• Facebook
  • Twitter
  • Youtube
  • Instagram
  • LinkedIn
  • Rss
  • Store
  • Donate
NCCS - National Coalition for Cancer Survivorship
  • About
        • About Us

        • NCCS is the oldest cancer survivor-led non-profit organization in America. We advocate for quality cancer care for all touched by cancer.

        • About NCCS

        • Our Mission
        • What is Advocacy?Learn about the different types of cancer advocacy, from personal advocacy to public interest advocacy.
        • Our HistoryRead how NCCS’s leaders coined the term “cancer survivor,” and established the nation’s first survivor-led non-profit organization.
        • Our Team
        • Financial Information
        • Employment
        • Contact Us
        • Support Our Mission

        • Make A GiftSupport our mission of quality cancer care for all with a gift to NCCS.
        • The 1986 ClubMake a monthly commitment to support NCCS, empower cancer survivors, and advance public policy.
        • Ways to GiveLearn about other ways you can contribute to NCCS such as planned giving, employer matches, shopping online, and more.
        • Partnerships
  • News
    • NCCS News
    • Advocate SpotlightEach month, NCCS highlights a cancer survivorship advocate, sharing their story and the work they do in their communities.
    • Policy CommentsRead NCCS’s comments to Congress, HHS, and other federal policymakers in Washington, DC on proposed rules and legislation.
    • Issue StatementsRead NCCS statements on pressing issues and developments in Washington affecting cancer survivors and their families.
  • Policy
        • Policy

        • Public policy is government action, in the form of legislation, regulation, funding, and other actions. Public policy affects people with cancer and the cancer care system in many ways.

        • Our Policy Priorities

        • Quality Cancer CareQuality cancer care is essential for patients. Learn how NCCS and others define quality.
        • Access to CareNCCS believes cancer care and clinical trials should be affordable and accessible to everyone.
        • Health EquityThe cancer experience is not the same for everyone. NCCS works on policy efforts to reduce disparities in outcomes.
        • Current Issues

        • Comprehensive Cancer Survivorship Act (CCSA)The CCSA is a large comprehensive bill introduced in Congress that aims to improve quality of care in all stages of a diagnosis.
        • Cancer Care Planning and Communications Act (CCPCA)CCPCA is a bill that would provide a billable Medicare service code for cancer care planning.
        • DIEP Flap AccessNCCS advocates for protection of access to DIEP Flap Breast Reconstruction Surgery for all breast cancer survivors.
        • Policy CommentsRead NCCS’s comments to Congress, HHS, and other federal policymakers in Washington, DC on proposed rules and legislation.
        • Issue StatementsRead NCCS statements on pressing issues and developments in Washington affecting cancer survivors and their families.
        • Quality Measurement Research
  • Get Involved
        • Get Involved

        • Whether you’re new to cancer advocacy or already have experience as an advocate, there are numerous ways you can get involved with NCCS.

        • Join NCCS

        • Cancer Policy and Advocacy Team (CPAT)CPAT is a program for survivors and caregivers to learn about pressing issues that affect quality cancer care, in order to be engaged as advocates in public policy.
        • Elevating SurvivorshipA patient-led initiative — NCCS mentors advocates (Elevate Ambassadors) to fill vital gaps in survivorship care in their community.
        • Survivorship ChampionsAn NCCS program for clinicians and researchers who are interested in improving care for cancer survivors.
        • Advocacy OpportunitiesThis page provides a list of upcoming events, webinars, conferences, and advocacy campaigns from NCCS and other leading cancer organizations.
        • Connect with Us

        • Subscribe to NCCS Updates
        • Follow NCCS on Social Media
        • Survivor Stories
        • Cancerversary
        • Support NCCS

        • Make A Gift
        • Ways to Give
        • The 1986 Club
  • Survivorship Survey
        • State of Cancer Survivorship

        • NCCS conducts an annual State of Survivorship Survey, in partnership with Edge Research, to delve into the cancer patient and survivor journey. This study captures a range of perspectives to better understand how NCCS can support its mission to advocate for quality cancer care for all.

        • Reports by Year

        • 2023 Survey ReportThe 2023 Survey explored the caregiver experience for the first time, and features new data on the effect of cancer treatment on employment.
        • 2022 Survey ReportThe 2022 Survey found significant disparities in cancer care that impact people of color, young adults, women, and those with metastatic cancer, at higher rates.
        • 2021 Survey ReportThe 2021 Survey demonstrated that when patients receive quality care, have excellent support, and have financial resources, they are more likely to have positive outcomes.
        • 2020 Survey ReportIn the 2020 Survey, survivors reported that their care team is not helpful at addressing some common side effects of their cancer such as fatigue, anxiety, and depression.
  • Survivorship Checklist
        • Cancer Survivorship Checklist

        • The Cancer Survivorship Checklist is designed to be a simple, straightforward tool patients and caregivers can use as a guide for information critical to their care wherever they are on the cancer care continuum.

        • Start Your Cancer Survivorship Checklist
        • Survivorship Checklist Guide for Clinicians
        • Resources for Cancer Survivors

        • Survivorship ResourcesA collection of resources that provide information about navigating the cancer journey.
        • Cancer RehabilitationA supportive health care service that helps improve a person’s functioning during and after cancer treatment.
        • Integrative OncologyA field that combines traditional cancer treatments with therapies that support a person’s natural healing ability.
  • Resources
        • Resources

        • NCCS provides a wide variety of resources for both patients and caregivers.

        • Resources for Survivors and Caregivers

        • Cancer Survival ToolboxA free, award-winning audio program created by leading cancer organizations to help people better meet & understand the challenges of their illness.
        • Telehealth
        • Care Planning for Cancer Survivors
        • Remaining Hopeful
        • Self Advocacy
        • Talking With Your Doctor
        • Taking Charge of Your Care
        • Order Our Resources
        • Resources for Health Care Professionals

        • Tools For Care Providers
        • Telehealth Project
        • Survivorship Champions Webinars
        • Survivorship Checklist Guide for Clinicians
  • Events
    • Ellen L. Stovall Award
      • 2023 Winners
      • Awardees
      • Reception and Sponsorship
      • Committees
      • Nominations
    • Cancer Policy Roundtable (CPR)
      • Spring 2023 CPR
      • Fall 2022 CPR
      • Spring 2022 CPR
    • 2023 Survivorship Survey
    • Webinars
  • 0

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

NCCS Letter to HHS

NCCS and Cancer Leadership Council Issue Comments on Implementation of Medicare Drug Price Negotiation Program

April 20, 2023/in CMS, NCCS News, Policy Comments Access to Care, Drug Pricing, Health Care Coverage NCCS News, Policy Comments

NCCS joined with other member organizations of the Cancer Leadership Council (CLC) in a letter to the Centers for Medicare and Medicaid Services (CMS) to comment on the Initial Memorandum for Implementation of the Medicare Drug Price Negotiation Program.

In the letter, NCCS and 10 other cancer organizations — representing cancer patients, health care professionals, researchers, and caregivers — offered advice about the drug price negotiation process and to recommend options for monitoring the possible unintended consequences of price negotiation.

Specifically, the groups made the following points:

  • Input regarding clinical benefit: Cancer patients are well-prepared to offer advice about clinical effectiveness of selected drugs, including information about side effects and tolerability. We urge that a process or procedures be established to solicit the advice of patients about selected drugs and that the advice be solicited and evaluated in timely fashion.
  • Unintended consequences of drug price negotiation: We are concerned that research on supplemental indications of approved drugs may be adversely affected by the price negotiation process, and the advocacy community will closely monitor the situation.

Read the full letter below, or Download a PDF here »


CANCER LEADERSHIP COUNCIL

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

April 14, 2023

Meena Seshamani, MD, PhD
Deputy Administrator and Director of the Center for Medicare
Centers for Medicare & Medicaid Services
Department of Health and Human Services
200 Independence Avenue SW Washington, DC 20201

Filed electronically at IRARebateandNegotiation@cms.hhs.gov

Dear Deputy Administrator Seshamani:

The undersigned organizations representing cancer patients, health care professionals, researchers, and caregivers appreciate the opportunity to comment on the Initial Memorandum for Implementation of the Medicare Drug Price Negotiation Program. The negotiation of drug prices may have substantial effects on cancer patients, and we offer advice below regarding actions that the Centers for Medicare & Medicaid Services (CMS) can take to ensure that the advice of cancer patients, cancer care providers, and other cancer stakeholders is obtained and fully considered during the negotiation process.

For cancer patients and their cancer care teams and families, a cancer diagnosis begins a complex and difficult journey. Many cancer patients have benefited greatly from advances in screening, diagnosis, and treatment advances, and as a result the cancer journey is a long one. For some, the journey ends in cure and for others a good life even without a cure.1 Cancer patients often find treatment a complicated process, with the need to manage not only their treatment but also the side effects of cancer and cancer treatment, including physical symptoms, psychosocial issues, employment issues, and financial toxicities. Cancer patients, even when faced with a life-changing diagnosis, are required to plan and manage their care and their lives. All too often, they become expert at addressing both expected and “unintended” consequences of cancer and cancer treatment.

Cancer survivors and cancer advocates, because of their cancer experiences, are well-qualified to offer advice about the drug price negotiation process and to recommend options for monitoring the possible unintended consequences of price negotiation.

Input Regarding Clinical Benefit
In the guidance document, CMS generally describes a process through which it will seek information about the clinical effectiveness of a selected drug and the drug’s therapeutic alternatives. Cancer patients are, as we describe above, well-prepared to offer advice about clinical effectiveness of selected drugs. CMS notes that it is interested in real-world evidence about selected drugs, and cancer patients can supply that evidence, including about drugs’ side effects and tolerability. They can offer detailed real-world perspectives on selected drugs and therapeutic alternatives. In these comments we focus on the input of cancer survivors but believe that health care professionals, including those involved in the development of evidence-based practice guidelines, should be part of the process for evaluating clinical benefit and comparing therapeutic alternatives.

In recent years, the Center for Medicare & Medicaid Innovation (CMMI) at CMS has sought and received the advice of cancer patient advocates related to alternative payment and delivery models, including the Oncology Cancer Model and the Enhancing Oncology Model. Patient advocates have found CMMI open and transparent in the consultation process, in some circumstances agreeing to attend meetings convened by advocacy organizations to receive those advocates’ advice.

We urge that a process or procedures be established to solicit the advice of patients about selected drugs and that the advice be solicited and evaluated in timely fashion. Some have suggested that there be something akin to an ombudsman as the central point for engagement with patients, with the Patient Affairs Office at the Food and Drug Administration cited as a model. Others have suggested a standing panel of patient stakeholders to be consulted by CMS. We do not reject these suggestions but are concerned that these structures or processes may not result in timely advice from patients, which we define as advice about clinical benefit and therapeutic alternatives during the negotiation process.

We want to avoid a situation where patients provide valuable advice about clinical benefit, but that advice is received at the end of the negotiation process, essentially serving as commentary on a completed process. Even when federal agencies have good intentions regarding patient input, they sometimes solicit and receive that advice “after the fact” of a dynamic public policy process.

Public notice to patient advocates about an ongoing negotiation process, alerting them to a meeting to discuss a selected drug and an opportunity to submit written comments, might be an efficient way to obtain patient advice. Because the price negotiation process is being implemented through sub-regulatory guidance, the agency has some flexibility regarding notice and invitation to advocates and convening of panel meetings and acceptance of advice. The insights of patients are critical to the drug price negotiation process, and we look forward to flexibility and transparency from CMS in how it seeks and evaluates that research. CMS states in the initial guidance that the statute, “requires that CMS not use evidence from comparative clinical effectiveness research in a manner that treats extending the life of an individual who is elderly, disabled, or terminally ill as of lower value than extending the life of an individual who is younger, nondisabled, or not terminally ill.” We appreciate that CMS has, throughout the initial guidance, underscored the statutory limits on the use of QALYs and its intention to honor those limits.

Unintended Consequences of Drug Price Negotiation
As we have noted above, many cancer survivors have benefited tremendously from cancer research advances. When we talk about the expertise of cancer survivors across the continuum of care, that encompasses expertise about research and development of new therapies. Advocates are quite sophisticated about the drug development pipeline and will be monitoring the possible impact of drug price negotiation on investment in research and development. We urge CMS to regularize and formalize its efforts to ascertain the potential unintended consequences of price negotiation.

Pharmaceutical company representatives are raising alarms to patient advocates that their investment in research on supplemental indications of approved drugs will be significantly adversely affected by the price negotiation process. We are concerned about this assertion from the pharmaceutical industry, and research on supplemental indications will be among those research endeavors that the advocacy community will closely monitor.

Additional Efforts to Address Affordability of Drugs
We end our comments with observations and advice about other drug affordability issues. We realize that the issue of advice regarding the implementation of the “smoothing” of beneficiary cost-sharing responsibilities is outside the scope of this guidance. However, this issue is critically important to patients, and we look forward to implementation decisions regarding smoothing soon.

Clearly outside the scope of this guidance are additional efforts to address the affordability of drugs, including insurance reforms and limits on utilization efforts. We will pursue such reforms, as they are a critical complement to any relief that patients may see from drug price negotiation. We simply want to acknowledge that, whatever benefits are realized from drug price negotiation, they will not fully address the drug affordability issues that are crippling for some cancer patients.

**********

We appreciate the opportunity to offer our input regarding the drug price negotiation initial guidance.

Sincerely,

Cancer Leadership Council
Association for Clinical Oncology
CancerCare
Cancer Support Community
Children’s Cancer Cause
Fight Colorectal Cancer
LUNGevity Foundation
Lymphoma Research Foundation
National Coalition for Cancer Survivorship
Ovarian Cancer Research Alliance
Susan G. Komen

1 The cancer death rate has declined by 33 percent since 1991, due to treatment and screening advances and less smoking. Siegel, et al. Cancer Statistics, 2023. CA: A Cancer Journal for Clinicians. January 12, 2023.

CONTACT: 2446 39th Street NW, Washington, D.C. 20007 · Phone: 202-333-4041 · www.cancerleadership.org

# # #

Tags: access, drug pricing, financial issues, Medicare
Share this entry
  • Share on Facebook
  • Share on Twitter
  • Share on WhatsApp
  • Share on LinkedIn
https://canceradvocacy.org/wp-content/uploads/HHS-Humphrey-bldg-1200-1030x515-1.jpg 515 1030 NCCS Staff https://canceradvocacy.org/wp-content/uploads/2020/06/NCCA-Logo.png NCCS Staff2023-04-20 14:07:182023-04-20 14:07:18NCCS and Cancer Leadership Council Issue Comments on Implementation of Medicare Drug Price Negotiation Program

Latest News

Advocate Spotlight: Mary Glen, with photo of Mary.

The Not-So-Good Cancer: Mary Glen’s Inspiring Advocacy Journey

November 8, 2023
Advocate Spotlight: Mary Glen Mary Glen was serving as an active-duty Army officer, deployed to South Korea in August 2020. Just…
Read more
https://canceradvocacy.org/wp-content/uploads/Mary-Glen-Advocate-Spotlight-Blog-Banner.jpg 600 1200 NCCS Staff https://canceradvocacy.org/wp-content/uploads/2020/06/NCCA-Logo.png NCCS Staff2023-11-08 11:55:412023-11-08 11:55:41The Not-So-Good Cancer: Mary Glen’s Inspiring Advocacy Journey
Mary McCabe and Phuong Gallagher, Stovall Award winners, with NCCS CEO Shelley Fuld Nasso

NCCS Presents 8th Annual Ellen L. Stovall Awards to Phuong Gallagher and Mary McCabe, RN for Their Innovation and Dedication to Cancer Survivors

October 30, 2023
FOR IMMEDIATE RELEASE  October 30, 2023 Washington, D.C. – The National Coalition for Cancer Survivorship (NCCS) presented the…
Read more
https://canceradvocacy.org/wp-content/uploads/Mary-McCabe-Shelley-Fuld-Nasso-Phuong-Gallagher-Stovall-Awards-2023-web.jpg 628 1200 Kara Kenan https://canceradvocacy.org/wp-content/uploads/2020/06/NCCA-Logo.png Kara Kenan2023-10-30 09:31:232023-10-30 12:35:48NCCS Presents 8th Annual Ellen L. Stovall Awards to Phuong Gallagher and Mary McCabe, RN for Their Innovation and Dedication to Cancer Survivors
picture of National Institutes of Health building in Bethesda, MD

NCCS, Cancer Leadership Council Express Strong Support for NIH Director Nominee Monica Bertagnolli

October 18, 2023
The National Coalition for Cancer Survivorship (NCCS) strongly supports the nomination of Dr. Monica Bertagnolli to be the Director…
Read more
https://canceradvocacy.org/wp-content/uploads/National-Institutes-of-Health-NIH-1200px.jpg 628 1200 NCCS Staff https://canceradvocacy.org/wp-content/uploads/2020/06/NCCA-Logo.png NCCS Staff2023-10-18 11:54:422023-10-18 11:57:58NCCS, Cancer Leadership Council Express Strong Support for NIH Director Nominee Monica Bertagnolli

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.

Learn More and Join »
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.

Learn More and Join »
Link to: Survivor Stories

Share Your Story

NCCS represents the millions of Americans who share a common experience – living with, through and beyond a cancer diagnosis. By sharing your story of how you have been touched by cancer, you are supporting the national cancer survivorship movement.

Share Your Story »

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
    • What is Advocacy?
    • Our History
    • Our Team
    • Financial Information
    • Employment
    • Contact Us
    • Make A Gift
    • The 1986 Club
    • Ways to Give
    • Partnerships
  • News
    • NCCS News
    • Advocate Spotlight
    • Policy Comments
    • Issue Statements
  • Policy
    • Quality Cancer Care
    • Access to Care
    • Health Equity
    • Comprehensive Cancer Survivorship Act (CCSA)
    • Cancer Care Planning and Communications Act (CCPCA)
    • DIEP Flap Access
    • Policy Comments
    • Issue Statements
    • Quality Measurement Research
  • Get Involved
    • Cancer Policy and Advocacy Team (CPAT)
    • Survivorship Champions
    • Elevating Survivorship
    • Advocacy Opportunities
    • Subscribe to NCCS Updates
    • Follow NCCS on Social Media
    • Survivor Stories
    • Cancerversary
    • Make A Gift
    • The 1986 Club
    • Ways to Give
  • Survivorship Survey
    • 2023 Survey Report
    • 2022 Survey Report
    • 2021 Survey Report
    • 2020 Survey Report
  • Survivorship Checklist
    • Start Your Cancer Survivorship Checklist
    • Survivorship Resources
    • Cancer Rehabilitation
    • Integrative Oncology
    • Survivorship Checklist Guide for Clinicians
  • Resources
    • Cancer Survival Toolbox
    • Telehealth
    • Care Planning for Cancer Survivors
    • Remaining Hopeful
    • Self Advocacy
    • Talking With Your Doctor
    • Taking Charge of Your Care
    • Order Our Resources
    • Tools For Care Providers
    • Telehealth Project
    • Survivorship Champions Webinars
    • Survivorship Checklist Guide for Clinicians
  • Events
    • Ellen L. Stovall Award
      • 2023 Winners
      • Awardees
      • Reception and Sponsorship
      • Committees
      • Nominations
    • Cancer Policy Roundtable (CPR)
      • Spring 2023 CPR
      • Fall 2022 CPR
      • Spring 2022 CPR
    • 2023 Survivorship Survey
    • Webinars
  • Search
  • Cart

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.

Lisa Rice – My Breast Cancer Journey: Many Lessons Learned and More in...Lisa Rice Blog BannerCPAT Webinar: Amplifying Your Message: Advocating Through Traditional Media Channels webinar flyerWebinar – Amplifying Your Message: Advocating Through Traditional Media...
Scroll to top
Download the Survey Report

"*" indicates required fields

Fill out the form below, and we’ll send the survey report, detailed presentation, and infographic to your email.
Name*
I am a...*
Select any/all that apply.
Consent*
By downloading the survey materials, you will receive updates and information from NCCS via email, which you may unsubscribe from at any time. Your information will never be sold to any third parties.
This field is for validation purposes and should be left unchanged.

Download the Survey Report

"*" indicates required fields

Fill out the form below, and we’ll send the survey report, detailed presentation, and infographic to your email.
Name*
I am a...*
Select any/all that apply.
Consent*
By downloading the survey materials, you will receive updates and information from NCCS via email, which you may unsubscribe from at any time. Your information will never be sold to any third parties.
This field is for validation purposes and should be left unchanged.

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