New Delhi: The Haemophilia & Health Collective of North (HHCN), a registered body of India’s leading healthcare professionals working in the domain of haemophilia care for over two decades, in collaboration with National Health Mission (NHM) representatives from 16 states have proposed a first-of-its-kind Indian guidelines for treatment of Persons with Haemophilia (PwH).
The new guidelines recommend:
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Use of prophylaxis as standard of care (SOC) in haemophilia patients to prevent them from bleeding,
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Clearly articulates the need for comprehensive care including significance of timely diagnosis, physiotherapy and multidisciplinary care for PwH
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First time a separate category for Non-factor replacement (Currently available as Emicizumab) is incorporated in the selection criteria. The real world experience bears out the rapid switchovers to Non-factor products and which remains the drug of choice
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Scoring based patient selection criteria so that patients get maximum benefit from products. A relevant scoring pattern to identify the patients who qualify for prophylaxis with Non-factor replacement potentially leading to improved patient adherence with better treatment outcomes
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Optimal deployment of resources for severe Hemophilia A patients including high bleeders, pediatric population, patients with inhibitors,
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Budgetary calculation for payers and/or policymakers to understand the budgetary requirements of each state and central reimbursement bodies
People with severe haemophilia bleed frequently and often spontaneously, including repeated bleeds into joints and muscles. In addition to disease severity, the frequency of bleeding also varies by bleed site. Depending on the area affected, these bleeds can be debilitating or even life threatening. Repeated bleeding into joints can cause hemophilic arthropathy, which can result in physical disability. As a result, most of the Haemophilia patients are physically challenged, and need joint replacements at an early age.
Current treatment modalities in India primarily focus on on-demand therapy – FVIII replacement to address bleeding episodes as they occur. However, exposure to exogenous Factor VIII could lead to development of inhibitors. This renders treatment with Factor VIII ineffective.
Some of the challenges faced under the current treatment regimen are:
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Development of inhibitors to Factor VIII complicates treatment, leading to the use of bypassing agents that are significantly more expensive. Inhibitor development is associated with significant increase in disabilities including joint damage, morbidities and even mortality.
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The treatment burden is high because intravenous administration occurs several times weekly. This is particularly challenging in pediatric population
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Lack of adherence by patients living far away
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Impact on quality of life of patients and caregivers due to frequent hospitalization
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Increase in overall cost of treatment due to frequent travel, regular hospitalisation, loss of wages
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Impact on schooling (absenteeism, learning outcomes, dropouts) or work (impact on performance, early retirement) or family life; emotional costs (trauma for the child/care givers), premature death
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Increased health system costs: Greater stress on the health system due to increased hospitalization
