HFI presents its 8-pointer appeal to the government and requests it to address to the plight of Hemophilia patients, who lead a painful life with various joint disabilities and the scenario is so worst that most of the patients die due to lack of medicines, or treatments.

: Hemophilia Federation (India) (HFI), an apex organization working on National level for the welfare of the Persons with Hemophilia (PwH), associated with the Ministry of Health &Family Welfare, GoI to initiate the country-level Hemophilia Care drive. HFI also handed over an eight-pointer appeal to the ministry for a collective and comprehensive treatment and care of the PwHs.

HFI in association with Ministry of Health & Family Welfare, Government of India has been conducting the program “Initiative on Hemophilia Care V– A sensitization program and the way forward, IHC-V” regularly. This time it is 5^th in the series of program which started in 2015.

The event focused towards sensitization on Hemophilia for the policymakers both at the national and state level. The Ministry of Health & Family Welfare, GOI had invited all the State Health Secretaries, Mission Directors and Nodal Officers involved in the care of patients with Hemophilia and Hemoglobinopathies. In addition, prominent doctors, hematologists, physiotherapists and hemophilia caregivers from various medical colleges and hospitals of the country also attended the event.

Speaking on the need to intensify the Hemophilia care, Mrs. Vinita Srivastava, National Consultant, Blood Cell, NHM, Ministry of Health & Family Welfare, GoI, said, “The ministry has initiated the training programs to address the concerns of Hemophilia patients in the states. The ministry is also consulting with the respective state authorities to establish the Hemophilia care centres.” She further added, “It is the states who have to roll out the programs on ground. And therefore, the ministry is in constant contact with its state counterpart to adhere to the national mission’s guidelines.”

Presenting his views on the need to address the requirement of the PwHs, Rtn. Wg. Cdr. (Retd.) S S Roychoudhury, CEO, HFI, said, “As per an international report, almost one person in every ten thousand is hemophilic. By this record, there are more than one 1,33,000 persons with Hemophilia in India. Unfortunately, due to lack of adequate infrastructure, we have been able to identify only 22,000 such PwHs so far. Also, those who have been identified, are not getting adequate treatment and medicines that are required for proper care, as per the World Federation of Hemophilia. We are hopeful that the Government, its Ministry, and the respective departments would act fast to address this situation. In all the cases, HFI is ready and willing to cooperate with the government, in all possible manners”

The federation has been raising the voice of Hemophilia Community from the last 36 years since its inception in 1983. Through this program, it aims to engage with the Health Ministry to motivate commitment at the highest level for the solution, and promote comprehensive care of Hemophilia patients at local, regional and national levels.

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,Italy 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 22,000 Children & Persons with Hemophilia (C/PwHs). However, in reality, this figure should be closer to 1.3 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.

Remarkably, the close association of Hemophilia Federation (India) with the Health Ministry in the last fourprograms, IHC I, IHC II, IHC III, and IHC IV, was highly successful as Hemophilia could receive due recognition. 3 years back, it got included in the Disabilities Act 2016 and Flexi Pool Fund of National Health Mission. The Ministry has also set up 198 Blood Separation Units across the country to derive AHF-VIII from Plasma component.

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.