30 Years of Making a Global Impact
By: Sandeep Sahney, Head of Japan & Pacific Region, Sanofi Genzyme
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The spirit of innovation at Sanofi Genzyme that pioneered therapies for Lysosomal Storage Disorders (LSDs) – rare genetic conditions caused by enzyme deficiencies – has also resulted in a unique and longest running humanitarian initiative of its kind. This year (2021) marks the 30th anniversary of Sanofi Genzyme’s Rare Humanitarian Program that globally supports patients suffering from these disorders including Gaucher disease, Fabry disease, Pompe disease, and Mucopolysaccharidosis (MPS) I and II.
Founded in 1991, the Humanitarian Program evolved out of firm conviction of Henri Termeer and other leaders to find a way to help patients of these disorders who would not be able to afford or access these treatments. The rarity of these life-threatening and progressive disorders and the lack of requisite knowledge and experience among the medical community made the access discussions arduous and this program emerged as a bridge to help patients waiting for treatment. Over the past 30 years, our program has helped patients across the world – agnostic of geography and based completely on patients’ medical condition as well as our ability to help patients who meet the program’s criteria. Outside of the Humanitarian Program, Sanofi Genzyme also shows a commitment to supporting physician education, diagnosis, treatment monitoring and patient advocacy in certain countries.
I have had an opportunity to witness and participate in this program upon joining the organization in India to set up the operations in 2007. I was greatly impressed and inspired with our bold aspiration to help level the playing field for people with rare diseases around the world. And it was indeed quite incredible to see that even though we had no footprint in India, there were many patients who were already benefitting under the Humanitarian Program. I also realized that advancement in care for rare disease patients extended far beyond just an innovative treatment discovery and access to care. Across the world it required the ability to educate and train healthcare professionals to diagnose, treat and care for the people living with rare diseases, and to support the development of sustainable healthcare systems to improve patients’ lives.
Making a difference to the lives of patients and bringing hope to those who had none, suddenly took on a very different meaning.
Over the past 14 years, I have witnessed the high level of passion and dedication to help patients through this program in countries around the world. As of now, we have more than 1,000 patients in 70 countries who are receiving humanitarian access to these treatments. And over 350 patients have been on the program for over 10 years clearly demonstrating the commitment and a sense of responsibility that is the bedrock of this program.
The most rewarding part of being a part of the Humanitarian Program at Sanofi Genzyme is to see so many of these patients pursue their dreams. There are many inspiring stories from participants of this program who pursue higher education and even earn medical degrees, become successful professionals, and live a full life. Through their journeys, the voice of the rare disease community has become stronger and has led to the development of a more supportive and sustainable healthcare system. A lot has happened over these 30 years, and we also realize that much more needs to be done – we stand as committed as we were three decades ago and are always happy to partner with other stakeholders across the globe.