PANAJI: The Hemophilia Federation (India) (HFI) will hold its Regional Council Meeting for the West Region at the International Center Goa on the 3rd and 4th of June, 2023.
Goa Minister for Social Welfare Subhash PhalDessai and Goa State Disability Commissioner Guruprasad Pawaskar will inaugurate the meeting at 2 pm on Saturday, June 3.
HFI, affiliated with the World Federation of Hemophilia (WFH), has been actively working for the well-being of haemophilia patients in India for the past 40 years.
With its inception beginning with three chapters, HFI has grown to encompass 93 chapters nationwide. Currently, there are approximately 28,000 individuals identified with haemophilia in India, and their treatment costs remain high.
The West Zone, consisting of Chhattisgarh, Madhya Pradesh, Gujarat, Maharashtra, and Goa, has 22 societies dedicated to providing free treatment and improving the social lives of haemophilia patients.
Hemophilia is a hereditary blood disorder characterized by clotting factors VIII and IX deficiencies. Anti-hemophilic factors are used for treatment, but their availability is limited in many parts of India, causing patient difficulties. Delayed treatment and a higher incidence of pain are common due to on-demand treatment only after bleeding occurs.
Preventive treatment, known as prophylaxis treatment, is considered the best approach according to World Hemophilia Guidelines. This treatment requires regular factor infusions to prevent internal bleeding. Advanced treatments, such as extended half-life factors and non-factor injections like Emicizumab, have transformed patients’ lives, enabling them to lead more normal lives.
Pre-natal diagnosis and carrier detection tests are crucial to prevent hemophilic births and alleviate the financial burden.
The Hemophilia Society Panjim Chapter, an influential NGO in the West Region of HFI, addresses various issues related to haemophilia and strives for the well-being of patients. Treatment for haemophilia patients in Goa is primarily provided by the Goa Medical College & Hospital (GMC).
Issues of medical treatment, education, empowerment& advocacy in States and Centre, including the demand to extend Reservation in government jobs and promotions to persons with Hemophilia, will be deliberated, among others, in the two-day meet.