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Hemophilia in the developing world: transforming lives through international collaboration

2018; Elsevier BV; Volume: 2; Issue: Supplement_1 Linguagem: Inglês

10.1182/bloodadvances.2018gs112562

2473-9537

Aditya Jandial, Kundan Mishra, Rajeev Sandal, Nishant Jindal, Deepak Goni, Deepesh Lad, Gaurav Prakash, Alka Khadwal, Jasmina Ahluwalia, Neelam Varma, Pankaj Malhotra,

Cancer-related gene regulation

Hemophilia is an X-linked hereditary disorder. The worldwide incidence is 1 in 5000 (hemophilia A) and 1 in 30 000 (hemophilia B).1 Treatment for hemophilia includes deficient factor replacement with clotting factor concentrates (CFCs). CFCs are also used for acute hemophilic arthritis, along with rest, ice, compression, and elevation. There are many challenges for people with hemophilia, the most common of which are joint bleeds and deformity, which affect quality of life. Life-threatening visceral bleeding is not uncommon in hemophiliacs. Surgical intervention for hemophilia-related events that require it is always a demanding task, and the high cost of therapy is an obstacle to getting the necessary treatment. The following challenges are unique to the Indian population1-3: India has the second largest population of any country in the world. India has a high patient load: the total number of registered people with hemophilia is 18 353. Treatment for hemophilia is unaffordable for many. Less than 20% of the country’s population is covered by health insurance. India has a diverse geography. Many facilities that diagnose hemophilia are of poor quality. Care is suboptimal because many treatment facilities are of poor quality. Indians with hemophilia have a high rate of complications and disabilities.