“Hemophilia Federation of India extends its deepest gratitude to Kerala Chief Minister Pinarayi Vijayan and Health Minister Mrs. Veena George for this revolutionary decision. To the children and their families, this means more days at school, fewer disruptions, and a chance to live a fuller, more active life. We celebrate this compassionate initiative and stand together in our commitment to ensuring comprehensive care for those with rare diseases like hemophilia.”
On this watershed occasion, Mrs. Veena George (Minister of Health & Women and Child Development - Kerala) commented; “We are committed to providing comprehensive care for hemophilia patients, ensuring they receive international-standard treatment and support. Our goal is to enhance their quality of life and make innovative treatments accessible. Aligning with this mission, Kerala has taken pioneering steps. We are the first State in India to provide prophylaxis care for patients under 18 years of age; reducing the treatment burden on patients and caregivers such as frequent hospital visits, caregiver job loss etc., typically associated with on demand therapy. We decentralized treatment from medical colleges to district and taluka level hospitals, making it more accessible for PwHA. Furthermore, we are providing select patients with innovative therapies like emicizumab.”
PJPs, TAEs, Public Account Partners and Access Partners from our Kerala Cluster have worked tirelessly with many stakeholders across the ecosystem to make this possible. The team actively engaged with Nodal Officers, District Day Care Centers, State level HTCs and KOLs to advocate the use of Hemlibra. An integrated stakeholder engagement strategy, consistently enabling the Technical Committee Experts, assisting in patient registry development, smooth coordination with the State’s procurement entity on supply chain, awareness camps and capacity building efforts led to this victory.
Here are some reflections shared by two of the key stakeholders; Dr. Rahul UR (State Nodal Officer - Child Health & Rare Diseases, Government of Kerala) and Dr. Vijaykumar (Pediatrician & Former Medical Supritendent of Aluva Hemophilia Treatment Center) who is fondly touted as the ‘Father of Hemophilia Care’ in Kerala.
Media too celebrated this trailblazing move by the Government of Kerala. Here are some media snippets.
This win with the Kerala Government, while a significant one, is only the beginning in our efforts towards establishing prophylaxis as the Standard of Care within India. Kerala has truly paved the way and served as a role model for other State Governments too. We will continue with our advocacy, awareness and access efforts, as we stand firm in our commitment towards bettering the lives of PwHA.
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