Manipal: In 2012, Manipal University signed a memorandum of understanding with Novo Nordisk Haemophilia Foundation, Zurich in Switzerland for a project to identify patients with bleeding disorder in the four districts of the state; Udupi, Shivamogga, Chikkamagaluru and Dakshina Kannada. “The four-year project called IDEEA has come to an end and is expected to be renewed at a function to be held on January 30, 2016,” said Dr Annamma Kurian, Dr. Annamma Kurien, Associate Dean and Head, Department of Pathology, Melaka Manipal Medical College and President, Manipal Hemophilia Society, while addressing press persons here at the MMMC Board room in Manipal University on Friday.

Novo Nordisk Haemophilia Foundation (NNHF) situated in Zurich, Switzerland NNHF is a non-profit organisation dedicated to defining and funding sustainable programmes which improve access to quality care benefitting people with haemophilia and allied bleeding disorders in the developing world, said Dr Alexandre Alencar, Senior project Manager, HHHF, Zurich. He added, “With local partners and renowned experts, it addresses three focus areas: capacity building; diagnosis and registry; and education and empowerment. The project IDEEA is one of the many projects being run by the Foundation,” he said.

The Hemophilia Federation of India (HFI), New Delhi through its 78 chapters in the country covering 640 districts; initiated by families of PWH and other members of the medical and lay communities have provided enormous success towards the care of hemophilia and other bleeding disorders. Manipal hemophilia Society is one of the chapters in HFI. We have 380 patients from Karnataka and Northern Kerala.

The project IDEEA means, ‘Identification, Diagnosis, Education, Empowerment for Action of patients with bleeding disorders in South India. Dr. Annamma Kurien, along with the comprehensive hemophilia care team in Manipal were responsible for the successful completion of the project. IDEEA even won NNHF’s project of the year award and was the first project in India to win the award.

The main features of this project are;

1) Identification of patients with bleeding disorders through ASHA workers. About 2200 ASHAs under NHM were trained in bleeding disorders after which they were to identify and report patients in the community through their door to door survey.

2) Diagnosis: Suspected patients were tested in the special coagulation testing facility to identify their bleeding problem. In this venture, about 586 patients were tested and 88 patients were found to have a bleeding disorder. (Hemophilia is one of the common inherited bleeding disorder due to deficiency of certain proteins in blood and is seen in men while women are carriers. vWD is much more common and can be seen in men and women. It causes a lot of problems in girls with excessive menstrual bleeding)

3) Education of medical and other healthcare professionals was done through various programmes like CMEs, seminars and workshops. In these 4 years more than 3000 health care professionals were trained.

4) Empowerment of the patients with hemophilia was done through higher education scholarships for 18 youth which was provided through ‘Save One Life’ organization in USA, said Martha Hopewell, Executive Director of the organization. These youth in spite of their health and personal difficulties could pursue their education and 4 of them are employed and others are still pursuing their education.

On January 30th 2016, the programme, “IDEEA- Culmination and Continuation for hemophilia care” will be held. Dr. H.S Ballal, Pro-Chancellor, Manipal University will be the chief guest. Dr.Vinod Bhat, Vice Chancellor, Manipal University and chairperson of the hemophilia society will preside over the function. Dr. Alexandre Alencar, The project manager of NNHF and Martha Hopewell from Save One Life, USA will be guests of honor. Another important programme is the launch of ‘women bleeders’ programme’ which is being initiated through a fund supported by Cheryl D’ Ambrosio from MyGirlsBlood, USA and NNHF to will help girls and women with excessive menstrual bleeding to be tested free of cost.