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STAR Childhood Cancer Act

NCCS Statement on the Passage of the STAR Childhood Cancer Act and the Right to Try Act

May 25, 2018/in Cancer News, Cancer Policy Blog, NCCS News Access to Care, Clinical Trials NCCS News /by actualize

Silver Spring, MD – The National Coalition for Cancer Survivorship issued the following statement regarding passage of both the Childhood Cancer Survivorship, Treatment, Access, and Research (STAR) Act (S. 292) and the Trickett Wendler, Frank Mongiello, Jordan McLinn, and Matthew Bellina Right to Try Act (S. 204). Both are now headed to the President’s desk to be signed into law.“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.”

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https://canceradvocacy.org/policy-comments/nccs-joins-cancer-leadership-council-to-oppose-right-to-try-legislation-in-the-house/


Tags: Cancer Survivorship, childhood cancer, clinical trials, Congress, drug approvals, FDA, right to try
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  • About
    • Our Mission
    • Our History
    • Our Leadership
      • Policy Advisors
    • Employment
    • Partnerships
    • Financial Information
  • Policy
    • Quality Cancer Care
    • Access to Care
    • Health Equity
    • Redefining Functional Status (RFS)
    • 2020 State of Cancer Survivorship Survey
    • Cancer Care Planning and Communications Act (CCPCA)
  • Get Involved
    • What is Advocacy?
    • Cancer Policy and Advocacy Team (CPAT)
    • Elevating Survivorship
    • Survivor Stories
    • Cancerversary
    • State Based Cancer Advocacy
  • Resources
    • COVID-19 Resources for Cancer Survivors
    • Survivorship Checklist
    • Cancer Survival Toolbox
    • Telehealth
    • Publications
      • Talking With Your Doctor
      • Self Advocacy
      • Employment Rights
      • Remaining Hopeful
    • Cancer Convos Podcast
    • Taking Charge of Your Care
    • Care Planning for Cancer Survivors
    • Tools For Care Providers
    • Order Our Resources
  • News
  • Events
    • From Shadows to Life: A Biography of the Cancer Survivorship Movement
    • Ellen L. Stovall Award
      • 2020 Stovall Awards
      • Honorees
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      • Committees
      • Reception
      • Nominations
    • Cancer Policy Roundtable
      • Fall 2020 Cancer Policy Roundtable
      • Spring 2020 Cancer Policy Roundtable
    • Cancer Policy and Advocacy Team (CPAT) Symposium 2020
    • Webinars
  • Contact Us

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Harmar Brereton, MD

Founder
Northeast Regional Cancer Institute

 

“Perhaps one of the most impactful collaborations in Dr. Brereton’s extraordinary career remains his early work and long friendship with Ellen Stovall. Through him, and in turn through the thousands of lives he has touched, Ellen’s work continues, and her mission lives on.”

—Karen M. Saunders
President, Northeast Regional Cancer Institute