Committmentts

The next ambitious step is to increase overall awareness in every sector of the society.
This was done through vigorous activities such as:

1. Awareness among Asha activists who are the backbone of health related initiatives in rural India.
2. xtension activities among college students.
3. To sensitize prospective couples who are getting married in the coming months.
4. Those whose previous child suffered from thalassemia, were warned about the future consequences of subsequent pregnancies
5. A website has been created for country wide registration, so that concrete data can be obtained which will help to improve the life expectancy of Thalassemia Major children in future.
6. Many volunteers have agreed to participate as district coordinators to collect data related to this issue.
7. Aim for total eradication of the thalassaemia epidemic firstly from Parbhani district by the end of 2025. Threefold approach of screening of pregnant women with help of ASHA workers under the eye of Medical Officers, management of th patient to increase life-span by periodical check-up, arrangement of curative therapies like BMT.
8. Procurement of Handicapped Certificates for all the th patients by the end of 2025, to facilitate their management at higher centres,
9. Adequate supply of thalassaemia medicines at every district HQ by end of 2025
10. Collection of data of all th patients by 2025 at day care centres, blood banks, district hospitals. Frequent updating of an elaborate questionnaire to elicit information on such points as HLA typing done or not, medicine availability, regular visits by a certified haematologist, handicap certificate received or not, etc. Based on these data, a comprehensive report will be submitted to the government by the end of 2025, to better help formulate an intelligent policy.
11. Organization of HLA camps in all district HQ, with the help of Datri and HGI Ltd. Identification of suitable cases for BMT, then effecting a tie-up between advanced medical facility and the patient and seeking financial help for the procedure.
12. A state-wide campaign of awareness of thalassaemia by preparing a short film and screening it in every camp and public occasion, printing periodic pamphlets and distribution, use of social media to reach maximum people, involvement of all matrimonial websites to make th awareness an essential part of pre-wedding screenings.
13. Preparing skilled and semi-skilled people, by training them in soft skills like counselling affected families.

Now that we have come to know both our current capabilities and our limitations, we have made certain commitments to ourselves.

1. We envisage a thalassaemia-free Parbhani district by the end of this year 2025. We will be doing our best towards this by implementing our threefold approach of screening of pregnant women with a view to avoid births of thalassaemic babies, management of those already born, and facilitating cure, where cure is possible. Towards the screening part, we realize the colossal importance of ASHA workers, the backbone of practically every health movement in India. The ASHA worker can screen and report every possible thalassaemic pregnancy, as well as counsel the families for an early termination.

   The management of already existing cases involves HLA typing with an aggressive approach towards bone marrow transplant. For those who do not qualify for the ame, we envisage a regular supply of medicines and fresh blood. We plan to organize blood donation camps at regular intervals, so that the need for blood is met.

   For those who qualify for BMT, we plan to evolve a model in which all the parameters can be readily o-ordinated. We plan to enter into MOU with many reputable hospitals with facilities of BMT, as well as try for an assured funding to the patients for the same.

2. Sometimes patients who are referred to higher centres for management of thalassaemia, find it difficult to avail of the same for want of the required documentation. We plan to provide every thalassaemic case the required Handicapped Certificate which will make it easy for them to avail of medical help at higher centres at a reduced cost.
3. We also plan to ensure, by constant persuasion with the State Government, an adequate supply of medicines for all identified and likely thalassaemia patients in all districts of this State. This model may then be implemented in the nation as a whole.
4. We have prepared an elaborate questionnaire to collect all relevant data about every thalassaemia patient. We try to update that questionnaire frequently. We plan to collect data on the following points namely the type of thalassaemia, whether HLA typing of the siblings is done or not, whether a certified haematologist visits regularly or not, and whether there is an adequate supply of medicines available or not. We submit this questionnaire at every relevant POC such as blood banks, day care centres, and district hospitals. We want to collect all the necessary information and prepare a comprehensive report which will accurately reflect the profile of thalassaemia in India. We would like to submit our report to the Government of India by the end of 2025 so that an intelligent policy can be formulated at the apex level to combat the disease.
5. We plan to organize at regular intervals HLA typing camps at every district headquarters in Maharashtra, with active help from the Datri International Foundation and Histogenetics India Pvt. Ltd. We also plan to prepare a register for Bone Marrow Donors, which will not only be useful for the thalassaemia patients but also for blood cancer patients on a global footing. The suitable patients from these camps may then be shortlisted for further treatments like the BMT. We plan to provide every assistance to such patients with a hope for a cure, from identifying the most suitable facility and doctor, to provision for financial help.
6. We plan an aggressive approach towards social awareness campaign. We envisage that the government will make it mandatory for a thalassaemia awareness message may be flashed across all ATM machines, and on all matrimonial websites. We plan to prepare a short film on all aspects of thalassaemia, which can be viewed not only on You Tube, but can be played in every theatre before the main movie. We also plan to use social media like facebook and whats app, to make a P2P contact with every person involved in the campaign. We focus especially on all matrimonial websites, so that a screening for thalassaemia can be made a mandatory part of pre-wedding screening.
7. We plan to do our best to persuade the State and National Governments to include a chapter on thalassaemia in their school curricula. Such a chapter might increase social awareness from an early age and facilitate our work for future generations
8. We know that the current hands are quite less and not enough for the challenge to manage thalassaemia. We plan to prepare a veritable workforce of semi-skilled workers and collaborators, who can be trained in various aspects of the management of thalassaemia, from counselling of the affected families to care of the hospitalized patient, to organisation of blood camps.