Advocacy News

Click here聽for the combined issue statement from the Coalition for Hemophilia B, the Hemophilia Federation of America, the National Hemophilia Foundation and the Hemophilia Alliance supporting bi-partisan Alexander-Murray Legislation.

(Full text available in pdf and below)

People with Hemophilia and Other Bleeding Disorders Urge their Senators to Support Alexander-Murray Market
Stabilization Legislation

Senators Lamar Alexander (R-TN) and Patty Murray (D-WA) have released bipartisan legislation that
seeks to stabilize the individual health insurance market. The National Hemophilia Foundation,
Hemophilia Federation of America, Coalition for Hemophilia B, and Hemophilia Alliance 鈥 which
represent people with hemophilia, von Willebrand Disease, and other bleeding disorders and the
hemophilia treatment centers (HTCs) that care for them 鈥 are united in supporting this first step in
ensuring market stabilization and ask Senators to co-sponsor and support this proposal.

People with hemophilia and other bleeding disorders live with a painful, lifelong, chronic condition that
requires expensive medication and specialized care provided by HTCs and other specialists. We support
Alexander-Murray, as currently drafted, because it attempts to strengthen the individual insurance market for all Americans, including those with expensive, chronic conditions. In particular, we support this legislation because it:

  • Appropriates the cost-sharing reductions (CSR) payments, which are expected to lower
    premium costs;
  • Reinstates funds for outreach and enrollment activities, which will increase enrollment in health
    insurance; and
  • Streamlines the 1332 state waiver process to facilitate state innovation while
    maintaining patient protections, especially for low-income people and individuals with serious
    health care conditions.

Our community members will suffer without access to comprehensive, affordable insurance. As a result,
we support Alexander-Murray as a critical first step towards stabilizing health insurance markets and
ensuring access to care for our patient community. The bleeding disorders community urges Senators to
support the Alexander-Murray legislation!

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