Sanofi Genzyme’s vision is to help transform the way hemophilia care is delivered in the developing world, where the vast majority of people with hemophilia have limited or no access to diagnosis and treatment.
Together with Sobi™, we have agreed to donate up to 500 million additional IUs, which combined with amounts already donated, will make this the single largest donation of hemophilia factor therapy in history– up to 1 billion IUs of factor to the World Federation of Hemophilia (WFH) Humanitarian Aid program.
A predictable supply of factor therapy is essential to improving treatment and care. In addition, education programs for treaters and patients are critical initiatives helping to develop in-country capacities to improve diagnosis and treatment monitoring; all of which are needed to create a sustainable treatment environment that leads to better outcomes for patients.
Providing Hope in Kenya
People living with hemophilia in Kenya face a number of challenges that people in developed countries may not face, such as access to a quick and accurate diagnosis, sustained availability of treatment options and disease awareness and education.
Salomon is one of the many patients the WFH Humanitarian Aid program has benefited in Kenya. A 10-year-old boy who lives in an area Kibera, near Nairobi, Kenya, called Kibera, which is one of the largest slums in the world, Salomon has faced many challenges because of his hemophilia.
The daily kilometer walk to get to school is more challenging for Salomon than for his classmates. He walks with a single donated crutch on dirt roads that often turn muddy after rainstorms. Sometimes, his mother carries him to school.
Bonnie Anderson, Head of Humanitarian Programs for Sanofi Genzyme, recently traveled with the WFH to Kenya where she met Salomon and witnessed first-hand the positive impact the WFH Humanitarian Aid Program has had on the community.
“The WFH has done a wonderful job of bringing people together and creating a community focused on complete patient care. The fact that our company, together with Sobi and the WFH, has helped provide this opportunity to patients and families through our donation is wonderful, and I feel privileged to be part of it,” Bonnie said.
Salomon has been receiving donated factor from the WFH Humanitarian Aid Program for several years. The donations have helped Salomon and his family to manage his condition and has allowed them to develop a regular relationship with a physician, who visits him in Kibera to monitor his health and help with his treatment.
Just like his peers, Salomon has now been able to attend school regularly, where he enjoys science and playing football (soccer). He also enjoys playing video games and spending time with his friends and family.
Honoring the Rite of Circumcision
For young Kenyan men, circumcision is an important cultural rite of passage, which allows them to transition from a boy to a man, get married, and become an elder in their society. For men living with hemophilia, this minor surgery carries big risks, and in the past, most hospitals in the country would not do circumcisions on young men with hemophilia because factor therapy was reserved for acute situations.
Because of the cultural importance of this procedure and the stigma associated with not being circumcised, many young men would go to a family member or friend to have the procedure done in a non-medical environment. This often led to bleeding complications or infections resulting in hospitalization.
Through the combined efforts of the WFH Humanitarian Aid Program, the Kenya Hemophilia Association and Kenyatta National Hospital in Nairobi, the barriers to circumcision for boys with hemophilia are becoming a thing of the past. With factor donated through the WFH Humanitarian Aid Program, the Safe Circumcision Program was launched to ensure all young men are able to participate in this important cultural rite of passage, despite a hemophilia diagnosis.
The Impact of Our Humanitarian Aid Program
The initial commitment of 500 million IUs in 2014 was an important first step toward providing those most in need with a predictable and sustainable supply of clotting factor. In June 2020, we renewed our commitment to the WFH Humanitarian Aid Program with an additional donation of up to 500 million IUs. In addition, we will continue to provide financial support for initiatives such as treatment, access and education programs. This provides the opportunity to build on the progress that has been made and further address the treatment gap and raise the standard of care in the developing world.
Since shipments began in 2015, our donation with Sobi has helped to treat over 160,000 acute bleeds; enabled more than 2,300 surgeries, including life and limb-saving operations; and helped to increase the percentage of children receiving treatment from 14 to 37 percent.
What is hemophilia?
Hemophilia is a rare, genetic condition in which a person’s blood does not clot normally because of insufficient levels of certain clotting factors–proteins that control bleeding. People with hemophilia may bleed spontaneously or for a prolonged period of time after an injury (e.g. from falling, impact, injury to the head). Bleeding can occur inside the body, most often into the joints and soft tissue. Repeated bleeding in the joints can cause other health problems such as joint damage.