Initiative on Hemophilia Care VI Conference 2022

Awareness is key and events like these help in sharing the information on Hemophilia with the entire country. Honble Sh. Harsh Mangla, IAS, Director, NHM, MoHFW also marked their presence at the conference speaking about the new policies and steps taken by the Government to make the best services available and create awareness about rare diseases in India.

• Hemophilia Federation (India) in association with the Ministry of Health & Family Welfare, celebrated “World Hemophilia Day” by hosting one of India’s biggest conferences in New Delhi on 17th April 2022.

• Thought leaders from the health and welfare segment discussed hemophilia and other inherited bleeding disorders and how to increase sustainable and equitable access to care and treatment across the country Hemophilia Federation (India) (HFI), an apex organization working on a mass level for the welfare of the Persons with Hemophilia (PwH) in the country, recently hosted a day-long conference in association with the Ministry of Family and Welfare at Hotel Inn, Aero City. The Chief Guest at the event was Hon'ble Shri Arjun Ram Meghwal, MoS (PA&Cul), GOI. Addressing the attendees, Mr. Meghwal said, “Hemophilia Federation India is doing a great job by bridging the finest medical professionals together at “Initiative on Hemophilia Care VI Conference 2022” with the objective of finding the best solution and discussing the policy level changes required. Awareness is key and events like these help in sharing the information on Hemophilia with the entire country.” Hon’ble Sh. Harsh Mangla, IAS, Director, NHM, MoH&FW also marked their presence at the conference speaking about the new policies and steps taken by the Government to make the best services available and create awareness about rare diseases in India. Speaking on the inaugural, Mr. Premroop Alva, President, HFI said, “World Hemophilia Day is one of our main initiatives which is observed globally in 140 countries. The more we engage on this day, the greater will be the opportunity for the Hemophilia Community to advance its cause. We are delighted that the Health Ministry is providing complete support to HFI in pursuit of comprehensive Hemophilia care. We have come a long way but have a long way ahead. There are certain hurdles like our identification is low. Huge lack of procurement. Uneven distribution. Procurement possesses, which can be addressed by having a good hemophilia policy in the state and central level.” The “Initiative on Hemophilia Care VI Conference” held focussed discussions on New Treatment options in Hemophilia, the Role of WFH - Humanitarian Aid, Access to Optimal Care, State Specific Discussions on procurement and comprehensive care, and Conundrums in Hemophilia Care in India led by thought leaders like, Prof. Naresh Gupta, M.D. Medical Consultant, MAMC, Advisor in Haemophilia, Lok Nayak Hospital, Delhi), Prof. Tulika Seth, AIIMS, New Delhi, Dr. Nita Radhakrishnan, Associate Professor and Head Post Graduate Institute of Child Health, Noida, Dr. Rohan Kolla, Novo Nordisk India, Mr. Mohit Saxena - Lead Marketing, Roche India Pvt. Ltd. and Dr. Hitesh Muley, Pfizer. In addition, prominent doctors, hematologists, physiotherapists, and hemophilia caregivers from various medical colleges & hospitals in the country are also participating. The event was supported by leading pharmaceutical companies - Pfizer, Roche, Novo Nordisk India Pvt. Ltd., and Grifols. The federation has been raising the voice of the Hemophilia Community for 39 years since its inception in 1983. Through this initiative, aims to engage with the Health Ministry and other stakeholders concerning creating awareness, finding executable solutions and promoting comprehensive care for Hemophilia patients at local, regional, and national levels. Remarkably, the integration of the Hemophilia Federation (India) with the Health Ministry in the last four programs was highly successful as Hemophilia could receive recognition. Human blood is an essential element of human life and there are no substitutes. Access to safe blood is a life-saving measure. Considering the burden and the cost of management and for suitable control measures, a comprehensive guideline for Haemoglobinopathies (Thalassemia, Sickle cell anemia, and other variant anomia) has been prepared by the Government of India. Under the National Health Mission, the Government of India provides financial support to the States to strengthen their health care systems including a system for handling blood disorders with the following tasks; • Blood cells coordinate with the RBSK and the maternal health division for implementing the Haemoglobinopathies Guidelines.

• Ensure that the infra-structure required for networking of services at different levels of health care is strengthened to ensure screening of the children and the antenatal mothers.

• Training of the required staff involved in the program for blood disorders • Provide optimal care to all patients of thalassemia, sickle cell disease, and hemophilia patients by establishing daycare facilities for transfusion and infusion, monitoring with the help of state health departments.

• Provide financial support for obtaining medicines like iron chelation, AHF, and other necessary medicines in coordination with the state health department • The awareness programs for the Haemoglobinopathies &hemophilia are being organized.

• A national registry is being created which would be worthwhile and would be an important tool for planning future patient services. About Hemophilia Hemophilia is a genetic and life-threatening bleeding disorder. Even with a minor injury or cut, in hemophilia patients’ blood does not clot normally due to the absence of clotting proteins called Factors. If not taken care of, recurrent and prolonged bleeding into joints and muscles can lead to permanent disability, and bleeding from the sense organs can lead even to death. The only possible treatment is an infusion of life-saving drugs called Anti-Hemophilic Factors (AHF), which is costly and neither produced nor readily available in India. (1 unit of Factor costs around Rs. 10-12 and at any bleeding episode, a person needs 500 to 2,000 IUs in one shot which amounts to an expenditure of Rs. 5,000 to Rs. 20,000 on an average). About Hemophilia Federation (India) HFI is the only non-profit, self-help organization working for the welfare of people with Hemophilia. With the network of 90 Chapters spread across the country, we aim to reach out to more and more PWH and provide quality care, affordable treatment, educational & psycho-social support, and economic rehabilitation. We have so far been able to identify more than 25,000 hemophiliacs across the country out of an estimated 1.2 lacs (i.e. 1 in every 10,000 population). Image: Chief Guest at the ''Initiative on Hemophilia Care VI Conference 2022'' Hon'ble Shri Arjun Ram Meghwal, MoS (PA&Cul), GOI being facilitated by Dr. Shashikant Apte, VP (Medical), HFI 

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