A landmark decision was recently taken by the Government of Kerala, to provide Hemlibra (emicizumab) to all children up to 18 years of age for the treatment of Hemophilia A. This groundbreaking and inclusive decision under the Aashadhara (meaning perpetual stream of hope) scheme, is a momentous step forward in establishing prophylaxis as the Standard of Care within the State and will lead to significantly enhancing the quality of life for young patients by reducing the need for frequent hospital visits and the challenges of intravenous injections. Ashadhara is the comprehensive care program of the Government of Kerala for the treatment and management of Haemophilia and other hemoglobinopathies wherein treatment is given free of cost. While hemophilia remains largely under-diagnosed, it is estimated that approximately 1460 PwHA reside in Kerala as per the State’s registry. Through this initiative, more than 300 children will receive free drug support. This move elicited overwhelmingly positive responses from the PAG fraternity:
“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.
Many patients with hemophilia are likely not getting diagnosed, so there is an immediate need to reach out to the community and improve diagnostics across the country. Once a diagnosis is made, there is also a considerable gap in providing patients with the standard of care. The standard of care globally is prophylaxis, but most patients in India still rely on on-demand therapy. Furthermore, many older hemophiliacs in our community suffer from severe joint disease and damaged joints and are crippled. Consequently, most patients with hemophilia die young due to severe bleeding, such as intracranial bleeds and other major bleeds. Some also have transfusion-related infections like HIV, hepatitis B, and hepatitis C. But emicizumab heralds a new era of comprehensive care, treatment and support for PwHA and we truly welcome this initiative.
All our efforts were strongly rooted in the patient's interest. Our advocacy was aimed at achieving zero bleeds for all PwHA. Our journey with emicizumab prophylaxis started in 2019, when we attained zero bleed in 2 kids with inhibitors. It is indeed a wonderful drug giving miraculous results. I am truly grateful for the technical committee recommendations to be accepted so soon. And I am thrilled with our partnership with Roche to provide these children with a bright future where they can truly realize their full potential.
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.