A decade ago, Sobi and Sanofi embarked on a journey with the World Federation of Hemophilia (WFH) to help transform the lives of people living with haemophilia in under-resourced regions. In order to help bridge the gap in access to treatment around the world, Sobi and Sanofi committed to donate 1 billion international units of haemophilia A and B concentrates to the WFH Humanitarian Aid Program. Today, as we look back on a decade of impact, we see not just numbers, but the countless lives that have been touched and the communities that have been transformed.
Recently, Professor Stefan Lethagen, Vice President of Medical & Clinical Sciences, MACD and Charlotte Pahl, Director of Medical Programs for Haemophilia at Sobi visited India to witness firsthand the profound effects of the WFH HA Program. Speaking about the trip, Stefan described the impact of the personal stories he encountered while there.
“Patients and families shared countless stories of hardships and resilience, which really moved us. Parents cried as they told us about the struggles they had in the past before treatment for their children was available, but there were also tears of happiness for the better quality of life access to treatment has brought. They were immensely grateful for the Humanitarian Aid Program’s donations,” he said.
While the impact and reach of the donations so far has been vast, haemophilia is still widely underdiagnosed in India. With an overall population of around 1.4 billion, the expected haemophilia population is estimated to be around 146,000, but only 28,000 have been diagnosed.
Charlotte described the trip as deeply inspiring, as she was able to witness how the Program has transformed lives firsthand.
“As a former nurse practitioner, I am incredibly proud of what we have collectively achieved through the Program,” she said. “Seeing the comprehensive haemophilia care centres in Mumbai and Pune was a privilege and a truly moving experience. To see in person and hear from patients and their families directly how the Humanitarian Aid program has given new hope for the future was a very special moment.”
During the trip, Sobi and Sanofi had the opportunity to visit the King Edward Memorial Hospital Mumbai and Sahyadri Speciality Hospital, Pune. These two facilities are treating people with Haemophilia A and B, but also performing surgeries including joint replacement, fractures, pseudo tumour, delivery and hernia, and dental surgery.
“The teams at the centres we visited have excellent medical capabilities, knowledge, and skills and are changing lives, despite the limited financial resources available to them,” said Charlotte. “Some families must travel vast distances to reach these haemophilia centres, so we were impressed with the outreach and education program that is also in place. To see how home treatment protocols are being followed similarly to those in Europe was very valuable, as it shows the goal of managing haemophilia with on-demand and regular prophylactic treatment is attainable.”
“Ongoing treatment and surgeries are part of the story, but the centres are also delivering occupational therapy and education despite limited resources,” added Stefan. “These clinics help people get back to daily life after a bleed. Beyond treatment, the Program is also helping to establish expertise in comprehensive care centres. Without treatment, there was no foundation to build up these centres, including specialised coagulation labs, orthopaedic expertise in haemophilia surgery, dentistry practices, physiotherapy and occupational therapy. These are all now in place which is wonderful to witness.”
The group also visited the Arshiya Free Trade Warehouse Zone, located outside of Mumbai, which is where the medicines first arrive in India. From this location they are shipped domestically and to other parts of Asia. The logistics follow strict criteria for transport, storage, and distribution.
Countries must meet strict selection criteria to be able to participate in the WFH Humanitarian Aid Program.
These criteria are:
King Edward Memorial Hospital Mumbai and Sahyadri Speciality Hospital, Pune patient data:
The World Federation of Hemophilia’s Humanitarian Aid Program has emerged as the world’s largest distributor of donated treatment products, providing essential care to tens of thousands of people with haemophilia globally. Since its inception in 1996, the Program has treated over 26,000 patients across more than 112 countries, delivering reliable access to safe treatment and care, regardless of location or type of bleeding disorder. By introducing prophylaxis and enabling elective surgeries in dozens of countries, the Program has stopped over 400,000 bleeds, facilitated more than 8,000 surgeries, and helped over 6,000 patients—mostly children—receive preventive treatment.
In 2023 alone, the program made a significant difference in the lives of over 15,500 patients across 78 countries, underscoring its vital role in addressing the urgent public health challenges faced by those living with haemophilia and other bleeding disorders.
The WFH Humanitarian Aid Program plays a crucial role in enabling haemophilia patients in India and beyond to continue their education or pursue work while improving health outcomes and providing hope to thousands. For Sobi, participating in this initiative goes beyond donations—it embodies our commitment to transforming lives of those with rare and debilitating diseases. As Founding Visionary Partners, we continue to take immense pride in our role in this global effort.
About the WFH Humanitarian Aid Program
The WFH Humanitarian Aid Program improves the lack of access to care and treatment by providing much-needed support for people with inherited bleeding disorders in developing countries. By providing patients with a more predictable and sustainable flow of humanitarian aid donations, the WFH Humanitarian Aid Program makes it possible for patients to receive consistent and reliable access to treatment and care. None of this would be possible without the generous support of Sanofi and Sobi, our Founding Visionary Contributors; Bayer, CSL Behring, and Roche, our Visionary Contributors; Grifols, our Leadership Contributor; and Takeda and Japan Blood Products Organization, our Contributors. To learn more about the WFH Humanitarian Aid Program, www.treatmentforall.org.
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