• Facebook
  • Twitter
  • Youtube
  • Instagram
  • LinkedIn
  • Rss
  • Store
  • Donate
NCCS - National Coalition for Cancer Survivorship
  • About
    • Our Mission
    • Our History
    • The 1986 Club
    • Our Team
      • Policy Advisors
    • Employment
    • Partnerships
    • Financial Information
  • Policy
    • Quality Cancer Care
    • Access to Care
    • Health Equity
    • Redefining Functional Status (RFS)
    • State of Survivorship Survey
      • 2022 Survey
      • 2021 Survey
      • 2020 Survey
    • Cancer Care Planning and Communications Act (CCPCA)
  • Get Involved
    • What is Advocacy?
    • Cancer Policy and Advocacy Team (CPAT)
    • Advocate Engagement Opportunities
    • Survivorship Champions
    • Subscribe to NCCS Updates
    • Elevating Survivorship
    • Survivor Stories
    • Cancerversary
    • State-Based Cancer Advocacy
  • Resources
    • COVID-19 Resources for Cancer Survivors
    • Survivorship Checklist
    • Cancer Survival Toolbox
    • Cancer Rehabilitation
    • Integrative Oncology
    • Publications
      • Talking With Your Doctor
      • Self Advocacy
      • Employment Rights
      • Remaining Hopeful
    • Telehealth
    • Taking Charge of Your Care
    • Care Planning for Cancer Survivors
    • Tools For Care Providers
    • Order Our Resources
  • News
  • Events
    • Ellen L. Stovall Award
      • 2022 Winners
      • Awardees
      • Reception and Sponsorship
      • Committees
      • Nominations
    • Cancer Policy Roundtable (CPR)
      • Fall 2022 CPR
      • Spring 2022 CPR
      • Fall 2021 CPR
      • Spring 2021 CPR
      • Fall 2020 CPR
      • Spring 2020 CPR
    • Cancer Policy and Advocacy Team (CPAT) Virtual Symposium 2022
    • 2022 State of Survivorship Survey Results
    • Webinars
  • Contact Us
  • Search
  • Menu Menu
  • 0Shopping Cart

Your generous year-end donation will be matched $1 for $1    DONATE

NCCS Policy Comments Capitol

NCCS Joins Cancer Leadership Council to Oppose Right to Try Legislation in the House

May 22, 2018/in Cancer News, Cancer Policy Blog, Congress, FDA, NCCS News, Policy Comments Access to Care, Clinical Guidelines, Clinical Trials, Quality Cancer Care NCCS News, Policy Comments
US CapitolThe National Coalition for Cancer Survivorship joined with other organizations of the Cancer Leadership Council (CLC) in a letter to House leadership to oppose House consideration of the Trickett Wendler, Frank Mongiello, Jordan McLinn, and Matthew Bellina Right to Try Act (S. 204).The legislation passed the House on May 22 and goes to the President for his signature.

The barriers to access to unapproved therapies do not relate to FDA action on requests. Therefore, limiting FDA review will not ensure access to experimental therapies, as suggested by Right to Try proponents. Removing FDA from oversight of the patient requests could put patients at risk due to unsafe and ineffective experimental therapies.CLC Letter to House leaders on Right to Try bill

Read the full letter below.


CANCER LEADERSHIP COUNCIL

A PATIENT-CENTERED FORUM OF NATIONAL ADVOCACY ORGANIZATIONS
ADDRESSING PUBLIC POLICY ISSUES IN CANCER

May 21, 2018

The Honorable Paul Ryan
Speaker
United States House of Representatives
H-232, The Capitol
Washington, DC 20515

The Honorable Nancy Pelosi
Minority Leader
United States House of Representatives
H-204, The Capitol
Washington, DC 20515

Dear Speaker Ryan and Leader Pelosi:

The undersigned cancer organizations, representing patients, physicians, other health professionals, and researchers, write to express opposition to House consideration of the Trickett Wendler, Frank Mongiello, Jordan McLinn, and Matthew Bellina Right to Try Act (S. 204).

Our organizations have in recent months expressed serious reservations about Right to Try legislation, because we were concerned that the measures could expose patients to harm unnecessarily. The current Food and Drug Administration expanded access program results in approval of virtually all requests for access to unapproved therapies, so removing the agency from the review of such requests is not necessary. The barriers to access to unapproved therapies do not relate to FDA action on requests. Therefore, limiting FDA review will not ensure access to experimental therapies, as suggested by Right to Try proponents. Removing FDA from oversight of the patient requests could put patients at risk due to unsafe and ineffective experimental therapies.

Despite our fundamental misgivings about the Right to Try legislative effect, we have acknowledged that the House or Representatives-passed version of the bill (H.R. 5247) incorporated some patient safeguards, including more robust informed consent requirements, FDA oversight of the process, and a more precise definition of eligibility for the pathway to unapproved therapies.

The plan of the House of Representatives to consider the Senate-passed bill and essentially abandon its work in strengthening the Right to Try legislation is not in the best interests of the cancer patients and health care professionals we represent. This step moves in exactly the wrong direction.

We urge the House to withhold action on S. 204, the Senate-passed Right to Try bill, and instead stand by the current expanded access program that balances the demands of patients for access to unapproved therapies and the responsibility of FDA to protect patient safety.

Sincerely,

Cancer Leadership Council

American Society of Clinical Oncology
The Children’s Cause for Cancer Advocacy
Fight Colorectal Cancer
Hematology/Oncology Pharmacy Association
International Myeloma Foundation
Kidney Cancer Association
The Leukemia & Lymphoma Society
Lymphoma Research Foundation
National Coalition for Cancer Survivorship
Prevent Cancer Foundation
Susan G. Komen

# # #

Download the letter » [PDF]


Related Posts

https://canceradvocacy.org/policy-comments/nccs-joins-cancer-leadership-council-oppose-right-to-try-act/

https://canceradvocacy.org/policy-comments/nccs-letter-serious-reservations-right-to-try-legislation/


Read more NCCS Policy Comments »

Tags: clinical guidelines, clinical trials, Congress, drug approvals, FDA, policy comments
Share this entry
  • Share on Facebook
  • Share on Twitter
  • Share on WhatsApp
  • Share on LinkedIn
https://canceradvocacy.org/wp-content/uploads/2018/03/NCCS-Policy-Comments-Capitol.jpg 600 1200 actualize https://canceradvocacy.org/wp-content/uploads/2020/06/NCCA-Logo.png actualize2018-05-22 16:40:292020-10-21 09:21:08NCCS Joins Cancer Leadership Council to Oppose Right to Try Legislation in the House

Latest News

NCCS Letter to HHS

NCCS Urges CMS to Preserve Access to DIEP Flap Breast Reconstruction

June 1, 2023
Today, the Centers for Medicare and Medicaid Services (CMS) hosted a public meeting, in which they sought input on its decision to…
Read more
https://canceradvocacy.org/wp-content/uploads/HHS-Humphrey-bldg-1200-1030x515-1.jpg 515 1030 Kara Kenan https://canceradvocacy.org/wp-content/uploads/2020/06/NCCA-Logo.png Kara Kenan2023-06-01 16:53:292023-06-01 16:53:29NCCS Urges CMS to Preserve Access to DIEP Flap Breast Reconstruction

Webinar – Survivorship at Atrium Health Wake Forest Baptist Comprehensive Cancer Center: Creating a Practical Workflow

May 12, 2023
The National Coalition for Cancer Survivorship (NCCS) hosted a Survivorship Champions webinar about survivorship care implementation,…
Read more
https://canceradvocacy.org/wp-content/uploads/Atrium-Health-Wake-Forest-Baptist-update-POST.jpg 600 1200 NCCS Staff https://canceradvocacy.org/wp-content/uploads/2020/06/NCCA-Logo.png NCCS Staff2023-05-12 12:42:192023-05-12 21:48:11Webinar – Survivorship at Atrium Health Wake Forest Baptist Comprehensive Cancer Center: Creating a Practical Workflow

Sandra Finestone, PsyD: Be Bold and Don’t Hesitate – A 30-year Survivor’s Advice on Advocacy

May 8, 2023
Advocate Spotlight: Sandra Finestone, PsyD A cancer diagnosis can be overwhelming and life-changing, but for Sandra Finestone, it…
Read more
https://canceradvocacy.org/wp-content/uploads/Sandra-Finestone-Advocate-Spotlight-Blog-Banner.png 600 1200 NCCS Staff https://canceradvocacy.org/wp-content/uploads/2020/06/NCCA-Logo.png NCCS Staff2023-05-08 13:42:472023-05-11 10:49:23Sandra Finestone, PsyD: Be Bold and Don’t Hesitate – A 30-year Survivor’s Advice on Advocacy

Take Action

Link to: Survivorship Champions

Become a Survivorship Champion

Survivorship Champions is a program for all clinicians and researchers, both oncology and primary care, who are interested in improving survivorship care and primary care’s role in caring for cancer survivors.

Join us today! »
Link to: Cancer Policy and Advocacy Team (CPAT)

Join CPAT

The NCCS Cancer Policy & Advocacy Team (CPAT) is a program for survivors and caregivers to learn about pressing policy issues that affect quality cancer care in order to be engaged as advocates in public policy around the needs of cancer survivors.

Link to: Survivor Stories

Share Your Story

NCCS represents the millions of Americans who share a common experience – the survivorship experience – living with, through and beyond a cancer diagnosis.

STAY CONNECTED

Together we can improve cancer care for survivors! Sign up to be the first to know about cancer policy issues and ways to take action

  • This field is for validation purposes and should be left unchanged.

  • About
    • Our Mission
    • Our History
    • The 1986 Club
    • Our Team
      • Policy Advisors
    • Employment
    • Partnerships
    • Financial Information
  • Policy
    • Quality Cancer Care
    • Access to Care
    • Health Equity
    • Redefining Functional Status (RFS)
    • State of Survivorship Survey
      • 2022 Survey
      • 2021 Survey
      • 2020 Survey
    • Cancer Care Planning and Communications Act (CCPCA)
  • Get Involved
    • What is Advocacy?
    • Cancer Policy and Advocacy Team (CPAT)
    • Advocate Engagement Opportunities
    • Survivorship Champions
    • Subscribe to NCCS Updates
    • Elevating Survivorship
    • Survivor Stories
    • Cancerversary
    • State-Based Cancer Advocacy
  • Resources
    • COVID-19 Resources for Cancer Survivors
    • Survivorship Checklist
    • Cancer Survival Toolbox
    • Cancer Rehabilitation
    • Integrative Oncology
    • Publications
      • Talking With Your Doctor
      • Self Advocacy
      • Employment Rights
      • Remaining Hopeful
    • Telehealth
    • Taking Charge of Your Care
    • Care Planning for Cancer Survivors
    • Tools For Care Providers
    • Order Our Resources
  • News
  • Events
    • Ellen L. Stovall Award
      • 2022 Winners
      • Awardees
      • Reception and Sponsorship
      • Committees
      • Nominations
    • Cancer Policy Roundtable (CPR)
      • Fall 2022 CPR
      • Spring 2022 CPR
      • Fall 2021 CPR
      • Spring 2021 CPR
      • Fall 2020 CPR
      • Spring 2020 CPR
    • Cancer Policy and Advocacy Team (CPAT) Virtual Symposium 2022
    • 2022 State of Survivorship Survey Results
    • Webinars
  • Contact Us

National Coalition for Cancer Survivorship
8455 Colesville Road  |  Suite 930  |  Silver Spring, MD 20910
877-NCCS-YES  |  info@canceradvocacy.org
Privacy Policy  |  Terms and Conditions

Copyright © 1995-2023 by the National Coalition for Cancer Survivorship
National Coalition for Cancer Survivorship, NCCS, Cancer Survival Toolbox, and related Logos are registered in the United States as trademarks of the National Coalition for Cancer Survivorship.

Health Care Roundup: Drug Pricing Plan, 2019 Premium Increases, Short-Term Plans,...NCCS Starburst 250pxNCCS Starburst 250pxHealth Care Roundup: 2018 Cancer Status Report; Childhood Cancer STAR Act Passes;...
Scroll to top
Get Updates From NCCS

Be the first to hear about cancer policy and survivorship issues! Subscribe and receive the biweekly NCCS Health Care Roundup, invites to webinars and events, and more.

  • This field is for validation purposes and should be left unchanged.

Connect With Us

Twitter     Facebook     Instagram     LinkedIn     YouTube

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