This combination of insurance changes, new organizations, and financial pressures is creating new opportunities and new risks in the healthcare system. This paper discusses the financial risks associated with hemophilia—a rare genetic disorder—in the context of these changes. Although hemophilia has unique characteristics, we believe the issues we address in this paper will find application as regulators, insurers, and provider organizations consider how they will financially manage the care for other rare and expensive medical conditions.

The risk of catastrophic costs is not new, and the insurance industry has managed that risk for decades. However, some of the techniques the industry used, such as lifetime limits and medical underwriting, will no longer be allowed under healthcare reform. This report identifies potential financial risks that, while affecting both small and large organizations, may be more difficult for smaller organizations to manage.

This report was commissioned by Baxter Healthcare Corporation.