Mumbai: In a landmark move, Amrita Hemophilia Treatment Center has associated with the Manchester Hemophilia Treatment Center through a Twinning Program, aiming to improve the quality of Hemophilia Care in India by offering comprehensive care and treatment to patients afflicted with the disease. Hemophilia is a medical condition in which the ability of the blood to clot is severely reduced, causing the sufferer to bleed severely from even a slight injury.
The twinning partnership aims to improve the standard of care to an international level and grow the center into an international training and treatment center. India has 80,000 hemophilia patients, of which 1,750 are detected in Kerala, with many more remaining undetected. The twinning program was inaugurated to commemorate World Hemophilia Day, which had the theme “Access for All and Prevention of Bleeds as the Global Standard of Care.” The goal of the twin center is to reach the root level of the problem and help patients prevent bleeds and live a functional life without deformities with the help of international standard healthcare in the country.
The event was graced by Hibi Eden, Member of Parliament from Kerala, Dr. Rahul U.R., the Kerala State Nodal Officer, Dr. Vijay Kumar, Aluva HTC, Medical Officer Incharge.
Said Dr. Neeraj Sidharthan Clinical Professor, Department of Blood and Marrow Transplantation, Amrita Cardio-Oncology Clinic, Clinical Hematology & Stem Cell Transplantation: “The programme aims to provide an international training and treatment centre with the support of the Haemophilia Federation of India and the World Federation of Haemophilia. Considered as the Father of Hemophilia care in Kerala and the Aluva HTC incharge, Dr. Vijay Kumar Sir also mentor us throughout the process. Hospital also had support of the President of the Hemophilia Federation of India, Preemroop Alva, who helped us start Twinning Programs and Harshal Kale, from the World Federation of Hemophilia. Many patients with hemophilia are likely not getting diagnosed, so there is an immediate need to reach out to the community and improve diagnostics across the country. Once a diagnosis is made, there is also a considerable gap in providing patients with the standard of care. The standard of care globally is prophylaxis or replacement therapy, but most patients in India still rely on on-demand therapy. Furthermore, many older hemophiliacs in our community suffer from severe joint disease and damaged joints and are crippled. Consequently, most patients with hemophilia die young due to severe bleeding, such as intracranial bleeds and other major bleeds. Some also have transfusion-related infections like HIV, hepatitis B, and hepatitis C.”
He further added: “To tackle these significant problems, the Amrita Hemophilia Treatment Center is partnering/twinning with the Manchester Hemophilia Treatment Center. Amrita Hemophilia Treatment Center has been involved in the care of hemophiliacs for the past decade, introducing many new innovations in the region, such as daily diagnostic testing for factor eight and factor nine assays. We also have a comprehensive coagulation lab where nearly all bleeding disorders can be diagnosed, including rare ones.”
The twin center aims to strengthen the emerging center to detect new hemophilia patients and improve joint health by correcting deformities, strengthening the joints, and preventing bleeds by involving physical medicine and rehabilitation, Yttrium Synovectomy for chronic synovitis. Acute complications are managed by the adult and pediatric divisions of Hematology department, while joint replacements and fractures are managed by the Department of Orthopedics. Gastrointestinal bleeds and intracranial bleeds are managed by the Department of Gastrointestinal Surgery and Neurosurgery. Nursing and clinical pharmacists provide overall follow-up and factor support.
