TIO New Delhi
Hemophilia Federation (India) (HFI), an apex organization working on a mass level for the welfare of the Persons with Hemophilia (PwH) in the country, has associated with the Gandhi Medical College, Bhopal to initiate the country-level Hemophilia Care drive.HemophiliaFederation(India) is organizing a National Hemophilia Awareness Programme(NHAP) on 16thSeptember 2023 at Hotel RK Regency-Sawan Nagar, Lalghati, Bhopal.
The event focuses towards sensitization on Hemophilia for the policymakers.The Hon’ble Sh. Viswas Kailash Sarang, (Minister of Medical Education & Gas Rahat Department, Government of Madhya Pradesh), has graciously accepted the invitation to preside as the Chief Guest for the occasion. The organization was honored to have distinguished bureaucrats from the Department of Medical Education & Public Health, Government of Madhya Pradesh, such as Dr. Sudam P Khade IAS, who serves as the Commissioner of Health and holds the position of Secretary, Dr. A K Shrivastav, the Director, and Caralyn Khongwar Deshmukh IAS, as our esteemed guests.
During the event, several experts shared valuable insights on raising awareness about Hemophilia. Notably, HFI acknowledged and commended the exemplary doctors from GMC Bhopal, namely Dr. Salil Bhargav, the Dean of GMC-Bhopal, Dr. Ashish Gohia, the Medical Superintendent of Hamidia Hospital associated with GMC-Bhopal, and Dr. V.K. Bhardwaj, the former Professor and Head of the Pathology Department at GMC-Bhopal.
Additionally, HFI was privileged to have Dr. Cecil Ross,(VP Medical, HFI), Dr. R K Nigam(Professor and Head of Pathology, GMC Bhopal), Dr. Varun Bafna(Hematologist from Super Star Specialty Hospital, Kolhapur), and Dr. Neeraj Sidharthan(Professor and Head of Hematology at AIMS Cochin), as distinguished speakers who conducted technical sessions on Hemophilia.
There would be a gathering of more than 150 participants from PAN India from HFI’s 91 chapters for this program. NHAP is an important initiative that can help improve the quality of care for Hemophilia patients and increase their awareness. By focusing on education, awareness, and capacity building for key opinion leaders(KOLs), NHAP can help to promote best practices, advocate for new and emerging treatmentregimens, and increase the use of newer treatment products and non-factor replacement therapies.
Specifically, NHAP can provide patients and their representatives with information on the current scenario and the best practices in Hemophilia Care. This in turn enables them to get best solutions on how to influence policies on procurement and ensure that Hemophilia patients have access to the treatments they need. This can be particularly important in regions where access to healthcare resources is limited or where policies may not adequately address the needs of Hemophilia patients.
Additionally, HFI’s National representation can help to foster a sense of community among Hemophilia patients and their chapters. By connecting patients from different regions, NHAP creates a support network that allows them to share their experiences, learn from one another, and support those going through similar challenges. The National Hemophilia Awareness Program (NHAP) is an important national capacity-building event that highlights the best possible care and gaps within the states and leverage policies.
The status of PwHs in India
The Hemophilia Patients in the country are suffering badly just because of the inadequate system that is in practice. Hemophilia is a lifelong and incurable disorder which can only be managed by the use of certain medicines called Anti Hemophilia Factors or in short AHFs. Due to the lack of manufacturing facilities in India, these medicines are imported from developed countries like USA, Germany, and Canada and so they are very expensive.
Moreover, as these medicines are mostly unavailable in almost all the hospitals, many of the Hemophilia patients lead a painful life with various joint disabilities. The worst scenario even paints a more grim picture as most of the Hemophilia patients die due to the absence of medicines, or treatment.
So far, Hemophilia Federation (India) has identified over 28,900 Children & Persons with Hemophilia (C/PwHs). However, in reality, this figure should be closer to 1.4 lac considering the population of India. The identification and diagnosis of the remaining sufferers can only be possible if there are enough trained Hemophilia doctors and testing facilities.
A Study by the World Federation of Hemophilia.
According to a study conducted by the World Federation of Hemophilia (Annual Global Survey), almost 50 percent of the world’s Hemophilia population lives in India and almost 70 percent of PwH do not have adequate knowledge or access to treatment. The risk of death from a lack of basic knowledge and untreated Hemophilia is very high.
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, recurrent and prolonged bleeding into joints and muscles can lead to permanent disability and bleeding from the sensitive organs can lead even to death. The only possible treatment is 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 91 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 28,900 hemophiliacs across the country out of estimated 1.4 lacs (i.e. 1 in every 10,000 population).
