Hemophilia, a rare genetic disorder that affects the body's blood clotting ability, causes long and excessive bleeding after an injury. The hereditary disease can also lead to chronic anemia, joint disease, loss of vision and even death when too much blood is lost in critical organs of the body such as the brain.
Although the disease only affects about one in 5,000 males, the World Federation of Hemophilia (WFH) says that 75 percent of people with the bleeding disorder do not receive adequate treatment which means that of the estimated 400,000 individuals who suffer from hemophilia worldwide, about 300,000 of them are deprived of regular and potentially lifesaving treatment.
Hemophilia patients in developing countries are particularly vulnerable to the risks of the disease as most of them do not receive regular treatment. David Kuter, director of the Center for Hematology at the Massachusetts General Hospital, said that because hemophilia treatment is scarce in developing countries, people with the disorder are likely to die early.
The outlook of hemophilia patients in poor nations though may take a positive turn as American biotechnology company Biogen Idec Inc. and Swedish Orphan Biovitrum AB (Sobi), a pharmaceutical company based in Stockholm, Sweden with focus on rare diseases, announced at the WFH 2014 World Congress in Melbourne, Australia on Monday that they will donate enough quantities of hemophilia drugs to treat thousands of patients in developing nations.
The companies said that they will donate one billion international units (IUs) of clotting factor drugs for hemophilia sufferers in poor countries including Africa, Latin America and Asia where most of patients have limited or no access at all to hemophilia drugs. The first 500 million IUs will be given over five years while the remaining half will be intended for future distribution. The shipments for the medicines are expected to start next year.
"This donation is consistent with our patient-centered approach, and has the potential to transform the treatment model for people with hemophilia in developing countries," said Sobi president and CEO Geoffrey McDonough. Biogen Idec CEO George Scangos has likewise said that the donation will help thousands of hemophilia sufferers who do not have access to treatment.