About
Hemophilia Society Bihar Chapter (HSBC) was established in the year 1986. It is registered under society registration act 1860.It consisted of a small group of committed individuals who wanted to improve the living conditions of PWH (Persons with Hemophilia) in Bihar. The State of Bihar has six medical colleges, 38 district hospitals, Medical facilities for hemophilia patients are not available at all these centres. Moreover low awareness of the disorder and non-availability of Anti Hemophilic Factors (AHF) has impeded the availability of proper and timely treatment to the PWH. HSBC therefore has strengthened the existing Health Care System of Bihar for all PWH and took on the responsibility of locating PWH, providing information, treatment and care to PWH in Bihar. It also considers carrying on advocacy activities as one of its important tasks. All the registered PWH who now receive treatment support and care directly benefit from HSBC for these services. HSBC holds free Education interaction camps. It has also held physiotherapy camps, camps for children and youth and awareness generation camps.
To cite an example, due to its organizational strength, HSBC has received accolades from Sh. Shatrughan Sinha, former Union Health Minister and presently M.P, who is the chief Patron of HSBC. And because of his support the first stand alone & exclusive Hemophilia Hospital (New Gardiner Road Govt Hospital campus, Income Tax Crossing, Patna-1) not only in India but in the whole of SAARC countries has also been constructed. The government of Bihar has declared this hospital as super specialties hospital for hemophiliacs.
WHO states that on an average every male in a population of 10,000 would be a sufferer of Hemophilia. The population of Bihar is 9 crore as per the last census, so the estimated number of pwh in the state would be 9000. Since the disorder is genetically linked, consanguineous marriages in certain sections of the society lead to a high prevalence amongst those members of these communities. Hemophilia Society Bihar has been able to identify 500 members by its own means. Of these members around 300 are disabled and are unable to support themselves. Children below 10 years who constitute 50% of the total membership are unable to attend regular school because of frequent bleeds and the survival rate is greatly reduced.
Cause
Children are the most important segment of our society. Sometimes nature is not kind with them. Some children are born with some genetic disorders and have to live with it. One such condition is Hemophilia where the child has uncontrolled bleeds mostly into joints. This is because their blood does not clot/coagulate. The treatment is fortunately very much available but very expensive and hence beyond the reach of thousands of parents. Lack of treatment means unbearable pain, joint damage & physical disability.
In India (unlike the developed world) most of these children have to face disabilities in their childhood. They drop out of the schools, get stigmatized and become life long dependents.
BUT ALL THIS IS PREVENTABLE.
If the awareness and treatment are made accessible and affordable a child will not be disabled & can receive education in schools & colleges and contribute to the betterment of our society and country.
Magnitude of the problem:
There should be over 1 lakh (one hundred thousand) people affected with hemophilia in India. At least double of this are Carriers (females) who carry the gene. This estimate is based on the WHO stated prevalence rate of 1 in every 10,000 population irrespective of caste, creed, religion or place. World Federation of Hemophilia- an affiliate of WHO also bases its statistics on this ratio.
However, due to lack of awareness and diagnosis in most parts of the country people are not diagnosed. Only 10% are diagnosed. More than 90% cannot afford the prohibitive cost of medicines which is produced from human blood. Majority of the detected cases are already physically challenged which could have been prevented.
Children drop out of the schools due to pain and insecure feeling. About 8% of the people already diagnosed as having hemophilia have contracted fatal viral infections due to frequent transfusions of unscreened blood. About 30% are estimated to be infected with Hepatitis.
The fortunate thing is that treatment is available, though expensive. If awareness and treatment are accessible timely people can lead a near normal life and can contribute to the society as healthy citizens as happens the developed and several developing countries.
Let us work together for prevention of disabilities.
Let us help the new born and the very young so that they can lead a normal life.
Mission & vision
HSBC Vision
Total Hemophilia Care within reach of all PWH
HSBC Mission focuses on :
Education & Awareness about Hemophilia, its impact and prevention. Encourage the environment to prevent HIV/AIDS, Hepatitis B & C in persons having hemophilia. Prevention of disability in such persons.
Advocacy for safer, ethical and free Hemophilia Care. Focusing on the need and bringing a positive change in the attitude of the government authorities and having them recognize the need of providing Hemophilia Care.
Support partnerships in making HSBC vision a reality by 2015.
Youth empowerment and making them independent.
people behind
Dr Subodh Kumar Sinha, MBBS is associated with Hemophilia Society Bihar Chapter since 1990. Former Chief medical officer of Bihar State Blood Bank, PMCH, Patna and presently director of Blood Bank, Mahavir cancer Institute, Patna – 2. He is President of Hemophilia Society Bihar Chapter and Director (Medical) Hemophilia Hospital, Patna
Dr Ajit Kumar Varma MS (Ortho), DNB (Physical Rehabilitation), Physiatrist is associated with Hemophilia Society Bihar Chapter since 1992. He is Head of the Department, Physical Medicine and Rehabilitation, PMCH, Patna. He is Chairman Medical Advisory Board, Hemophilia Hospital and was President of Hemophilia Society Bihar Chapter. He was also President (2009 – 2011) of All India Physical Medicine and Rehabilitation Association.
Dr U. P. Sinha MBBS is associated with Hemophilia Society Bihar Chapter since 1990.
He is Chief Medical Officer of Bihar State Blood Bank, PMCH, Patna. He is Vice – President of Hemophilia Society Bihar Chapter.
Dr Deepak Kumar Singh MD (Medicine), MD (Bio – Physics), DNB (Gastro) is associated with Hemophilia Society Bihar Chapter since 1987. He is Chief consultant doctor of Hemophilia Society Bihar Chapter. He is Vice – President of Hemophilia Society Bihar Chapter and publisher of Hemophilia Medical Bulletin.
Mr Pradeep Gupta, B.Sc, LLB is associated with Hemophilia Society Bihar Chapter since 1998. He is Vice – President of Hemophilia Society Bihar Chapter and also Director (Admin) Hemophilia Hospital, Patna. He was APS to Union Health Minister (2003-04).
Mr Kumar Shailendra MBA (Finance), M.Com, LLB, Certificate in Export Marketing An academician and legal consultant is associated with Hemophilia Society Bihar Chapter since 1986. He is General Secretary of Hemophilia Society Bihar Chapter. He was executive member of Hemophilia Federation (India), New Delhi from 1999 to 2001 and presently also EC member of HFI. He is founder executive member of Society for Hemophilia Care, New Delhi. He participated in world congress of Hemophilia at Hague, Netherlands in 1998. His abstract was selected for World Congress of Hemophilia, Spain in 2002. He was founder editor of Hemophilia Darpan.
Er Arun Kumar B.Sc (engineering) is associated with Hemophilia Society Bihar Chapter since 1986. He is Asstt. Engineer in Govt of Bihar. He is Joint Secretary of Hemophilia Society Bihar Chapter and publisher of Hemophilia Darpan.
Dr Prafull Kumar M.Com, Ph.D is associated with Hemophilia Society Bihar Chapter since 1994. He is Asstt Secretary of Hemophilia Society Bihar Chapter. He was 1st Chairman of Regional Council (East), Hemophilia Federation (India), New Delhi.
Dr (Mrs.) Nilam Sahay MBBS is associated with Hemophilia Society Bihar Chapter since 1995. She is hemophilia expert doctor and presently treating hemophiliacs at Hemophilia Hospital, Patna. She is founder editor of Hemophilia Medical Bulletin.
Mr Ajay Kumar Thakur an advocate at Patna High court is associated with Hemophilia Society Bihar Chapter since 1998. He is executive member of Hemophilia Society Bihar Chapter.
Mr Madan Singh, Jr Engineer is associated with Hemophilia Society Bihar Chapter since 1990. He is Executive member of Hemophilia Society Bihar Chapter.
Mr Shailendra Suman is associated with Hemophilia Society Bihar Chapter since 1994.
He is Coordinator of Youth Group of Hemophilia Society Bihar Chapter.
Mr Chandan Kumar is associated with Hemophilia Society Bihar Chapter since 1996. Presently studying at Engineering College, Patna. He is executive member of hemophilia Society Bihar Chapter.
Our Team (Supporter)
Well-wishers / Supporter / Partner / Associate
Ms Hema Malini, Hon’ble M.P and noted film actress
Ms Sabana Azami Hon’ble M.P and noted film actress
Mr Rajeev Sinha, Administrator, UNICEF, Bihar
Mr Sanjay Kumar Singh, DM, Patma
Mr Prem Ranjan Patel, MLA, Bihar
Mr Manoj Tiwari, Noted film actor (Bhojpuri)
Mr Pehlaz Nilhani, Film Producer
Air Marshal S. Chand
Mr Jittender Kapoor, Founder Chairman, Hemophilia Federation (India)
Prof (Dr) B.S.Kumar, Former Vice Chancellor KSS University, Darbhanga
Mr Ansul Advocate, Patna High Court
The Times of India, Patna
Patna Women College, Patna
Krishna Niketan Girls High School, Patna
St Thomas High School, Rajendra Nagar, Patna – 16
Nehru Yuva Kendra Sangathan, Patna
Danapur Rifle Club, Patna
Lions Club of Navya, Patna
Punjab National Bank, Kadam Kuan,Patna
Union Bank of India, Boring Road, Patna
Representative
USA
Mr Shashi Ranjan
Achievement
Sh. Shatrughan Sinha, former Union Health Minister and presently M.P, who is the Patron – in – chief of Hemophilia Society Bihar Chapter. And because of his support
⦁ The first stand alone & exclusive Hemophilia Hospital (New Gardiner Road Govt Hospital campus, Income Tax Crossing, Patna-1) in India and 2nd in the whole of SAARC countries ( after Sri Lanka) has also been constructed. It is 2nd Hemophilia Model Hospital in Asia after Taiwan
⦁ It was inaugurated by Shri Nitish Kumar, Hon’ble Chief Minister of Bihar in presence of Shri Shatughan Sinha former Union Health Minister, Shri Sushil Kumar Modi, Dy Chief Minister of Bihar, Shri Chandra Mohan Rai, Health Minister, Govt of Bihar, Shri Janardan Singh Sigriwal, Youth and Sports Minister, Govt of Bihar, and Mr Manoj Tiwari noted Bhojpuri film actor on 19 Sept 2006.
⦁ Mrs Hema Malini, Hon’ble Member of Parliament has provided fund for the development of Hemophilia Hospital in Aug 2009.Mrs Hema Malini was awarded the ‘Padma Bhushan’ in 1999 for her contribution to IIndian Cinema. Born on 16 Oct in the village Ammankudi, located in the District of Trichy.
⦁ Bihar has become first state who is providing life saving drug AHF (Anti Hemophiliac Factor) to all PWH (Person with Hemophilia) free of cost from 2007.
⦁ Surgery facility is available at Patna for hemophilia patients.
⦁ The cabinet of Bihar government has declared Hemophilia hospital, Patna as centre /super specialties hospital for hemophiliacs on 18.10.2011
