HFI associates with health ministry to intensify hemophilia care in India

New Delhi: Hemophilia Federation (India) or HFI, an apex organization working on National level for the welfare of the ‘Persons with Hemophilia’ has handed over an eight-pointer appeal to the Ministry of Health and Family Welfare for a collective and comprehensive treatment and care of the patients.

HFI has associated with the ministry to initiate the country-level Hemophilia Care drive. Under the association, it has been conducting the program “Initiative on Hemophilia Care V- A sensitization program and the way forward, IHC-V” regularly. This time it is 5th in the series of programme which started in 2015.

Recently an event was organized to mark World Hemophilia Day which is held every year on 17th April World over in 140 countries. The event focused towards sensitization on Hemophilia for the policymakers both at the national and state level. The union health ministry 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.

Presenting his views on the need to address the requirement of the PwHs, Rtn. Wg. Cdr. (Retd.) S S Roy choudhury, 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 Hemophilia Patients 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 four programs, 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.

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 patients 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.