As the world observes World Hemophilia Day on 17 April every year to generate awareness over the disease, it is equally important to know to be away from the disease.
Haemophilia is a rare disorder of the blood, in which it does not clot normally because it lacks sufficient blood-clotting proteins. Till recently, the disease was quite lesser-known but with the Covid-19 pandemic wreaking havoc over human lives from the past year, awareness of Haemophilia has become much essential.
The theme for this year is ‘Adapting to Change’.
In India, the estimated number of Hemophilia patients is approximately 1,36,000, which is 1 in 10,000 male births. The diagnosis rate of Hemophilia is considerably low, at around 13%.
Hemophilia amongst children is a growing concern, with 91% of patients below the age of 18 getting Episodic Therapy, that is, therapy during emergencies.
Awareness about the disease amongst stakeholders, accessibility to treatment centers and therapy, and quality factor availability are challenges in the hemophilia ecosystem that are increasing with the current pandemic.
Improved standards of care could be achieved through prophylaxis, and to sustain this, home therapy is essential. In India, while home therapy in few places have been initiated, it needs to cover an increased number of patients for seamless adoption that will ensure timely and continual treatment leading to improved quality of life.
Dr Sandeep Arora, Head of Medical Affairs, Takeda India, said, “Home care and therapy is currently not a normal practice in India. During the pandemic, some institutes supported and allowed home therapy, which proved instrumental in managing the disease. As we move forward in supporting patients and bringing value to them, along with considering home therapy, creating a standard protocol and guideline for treatment will further ensure high standards of care and sustained management of the disease.”