National Hemophilia Management Summit adapting to change - Disability to Ability in changing world

Keeping in mind the COVID-19 pandemic in the country, the summit was held virtually in collaboration with patients, doctors and policymakers of India with support from Roche.

The summit presents a major opportunity for valuable exchange of information between the representatives of the public health and the Hemophilia Community of the country and will be streamed on YT and FB. The message that is being taken across to the public this year is "Adapting to Change - from Disability to Ability."

Celebrating with the global community, the summit was addressed by Hon'ble Aparajita Sarangi, Member of Parliament, Constituency - Bhubaneswar, Government of India. Other eminent guests speaking at the occasion were:

* Dr Sanjay Kant Prasad (Deputy Chief Commissioner, Disabilities, Ministry of Social Justice & Empowerment, GOI),

* Vinita Srivastava (National Sr. Consultant & Coordinator, Blood Cell - NHM, MoH&FW),

* Dr Tulika Seth (Professor, AIIMS, New Delhi)

* Deepa Malik (Paralympian & Arjuna Awardee), and

* Armaan Ali (Executive Director, NCPEDP)

The summit began with a brief address by Mukesh Garodia, President, HFI, "Although Hemophilia is indicated as a disability in the RPWD Act 2016, it has not been classified as a benchmark disability. This has created numerous problems, such as the inability to avail reservation in employment, further creating severe hardships in patients afflicted with this disease. On another front, in the battle against hemophilia, diagnosis of hemophilia is highly inefficient and error prone with more than 80 per cent of the prospective population remaining undiagnosed. This is further validated when out of a possible 1.3 lakh hemophiliacs in India, only 25000 are certified as hemophiliacs. To address these 2 critical issues, HFI draws attention to this unmet need from time to time on various platforms."

Currently, effective, and high quality AHF must be purchased from pharmaceutical companies based in foreign countries leading to high costs and a complicated procurement procedure. The availability of AHF in government hospitals is limited at best, with many institutions reporting complete utilization of a year's supply of AHF in just a month. HFI addresses the lack of factor to some extent by acquiring factors through donations from the World Federation of Hemophilia and then distributing it freely to 78 Hemophilia Treatment Centers set up in government hospitals across the country. However, this aid from the HFI-WFH association does not completely resolve the issue, making it obligatory for HFI to keep rallying around with its patient community for the improvement in treatment facilities, and push for manufacturing of these medicines locally in the country.

This summit was extensively supported by India's leading pharma company, Roche India Pvt. Ltd. Commenting on the occasion, Simpson V Emmanuel, MD, Roche Pharma, said, "The quality of life of people with Hemophilia can be significantly improved through increased awareness, early diagnosis and adopting standards of care. There is an urgent need to increase awareness and diagnosis of people with Hemophilia as a large number of the prospective population has remained undiagnosed. Early diagnosis can lead to better disease management and reduced disability. When it comes to management, prophylaxis remains the standard of care to treat and prevent bleeds in people with Hemophilia. Globally, prophylaxis has proven to be highly effective in reducing bleeding, long-term complications, disability and reduced need for orthopaedic surgery, thus significantly improving the quality of life of people with Hemophilia."

Established in 1983, Hemophilia Federation (India, HFI) remains the only umbrella organization that, till date, has continued to provide comprehensive care to the hemophilia community. Founded and run by Persons with Hemophilia (PwH) with support from the medical community, HFI provides a wide variety of services through its network of 87 chapters across India. HFI represents India as a National Member Organization at the World Federation of Hemophilia based in Canada. It has contributed greatly to create awareness amongst patients and organize treatment facilities throughout the country.

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