Haemophilia is a rare disorder in which the blood doesn't clot in the typical way because it doesn't have enough blood-clotting proteins (clotting factors). A Haemophilic, may bleed for a longer time after an injury than you would if your blood clotted properly. The main concern is internal bleeding that an damage organs, tissues and be life threatening. It is a concern when bleeding happens in knees, ankles and elbows. Heamophilia is always a genetic disorder.
Treatment includes regular replacement of the specific clotting factor that is reduced. Newer therapies that don't contain clotting factors also are being used.
Work Initiated:
- Tamil Nadu
- Puducherry
- Manipur
- Karnataka
- Central Government
Action Plan:
Vision: Avoiding preventable disability in Haemophilia - A3 pronged strategy
| Distributed Care Delivery | Data and Insights | Funding and Sustainability |
|
Hub and spoke model of capacity building and distributed care delivery to enable prophylaxis across the state, with establishing as nodal center of excellence Use of next generation therapies that could make even more accessible through home infusions/sub center infusion Development of customized solutions to address location specific hurdles/needs |
Study of outcomes of patients on different therapies/regimens on clinical parameters, costs (drug societal, out of pocket, health system) and quality of life related benefits (HEOR - Health Economics and Outcomes Research) Publication of insights based on the data generated Adoption of data driven treatment protocols |
Development of a pool of funds (private/public/financial products) to ensure patients are able to adhere to lifelong treatment |
Targeted Outcomes:
Benefits to Government:
- Lesser stress on the healthcare system
- Better quality of life for patients and their families
- Cost savings in certain archetypes of patients due to adoption of new treatment regimen
- Leadership position in Haemophilia care delivery
Benefits to PwHA:
- Lower bleed rates and lower chances of disability
- Better quality of life and live to their potential
- Better educational/professional outcomes
- Makes treatment accessible to previously difficult to treat populations
Benefits to Care-giver:
- Lesser trauma due to ease of use; improved quality of life
- Lesser out of pocket expenses due to lesser hospitalization
- Lesser loss of wage days
