How it all began at Hemophilia Federation of India

The Hemophilia Federation of India was started in 1983 by the late Ashok Verma, who was himself a Hemophilia patient, to alleviate the sufferings of thousands of Hemophiliacs in the country. A small scale proprietor of a photo studio in Delhi, it was with great difficulty that Mr. Verma was able to avail of treatment in India for his condition.

After much research, he decided to travel to the Milan Hemophilia Center in Italy. Dr. Mannucci, who was then a professor in the department of Internal Medicine there, motivated Mr. Verma to start Hemophilia chapters in India; through which information about the disease could be shared with other Hemophiliacs in the country. At that time, the Hemophilia Society Kerala (formed in 1981 by Mr. George A Tharakan) and the Hemophilia Society Calcutta (formed in 1983) already existed but neither were active. The Delhi chapter, which Mr. Verma set up in 1987, became the first active chapter. With the three chapters combined having 250 PWHs, the HFI movement in the country slowly started taking shape.

Mr. Verma travelled through the country with the objective of meeting doctors, locating PWH families and motivating them to form a chapter in their city. His passion for the cause combined with his friendly nature helped him convince many Hemophiliacs to come together for the cause. This coming together of Hemophiliacs was happening against a background where the medical fraternity themselves were relatively less aware of the disorder. Yet, a few renowned medical personalities of that time (Dr. D.K.Bhattacharya, Dr. A. K.Basu, Dr. Monorama Bhargava, Dr. Nanu, Dr. Mamen Chandi, Dr. Jolly and few more) lent their support for the movement. Dr. Dinesh Jain was the first doctor sent to Italy for six-month training on Hemophilia management under the guidance of Prof. Mannucci.

On his return, in 1984-5, the Hopkins Laboratory of Bombay and Serum Institute of Pune started manufacturing Lyophilized Cryoprecipitate in 100/200 ml bottle available in 200 units. This was a big move. As this was the first therapeutic material available in India for the treatment of Hemophilia – though limited to patients with Hemophilia A only.

A great setback followed this big move four to five years later. In 1989, the HIV virus was located in a batch of lyophilized cryoprecipitate made by the Serum Institute (India) and the product was banned!

Steps to overcome this setup were taken in the early 1990s. As importing drugs from Italy (or elsewhere) was an expensive affair, the Calcutta chapter decided to set up a blood bank with component manufacturing unit of its own. This started functioning in 1993. With the help of Prof. Mannucci, Mr. Verma got in touch with AIMA Italy; a renowned pharmaceutical house specialized in manufacturing human plasma and serum derivative products. A team of HFI members headed by Mr. Verma went to Italy at the invitation from the company to see their factory and to gain knowledge about the product. Negotiating a good deal with the company, the team started importing Factor VIII & IX concentrates. Anti-Hemophilic Factor thus became available in India in small vials of 100, 200 and 500 units at Rs. 2 per unit, the cheapest in the world! This landmark achievement prompted many more doctors across the country to lend their support for the cause.

A Medical Advisory Board was soon formed. A number of doctors were sent overseas for training in Hemophilia management and diagnosis. Several seminars and workshops were regularly held in the country too.

In 1996, Mr. Verma was elected into the executive council of the World Federation of Hemophilia (WFH) in Dublin Congress. As the first Indian representative, he took part in a policy making body of an international stature for the development of PWHs across the world. Later he also became one of the Vice Presidents of WFH for the development of National Member Organizations for South-East Asia. Consequently, HFI and the Delhi chapter got twined with the Danish Hemophilia Society, Denmark and Royal Free Hospital, London respectively; and the Calcutta chapter received a remarkable project from WFH titled “Operation Improvement”.

This project was closed down in the late 1990s when AIDS hit the Hemophilia community. During this period, many unfortunate PWHs got infected with HIV and died untreated (as there was no treatment available for HIV/AIDS in India then).

In 1996, Mr. Verma visited Denmark in connection with the twining project. During this visit, the plight of the PWHs in India came into limelight. His efforts resulted in the Danish International Development Agency (DANIDA) sanctioning a one-year-pilot-project in collaboration with HFI to be implemented in HFI’s Kanpur and Pune chapters in 1996. This path breaking project aimed to raise the standards of PWHs in India. Suddenly, the doors to resolving many issues faced by Hemophiliacs opened. The project led to the expansion of a number of HFI’s activities too. From development of infrastructure, to better administration systems, to more effective lobbying skills and fundraising techniques, to training of doctors, physiotherapists and laboratory technicians.

During this period four regional offices – Calcutta, Delhi, Madras and Pune – were also established. HFI was successful in lobbying with the government in providing safe blood products, addressing disability related issues, generating grants from the Danish Embassy for economic rehabilitation of the PWH, and raising the stock of free medicines with the support of international donations and WFH.

The following year was very challenging due to the sudden demise of Mr. Verma and a chain of crisis followed. But following the footsteps of Mr. Verma, HFI revived itself by launching advocacy programmes with the government, mobilizing resources and rebuilding its image in the public and corporate sector.

Today, the CMCH, Vellore and NIIM at KEM Hospital, Bombay have been designated as International Hemophilia Training Centres. Prenatal diagnosis and carrier detection facilities are also available at KEM Hospital, Hematology Department at AIIMS, PGIMER (Chandigarh), SGPGI (Lucknow), CMC (Vellore), Sir Gangaram Hospital (New Delhi) and CCMB (Hyderabad).

The movement, which started from Mr. Verma’s kitchen with only 3-4 chapters in India, is now run from a four-story building in Delhi through 70 chapters.

There yet remains a lot more to be done. Statistics says that more than 75% of Hemophiliacs in India cannot even afford treatment. Many PWHs are yet to be diagnosed, yet others do not even manage to reach a nearby hospital for basic minimum treatment. There are many Hemophiliacs who still get treatment with whole blood transfusion and are not aware of the existence of factor concentrates. Many get infected with blood born viruses like HIV, HCV & HBV. Till date, no pharmaceutical companies manufacture AHF in India. Clearly, there’s a lot to be done till HFI realizes its vision of “Hemophilia without Disability, Children free of Pain.”

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Aadeep