Ashok B Verma – A Tribute

A Tribute to Late Mr. Ashok B. Verma – Founder Of HFI

Our story goes back to three friends and a bleeding leg.

Mr. Ashok Verma, Mr. Suresh Gupta and Mr. Jitender Kapoor were classmates pursuing their BSc from Ramjas College in Delhi University. During his graduation years, Ashok suffered a leg injury leading to difficulty in walking. This injury led to a Hemophilia diagnosis.

Disaster struck when in 1979 Ashok suffered a severe bleed in his leg that soon turned out to be untreatable in India. Even as the family reeled under this shock, Ashok’s younger brother, a senior officer in the Indian Navy, had a chance encounter that changed the course of their lives.

Ashok’s brother met Prof. P. M. Mannucci, one of the world’s greatest experts on Hemophilia, on a flight. As their conversation turned to Ashok’s predicament, Professor Mannucci offered to treat Ashok in Italy at no cost.
The Verma family and Ashok’s friends rallied together to raise funds for Ashok’s treatment in Italy. Three months of extensive treatment saved his life, but his leg had to be amputated below the waist.

After his treatment in Italy, Ashok Verma came back as a man with a vision. He was ready to devote his life to the welfare of Hemophiliacs in India. With Professor Mannucci’s blessings and the complete support of his friends, Verma laid the foundation of Hemophilia Federation India.

Laying the Foundation

Verma had already established contact with a large number of Hemophilia patients across the country. This included the son of then Air Marshal Suresh Chand. He proposed the organization of a seminar-cum-clinic with an open invitation to all Hemophiliacs and doctors interested in the treatment of Hemophilia to come and participate.
The seminar was held on the 27th of November 1983 under a tree at the same place where the Lions Hospital now stands.

Attendees included:

1. Rev. Allan Tanner (U.K.), Chairman, World Federation of Hemophilia.
2. Prof. P.M. Mannucci (Italy), Chairman, International Hemophilia Training Centre, and Vice-President, World Federation of Hemophilia.
3. Dr. J. P. Allen (France)
4. Dr. B. Evans (U.S.A), Dental Surgeon.
5. Dr. A. Ahlberg (Sweden), Orthopedic Surgeon.

This seminar culminated with the decision to establish a federation for the welfare of all PwH. Mr Ashok Verma was recognised as the Founder of the organization. Mr Suresh Chand was made the first President and Mr Jitender Kapoor the first Chairman of the Hemophilia Federation India. The workings of the Constitution of HFI were drawn on the framework of the World Federation of Hemophilia (WFH).

Evolution/Milestones and Achievements

 

1980s: Beginnings

Hemophilia Federation India (HFI) was founded on November 24, 1983, in New Delhi, led by Mr. Ashok Bahadur Verma, a person with severe Hemophilia A, and supported by Prof. Mannucci and Rev Allen Tanner from the World Federation of Hemophilia. Prior to HFI’s formation, Hemophilia Society Kerala and Hemophilia Society Calcutta were existing. HFI initiated its journey with three chapters and 250 PWHs. Key medical figures like Dr. D.K.Bhattacharya, Dr. A. K.Basu, and Dr. Mamen Chandi joined the cause to enhance Hemophilia awareness and management.
 

1990s: Time to Think Globally & Act Locally

In the early 1990s, HFI concentrated on Hemophilia care and management, setting up blood banks and collaborating with AIMA Italy for importing Factor VIII & IX concentrates. Renowned medical personalities like Dr. Mamen Chandi, Dr. Deepika Mohanty, and Dr. V.P. Chowdhury supported HFI. Medical Advisory Board and international training centers were established. A significant breakthrough came in 1996 when Mr. Ashok Verma became the first Indian in WFH’s executive council. HFI collaborated with the Danish Hemophilia Society and Royal Free Hospital. The AIDS crisis deeply impacted the community.
 

2000s: Decade of Evolution

The DANIDA project ‘Living with Hemophilia’ during the 2000s elevated HFI’s work. Advocacy efforts, capacity building, safe blood products, and partnerships with medical institutions like CMCH and NIIM evolved. The CMCH, Vellore and NIIH at KEM Hospital, Bombay has been designated as International Hemophilia Training Centre. Many major surgeries of Hemophiliacs have since then been successfully conducted in CMCH, Vellore with free CFC support. Prenatal diagnosis and carrier detection facilities are now available at KEM Hospital, Hematology Department at AIIMS, PGIMER (Chandigarh), SGPGI (Lucknow), CMC (Vellore), Sir Gangaram Hospital (New Delhi) and CCMB (Hyderabad). The Silver Jubilee Year in 2008 marked a historical milestone. HFI received 100% tax exemption status under section 35AC of the Income Tax Act. The organization expanded to 87 chapters, driven by committed volunteers, medical support, and Mr. Ashok B. Verma’s vision. The movement sought to further its goals through government intervention and inclusion of Hemophilia in disability acts and health initiatives.

HFI’s journey began with a small group of chapters and PWHs in the 1980s, and over the decades, it evolved into a nationwide force for Hemophilia awareness, care, and management. The 1990s saw strategic partnerships and global exposure, while the 2000s brought comprehensive projects, partnerships with renowned institutions, and remarkable milestones like achieving tax exemption. Despite challenges, the organization’s dedication and visionary leadership by Mr. Ashok B. Verma facilitated its growth into a multi-faceted movement with a significant national presence.