Patient Advocacy to Promote Public Awareness About Thrombosis and Thrombophilia

Abstract

For the last 22 years I have worked as a lobbyist in Washington, DC representing medical and healthcare organizations on issues ranging from funds for biomedical research to payment for specific medical technologies and services. In that time I have learned that health policy decisions are strongly affected by the organized voice of patients and their families. Whether the issue has been liver disease, hemophilia, inflammatory bowel disease, or juvenile diabetes, Congress and various Administrations have responded to the messages brought by individuals personally affected by these disorders. One only needs to look at the number of targeted treatment and research activities funded by the federal government to appreciate just how potent patient advocacy can be. These groups may work in different areas, but they have many goals in common. First, they strive to build public awareness about the disease or condition. This is especially important for rare or “orphan” diseases but is no less necessary for common conditions like heart disease or cancer. Second, they seek to translate greater awareness into changes in public attitudes and policy. For example, mental health advocates have worked to eliminate the stigma of mental illness, while seeking improved therapies and insurance coverage. The Juvenile Diabetes Foundation (JDF) has waged a successful campaign to increase federal …