Foundaton Days

Mr. Ashok Verma, Mr. Suresh Gupta and Mr. Jitender Kapoor were all classmates till the completion of B.Sc graduation from Ramjas College, Delhi University. Mr. Ashok Verma was having bandage on his leg and had problem in walking too. Later on this was diagnosed as Hemophilia.

Ashok and his family used to stay in Sadar area and later in the 1960s, he shifted to Sonepat.

It was sometime during 1979, Ashok had severe bleed in his leg and it was untreatable in India.

As providence would have it, Ashok’s younger brother, who was a senior Officer in Indian Navy, met Prof. P. M. Mannucci (Italy) in a flight, when he conveyed the problem of Ashok. Prof. Mannucci offered to treat him in Italy free of cost, but other expenses had to be borne by Ashok. The Verma family and his friends collected funds and made it possible to send Ashok for treatment to Italy. He stayed there for 3 months and the leg below knee was amputated. It is during this time, Prof. Mannucci suggested to Ashok to work for the cause of Hemophilia, as they may not be as lucky as he was. This paved the way for forming of a Hemophilia Federation in India. Ashok discussed this with his friends and got full cooperation in every respect. He was already in touch with various Hemophiliacs across this country including the son of Air Marshal Suresh Chand. As this unfolded, one day Ashok came with a proposition to hold a Seminar-cum-Clinic in Delhi and a call was given to all Hemophiliacs and doctors interested in the treatment of Hemophilia to come and participate in the Seminar.

The Seminar was attended by:-

  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.

During this Seminar, where large number of Hemophiliacs and well-wishers attended, it was decided to establish a Federation. Mr. Suresh Chand was the first President and Mr. Jitender Kapoor was the first Chairman. The Constitution was drawn on the lines of the WFH at that time. In those days, the WFH had two posts of the President and Chairman - the President being the notional head and the Chairman being the working head.

The first Seminar-cum-Clinic was held on the very plot where the Lions Hospital is situated. In those days, this plot was barracks – having three sides’ small rooms and in the Centre a Court yard – where, under a tree, this Seminar was held on Sunday, the 27th of November 1983.

Mrs. Indira Venkataraman also played the pivotal role of offering types of support in the capacity of Assistant to Ashok Verma -  visiting Government offices on regular basis, writing letters to various hemophiliacs,  arranging funds for meeting the then expenses, etc., though she was a working lady at that time.

It would not be out of place to mention that in the formative year of the Federation Mr. Jitender Kapoor travelled with Ashok to various nooks and corners of the Country.

1980s: Beginnings

Hemophilia Federation India (HFI) was established on 24th November 1983 at New Delhi with the initiative of Mr Ashok Bahadur Verma, a small business man born with sever Hemophilia A., in the presence of Prof. Mannucci and Rev Allen Tanner, then Chairman of World Federation of Hemophilia and other PWH and family members from India.

Before the formation of HFI, Hemophilia Society Kerala (formed in 1981 by Mr. George A Tharakan), and Hemophilia Society Calcutta (11 Sept 1983) were existing. Delhi chapter was the first chapter at local level formed in 1987 started functioning. With those three chapters having 250 numbers of PWHs, HFI started moving forward. Mr Verma travelled around the country with the objectives of meeting the doctors, locate the PWH families and motivate them to form a chapter in each city.

During those days the medical fraternity was relatively less aware of Hemophilia diagnosis and treatment protocol. In the mid 80s few kind hearted renowned medical personalities of India like Dr. D.K.Bhattacharya, Dr. A. K.Basu, Dr. Monorama Bhargava, Dr. Nanu, Dr. Mamen Chandi, Dr. Jolly and few more came forward to assist HFI. Dr. Dinesh Jain was the first doctor sent to Italy for a-6-month training on Hemophilia management under the guidance of Prof. Mannucci.

Between 1984-5, Hopkins Laboratory of Bombay and Serum Institute of Pune started manufacturing Lyophilized Cryoprecipitate in 100/200 ml bottle available in 200 units. That was the first therapeutic material available in India for the treatment of Hemophilia A only. Calcutta chapter first introduced the home therapy and tried to develop self-infusion skill.

The First National Seminar on Hemophilia held in Calcutta in November 1987 where a foreign medical team headed by Prof. Mannucci participated along with the national experts in the field of Hemophilia care & management.

But unfortunately, in 1989, HIV virus was located in a batch of lyophilized cryoprecipitate made by Serum Institute (India) and the product was banned. It was a great setback for HFI.

1990s: Time to Think Globally & Act Locally

In early 1990s, HFI started an organized movement especially in the field of care & management of Hemophilia in India. Calcutta chapter set up a blood bank with component manufacturing unit of its own, which started functioning in 1993. With the help of Prof Mannucci, Mr. Ashok 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 Ashok Verma went to Italy at the invitation from the company to see their factory and to gain product knowledge. The team managed the best negotiation with the company and started importing Factor VIII & IX concentrates, a high purity product by solvent detergent and heat-treated method. The AHF became available in India in small vial of 100, 200 & 500 units @ Rs.2/- per unit, the cheapest in the world, which perfectly suited the pockets of a fair number of Indian urban Hemophilia population.

Dr. Mamen Chandi of CMC Vellore along with some of his committed colleagues, Dr. Deepika Mohanty, Dr. Vijay Laxmi Ray, Dr. K. Ghosh, Dr. Chandra Viswanathan of KEM Hospital, Bombay, Dr. V.P. Chowdhury and team from AIIMS, New Delhi and many other doctors came out in assistance of HFI to strengthen the care, treatment and diagnosis of Hemophilia in India.

A Medical Advisory Board was formed. A number of doctors were sent to International Hemophilia Training Centers of World Federation of Hemophilia overseas for training in Hemophilia management and diagnosis. Besides, several seminars and workshops were regularly held along with the AGM of HFI.

In 1996, Mr. Ashok Verma was elected in the executive council of WFH in Dublin Congress. As the first Indian representative, he took part in 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 Delhi chapter got twined with Danish Hemophilia Society, Denmark and Royal Free Hospital, London respectively and Calcutta chapter received a remarkable project from WFH titled “Operation Improvement”.

AIDS hits Hemophilia community : During this period, many unfortunate PWHs got infected with HIV and as there was no treatment available for HIV/AIDS in India, died untreated. The parents were frustrated and panicked; the project “Operation Improvement” in Calcutta chapter was closed down.

Publicity in Denmark : Mr. Tarkel Anderson, a PWH and then President of Danish Hemophilia Society (DHS) who was also an executive council member of WFH, came to India in 1995 to attend the HFI’s AGM held in Bangalore. His silent visit brought significant changes in HFI in the following years. During Mr Ashok’s visit to Denmark in connection with the twining project, an interview was organized and a huge publicity was made in both TV and print media. A cover story with his photo was published in the front page of newspapers in Denmark, through which the plights of the PWH of India came into limelight. He also had a detail discussion with the DHS committee members and the Health Minister of Denmark regarding some developmental project in favour of PWHs of India. As a result, the Danish International Development Agency (DANIDA) sanctioned a one-year-pilot-project in collaboration with HFI which was implemented in Kanpur and Pune chapter in 1996.

In the year 1998, again a major breakthrough took place when HFI got a project from DANIDA, “Living with Hemophilia” for a period of 4 years, which aimed to raise the quality of life of PWHs in India.

Activities expand : The project changed various facets of HFI; like development of infrastructure both in HFI and chapter level, administration system, lobbying skill and fund raising technique, training of doctors, physiotherapists, laboratory technicians in the premiere health institute in India & abroad in Hemophilia diagnosis and management.

The project launched several activities such as providing psycho-social support to the PWHs and their family members, developing self reliance and leadership skills through camps, empowering carrier women through formation of youth and women groups at chapter level, increasing public awareness on prevention of Hemophilia through carrier detection and pre-natal diagnosis, economic rehabilitation to the needy PWH and their family members etc.

During this period 4 Regional Offices; Calcutta, Delhi, Madras and Pune were also established. In 1999, at Patna AGM, the Constitution of HFI was amended and passed. The Regional Council Chairmen and Secretaries were elected by the chapters as local representatives; subsequently they were inducted to the Executive Council of HFI as ex-officio members.

HFI was successful in lobbying with the government in providing safe blood products, addressing disability related issues, generating grant from Danish Embassy for economic rehabilitation of the PWH, raising stock of free medicine with the support of international donation and WFH.

2000s: Decade of Evolution

Dr. Alok Srivastava was nominated as Chairman of International Hemophilia Training Centre (IHTC).

The second phase of the DANIDA project “Living with Hemophilia” started in 2004 which took HFI to greater heights, especially in capacity building of the chapters.

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

The CMCH, Vellore and NIIM at KEM Hospital, Bombay has been designated as International Hemophilia Training Centre. Many major surgeries of Hemophiliacs have been successfully conducted in CMCH, Vellore with free AHF 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 year 2008 was historical in the long journey of HFI as it marked the Silver Jubilee Year. In November, HFI celebrated its 25th Anniversary at the FICCI auditorium in New Delhi. The chief guest, Dr. Anbumani Ramadoss, the then Union Minister (Health and Family Welfare) and Mr Robert Leung representative of the World Federation of Hemophilia were present at the event who assured all possible help to ease the problems of Hemophiliacs in the country.

It is a matter of great satisfaction for HFI that after constant interaction and follow-ups with Central Board of Direct Taxes (CBDT), Ministry of Finance, Government of India, we have been able to obtain the status of giving 100% tax exemption to our donors under section 35AC of Income Tax Act, 1961.

National Youth Forum is taking shape as the regional youth leaders have taken steps in motivating the youths of their respective regions.

The movement, which started from the kitchen of Mr. Ashok Verma with only 3-4 chapters in India, has now been settled in a 4 story building in New Delhi having 87 chapters under its service. This has been possible because of its very strong and dedicated volunteers, support from the medical fraternity and a visionary like Mr. Ashok B. Verma.

In realizing our vision “Hemophilia without Disability, Children free of Pain”, we need to put more efforts and seek intervention of the government of India to include Hemophilia under Persons with Disability Act 1995 and National Health Mission.

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

Mr. Ashok Bahadur Verma - founder of the Hemophilia Federation (India), was the leading light of the Hemophilia movement in India. Under his stewardship, HFI grew into an organization of 68 Hemophilia societies all over India. It is because of him that today HFI holds the distinction of being not only the sole voice of people with Hemophilia in India but also an organization managed by the sufferers of this disorder themselves.

By virtue of his affable and gregarious nature he won many friends for persons with Hemophilia, both in India and abroad. He had a vision and commitment to the cause that was second to none. His passion and zeal to bring management and treatment of Hemophilia within easy reach of PWH in India was appreciated across the Hemophilia world. These brought rich dividends to HFI in terms of treatment, care systems and infrastructure to run self-help organization as large as HFI.

Ashok B. Verma (1942 – 2004)

The Hemophilia movement in India shall remain forever indebted to this one man whose zest for life, strength of character, determination and the will to make things happen, despite personal hardship, changed the lives of thousands of persons with Hemophilia for the better. Though he had received no formal business education he very ably steered HFI for almost the last two decades, not just as a volunteer but also as an employee, when he made a conscious decision to close his private business (a small photo studio) to concentrate solely on Hemophilia movement in India.

His personal belief was that lack of formal education is not a deterrent to a man’s success. His life bears testimony to his belief.

  • "My path was lonely, long and bare, but friends joined in, we learnt to care
  • The sharing made our journey bright; our road’s less traveled but it is right
  • Now I say “adieu” and not goodbye, Farewells are for others, not you and I"
  • “The best way to find yourself is to lose yourself in the service of others” – Mahatma Gandhi