User talk:Hemophiliabihar

The 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.

Hemophilia

What is Hemophilia?

Hemophilia is a lifelong bleeding disorder that prevents blood from clotting properly. People with hemophilia do not have enough clotting factor, a protein in blood that controls bleeding. The severity of a person's hemophilia depends on the amount of clotting factor that is missing. A person with hemophilia does not bleed faster than anyone else, but bleeding may last longer. The main danger is uncontrolled internal bleeding that starts spontaneously or results from injury. Bleeding into joints and muscles can cause stiffness, pain, severe joint damage, disability, and very rarely death, if the treatment is out of reach.

How do people get hemophilia?

Hemophilia is usually inherited and about one in every 10,000 population is born with the disorder. About one third of new cases are caused by a new mutation of the gene in the mother or the child. In these cases, there is no previous history of hemophilia in the family. When the father has hemophilia but the mother does not, none of the sons will inherit hemophilia, but all of the daughters will carry the gene. Women who have the hemophilia gene are called Carriers and they can pass it on to their children. When the mother is a carrier and the father does not have hemophilia, for each child there is a 50% chance that a son will have hemophilia and a 50% chance that a daughter will carry the gene. India has over 1 lakh people suffering from hemophilia

What are the signs of hemophilia?

Big bruises; Children with hemophilia often do have reddish blue patches and swellings. Small cuts anywhere on the body bleed for longer time. Nose bleeds Bleeding into muscles and joints, especially the knees, elbows, and ankles Sudden bleeding inside the body for no clear reason; Prolonged bleeding after a cut, tooth removal, surgery, or an accident. Serious internal bleeding into vital organs, most commonly after a serious trauma. How is hemophilia treated?

On finding any of the signs above the immediate step is to get the child diagnosed. If the laboratory tests confirm hemophilia and its severity following steps would help:-

i) Keeping the records properly in a file.

ii) Knowing how to manage hemophilia care by discussing it in the families affected by it, doctors, social workers and psycho-social consultants. Reading more and more educative material, watching visuals, presentations & films on it will sort out half the problem.

iii) Consulting a qualified and trained medical specialist for medical treatment.

Effective treatment for hemophilia is very much available, but as yet there is no cure. Hemophilia is treated by making good the missing clotting factor in the blood. This is done by injecting a product that contains the needed factor into a vein. Bleeding stops when enough clotting factor reaches the affected area. With proper treatment, people with hemophilia live relatively normal lives.

Hemophilia & its Gravity:

As per WHO prevalence rate there should be over 1 Lakh persons having Hemophilia in India. In addition at least double this number (mother and daughter/s and sometimes sister/s as well of the affected male) are the carriers of this genetic bleeding disorder.

Moreover it is a life long condition requiring adequate timely attention to stop any bleeds. Having no access to medical treatment, leads to physical disabilities. This limits the life activities and sometimes the affected child does not attend the school. More expensive treatment means the collapse of the family budget and priorities, social stigmatization for the child as well as his mother and may be family. And the affected child thus becomes dependent for the rest of his life. Moreover, if he resorts to unconventional treatment like unscreened blood transfusion the person can be the victim of HIV/AIDS or Hepatitis or other unknown viruses.

ALL THIS IS FORTUNATELY PREVENTABLE.

And How: It is possible that a person with hemophilia can lead a near normal life. If the following issues and limitations are taken care of:

Diagnosis: A child, having symptoms need to visit the well known hospital in his state for further investigation and blood coagulation tests. At present the diagnostic facilities are very limited. The parents have to travel hundreds of kilometers to have the access to a hematologist or the laboratory.

Awareness: In India there are still 40% people illiterate and even more when it comes to knowing about health. Government of India spends 0.9% of GDP on health. Therefore public awareness, by NGOs like SHC INDIA, about hemophilia and information about the medical facilities available in the country is very important.

Disability: It is the single most debilitating impact of hemophilia. Lack of diagnosis in the beginning and prohibitively expensive treatment lead to frequent bleeds in joints which get damaged and a child is disabled even in his childhood. This disability continues increasing because of little or no affordable treatment. This disability leads to life long dependency.

Exposure to fatal viral infections: The cost of the medicine called Anti Hemophilia Factor – AHF is very high. A vial of AHF for a small child would cost Rs.2000/-. This, being ill- affordable, parents resort to other unsafe modes of treatment like not-properly tested blood. It is estimated that at least 8% of such persons are HIV positive. HBV and HCV infections are estimated to be over 30%.

Gender Bias: Due to higher ignorance level in India, especially in rural areas, the mother of the affected child is blamed for giving hemophilia to her son. She faces a lot of gender bias, sometimes torture and taunts of the rest of the family. Counseling to the family plays a very important role.

Financial Burden: Hemophilia treatment is very expensive even for a well-to-do family. With no support from the Government a family has no option but to let their child bleed, suffer unbearable pain or get disabled in his childhood itself. He may also become a school drop out for fear of bleeds.

These issues are mainly due to the inability of our society or Government not being positive about health. If the health budget is raised to 4% with its equitable distribution every person with hemophilia would lead a near normal life and contribute equally to the progress of the country. They too have “Right to Live” as pronounced in our constitution.

Hemophilia Care is the most neglected health issue and the Government has to come forward and include it in the National Health Programs so that every person with hemophilia can lead a healthy, disable free and HIV-free life.

“Nobody should die or become disabled when treatment is available"

HIV / AIDS

Human Immunodeficiency Virus infection (HIV) is a viral disorder that progressively destroys a certain type of white blood cell (lymphocyte) and causes Acquired Immunodeficiency Syndrome (AIDS).

Infection by the human immunodeficiency virus eventually results in progressive deterioration of the body's immune system, allowing opportunistic infections and certain cancers to develop. AIDS is the late stage of HIV infection.

AIDS has reached epidemic proportions, with more than 750,000 cases and 400,000 deaths reported in the US. The World Health Organization estimates that 30 to 40 million people worldwide are infected today.

It is estimated that currently 5% to 8% of persons with hemophilia are infected with HIV in India. This is because such people receive blood transfusions instead of the standard therapy with Anti Hemophilia Factor Concentrates.

Nowhere in the world, treatment with FFP or Cryo is advised in view of window period.

The AIDS epidemic has placed great health, economic, ethical and emotional burdens on such affected families and the wider bleeding disorders community.

No case of HIV/AIDS has been found in people who have been using only Factor Concentrates since 1986 due to viral inactivation (viral killing) methods that are used to treat such people. These viral inactivation processes include heat treatment, solvent-detergent cleansing and monoclonal purification.

The latest therapy to treat hemophilia is recombinant factors which are free from any risk of blood contamination but are prohibitively expensive for people in developing countries.

In order to prevent any HIV/AIDS infection in people with hemophilia Factor Concentrates are the treatment of the day. This is the reason that this medicine has been placed in the List of Essential Drugs by WHO and Govt. of India.

All people suffering from hemophilia should be treated by Factor Concentrates only as a rule.

The transmission of HIV requires contact with a body fluid that contains infected cells or virus particles, including blood, semen, vaginal secretions, cerebrospinal fluid and breast milk. HIV is also present in tears, urine and saliva, but in much lower concentrations. The virus is transmitted in the following ways:

Injection or infusion of contaminated blood, as occurs with blood transfusions, the sharing of needles or an accidental prick from an HIV-contaminated needle. Sexual relations with an infected person, during which the mucous membrane lining the mouth, vagina or rectum is exposed to contaminated body fluids. Transfer of the virus from an infected mother to a child before or during birth or through the mother's milk. Prevention

Uninfected people should abstain from sex or engage only in safe (protected) sex. HIV-positive people should abstain from sex or have safe (protected) sex; they should not give blood or donate organs, avoid pregnancy and notify previous and prospective sexual partners. Drug abusers should halt the practice of sharing or reusing needles and enter a drug treatment program. Medical and dental professionals should wear latex gloves whenever there is a possibility of contact with body fluids, and properly use and dispose of hollow needles. There is no current vaccination for HIV, but several new studies hold promise for the future.

Treatment

Many drugs are now available to treat HIV infection. All prevent the virus from reproducing and slow the progression of the disease. The trouble is HIV usually develops resistance to these drugs when they are used alone.

Treatment seems to be most effective when at least two to three of the drugs are given in combination. Drug combinations may delay the onset of AIDS in HIV-positive people and extend one's life compared with the use of single drugs. Recent studies suggest that these drug combinations can reduce the virus to undetectable levels and restore the immune system to near normal. Doctors aren't certain how soon after infection these drugs should be started, but people with high levels of HIV in their blood should be treated.

People with AIDS are usually prescribed drugs to prevent infections, such as pneumonia, as well.

(D) Hepatitis

(E) Psycho – Social issue

Hemophilia Bihar Chapter
“All great things are simple, and many can be expressed in a single word: freedom, justice, honour, duty, mercy, hope.” Winston Churchill 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.

Our Team (Supporter) Hemophilia Bihar
Well-wishers / Supporter / Partner / Associate Ms Hema Malini, Hon'ble M.P and noted film actress Ms Sabana Azami Hon'n ble M.P and noted film actress Mr Rajeev Sinha, Ex. Administrator, UNICEF, Bihar

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 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 of Hemophilia Bihar
'''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

Hemophilia Bihar Awards
Bihar Hemophilia Shield 1997 – Dr B P Gupta 1998 – Dr S K Sinha 1999 – Dr Ajit Kumar Varma 2000 – Dr Ravi Ranjan 2001 – Mr Pradeep Gupta 2002 – Mr Vijay Kaul 2003 – Dr Deepak Kumar Singh 2004 – Dr Prafull Kumar Vijay Kumar Sharma Memorial Hemophilia Award Dr Prafull Kumar Mr Subhajit Banerjee Mr Mukesh Garodia Mr Apoorva Mitra Mr S. Mohanthy Mr Ajoy Roy

Contact Us
Hemophilia Society Bihar Chapter Hemophilia Hospital, Training and Research Centre, Income Tax Crossing, Patna – 800001 (India) Tel: 91-612-2205285 /0612-2686466 Email: goodwork_111@rediffmail.com Website: http://www.hemophiliabihar.org

Activities & Facilities
1. Medical Facilities Hospital Dean – Dr Y P Saha,               Registrar - OPD Hemophilia pathological diagnosis Surgery Physiotherapy Ultra Sound X Ray Ambulance Carrier counselling Pre-natal diagnosis: The prevention of hemophilia by carrier detection and prenatal     diagnosis and subsequent selective abortion should always be done after proper and effective counseling to the family members of the PWH. It is permitted under PNDT Act 1994. Between 10 to 12 weeks of pregnancy, fetal DNA can be obtained from CVC (Chronic villi sample). These procedures can be analyzed in special laboratory for establishing the stats of the baby in the womb. Socio – psycho counseling Membership and card for PWH, please provide 2-stamp size photo Hemophilia pathology test report - photocopy Rs 100/- (free for BPL card holder) Medical Advisory Board Dr Ajit Kumar Varma – Chairman Dr Deepak Kumar Singh – Coordinator Dr A K Lal Dr Manorma Mishra Dr Nilam Sahay Dr Purnendu Ojha Dr Ravi Ranjan Dr S K Sinha Dr S C Jha Dr Sunil Kumar Singh Dr U P Sinha Ethics committee (As per ICMR guidelines – 8 to 12 members) 1. Chairperson 2. One - two persons from basic medical science area (preferably one pharmacologist) 3. One - two clinicians from various Institutes 4. One legal expert or retired judge 5. One social scientist/ representative of non-governmental voluntary agency 6. One philosopher/ ethicist/ theologian 7. One lay person from the community 8. Member Secretary Training Diploma in Hospital Management Diploma in nursing Diploma in Pharmacy Diploma in Radiology Diploma in Physiotherapy Diploma in Hospital waste Management Diploma in Pathology Diploma in Bio – Certificate in Hemophilia Management Computer literacy Programme Awareness 2. Rehabilitation Economic Rehabilitation About 54% people in India are living below the poverty line and if such a person also has hemophilia the situation is further pathetic. He has to spend considerable amount on his treatment as well. Moreover, they cannot do a field job.

This rehabilitation programme is aimed at their empowerment and making the family and the person with hemophilia a self reliant.

HSBC gets them trained, organize technical support for a right kind of livelihood for him/ his family. Based on the skills and financial needs the person is encouraged to start a small venture. Financial and technical support is provided by SHBC. The project progress is also monitored so that the problems faced by him are addressed. OUR WORKING FIELDS IN DIFFERENT countries and International                         Nepal, Bhutan 1. UTTAR PRADESH 2. NORTH EAST                               MEGHALAYA, TINSUKIA 3. MADHYA PRADESH

People behind Hemophilia Bihar
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.

Mr Sanjeev Kumar Sinha is associated with Hemophilia Society Bihar Chapter since 1999. Presently Academic Counsellor in IGNOU, Patna. He is Prog. Coordinator of hemophilia Society Bihar Chapter.

Other details are waiting