The Jawaharlal Nehru Hospital and the Charlotte Maxeke Johannesburg Academic Hospital of South Africa signed yesterday a medical twinning in the field of hemophilia at the Victoria Hospital in Candos.
The Minister of Health and Quality of Life, Dr Anwar Husnoo; the President of the World Federation of Hemophilia, Mr Alain Weill; the Professor of Hematology from the University of the Witwatersrand, Johannesburg, Prof. Johnny Mahlangu; and the President of the Hemophilia Association of Mauritius (HAM), Mr Asraf Caunhye, and other eminent personalities were present for the event.
The twinning project, which will span over a period of four years, will be sponsored by the World Federation of Hemophilia. It aims to improve the diagnostic capability of health care professionals in Mauritius; help better identify patients with hemophilia and other bleeding disorders; produce guidelines for the management of hemophilia patients; set up a comprehensive Hemophilia Treatment Centre; and facilitate the sharing of regional expertise through publications and presentations.
In his address, the Minister of Health and Quality of Life, Dr Anwar Husnoo, lauded the twinning initiative which will enable the setting up of a Treatment Centre at the Jawaharlal Hospital. Speaking about the disorder, he recalled that hemophilia is an inherited bleeding disorder in which the blood does not clot properly while adding that in Mauritius 94 patients are diagnosed with hemophilia.
Dr Husnoo highlighted that the mission of the Ministry of Health and Quality of Life is to provide quality services to everyone and in that context Factor Concentrates are being provided to all hemophilia patients which shows the significant progress made by Mauritius as regards treatment of hemophilia patients. The management of the disorder, he pointed out, requires the collective efforts of patients, parents and health care professionals since a comprehensive team is required for the long term management and rehabilitation of this disease.
For his part, the President of the World Federation of Hemophilia, Mr Alain Weill, underlined that the mission of the Federation is to work globally to close the gap in care and to achieve treatment for all people with hemophilia and other inherited bleeding disorders. To that end, several programmes have been put in place with the aim of increasing accurate laboratory diagnosis of the disease, improving medical expertise and care delivery through training, increasing access to safe treatment products, and building a strong national patient organisation through capacity building, he emphasised.
Mr Weill added that a World Bleeding Disorders Register will be launched this year by the Federation. The World Bleeding Disorders Registry is a web-based data entry system that provides a platform for a network of hemophilia treatment centres to collect uniform and standardised data on people with hemophilia. This registry, he pointed out, will bring together privacy-protected patient data from countries around the world, storing it in one central location. He underpinned that the real-world data generated in the registry will be used to advance the understanding and care of people with hemophilia worldwide and support evidence-based advocacy initiatives.
The President of the Hemophilia Association of Mauritius, Mr Asraf Caunhye, pointed out that the first twinning of the HAM and the South African Hemophilia Association occurred from 2012 to 2016. Its objectives, he stated, were to build the capacity of the HAM to enable it to meet its aims and objectives, develop its strategic plan, mission and vision, as well as create awareness of the disorder.
He emphasised that the first twinning resulted in a number of positive outcomes amongst which the setting up of a National Hemophilia Register; launching of a guideline protocol in 2013; publication and dissemination of leaflets, posters and magazines; and training of over 100 health professionals from the public and private sectors. The achievements of Mauritius as regards the treatment and care of hemophilia patients are being recognized at world level, he underscored.
Speaking about the twinning with the Charlotte Maxeke Johannesburg Academic Hospital, Mr Caunhye underlined that it will give a comprehensive infrastructure for the diagnosis, treatment and care of hemophilia patients. He added that Mauritius is strongly committed towards the cause of hemophilia patients and can serve as a model to be promoted in the African region.
The Twinning Programme of the World Federation of Hemophilia aims to improve hemophilia care in emerging countries through a formal, two-way partnership between two hemophilia organisations or treatment centres for a period of four years.
For more than 20 years, the Twinning Program has established 215 partnerships across 113 countries, with the goal that twinned organisations or hemophilia treatment centres work together and share information, resulting in a mutually beneficial partnership, to transfer expertise, experience, skills, and resources. Over the lifespan of the programme, twins have completed a total of 949 total years of twinning partnerships.
World Hemophilia Day
The signing of the medical twinning marks the World Hemophilia Day which is annually observed on 17 April. It aims to create awareness about the disorder and help people with bleeding disorders live a healthier, longer and more productive life by educating and empowering them through knowledge sharing, information exchanges, education and training.
Activities marking World Hemophilia Day
A booklet focusing on the topic of hemophilia was launched yesterday in Quatre Bornes by the Hemophilia Association of Mauritius, as part of its activities to mark World Hemophilia Day 2018. The Association will also be lighting the 'Cheminee de Bagatelle' in red in support of all those suffering from this life-threatening disorder in Mauritius.