Our Priorities
The Texas Bleeding Disorders Advocacy Coalition is focused on ensuring that every person affected by a bleeding disorder can access the life-saving care they need. Its priorities center on protecting full access to all treatment products so patients and providers can make the best medical decisions without unnecessary barriers. The Coalition also works to close long-standing gaps in care by advocating for timely diagnosis and appropriate treatment for women, who are too often overlooked or misdiagnosed. In addition, it recognizes that bleeding disorders affect more than physical health and pushes for meaningful access to mental health resources, supporting the emotional well-being of patients and families alongside their medical care.
access to care
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Access to High Quality Medical Care
Hemophilia and other bleeding disorders are rare and highly specialized disorders. It is critical that access to physicians with specialized expertise in bleeding disorders are available in all health insurance plans, both private and public. Studies of this disorder group have shown that to receive high quality treatment, patients need access to a comprehensive team of health care specialists to formulate the best treatment regime at the appropriate site of care.
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Access to Clotting Factor
Individuals with bleeding disorders require access to products and treatments prescribed by their health care providers. This includes FDA-approved products as well as novel therapies and bypassing agents for individuals with hemophilia and inhibitors.
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Access to Specialty Pharmacy Providers
Clotting factor products fall in a class commonly known as "specialty drugs," which because of their properties, require specialized storage and handling. Given these special handling and storage requirements, someone with hemophilia cannot go to a traditional neighborhood pharmacy to obtain their life-saving medications.
Instead, they receive their medication from what is known as a specialty pharmacy.
Get Involved
Reach out to your chapter today!