- Contributed by Mr. Ujjal Roy - Regional Manager East

There is always an exciting story behind a success. Even a road accident can bring a positive impact in one’s life. Mr. Ashok Bahadur Verma, a person with hemophilia (PWH), Factor VIII deficiency, met an accident and got his right leg fractured while riding a scooter in a summer night in Sonepat, Haryana, his residential town, in 1975. Ashok had 4 brothers and 3 sisters and he was the second brother. His younger brother, Sanjay was also a PWH. At that time there was no proper knowledge and treatment available in India. Ashok moved from one hospital to another but all went in vain. For 5 long years he literally hobbled from pillar to post on his fractured, swollen up and extremely painful leg, looking for some form of treatment. Towards the end of the fifth year, in 1980, he came to know that a very prominent hematologist from Italy, Prof. P. M. Mannucci was visiting Chandigarh for a seminar. But Ashok could not meet him and instead sent his brother Sanjay for a consultancy. After going through his case history, Prof. Mannucci called Ashok to Italy for the treatment. Ashok went to Italy for his knee amputation in the year 1980. In passing time he somehow became very close to Ashok and tried to motivate him to form a group in India.

Ashok, with his one leg and heavy heart could not think of forming any kind of society in India, as he felt that such a mammoth task is not possible with so much limitation in movement. He was not in a mood to pay any heed to Mannucci’s word. He came back to India and started his own business. After a year when he again went to Italy for a second surgery, Mannucci left no stone unturned to pursue Ashok to form a hemophilia society for the greater benefit of all the person with hemophilia in India. An emotionally charged and motivated Ashok left Italy with his promise and later formed Hemophilia Federation (India) on 24th November 1983 in the premises of a hospital run by Lions Club in Delhi. On that eventful day Prof. Mannucci and Rev. Allen Tanner, then Chairman of World Federation of Hemophilia, were present with many other dignitaries.

Hemophilia Federation (India) HFI, got started from its registered office at S/178, Greater Kailash, Part – I, New Delhi – 1100 48. It was in fact the residence of Mr Verma, a joint property, where Ashok got a small portion with a kitchen, a bedroom, a store and a veranda. He used to run a Photo studio from that house as his only livelihood. HFI got a place in it – 6’ / 5’, a small store in the back with a table and a chair. But if the need is felt very strongly in the mind of a sufferer or a concerned person, the ways may be difficult but the jobs are done.

Mr. George A Tharakan, Secretary of Kerala chapter, Mr. Tarak Banerjee, a founder member of Calcutta Chapter, Mr. Ghanshyam Das Jhawar (a PWH with moderate F-VIII) the then Secretary of Calcutta chapter, Mr. Ashok Shah (a severe PWH from Pune), Mrs. Indira Venkatraman (a mother of a severe PWH) and Mr. Vijay Kaul (a PWH) witnessed the Foundation Day of HFI. After formation of HFI, Delhi chapter was the first chapter at local level formed under the guidance of HFI. With those 3 chapters having 250 numbers of PWHs, HFI started moving forward, with a primary objective: to locate more undiagnosed hemophiliacs in India. Ashok started traveling to different cities in India by train in sleeper class. His objective was to meet the doctors, locate the PWH families and motivate them to form a chapter in the city. Slowly and study chapters started forming one after another.

In fact, before HFI was formed, 2 more Societies at local level already existed Mr. George A Tharakan (himself a severe PWH with F-VIII deficiency) started the first Hemophilia Society Kerala chapter in India in 1981. He went to attend the World Congress of WFH in Madrid in 1980 and informed the WFH about the miserable conditions of the PWH in India.

On the other hand, Mr.Tarak Banerjee, based in Dhanbad, Bihar (now Jharkhand), was trying frantically to organize treatment for his younger brother Mr. Subhojit Banerjee, a severe PWH with F-VIII deficiency and in the process got in touch with Mrs. Britton of National Hemophilia Foundation, UK, through a journal. Mrs. Britton gave the address of George Tharakan and asked Tarak to contact him. A highly motivated Tarak, contacted his childhood friend Ujjal, who has just gone back from Delhi, leaving a job there in a MNC as medical representative, to settle in Calcutta. Then with effort of these two friends The Haemophilia Society Calcutta Chapter was formed on 11th September 1983 in a premise of a renowned blood bank headed by Dr. Dilip Bhattcharya, a hematologist and pioneer of modern blood banking in Calcutta with Plasma manufacturing facility.

At Present HFI has been able to locate nearly 14,000 PWHs through its 65 chapters spread all over India. It is still an on going program. Because, if we look at the statistics; the prevalence of this disorder is 1:10000 population, then approximately there should be 1 lac people affected with hemophilia in India. Out of them, nearly 60,000 likely to be of severe type. One can well imagine that a huge task is still left undone.

But what ever might be the effort put by the federation or chapters, things could not move ahead without active support from the medical fraternity right from the day 1. The medical fraternity is still not quite aware of its diagnosis and treatment protocol, it is a perpetual problem to diagnose as well as to provide treatment to these sufferers even now, mainly in the small town. But we were fortunate that in the mid 80s we came in touch with few good 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.

Dr. Dinesh Jain was the first doctor sent to Italy for a 6-month training on hemophilia management under Prof. Mannucci.

By that time, in 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. Some time, of course, Ashok, Tarak and few other people used to import Factor VIII & IX concentrate from USA. That was all. And that was the time when we came to know what home therapy means; the PWH can keep the AHF in their home and at the time of bleeding infuse to prevent further bleeding and disability. Calcutta chapter first introduced the home therapy and tried to develop self-infusion skill. But mostly, the PWHs used to receive their treatment with whole blood and sometime plasma. The treatment centers in India were also very few for hemophilia. However, in the First National Seminar on Hemophilia held in Calcutta in November’87 where a foreign medical team headed by Prof. Mannucci participated along with the national experts in the field of hemophilia care & management, the menace of HIV came into notice. And very unfortunately, 2 years after that seminar, in 1989, the HIV virus was found in a batch of lyophilized cryoprecipitate made by Serum Institute (India). The product was banned, and we were all thrown back to from where we started our movement.

Calcutta chapter decided to set up a blood bank with component manufacturing unit of its own in 1990, which started functioning in 1993.

Again Prof. Mannucci came to rescue. In 1990, Mr. Ashok Verma got in touch with AIMA of Italy, a renowned pharmaceutical house especially in the field of manufacturing human plasma and serum derivative products, through Prof. Mannucci.

Ashok, Mrs.Usha Parthasarathy from Madras chapter, a mother of a PWH who lost her elder son and maternal uncle, Ujjal, the Chief Coordinator of Calcutta chapter, Vikki, son of Mr. Jitendra Kapoor, a childhood friend of Ashok and a EC member of HFI and Mr.Vinod Khanna, a severe PWH from Delhi chapter went to Italy at the invitation from the company to see their factory and to gain product knowledge. HFI 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.

By that time we came in close contact with Dr. Mamen Chandi of CMCH, Vellore along with some of their very committed colleagues and Dr. Deepika Mohanty, Dr. Vijay Laxmi Ray, Dr. K. Ghosh, Dr. Chandra Viswanathan of KEM Hospital, Bombay, Dr. V.P. Chowdhury and others of AIIMS, New Delhi and many others came out in assistance of HFI to strengthen the care, treatment and diagnosis of hemophilia in India. A Medical Advisory Board of HFI formed. Many doctors were sent to International Hemophilia Training Centers of World Federation of Hemophilia in abroad for training in hemophilia management and diagnosis. Besides, there were seminars and workshops regularly held tied up with the AGM of HFI. In fact, in the early of 1990 decade, HFI had started an organized movement especially in the field of care & management of hemophilia in India.

4 Regional Secretaries as volunteer: Ujjal from east, Vinod from north, Usha from south and Anil from west, appointed to locate more undiagnosed hemophiliacs and establishing chapters in different cities in India. More chapters were established and many persons with hemophilia were registered within a year or so.

Mr. Ashok Verma was elected in the executive council of WFH in Dublin Congress in 1996 and that was the year of an achievement when Indian representative took part in policy making body of an international stature for the development of PWHs all over the world. Mr Verma became one of the Vice Presidents of WFH for the development of National Member Organisations for southeast Asia. In the meanwhile two major things had happened; HFI and Delhi chapter got twining with Danish Hemophilia Society, Denmark and Royal Free Hospital, London respectively and Calcutta chapter received a prestigious project of WFH called “Operation Improvement”. But by that time, sad enough, many unfortunate PWHs infected with HIV and as there was no treatment available for HIV/AIDS at that time in India, died untreated. The parents became frustrated, panicked and vindictive. The project “Operation Improvement” in Calcutta chapter closed down due to wrong leadership by that frustrated group.

Mr. Tarkel Anderson, a PWH himself like Mr. Ashok, is the President of Danish Hemophilia Society as well as an executive council member of WFH, came to India first time in 1995 to attend the HFI’s AGM held in Bangalore. His silent visit made a significant change in HFI after 2 years. Next year when Ashok went to Denmark in connection with the twining project, an interview was organized and huge publicity was made in both TV and print media. A cover story with a photo of Ashok on front page published in Denmark, got attention about the plight of PWHs in India. He had a detail discussion with the DHS committee members and the Health Minister of Denmark in regards to some developmental project in favour of PWHs of India. In that connection Danish International Development Agency or DANIDA launched a one-year-pilot-project in collaboration with HFI in Kanpur and Pune chapter in 1996.

A major breakthrough took place in 1998 in the history of hemophilia movement in India when HFI got a huge project for 4 years from DANIDA called “ Living with Hemophilia” aimed to raise the quality of life of PWHs in India. Though the project worked through 10 selected chapters but the activities and benefits reached to all the chapters. The volunteer Regional Secretary post was abolished and instead, 4 Regional Offices; Calcutta, Delhi, Madras and Pune were established run by qualified Managers called Regional Director with 1 project assistant.

The constitution was amended and passed in Patna AGM in 1999 to create Regional Council Chairman and Regional Council Secretary, to be elected by the chapters in the region as a local representative subsequently inducted in the EC of HFI as ex-officio member.

The project had many facets. Right from the infrastructure changes in HFI’s and chapter’s administration level, developing 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, psycho-social-support to the PWHs and their family members, developing self reliance skill through camps, developing leadership quality and empowerment of carrier women through formation of youth and women groups at chapter level, developing information and awareness materials, support to prevention of hemophilia through carrier detection and pre-natal diagnosis, economic rehabilitation to the needy PWH and their family members and so on.

In the meanwhile, HFI has successfully lobbied with the government for support in the field of blood safety and safe blood products, disability, generating grant for economic rehabilitation from Danish embassy, raising stock of free medicine from international donation and support from WFH. Besides, HFI has started publishing a quarterly Newsletter in 10 languages for the PWHs and their family, giving educational scholarship to the children with hemophilia to encourage in study, net working with some international NGOs for support to the needy PWHs, providing assistance the HIV positive, PWHN, CWH and inhibitors through its 4 regional offices and chapters.

We are fortunate that Dr. Alok Srivastava has been nominated Chairman of International Hemophilia Training Centre(IHTC). CMCH, Vellore and KEM Hospital, Bombay has been designated as IHTC. Many major surgeries in hemophilia have been successfully conducted in CMCH, Vellore with free AHF support. The project extended for another year and then a second phase of the DANIDA project started in 2004 for 3 years with an aim of consolidation and sustainability of the HFI and chapters. 20 basic chapters were selected through gradation system to be supported by the project.

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 65 chapters under its service. This has been possible because of its very strong and dedicated volunteers base and support from the medical fraternity and a visionary like Mr. Asohk Bahadur Verma.

But there is no place for any complacency. The statistic says that more than 75% of hemophilia population just cannot even afford any treatment with AHF. There are many affected persons who are yet to be diagnosed. There are many hemophiliacs who cannot even reach to a nearby hospital for a minimum basic treatment. There are many hemophiliacs who still get treatment with whole blood transfusion and do not aware of the existence of factor concentrates. Many unfortunate PWHs got infected with the blood born viruses like HIV, HCV & HBV. Got inhibitor. No pharmaceutical companies manufacture AHF in India. No support from the Ministry of Health of Government of India. Fully dependent on the MNC for AHF which is inadequately supplied at higher price.

If we are truly concern for the PWHs those who are still undiagnosed, languishing with pain, and who do not have any means to get basic treatment, we shall have to work very passionately. We shall have to go a long way to strengthen our movement for the hemophilia community in India. We want to see our vision; “Hemophilia without Disability, Children free of Pain” become a reality.