Haemophilia Federation India (HFI), a non-profit self-help organisation working for people with haemophilia, and Shire India, a leading global biotechnology company focused on serving people with rare diseases, came together to launch a unique initiative to turn the spotlight on haemophilia and its management.
Delhi’s iconic monument, Qutub Minar was lit up with red lights as part of the World Haemophilia Day campaign to increase awareness and understanding of this genetic disease in the society. Haemophilia afflicts 1 in 10,000 people and with the right treatment and holistic care, these patients can potentially lead a near-normal life.
A panel discussion involving Vikash Goyal, president, Haemophilia Federation India, Mukesh Garodia, vice–president – development, Haemophilia Federation India, Vinita Srivastava, National Consultant and Coordinator, Blood Cell – NHM, MoHFW, Dr Tulika Seth, Professor Haematology, All India Institute of Medical Sciences (AIIMS), Dr. Brigadier Ajay Sharma, Professor and Head, Department of Haematology and Centre for Stem Cell Transplantation and Research, Sir Ganga Ram Hospital and Vineet Singhal, Country Head, Shire India was organised in the backdrop of Qutub Minar that defined the vision of managing haemophilia, providing much-needed hope for the patients to lead a near-normal life.
The panel focused on the topic of improving and sustaining care for people with haemophilia, improving lives by training experts in the field to facilitate early diagnosis; advocating for sufficient supply of quality treatment products; and educating and empowering people with right resources and information to help them live better.
Vikash Goyal said: “Till date, Haemophilia Federation India has identified over 20,000 children and adults with hemophilia. However, considering the population of India and lack of awareness among the people this figure may be closer to 1.3 lakh. Therefore, there is a huge need for trained doctors and testing facilities to ensure identification and diagnosis of the people suffering from haemophilia. We are proud to be part of this initiative as we believe that a well-informed society and patients can make a difference in managing the haemophilia disease conditions. Today is a landmark moment as the stakeholders have come together under the magnificent iconic Qutub Minar to mark the beginning of a national commitment to address haemophilia.”
Dr Tulika Seth, Professor Haematology, All India Institutes of Medical Sciences (AIIMS) said, “With access to adequate factor replacement, appropriate monitoring and good physiotherapy, all children with haemophilia can lead productive and pain-free lives. It is important to inform the public about this disorder, so that if children develop joint swellings after injury or increased bleeding, the families can come forward for early diagnosis. We need a network of trained health care facilities and providers so that the families do not need to travel far off centres for diagnosis or treatment.”
Vineet Singhal, Country Head, Shire India, commented: “At Shire, we have a unique responsibility to champion underserved patient communities and haemophilia is one of them. The patients with haemophilia may have a difficult path to diagnosis and access to care and therefore we are focused on building partnerships in such patient communities around the world to empower them with education, expand awareness, enable earlier diagnosis and provide best-in-class high quality and efficacious therapies. Today is an important day for us and we are privileged to be part of this national commitment to raising awareness about haemophilia.”
Haemophilia is a hereditary genetic blood disorder that impairs the body’s ability to control blood clotting where patients bleed for longer time spontaneously or following an injury. A serious disorder, it puts the patient at risk of his life due to excessive bleeding. The awareness about the disease and its management has been the biggest hurdle behind the inaccessibility of appropriate treatment for patients.