NCCS Statement on the Passage of the STAR Childhood Cancer Act and the Right to Try Act
“Passage of the Childhood Cancer STAR Act is a significant achievement in the effort to expand pediatric cancer research and treatments for children with cancer. We are especially encouraged by the survivorship elements included in the bill, including a provision to expand research on late effects on childhood cancer survivors to help improve their quality of life. We are grateful to Senators Jack Reed (D-RI), Shelley Moore Capito (R-WV), Chris Van Hollen (D-MD), and Johnny Isakson (R-GA) for championing the bill in the Senate, and to U.S. Representatives Michael McCaul (R-TX), Jackie Speier (D-CA), Mike Kelly (R-PA), and G.K. Butterfield (D-NC) in the House.
“While passage of the STAR Act was welcome news, we are concerned by passage of Right to Try legislation. NCCS respects the desire of individuals with terminal illness to seek access to experimental treatments. Clinical trials are the best option, and patients who are not eligible to participate in trials can request ‘compassionate access.’ There are barriers to compassionate access, but the Food and Drug Administration (FDA) approves virtually all requests for compassionate access to unapproved therapies. Removing the FDA from any oversight of unapproved therapies will not ensure access to experimental therapies and may cause unintended harm to patients by exposing them to unsafe and ineffective experimental therapies. NCCS joined with other patient advocacy organizations to oppose the Right to Try legislation, and we urge that additional patient safety protections be incorporated at the agency level.”
