· The estimated number of patients by prevalence is ~1,36,000 (1 in 10,000 male births(1)), and out of that, ~19,690(2) Hem-A patients are registered
· About 85.7% till 12 years of age face joint disability(3)
· Partners with sand artist Padma Shri Sudarshan Pattnaik to drive awareness on World Hemophilia Day
Bhubaneswar: On World Hemophilia Day, Takeda India, part of Takeda Pharmaceutical Company Limited, a global biopharmaceutical company, reiterated its commitment to patients by pledging to continue its endeavor in addressing the three A’s for Hemophilia management in the country: Awareness, Accessibility, and Availability.
In India, the estimated number of patients by prevalence is approximately 1,36,000, which is 1 in 10,000 male births(1). Out of that, ~19690 Hem-A patients are registered (2). 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 (2), 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.
Gopal Agrawal, Head of Market Access and Pricing, Takeda India, said, “Takeda is a patient-focused organization and for us, supporting them to live a considerably improved quality of life is key to all our efforts. We are continually collaborating with stakeholders across the hemophilia landscape to positively impact patients’ lives through holistic care beyond medicines across the country. We are also relentlessly exploring innovative models to ensure better accessibility and the wider availability of Anti Hemophilic Factor (AHF) to improve the compliance of treatment in the country and also to create wider awareness, accessibility, and infrastructure support for patients.”
Improved standards of care can be achieved through prophylaxis, and for this to be sustained, home therapy is essential. In India, while home therapy in few places has 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.”
As a part of the World Hemophilia Day 2021 awareness initiative, Takeda partnered with world-renowned Padma Sri Sudarshan Pattnaik, who, through sand art, depicted the importance of partnerships and alliances across the Hemophilia ecosystem to address the growing disease burden in India and the world. The sand sculpture created on April 17 will be on display at Puri beach in Odisha for over three days to drive awareness and conversations around Hemophilia.
Commenting on the collaboration, Padma Shri Awardee Sudarsan Pattnaik, Sand Artist, said, “It is my privilege to be able to join with Takeda and use my talent to sensitize for this very important cause. Awareness campaigns such as these go a long way in ensuring citizens are aware of this condition and can reach out for treatment when needed. I am delighted to contribute through my art.”
Takeda has been at the forefront of creating awareness about Hemophilia through drives and initiatives. It offers innovative therapies to support Hemophilia patients and their families. The company has a patient support program, Purna Samparq, being implemented by an approved third party to address the critical unmet needs of Hemophilic patients. The program offers a range of services to patients like counseling, diagnostic, physiotherapy, nursing, and education support under the consulting physician’s guidance.