Once upon a time….The art of story-telling and the HIV/AIDS epidemic

Carmen D. Zorrilla, MDProfessor OB-GYNUPR School of MedicinePI: CEMI, PR-CCHD, UPR-CTU, PR HVTUMaternal-Infant Studies Center (CEMI)carmen.zorrilla@upr.edu

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

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

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

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

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

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”

Women as vectors Initial studies 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)

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

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)

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”

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/featurestories/2010/september/20100921fsunicefbreakfast/

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

Women as part of the solution

Activism Research design

and implementation

Research participation

Work force

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.”

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

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?

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

Bottled Up: As UNICEF Battles Baby-Formula Makers, African Infants Sicken Wall Street Journal (www.wsj.com) (12/05/00) P. A1Freedman, Alix M.; Stecklow, Stevehttp://ww1.aegis.org/news/ads/2000/AD002158.html

UNICEF Executive Director Carol Bellamy'sLetter to the Editor on the subject of preventing the spread of HIV/AIDS through breastfeeding http://www.unicef.org/newsline/00cblettertoeditor.htm

International Code on the Marketing of Breast-Milk Substitutes: do we need to revisit the policy?

Issues for the future: workforceThe aging and retirement of the

workforceThe 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)

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

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?

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

…Y colorín colorado, este cuento no ha acabado…