and somehow amazingly a year later she
found that trust and with a group of
total strangers she traveled to
Massachusetts to participate in next
steps no longer voiceless camp Prince
and there she knew she realized that she
could leave those labels at the door
that she was free to talk about what
happened to her she was free to process
what was going on with her right now and
she was free to think about what her
future could be we asked her after that
first year and she said I now realize
that I can be a wife
a mother and a writer someday it was an
amazing transformation and Emma became
an advisor for us like many of these
other kids we’ve been listening to those
kids for years and since then our camp
Prince has expanded to year-round
programming both virtual and in-person
that include workshops and project
groups and mentorship opportunities and
music therapy it’s a place where these
young people can actually be themselves
where they can leave the label behind
but they can discuss HIV perhaps for the
very first time in their life they can
just be teenagers and young adults they
can be silly they can be vulnerable and
they can find their community for people
like Emma it can be a lifeline back to
their identity for young men like Monty
who struggled to take his meds regularly
it can be the inspiration that he needs
to be able to stay healthy to fully
participate in his life for young people
like Juanita who are achievers it can be
the opportunity to to have an internship
and get her dream job as a health
advocate and for young people like Janie
and Cantrell it can be where they fall
in love happy to say they have a healthy
and happy HIV negative two year old baby
that was conceived well after their time
with next step
just FYI so that brings us to today then
they were babies dying of AIDS then they
were kids living with HIV today with
grit and determination tons of hard work
and courage beyond what I can imagine
they are now classroom teachers their
research assistants their youth
ministers they are artists
they’re writers they’re mothers and
fathers but I’m not naive so then in
1991 I was an optimists optimist most
optimistic person you’ve ever met
now well I’m still really optimistic but
there’s a little bit of realism in there
consider this in the United States right
now there are 1.1 million people that
are HIV positive and one in seven of
them aren’t aware of their status the
vast majority of new diagnoses each year
are men and women of color over half of
the new diagnoses are happening in the
southern part and particularly the rural
southern part of the United States with
only about 30 percent of the population
there there are countries around the
world that are ten to twenty years
behind where the United States is in
providing services for people living
with HIV and AIDS and funding is going
away these battles were too hard-fought
and there were so many victories and
there’s a lot of heroes to thank for
those victories researchers advocates
politicians cultural icons that have
broken through some of the social and
medical barriers and gotten us to where
we are today but I’m telling you that
right beside them and often leading the
way are these young people these young
people that I work with every single day
are so many questions still remaining
why is it that stigma still exists why
can’t I show the faces of these young
people in this presentation because of
stigma why is it that resources aren’t
getting to our most needy population
living with HIV and AIDS can we cure HIV
I think we need to we need to channel
Quinn again and we need to listen just
listen and we need to truly hear more
today than ever and we need to act on
what we hear and imagine what’s possible
in the future thank you so much for your time
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