Volume 4 Issue 9 - May 01, 2006
Hemophiliacs demand adequate funds and medical facility
D.N.I.S. News Network - The lack of awareness, prohibitive cost of medical treatment and meagre government funding have made life difficult for an estimated 50,000 people affected by Hemophilia in India. The permanent blood disorder and unavailability of adequate support facilities have a disabling effect for people affected by it.
These issues came to the fore on the World Hemophilia Day observed on 19 April 2006 in different parts of the country, including the National Capital where a public march was staged to attract attention toward the issues and needs of Hemophiliacs.
Executive Director of the Hemophilia Federation-India (H.F.I.) Ranjit Mookerji blamed the Government of not showing any apparent urgency to address hemophilia. Activists, doctors and parents claim that the little known blood disorder is recognised as being as dangerous as A.I.D.S. and Thalassemia.
Stating the reason for this apparent apathy, Mookerji said: “Because Hemophiliacs are lesser in number in comparison to people suffering from other deadly diseases, the Government has refrained from taking interest in the matter.”
“No budgetary allocations are made for hemophilia. We petitioned the Central Government through the National Human Rights Commission (N.H.R.C.) but it fell on deaf ears,” Mookerji was quoted as saying.
"Hemophilia patients deserve fair treatment from the Government in keeping with the right to life incorporated in Article 21 of the Constitution," said Vinod Khanna, President of the Hemophilia Society of Delhi, who is also a hemophiliac, was quoted as saying by a newspaper.
Most government hospitals do not have stock of the essential blood clotting factor concentrates that has to be administered to the patients immediately so that their lives can be saved. Factor concentrates cost about eight to twelve rupees per unit. In each episode, a Hemophiliac has to be administered at least 250 to 1,000 units twice a day. This is simply out of reach for many people living in poverty or even with modest means.
Apart from administration of factor concentrates, the focus needs to be shifted to early intervention through diagnosis and pre-natal screening, prevention of bleeding episodes, and in the event of bleeding, proper treatment, including surgery and physiotherapy.
DNIS is produced and managed by:
National Centre for Promotion of Employment for Disabled People
Screening Guidelines to be followed by CISF Security Staff for Passengers with Disabilities at Indian Airports
Rights of Persons with Disabilities Bill
Mental Health Care Bill
CRPD Monitoring Report
20 Stories of Change(book)
- List of Awardees 2015 :NCPEDP MPHASIS Universal Design Awards (2.7 MB)
- List of Awardees 2014 :NCPEDP MPHASIS Universal Design Awards (1 MB)
- List of Awardees 2013 :NCPEDP MPHASIS Universal Design Awards (1.44 MB)
- List of Awardees 2012 :NCPEDP MPHASIS Universal Design Awards (804 KB)
- List of Awardees 2011 :NCPEDP MPHASIS Universal Design Awards (864 KB)
- List of Awardees 2010 :NCPEDP MPHASIS Universal Design Awards (623 KB)
SHELL HELEN KELLER AWARDS
NCPEDP-Shell Helen Keller Awardees 2013
- Rajasthan Government provides 3 % reservation for disabled people in R.J.S.
- Bihar Government to appoint State Commissioner for Disability
- N.C.E.R.T.’s Action Plan for ‘School for All’
- South D.L.U. files petition against Culture and Religious Endowments Department, T.N.
- Chennai High Court gives nod to Low Floor Buses
- ‘We don't have the money to provide you with all your rights': Chief Electoral Officer of Tamil Nadu
- National Capital Region gets round-the-clock disability helpline
- Hemophiliacs demand adequate funds and medical facility
- Experiences of the Disability Movement shared in the Arab world
- Hyperbaric Oxygen Therapy offers hope to cerebral palsy affected people
Disability News and Information Service is produced and managed by: