NHF supports legislation to increase minimum lifetime caps on private health insurance plans to $10 million and provide an annual update for inflation thereafter. For people with high-cost chronic disorders such as hemophilia, lifetime caps pose a serious threat that affects health care, career choices and financial stability. Increasing the minimum lifetime cap will likely result in savings for federal and state governments by allowing individuals with high medical costs to maintain private insurance rather than be forced onto Medicare and Medicaid. Moreover, there is no cost to the federal government in raising lifetime caps.

The Health Insurance Coverage Protection Act
The Health Insurance Coverage Protection Act (S. 2706), introduced by Senator Dorgan (D-ND), increases the minimum lifetime caps in private insurance plans to $10 million with an annual inflationary index.  The legislation will allow people with bleeding disorders and other high-cost chronic conditions who have private insurance to maintain their coverage and not have to seek public assistance such as Medicaid or state high-risk pools. 

Medigap policies are a form of supplemental insurance that pays for expenses not covered by Medicare, including the 20% co-payment which most people with chronic high-cost conditions like hemophilia simply cannot afford. Currently, people who qualify for Medicare because of age may purchase these policies. However, in 26 states they are not available to people who qualify because of a disabling condition, including complications of hemophilia.

The Medigap Access Improvement Act
The Medigap Access Improvement Act (H.R. 1282) expands Medigap open enrollment to include beneficiaries in all 50 states who qualify as disabled and under the age of 65. This legislation will help these beneficiaries obtain assistance with the high costs of their life-saving therapies without placing a significant financial or administrative burden on the Medicare program. Most importantly, this change will provide the same opportunity to purchase the Medigap policies offered to beneficiaries 65 years old and older.

NHF is seeking additional funding from the Centers for Disease Control and Prevention (CDC) to support the network of federally funded hemophilia treatment centers (HTCs) to help them meet the needs of the growing population of women diagnosed with or at risk for a bleeding disorder. HTCs provide a range of comprehensive services for people with bleeding and their families within one treatment facility.