On the Hill.. Lobbying Days
Under the umbrella organization Alliance for Childhood Cancer, hundreds of pediatric cancer advocates banded together last week in Washington DC. Along with fellow advocates, representatives from the Taylor Matthews Foundation lobbied Congress to pass legislation that addresses pediatric cancer research funding, new treatment protocols, and survivorship issues.
Currently at issue is the Survivorship, Treatment, Access, and Research (STAR) Act. STAR passed unanimously in the Senate this past March and has the support of 364 Representatives, but has not yet been brought to a vote in the House. Once passed, the Act will require funding of $30 million per year for five years. This act focuses on increased governmental funding, enhanced access to not-yet-approved adult drugs, as well as adult approved drugs and funding and research for the issues childhood cancer survivors face later in life.
It was both profoundly sad and deeply empowering to be among so many parents who have faced the heartache of a sick child. The presence of grieving and fighting families reminded me that pediatric cancer is a national problem and one that must be addressed aggressively and now. We lobbied for Taylor, other children that have lost their battle, future generations of children, and families in battle now.
The STAR Act could mean the difference of a lifetime to children fighting pediatric cancer. Please help us help families in battle by contacting your legislators and urge them to pass and fund the STAR Act. You can find the names and contact information for your Representatives here. They need to hear from constituents like you about how important this issue is.
All our children deserve a bright, healthy, and productive future. Thank you for helping us help sick children fight the battle of their lives.
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