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1 sun 1600 zorilla 2011 national hiv prevention conference final zorrilla
1. Once upon a time….
The art of story-telling and the
HIV/AIDS epidemic
Carmen D. Zorrilla, MD
Professor OB-GYN
UPR School of Medicine
PI: CEMI, PR-CCHD, UPR-CTU, PR HVTU
Maternal-Infant Studies Center (CEMI)
carmen.zorrilla@upr.edu
2. Once upon a time….
The art of storytelling and the
HIV/AIDS epidemic
Storytelling is the conveying of events in
words, images and sounds, often by
improvisation or embellishment.
Stories or narratives have been shared in
every culture as a means of entertainment,
education, cultural preservation and in order
to instill moral values.
Crucial elements of stories and storytelling
include plot, characters and narrative point of
view.
http://en.wikipedia.org/wiki/Storytelling
3. Why storytelling?
...in the beginning….
There was a lot of denial
AIDS exposed the best and the worst
in all of us
Many health care providers would
not care for people “living with HIV”
(they would use phrases like:
“people dying of AIDS”)
Stigma, prejudice, rejection were
prevalent and there were negative
social consequences to disclosure
One way to convince health care
providers to fulfill their professional
and ethical responsibilities was to tell
the stories of our patients
Thus, we learned the art of story-
telling
4. Then came activism…
Activism was a needed strategy and it
succeeded
Using the media, influencing political
scenarios and making public
appearances and protests (marches,
vigils) general awareness was raised
Activists used their own testimonials to
move the diverse groups... they became
the story-tellers
5. Scientists, providers and activists
shared a common goal: the end
of the epidemic
The combined efforts of scientists, providers,
people living with HIV and activists facilitated
(sometimes not as easy) shared views of
needs for care, treatment, prevention and
policy changes to provide protection from
discrimination
I believe that we used story-telling to
complement the scientific data to convince
funders and policymakers
The human story was backed by science and
vice versa: science was supported by the
human experience
6.
7. Some of the stories were about...
women’s perspectives
Women as vectors
Finding a voice for
women
Women as activists
Women as part of
the solution
Women scientists
and providers
8. Viviana
She lived in the rural
region of Puerto
Rico with her 6 y/o
son
She wrote a letter to
her deceased
husband: “I forgive
you for giving me
AIDS”
9. Women as vectors
Initialstudies focused on
transmission from women:
Sex workers
Pregnant women
Studies on non-pregnant
women were
conceptualized and
funded later (natural
history, progression of
disease, and finally
treatment)
10. The AIDS Activism
Forced conversations and discussions with NIH,
CDC, FDA, service providers and other
stakeholders
Forced the participation of affected individuals
and communities in policy and decision-making
Brought new perspectives and strategies based
on the concept of need for emergency
measures:
To fund and expand research
To allow women of reproductive age to participate in
potentially life-saving clinical trials
To change FDA policies
To expand care and comprehensive services
To implement protective policies and laws
11. PACTG 076:
a milestone
Was the first study approved
by the FDA for women of
“reproductive age”, in fact
for pregnant women
Prospective, randomized,
double-blind, placebo-
controlled trial
The drug ZDV (also known as
AZT) was given during
pregnancy, labor and
delivery and to the infants of
women living with HIV
Trial stopped in 1994 due to
efficacy of the drug vs.
placebo (67.5% reduction)
12. Impact of PACTG 076
Changed the paradigm (1994)
Provided the best justification for universal prenatal HIV
screening and for expansion of care delivery systems
The intervention dramatically reduced the perinatal
HIV transmission in high income countries
Provided an incentive in the search for
shorter/cheaper regimens for international settings
Gave a sense of hope to women and families living
with HIV
First step in “stopping the transmission of HIV/AIDS”
13. Successes (?) in the prevention of
perinatal HIV transmission
More than 1,000 children in low-and middle income
countries are newly infected with HIV during
pregnancy, delivery, and breastfeeding
Around 430,000 children are born with HIV each year
In Botswana, maternal mortality rose 133% between
1990 and 2008, in South Africa 80%, and in Kenya 38%.
In some countries, more than half of maternal mortality
is attributable to HIV, e.g. Botswana (77%), Swaziland
(75%), Lesotho (59%), Zimbabwe (53%), and South Africa
(43%).
World leaders focused on the elimination of mother-to-
child HIV transmission by 2015
http://www.unaids.org/en/resources/presscentre/featur
estories/2010/september/20100921fsunicefbreakfast/
14. Omayra
She is shown here with
her daily supply of
medicines (Women First
Trial)
Her son and her mother
were aware of her
diagnosis and provided
a supportive role
15. Women as part of the solution
Activism
Research design
and
implementation
Research
participation
Work force
16. Mary Fisher: A Whisper Of AIDS
(Address To The Republican National
Convention, 1992)
“Because, unlike other diseases, this one travels.
Adolescents don't give each other cancer or heart
disease because they believe they are in love.
But HIV is different And we have helped it along.
We have killed each other with our ignorance, our
prejudice, and our silence. “
“To my children, I make this pledge: I will not give in…And
I will not rest…until I have done all I can to make your
world safe…. I will seek a place where intimacy is not the
prelude to suffering.”
17. Workforce
Expertise was needed
to provide care to
people living with HIV
A workforce was
developed with
sustained funding from
diverse sources
Significant role of the
Ryan White Care Act
18. Who will tell the next story?
What kind of story do we need to tell to
get the support we need for expanded
integration of treatment and prevention?
Will it be a fable, a science fiction novel, a
tragedy or a love story?
Who will be the storyteller?
Will history share our story?
19. Issues for the future:
national and international needs
and action items
Need to continue to focus on women’s issues
Enhance their participation in prevention
research
Need to access new technologies
Need to continue to evaluate the treatment
strategies
Study and manage emerging complications
such as metabolic, cardiovascular disease and
cancers
20. International Code on the Marketing
of Breast-Milk Substitutes:
do we need to revisit the policy?
Bottled Up: As UNICEF Battles Baby-
Formula Makers, African Infants Sicken
Wall Street Journal (www.wsj.com)
(12/05/00) P. A1
Freedman, Alix M.; Stecklow, Steve
http://ww1.aegis.org/news/ads/2000/AD
002158.html
UNICEF Executive Director Carol Bellamy's
Letter to the Editor on the subject of
preventing the spread of HIV/AIDS
through breastfeeding
http://www.unicef.org/newsline/00cblett
ertoeditor.htm
21. Issues for the future: workforce
The aging and retirement of the
workforce
The need for incentives, training,
support and renewal of the workforce
The need to train and support new
(young) researchers
The need of expertise in metabolic,
cardiovascular, cancer and hepatic
manifestations and complications
Same issues apply for activists (need for
continuity and renewal)
22. Issues for the future: research
Need to continue to focus on domestic
populations at risk and living with HIV
Need to continue efforts of involving women
in prevention research
Acknowledge the difficulties in recruitment
and retention of women at risk in prevention
trials
The same difficulties will be present during the
implementation of the comprehensive
prevention strategies
23. Issues for the future:
comprehensive prevention
Given the efficacy of treatment in prevention
(treatment of discordant HIV couples, PrEP, PEP)
and the newer biomedical strategies
(microbicides, vaccines?) we will need to
consider expanded funding and the integration
of programs
Funding decisions will need to consider cost-
benefit, ethical, political and societal views and
perspectives
We have compelling arguments that include
justice and human rights; do we need new
story-tellers?
24. Once upon a time….
This story is about smart and committed
people who were able to combine
resources to allow for an expanded use
of strategies and in the process
discovered a way to magnify the
impact and attract new resources and
attention to end the AIDS epidemic.
It united this and the next generation in
common goals and humanistic values
It is a story of success with challenges
and difficulties which lead to
awareness, enlightment, improved
health and justice
On some aspects it is a spy-novel, a
quest, a love story and a science-fiction
story that hopefully anticipates the
future
It will be passed on from our children to
our grandchildren and to generations to
come
