Thalassemia is a group of inherited blood disorders. These inherited disorders can be controlled. It is rising as a serious health problem in our country. According to World Health Organization (WHO), 7-8 % new born children in India are thalassemia infected. This rate is increasing 4-5 % each year.
Many people in our country do not know anything about this disease. Even few doctors do believe this disease as blood deficiency anaemia.
There are two types of Thalassemia :
1. Minor Thalassemia (Thalassemia conductor)
2. Major Thalassemia (Thalassemia victim)
A patient with thalassemia minor (thalassemia trait) is normally healthy and has a normal life expectancy. They are a little deficient in terms of haemoglobin in blood. They can be diagnosed by haematologist and treated at thalassemia centre. It has been observed that, more than eight crore people in our country are thalassemia trait. When a mother and a father, both are thalassemia trait, then there are chances that their baby may be a thalassemia major (victim). To remain alive, a thalassemia major needs blood transfusions for whole life. But it also remains with infections risk like hepatitis B, hepatitis C, AIDS etc.
Objectives of the Organization :
1. To make people aware about how to stop/control thalassemia.
2. Increase awareness through students in colleges. Do all tests for thalassemia.
For this purpose, it needs help from government, blood banks, society, media and financial help as well.
The Aurangabad Thalassemia Society (ATS), a voluntary organisation registered under the Bombay Public Trust Act, 1950 as well as the Societies Registration Act, 1860, in 2013 has already been helping 700 thalasemic children with regular blood transfusion, medical treatment, counselling of their parents, educating others for prevention, etc. The total number of children with thalassemia is quite large. This inherited illness in Aurangabad city is estimated to be more than 1,000. In addition, there are about 500 children affected from haemophilia and another about 100-150 children are suffering from sickle cell anemia. Some of these children are regularly receiving blood and medicines from other health service providers. But, there are many who are in need for medical treatment, but are not able to afford the high costs of blood transfusion and medicines. The ATS would like to cover such children as many as possible in order to alleviate their sufferings or to make their lives less miserable.
ATS and Child rights perspectives :
Right to survival is one of the four major child rights as per the Child Rights Convention (1989) of the United Nations which has been ratified by 169 countries including the government of India. Health is covered under the right to survival. Therefore, the ATS would also try to ensure that the children suffering from the three blood related hereditary diseases, i.e., thalassemia, haemophilia and sickle-cell anemia, to get their legitimate right of medical treatment consisting blood transfusion and medicines so that these children could enjoy at least a part of their childhood.
Role of Dr. BabasahebAmbedkarVaidakiyaPratisthan (DBAVP) :
The ATS has been using the medical and infrastructural facilities of Dr. BabasahebAmbedkarVaidakiyaPratisthan (DBAVP). The ATS is also receiving blood supply in the required quantity of different groups from DattajiBhale Blood Bank, which is also a unit of the DBAVP located in the adjacent building in the same hospital complex.
Role of Think Foundation :
The ATS manages its programmes and activities with financial supports from the Think Foundation which itself is an NGO . However, the ATS would continue functioning from the DBAVP until a suitable alternative is available to it through the government of Maharashtra or any other agency.