Hemophilia Care Initiative VI Conference 2022

An Awareness and Way Forward Program organized by HFI in association with the Ministry of Health and Family Welfare New Delhi, Delhi, India (NewsSee) • The Hemophilia Federation (India) in association with the Ministry Health and Family Welfare celebrated World Hemophilia Day by hosting one of India’s largest conferences in New Delhi on April 17, 2022.

• Thought leaders from the health and wellness sector discussed hemophilia and other inherited bleeding disorders and how to increase sustainable and equitable access to care and treatment in all the countries. Hemophilia Federation (India) (HFI), an umbrella organization working at the mass level for the welfare of people with hemophilia (PwH) in the country, recently held a one-day conference in association with the Department of Family and Welfare at the Hotel Inn, Aero City. The chief guest of the event was Hon. Shri Arjun Ram Meghwal, MoS (PA&Cul), GOI. Addressing the attendees, Mr. Meghwal said, “The Hemophilia Federation of India is doing a great job in bringing together the best healthcare professionals in the ‘Haemophilia Care Initiative Conference VI 2022’ in the aim to find the best solution and to discuss the changes at the political level required. . Awareness is key, and events like these help share information about hemophilia across the country. Hon’ble Sh. Harsh Mangla, IAS, Director, NHM, MoH&FW also marked his presence at the conference by speaking about the new policies and measures taken by the government to make the best services available and raise awareness of rare diseases in India. Speaking at the inauguration, Mr. Premroop Alva, President of HFI, said, “World Hemophilia Day is one of our major initiatives which is celebrated globally in 140 countries. The more we engage on that day, the greater the opportunity for the hemophilia community to advance its cause. We are delighted that the Department of Health is providing full support to HFI in pursuing comprehensive care for hemophilia. We have come a long way, but we still have a long way to go. There are certain obstacles like our identification is weak. Big lack of supply. An unequal distribution. Supply has, which can be solved by having a good hemophilia policy at the state and central level. The Initiative on Hemophilia Care VI conference featured focused discussions on new treatment options for hemophilia, the role of the WFH – humanitarian assistance, access to optimal care, discussions specific to hemophilia ‘State on Comprehensive Care and Supply, and the Conundrums of Thought-Directed Hemophilia Care in India. leaders like Prof. Naresh Gupta, Medical Consultant, MAMC, Hemophilia Advisor, Lok Nayak Hospital, Delhi), Prof. Tulika Seth, AIIMS, New Delhi, Dr. Nita Radhakrishnan, Associate Professor and Director of the Post- University of Child Health, Noida, Dr. Rohan Kolla, Novo Nordisk India, Mr. Mohit Saxena – Senior Marketing, Roche India Pvt. ltd. and Dr. Hitesh Muley, Pfizer. Additionally, prominent physicians, hematologists, physiotherapists, and hemophilia caregivers from various medical schools and hospitals across the country also participate. The event was supported by leading pharmaceutical companies – Pfizer, Roche, Novo Nordisk India Pvt. Ltd and Grifols. The federation has been the voice of the hemophilia community for 39 years since its inception in 1983. Through this initiative, it aims to engage with the Ministry of Health and other stakeholders regarding awareness , finding workable solutions and promoting comprehensive care of Hemophilia Patients at the local, regional and national levels. Remarkably, the integration of the Hemophilia Federation (India) into the Ministry of Health in the last four programs has been very successful as hemophilia has been recognized. Human blood is an essential part of human life and there are no substitutes. Access to safe blood is a life-saving measure. Considering the burden and cost of appropriate management and control measures, a comprehensive guideline on hemoglobinopathies (thalassemia, sickle cell anemia and other variants of anomie) has been prepared by the Government of India. Under the National Health Mission, the Government of India is providing financial support to the states to strengthen their health care systems including the blood disorder treatment system with the following tasks; • Coordination of Blood Cells with RBSK and Maternal Health Division for implementation of hemoglobinopathies guidelines.

• Ensure that the infrastructure needed to network services at different levels of health care is strengthened to ensure screening of children and pregnant mothers.

• Training of the required staff involved in the blood disorders program • Ensuring optimal care of all patients with thalassemia, sickle cell disease and hemophilia by setting up day reception structures for transfusion and infusion , followed up with the help of state health services.

• Provide financial support for obtaining medications such as iron chelation, AHF and other necessary medications in coordination with the state health department • Outreach programs for hemoglobinopathies and hemophilia are being organised.

• A national registry is being created which would be useful and an important tool for planning future patient services. About Hemophilia Hemophilia is a life-threatening genetic bleeding disorder. Even with a minor injury or cut, the blood of hemophilia patients does not clot normally due to the absence of clotting proteins called factors. If left untreated, recurrent and prolonged bleeding into joints and muscles can lead to permanent disability, and bleeding from sensitive organs can even lead to death. The only possible treatment is the infusion of life-saving drugs called anti-hemophilic factors (AHF), which are expensive and neither produced nor readily available in India. (1 unit of factor costs around Rs. 10-12 and at any episode of bleeding a person needs 500-2000 IU in a single dose which is equivalent to expenditure of Rs. 5000-Rs. 20000 on 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 more and more PWH and provide quality care, affordable treatment, educational and psychosocial support, and economic rehabilitation. So far, we have been able to identify over 25,000 hemophiliacs across the country out of an estimated 1.2 lac (ie 1 in 10,000 population). Image: Keynote guest at the ”Initiative on Hemophilia Care VI 2022” Hon’ble Shri Arjun Ram Meghwal, MoS (PA&Cul), GOI being moderated by Dr Shashikant Apte, VP (Medical), HFI PWR PWR

(This story has not been edited by the Devdiscourse team and is auto-generated from a syndicated feed.)

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