February 18, 2005

Pryce Introduces Initiative to Ease the Pain and Suffering of Children with Life-Threatening Conditions

WASHINGTON, D.C. – Congresswoman Deborah Pryce (R-Upper Arlington) today introduced the Compassionate Care for Children Act to improve the pediatric palliative care system for children with life-threatening illnesses and their families. 

“While we have seen remarkable advancements in new medicines and treatments for childhood illnesses, we still lose thousands of children to illness each year,” said Rep. Pryce. “Our human nature wants to fight for a cure and it’s hard to balance that desire with the need to address end-of-life issues. It’s a really tough topic to talk about.” 

“But that’s why this legislation is so important,” Pryce said. “It’s a bold step in a long and difficult road toward eradicating childhood illnesses and building awareness that these challenges exist and they need to be talked about."

The Compassionate Care for Children Act contains two parts. The first will provide grants to children’s hospitals, hospices, and home health agencies to better train and educate professionals who care for sick children. Funding will also be available to start and expand pediatric palliative care programs to provide better care options for children and their families as well as research on pediatric pain and symptom management.

The second section of the bill promotes changes to the palliative care system with the goal of improving the care given to children with cancer and other life-threatening illnesses. The current health care system does not account for the special needs of children and requires children and parents to choose between accessing curative and palliative care. Currently, a child and his or her family must forgo curative treatment for their child to qualify for hospice care and that child must also be diagnosed with only six months to live before he or she can access hospice care. 

Demonstration projects established under this legislation would waive those requirements and allow children to have access to a full range of care options that most appropriately meet their needs.  Should these demonstration projects prove successful, the Medicaid program and the private sector are expected to follow.  
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