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Newly proposed United States Preventive Services Task Force (USPSTF) breast cancer screening guidelines fail to address the needs of many women

May 9, 2015

The United States Preventive Services Task Force (USPSTF) has published its Draft Breast Cancer Screening Guidelines. Once finalized, these recommendations will replace current guidelines that were published in 2009. The proposed recommendations are specifically to guide decision-making about breast cancer screening for women of average breast cancer risk. The guidelines are particularly important for patients because they affect access to and insurance coverage of breast screening; health insurers must cover 100 percent of any preventive service in the guidelines that has been assigned a letter grade of “B” or higher, without any out-of-pocket patient expense.

FORCE opposes many aspects of the proposed guidelines because we believe they will worsen existing disparities, lead to confusion, and cost the lives of women in the community that FORCE serves. The USPSTF accepted comments on this draft until May 18, 2015, and will consider these comments when drafting its final recommendations. FORCE submitted comments and we are now part of a change.org petition to encouraging people to submit comments to elected officials You can read our letter and sign this petition to add your name.

Components of the draft recommendations include:

  • For women ages 40–49: informed, individualized decision-making regarding screening mammography based on a woman’s values, preferences, and health history, but only gave this recommendation a “C” letter grade. The USPSTF points out that screening mammography in this age group “may reduce the risk of dying of breast cancer, but the number of deaths averted is much smaller than in older women…”
    • This represents a modification and expansion of current/2009 USPSTF Recommendations, which concluded that evidence was insufficient to assess the balance of benefits and harms of mammography in this age group.
  • For women ages 50-74: screening mammography every two years rather than annually (grade B recommendation).
  • For women 75 and older: no concrete guidelines, indicating that current science is inadequate to recommend for or against screening mammography.
  • On Breast Self-Exam (BSE): omission of any reference to this early detection modality.
    • This change from current/2009 USPSTF Recommendations that gave a grade D to teaching BSE indicates a “moderate or high certainty that the service has no net benefit or that harms outweigh the benefits.”
  • For women with dense breasts: indication that current evidence is insufficient to assess the balance of benefits and harms of screening for breast cancer using breast ultrasound, magnetic resonance imaging (MRI), tomosynthesis, or other modalities in women whom an otherwise negative screening mammograms identifies as having dense breasts.
    • This is a new language that was not present in prior USPSTF recommendation statements.

Below is our response to the USPSTF stating FORCE’s opposition to many aspects of this draft.

FORCE comments to the USPSTF

Dear Chair, USPSTF:

Facing Our Risk of Cancer Empowered (FORCE), the only national nonprofit organization devoted to people and families affected by hereditary breast and ovarian cancer, is committed to providing information, education, and advocacy to empower women to make informed decisions about their health, including decisions about cancer screening. Our organization and the undersigned members of our Scientific Advisory Board and community oppose many aspects of the proposed Draft Breast Cancer Screening Guidelines because we believe they will worsen existing disparities, lead to confusion, and cost the lives of women in the community that FORCE serves.

The proposed guidelines state: “The USPSTF is committed to improving the health of all Americans. To achieve this, the USPSTF assesses evidence on specific populations and makes specific evidence-based recommendations for specific populations.” The panel wields considerable power over consumer access to preventive health care services—primary care clinicians and health systems follow its guidelines. And importantly, the guidelines are incorporated into the Patient Protection and Affordable Care Act (PPACA), which states that health plans must provide benefits without imposing cost-sharing (i.e., without a deductible or co-pay) for services that have a Task Force rating of “A” or “B.” As such, any omissions or gaps in the populations under consideration for a given service can limit access and worsen disparity in access to care.

Our concerns are as follows:

The guidelines will disproportionately harm women with Hereditary Breast and Ovarian Cancer (HBOC) and women with a BRCA mutation:
The USPSTF recommendations specifically apply to women of average risk, but these guidelines detrimentally affect members of the high-risk community we serve, for whom breast cancer before age 50 is particularly common. Because genetics experts and risk-assessment tools are underutilized, many high-risk women with an inherited predisposition to cancer learn about their high-risk status only AFTER THEY ARE DIAGNOSED with breast cancer that has been detected by mammography. For this population, access to surveillance is important and can lower the risk of breast cancer mortality. Giving a “C” grade to mammography in women ages 40-49 creates significant barriers to them having access to care and misses an opportunity to diagnose breast cancer in high-risk women at earlier stages.

The guidelines discriminate against high-risk women:
The guidelines create a gap in screening recommendations and access to preventive services for women at high risk for breast cancer, thus discriminating against this vulnerable group. Although the USPSTF is committed to improving the health of all Americans, women who are most at risk for breast cancer are omitted from screening guidelines.

In 2013, the USPSTF published guidelines that assigned a letter grade of “B” for identification of women at high risk for breast and ovarian cancer through genetic counseling and BRCA testing. However, the clinical utility of genetic counseling and testing for BRCA lies in the high-risk individual accessing preventive services to lower their risk for breast or ovarian cancer or to detect these cancers at an earlier stage. During the review phase of the draft guidelines in 2013, FORCE urged the USPSTF to review the evidence and assign a letter grade to expert-recommended interventions for high-risk women, including risk-reducing salpingo-oophorectomy and breast MRI. The USPSTF did not implement these suggestions. Without a letter grade assigned to screening and prevention interventions, these preventive services are not covered under the PPACA, giving high-risk women less access to recommended interventions than average risk women.

The USPSTF also notes that women in their 40s who have a mother, sister, or daughter with breast cancer may benefit more than average-risk women by initial breast cancer screening before age 50. The proposed breast cancer screening guidelines, however, assign this service a grade “C” recommendation, which will make insurance reimbursement for screening mammography before age 50 difficult for millions of women who have increased risk for breast cancer due to family history.

Having dense breast tissue is linked to an increased risk of breast cancer. Mammography is less effective in screening dense breasts for cancer, so other screening tools such as MRI or ultrasound may provide crucial early detection for these women. Several states have laws requiring that women be informed if they have dense breasts. Unfortunately, without a USPSTF grade “A” or “B” recommendation, insurers are not required to pay for supplemental screenings in these high-risk women. This may place an unnecessary financial burden on this population.

The guidelines miss an opportunity to find aggressive breast cancers and cancers in younger women:
The task force acknowledges that screening mammography is likely to save lives, but that it saves fewer lives for women ages 40-49 than older women. Nevertheless, we must apply every and all means at our disposal to save as many lives as possible. By delaying screening mammography until age 50 we miss opportunities to identify breast cancers in high-risk women. Limiting mammography after age 50 to biennial screenings means many aggressive, quicker developing, interval breast cancers (cancers that develop between screenings) will go undetected until they are advanced and much harder to treat. These recommendations may also disproportionately burden and increase disparities for African American women, who are more likely to develop aggressive triple-negative breast cancer, and who are more likely to die of their breast cancer than women of other races. We are concerned that if implemented, these recommendations will cost lives.

The guidelines emphasize risks for overdiagnosis and treatment, while minimizing risks of misdiagnosis, and ignoring clinical tools that can help minimize overdiagnosis:
According to the draft guidelines, “All women undergoing regular screening mammography are at risk for the diagnosis and treatment of noninvasive and invasive breast cancer that would otherwise not have become a threat to her health, or even apparent, during her lifetime (known as “overdiagnosis”). This risk is predicted to be increased when beginning regular mammography before age 50 years.”

The guidelines do not acknowledge the existence of decision-support tools such as Oncotype DX and Mammaprint, technologies that can help prevent overtreatment by determining which early-stage cancers, when found, are more likely to behave aggressively and thus avoid overtreatment.

Conclusion

The task force review of risk and the cost/benefit ratio for breast cancer screening highlights the need for:

  • more effective breast cancer screening,
  • better utilization of risk-assessment tools, and
  • more research on breast cancer risk factors, screening, and outcomes.

To make breast cancer preventive services accessible to all Americans we must provide guidelines for breast cancer screening that take into account high-risk women, as well as women at average risk. and assure coverage for preventive services without cost-sharing for people at increased risk for breast cancer by reviewing the evidence and providing a letter grade for recommended services such as risk-reducing salpingo-oophorectomy for women with a BRCA mutation and breast MRI for women at high risk for breast cancer due to inherited risk factors. At a time when our elected leaders are focusing on personalized and precision medicine, we should strive to replace sweeping one-size-fits-all recommendations with more appropriate guidelines that support individualized risk assessment and screening. Until risk assessment becomes an exact science, all women should have access to credible and balanced information, and with guidance from their physician, be allowed to decide and have insurance coverage for the breast screening that makes sense for them.

Respectfully yours,

Sue Friedman, DVM
Executive Director
Facing Our Risk of Cancer Empowered

Lisa Rezende, PhD
Vice President of Education
Facing Our Risk of Cancer Empowered

Lisa Schlager
Vice President of Policy and Community Affairs
Facing Our Risk of Cancer Empowered

William Audeh, MD
Medical Director, Wasserman
Breast Cancer Risk Reduction Program
Cedars-Sinai Medical Center
Los Angeles, CA

Rachel Brem, MD
Director of Breast Imaging & Intervention
George Washington University Department of Radiology
Washington, DC

Robert Allen Burger, MD
Professor of Obstetrics and Gynecology at the Hospital of the University of Pennsylvania
Division of Gynecologic Oncology
University of Pennsylvania
Philadelphia, PA

Monica Alvarado, MS, CGC
Genetics Services Regional Administrator
Kaiser Permanente
Los Angeles, CA

James Ford, MD
Director, Stanford Clinical Cancer Genetics Program
Stanford Cancer Center
Palo Alto, CA

Noah D. Kauff, MD
Director, Ovarian Cancer Screening and Prevention, Gynecology Service, Department of Surgery
Memorial Sloan

Jennifer R. Klemp, PhD, MPH
Risk Assessment Counselor and Program Manager of the Breast Cancer Survivorship Center
University of Kansas Medical Center
Kansas City, Kansas

Allison W. Kurian, MD, MSc
Assistant Professor of Medicine and of Health Research and Policy
Divisions of Oncology and Epidemiology
Stanford University School of Medicine
Stanford, CA

Christine Laronga, MDChristine Laronga, MD
Program Leader, Comprehensive Breast Program
H. Lee Moffitt Cancer Center and Research Institute
Tampa, FL

Joshua Levine, MD
The Center for Microsurgical Breast Reconstruction
New York, NY

Ellen Matloff, MS
President and CEO
My Gene Counsel

Timothy R. Rebbeck, PhD
Leader, Cancer Center Genetics, Epidemiology and Risk Reduction Program
Abramson Cancer Center
Philadelphia, PA

BJ Rimel, MD
Cedars-Sinai Medical Center
Los Angeles, CA

Jennifer Scalia Wilbur
Clinical Program Manager/Cancer Genetic Counselor
Cancer Genetics and Prevention Program
Warren Alpert Medical School of Brown University Program in Women’s Oncology
Women & Infants’ Hospital
101 Dudley Street
Providence, RI 02905

Victoria Seewaldt, MD
Associate Professor of Medicine and Associate Professor of Pharmacology and Cancer Biology
Duke Comprehensive Cancer Center
Durham, NC

Leigha Senter-Jamieson, CGC
Associate Professor
The Ohio State University
Columbus, OH

Rebecca Sutphen, MD
Professor, Departments of Pediatrics and Oncologic Sciences
College of Medicine
University of South Florida
Tampa, Florida

Elizabeth Swisher, MD
Department of Obstetrics & Gynecology
Medical Director, Breast and Ovarian Cancer Prevention Program
University of Washington School of Medicine
Seattle, WA

Melinda Telli, MD
Assistant Professor of Medicine
Stanford University
Division of Medical Oncology
Stanford, CA

Kenneth Tercyak, PhD
Associate Professor
Director of Behavioral Prevention Research
Georgetown University Medical Center
Lombardi Cancer Center
Washington, DC

Ronni Witkin
New York, NY

Annette Seelig
Castro Valley, CA

Carla Patterson
Gresham, OR

Kristine Record
Phoenix, AZ

Heather Ramee
Raleigh, NC

Arielle Hall
Newton, MA

S. Kaufman
New York, NY

Kim Richardson Emery
Co-Founder of My Destiny Foundation

Sara Neuzil
Colorado Springs, CO

Ann Little
Boxborough, MA

Katherine Berges
Branford, CT

Annie Brickel
Boca Raton, FL

Andrea Downing
Eugene, OR

Laura Royse
Forest Hills, NY

Phebe Downey
Concord, MA

Bridgette Skaff
Ann Arbor, MI

Patty Spears
Raleigh, NC

Rasonda Crandall

Bette Nitzky
Woodstock, NY

Kathryn Belke
Castro Valley, CA

Martha Lemp
Arlington, VA

Linee Zajic
Chatsworth, CA

Jane Herman
New York, NY

Jennifer Steinberg
Minneapolis, MN

Lauren Gordon
Morristown, NJ

Brandi Forbes
Cincinnati, OH

Jennifer Steinberg
Minneapolis, MN

Laura White, MSN, RN

Kimberly Taylor
Weston, FL

Dafne Carnright
Milford, DE

Judy Calabria
Houston, TX

Jennifer Gustafson
Sheridan, IN

Tamara Combs
Lancaster, PA

Deanna Cutlip
Willowick, OH

Mary Ellen Dean

Sandy Cohen
LaFayette Hills, PA

Robin Karlin
Pittsburgh, PA

Karen Kramer
Potamac, MD

Emily Jones
Arlington, VA

Kristina Wieland
Plano, TX

Nancy M Cappello Ph.D.
Woodbury, CT

Diane Rose
Oley, PA

Tricia Wynne
Branford, CT

Neal Ramee
Raleigh, NC

Marybeth Harakas

Shelley Stanek

Rebecca Kruse
Centreville, VA

Tara Freundlich
Randolph, NJ

David Nixon
St. Petersburg, FL

Tamra Marinello
Clinton Township, MI

Laurie Mankin
Washington, DC

Aline Gallagher
Santa Monica, CA

Debbie Setuain
Miami, FL

KJ Surkan

Laurie Palmer

Rona Greenberg

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20 Comments

  1. Lisa Schlager says:

    Please add my name Sue!

  2. Laulrie savin says:

    Do not put women at risk to save money.

  3. The My Destiny Foundation stands with you and beside you in your opposition to the proposed guidelines for the United States Preventive Services Task Force (USPSTF) breast cancer screening services. We concur with your concerns and recommendations for amending these guidelines. I am a Co-Founder of My Destiny, a nationwide not for profit organization providing financial support to those who are at risk of developing breast cancer. Through our website and online support group, My Destiny provides social/emotional support and educational resources. As part of our on-going philanthropy initiatives, My Destiny raises funds which help offset costs related to additional breast screenings, genetic testing and undergoing preventative surgery. In addition to the foundation, we are administrators of a Facebook support group called, Prophylactic Mastectomy. Every day, we hear stories of women who are extremely high risk. These women lost their Mothers, Grandmothers, Aunts, and cousins to breast and ovarian cancer. Genetically, they are extremely high risk. There are also women who are first generation high risk such as myself. Whether due to environmental or dietary changes or genes that have not yet been mapped, these women should be included in preventative care screenings and treatment. We must support these women through this difficult journey and educate the medical profession to see not only the physical but mental toll this takes on these women and their families. Waiting to get an actual diagnosis of cancer is too late. When proper risk assessment is utilized, there is no reason that women should not be allowed to take preventative measures to reduce, up to a 90% risk of developing breast or ovarian cancer during their lifetime. This could actually save money by preventing long term cancer treatment and care. We are happy to be of any assistance. Please feel free to add my name to any list supporting your efforts.
    Sincerely,
    Kim Richardson Emery
    Co-Founder of My Destiny Foundation
    Co-Admin of the Prophylactic Mastectomy Support Group

  4. Leslie Rutherford says:

    Signed!

  5. Please add my name to the letter above.

  6. Linee Zajis says:

    Please add my name.
    Thanks
    Linee

  7. Linda Leibowitz says:

    Please add my name to the list. I live in San Diego, CA. Thanks,
    Linda

  8. Renee Whitworth says:

    Please add my name.

    Thanks,
    Renee

  9. Laura White, MSN, RN says:

    Please add my name as well. These kind of limitations will be deadly to women of all ages and risk factor.

    Laura

  10. Please add my name. Marybeth Harakas

  11. Shelley Stanek says:

    Please add my name. I feel that breast cancer screening should start at age 30. I’ve had too many friends die in their 30’s of breast cancer, if it were found earlier it may have been curable.

  12. This is a great letter. Thank you so much.
    Please add my name too!
    Caitlin

  13. Debbie Setuain says:

    Please add my name

  14. Laurie Palmer says:

    Sign my name

  15. Rona Greenberg says:

    Please add my name!
    Rona Greenberg
    New Jersey

  16. KJ Surkan says:

    Please add my name. We don’t need any more insurance barriers to screening in the high-risk community.

  17. […] Today FORCE continues our work to protect our rights; fighting efforts to weaken GINA, challenging inequities in access to health care, advocating for more research and better medical options, and training consumers to participate in […]

  18. […] this year, after draft guidelines from the U.S. Preventive Services Task Force put insurance coverage for mammo…, I joined my Republican colleague Renee Ellmers to introduce the Protecting Access to Lifesaving […]

  19. […] recommend earlier or more frequent screening for younger women, or women with dense breasts. In our May 9, 2015 blog, we shared our concerns about the proposed recommendations and how they may impact the ability of […]

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