Report – May to July 2016
Thalassemics Efforts- India Project Blood Donation Camps May and June are particularly bad months in the country with respect to availability of blood in blood banks. Difficult times are faced by patients who are dependent on blood transfusions, particularly persons living with thalassaemia major. Think Foundation conducted 81 blood donation camps in Mumbai in the months of May and June, and coordinated 74 blood donations for various corporates in their offices across the country. Treatment of Hep C Think Foundation had earlier written to the Drugs Controller, Director General Health Services and Secretary, Ministry of Health & Family Welfare, Govt. Of India for allowing the introduction of combination Direct Acting Antivirals (sofosbuvir + ledipasvir/daclatasvir. We have taken up all thalassaemia patients who carry Hep C virus in Mumbai for RNA Quantitative and Genotype. The tests were offered free of cost. This was followed by treatment with the new drugs with the partnership of Children’s Liver Foundation. 45 patients have been started on treatment, and the results after the very first month of treatment were extremely encouraging. We wish to take another 40 thalassaemia patients for treatment in the next couple of months. Mumbai, Gujarat and Punjab seem to be the places with the highest incidence of Hep C among thalassaemia patients. From the follow up done across various states, we find very low prevalence in Tamil Nadu, Karnataka, Telengana, Goa, and rest of Maharashtra. Ofcourse figures are not available for Central, North and Eastern parts of the country Bone Marrow Transplant (BMT) After the establishment of a BMT Centre at Jaipur by Cure2Children under Dr. Faulkner, 2 more centres have been established by the partnership of Sankalp India Foundation (SIF) and Dr. Faulkner – one with People’s Tree Hospital in Bengaluru, and the other with Kokilaben Ambani Hospital in Mumbai. These centres offer BMT at a cost of less than Rs. 10 lakhs. Sion Hospital has a 1-bedded BMT Centre which has offered free BMT. 2 thalassaemia patients have been transplanted at Kokilaben and 2 at Sion Hospital. Our Foundation has carried out HLA-Typing exercises with the support of SIF in centres in Mumbai, Jalna, Ahmednagar and Aurangabad. Additionally, SIF has conducted the same exercise in Nasik, Nagpur, Ahmedabad and Hyderabad.
TIF India Project May- July 2016 Update
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Day Care Centres in Maharashtra With the objective of providing proper management of thalassaemia, our Foundation has been visiting the interiors of Maharashtra. Centres opened by us at Jalna and Aurangabad are fully functional. We have visited Ahmednagar and Chandrapur in May, and will be visiting Solapur Kolhapur and Latur. It is our endeavor to open Day Care centres in every district in Maharashtra. The Directorate Health Services has announced the setting up of Day Care Centres in Aurangabad, Nagpur, Pune and Ahmednagar, after a question was raised by a legislator in the Maharashtra Legislative Assembly. This is in addition to Centres established three years ago by the government in Thane, Nasik, Amravati and Satara. The Centres started by the government mainly serve to provide iron chelators free of cost to patients in that district. Very few patients in these Centres are confident of blood sufficiency, and there is hardly any management of the patients. Day Care Centre in Goa Our Foundation, after assisting in the formation of the Goa Thalassaemia Society, has initiated a Thalassaemia Day Care Centre at the Goa Medical College. Workshops were conducted for parents and doctors after a taking a team headed by Dr. Mamta Manglani from Mumbai. Comprehensive Thalassaemia Centre in Mumbai The decks have been cleared for establishing the first Comprehensive Thalassaemia Centre in Borivili, Mumbai. The Centre will have a transfusion facility, multi-disciplinary care, prenatal diagnosis facility, Laboratory for population screening, and an 8-bedded BMT Centre, with 4 step-down rooms. The Centre is expected to be functional by the end of this year.
TIF India Project May- July 2016 Update
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BRINGING OTHER STATES UNDER THE FOLD OF TIF We have been focusing initially on South India, and met with a reasonable amount of success : Goa : Goa Thalassaemia Society President : Dr. (Mrs.) M. Silveria – Head of Pediatrics, Goa Medical College Secretary : Dr. Lorraine Misquith Tel : 94224 3914 E-mail : lorrainemisquith@ gmail.com Jt. Secretary : Mr. Anjani Kumar Srivastav – Parent No. of children Registered : 80 Govt. support : Free blood transfusion, free Bed-side Leukocyte Filters, free investigations (other than Serum Ferritin, DEXA, MRI) New Society and new Centre. Hope to get the Government involved for much more, particularly for iron chelation to begin with.
Telengana : Thalassaemia & Sickle Cell Society Secretary : Dr. Suman Jain Tel : 99897 06399 E-mail : tscsap@gmail.com No. of patients registered : 2230 Govt. support : 350 patients receive free iron chelators underthe Arogya Shree Scheme A lot more can be done by the involvement of TIF
Andhra Pradesh No society and no centre exists in this newly-formed state I have established contact with the A.S. Raja Blood Bank, who provide blood units to thalassaemia patient. We plan to start a Society and a Centre at Vishakapatnam, and will be visiting the city in September with a team of doctors headed by Dr. Manglani. We hope to culminate the visit by initiating a Thalassaemia Society for the state, and establishing a Day Care Centre at the Civil Hospital. Focal Person : Dr. Sugandhi Tel No. 93939 63436
TIF India Project May- July 2016 Update
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Karnataka Sankalp India Foundation Secretary : Mr. Rajat Agarwal Tel. 9880132850 E-mail : sankalp.admin @ gmail.com No. of patients registered with them : 500 Estimate of additional patients in the state : 1500 Sankalp India Foundation is one of the best organizations in the country for thalassaemia.
Tamilnadu Thalassaemia Welfare Association Secretary : Mr. Ganeshan Tel : 94441 16047 E-mail :vhsbb@yahoo.com No. of patients registered with them : 400 Estimate of additional patients : 1600 Govt. support : Rs. 96000 per annum to thalassaemia patients for free chelation and investigatons, under the Chief Minister Comprehensive Health Insurance Scheme. The Scheme also provides Rs. 9.2 lakhs per patient for Stem Cell Transplants in registered hospitals in and outside Tamilnadu. Kerala No Society, no Centre, not many Thalassaemia patients. In the process of collecting information of no. of thalassaemia patients and facilities available to them. This is being done through our partnership with organizations working for voluntary blood donation _____________________________________________________________________________ Making some headway in the rest of the country at the following locations : Jharkhand Hoping to bring together all thalassaemia patients. Had a series of discussions with Mr. Atul Gera, who is initiating the process of formation of a Thalassaemia Society, and setting up a Thalassaemia Day Care Centre. Focal point : Mr. Atul Gera Tel. : 98351 27273 E- mail : atulgera007@gmail.com
Odisha TIF India Project May- July 2016 Update
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Trying to establish contact with the Thalassaemia & Sickle Cell Welfare Association, Bhuvaneshwar. Also in touch with organizations working for voluntary blood donation. Will soon decide on the key organization and the focal person. West Bengal Have been in touch with Mr. Tapas Sengupta and Mr. Tathagatha Sengupta of the Thalassaemia Society of India, Kolkata. Have been asked to visit Kolkata Will be making a visit very soon. Thalassaemia Society of India Focal point : Mr. Tapas Sengupta Tel. : 98311 32711 E-mail : tksgupta@yahoo.com
TIF India Project May- July 2016 Update
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