SCD Voices is based on the original idea of Agence Catalpa, and conducted on behalf of the Iron Health Alliance.
Coordination, interviews, writing, scenario: Géraldine Genin, Audrey Andrianarivo
Photographs and scenario: Thomas Troadec
Graphic design: Axel Perignon
Sound editing: Christophe Lalanne-Claux
Web engineering: Florian Gracy
Production year: 2014
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Disclaimer: This is an international website for Iron Health Alliance, and is intended for healthcare professionals outside the US. The information on this site is not country-specific and may contain information that is outside the approved indications in the country in which you are located.
Copyright © 2014 Novartis AG. All Rights Reserved
Sickle cell disease (SCD) is a group of inherited genetic disorders characterized by defective hemoglobin synthesis. By causing, from early childhood onwards, chronic anemia, acute painful episodes known as vasoocclusive crises, infection risks and organ damage, this disease impacts significantly on daily life, and presents important challenges for the people who are affected, their families, and the medical community.
Although improvements in patient care have had a significant influence on prognosis, with a substantial increase in life expectancy, long-term health, quality of life and lifestyle choices still depend on access to care, constant caution and close monitoring. Global awareness and action at all levels are still necessary to achieve better understanding, better access to treatment and better management.
From this challenging context emerged the idea of SCD Voices: an international human adventure initiated in 2013, a journey designed to collect and share individuals’ stories about SCD. The web documentary here features testimonies of patients and physicians encountered in this journey. It shows the diversity of SCD, and the ways people cope with this disease in daily life, in different parts of the world. This project is designed to raise awareness through a series of portraits showing how SCD impacts on people’s daily life.
Human ties and dialogue at work
SCD Voices is also about the people who have united their efforts and collaborated across geographical boundaries throughout this global journey:
--• Project managers interacted with local SCD experts, who showed strong dedication: first in drawing willing patients in the project, then in taking part in interviews, talking about their experience, and finally in providing scientific highlights and ways to talk about the disease, to contribute to better understanding.
--• Local advisors and coordinators worked together to enable experts and patients in each country to understand the nature and importance of this project, arranged the preliminary encounters, and provided onsite reporting.
--• The moments of privileged exchange between patients, the interviewer and the photographer gave birth to the rich and sensitive material that you can now discover on this website.
Throughout its development, the SCD Voices project has been a sharing experience, conceived to give sensitive, human perspectives on the disease, in order to allow better understanding, and generate more actions.
Partners: Novartis and the Iron Health Alliance
Novartis Oncology established the Iron Health Alliance in 2011 as a way to help improve the standard of care for people diagnosed with chronic iron overload. The Iron Health Alliance is a partnership that raises the standard of care of chronic iron overload by supporting education, diagnostic access, and patient management for optimized outcomes.
The Iron Health Alliance provides support through three core pillars of care to improve outcomes:
--• Increased awareness and knowledge of diagnostic methods to detect and measure iron overload
--• Increased awareness of anemias
--• Increased awareness of the importance of treatment adherence
It is as part of this dynamic that the Iron Health Alliance has given impulse to SCD Voices, allowing Novartis to sponsor this web documentary, which is an important step towards global SCD awareness.
This adventure would not have been possible without:
--• the four patients, whose names will not be disclosed in respect for their privacy, who agreed to share their experience as part of this project of dialogue and international communication
--• the local SCD experts, whose human and scientific involvement was remarkable:
-----Pr Rodolfo Cançado, Sao Paulo, Brazil
-----Dr Marc Hendricks, Cape Town, South Africa
-----Pr Marianne de Montalembert, Paris, France
--• those who allowed the encounters to take place in the best conditions, particularly the local Novartis teams, whose support made this project possible.