Breast Cancer Policy Workshop

November 4 - 5, 2009, Washington, DC

 

Women In Government held the Breast Cancer Policy Workshop November 4-5, 2009 in Washington, DC.  This event brought together women state legislators to address policy issues surrounding breast cancer and highlight legislation on access, screening, education and more.  To view the conference proceedings for the event, click here.  To view photos from this event, click here

Overview of Conference Presentations

An Overview – Breast Cancer in 2009

Worta McCaskill-Stevens, MD, MS
Program Director, Minority-Based Community Clinical Oncology Program
National Cancer Institute
National Institutes of Health

The National Cancer Institute (NCI) estimates that in 2009 there will be over 194,000 new cases of breast cancer diagnosed. This segment gave an overview of breast cancer including epidemiology, prevention, and participation in NCI breast cancer clinical trials. One clinical trial studied a woman’s risk of breast cancer. Out of 1,770 women without a history of breast cancer, 72 percent accurately perceived an average risk of developing breast cancer. This study also focused on the different types of risk factors that could lead to a higher risk of developing breast cancer. Those included: sex, age, obesity, age of first menarche, and age of menopause, among others. Virtually every successful intervention for cancer treatment or prevention has been demonstrated through a clinical trial.

View the Presentation

Additional Questions and Comments from Legislators: 

  • Are you seeing a difference between traditional and digital mammograms? How are insurance companies reacting? Do women gain much weight with the use of Tamoxifen? Have the side effects of Tamoxifen changed?
  • Is there an advantage to taking Tamoxifen after the five years?

Treatment and Diagnosis of Breast Cancer: Advances and Innovation

Jo Anne Zujewski, MD
Head, Breast Cancer Therapeutics
National Cancer Institute

Genetic history and other risk factors can often affect the prognosis for breast cancer patients. Many advanced screening tools and innovation in treatments can improve the quality of life and prognosis for patients diagnosed with breast cancer. Some of these innovations include: molecular profiling, targeted therapy, clinical trial design, and targeted microenvironment. Molecular profiling early in the diagnosis of breast cancer can identify patients who may benefit from “more” or “less” therapy. In one research study, patients with tumors with high recurrence scores had strong benefits from chemotherapy, and patients with tumors with low recurrence scores had minimal, if any, benefits from chemotherapy.

View the Presentation

Additional Questions and Comments from Legislators:

  • What would it take for us to have a centralized tissue collection bank?
  • Forty-seven percent of women rely on Medicaid or are uninsured in Illinois; what types of treatment are available with and without insurance?

Addressing Disparate Populations: Breast Cancer in Minorities

Anne Marie Murphy, PhD
Director
Chicago Breast Cancer Quality Consortium

Breast cancer mortality, as compared to incidence, disproportionately affects minority groups. The disparity in breast cancer mortality in Chicago is one of the highest in the United States. Over 100 African-American women die each year in Chicago because of this inequity in mortality. Breast cancer health disparities exist nationwide; however, there appears to be significant differences in the extent of the disparity in different locations. In Chicago, African-American women are less likely to get mammograms in facilities with digital equipment, facilities that had breast imaging specialists, and they were less likely to access care in an academic facility. The Chicago Breast Cancer Quality Consortium was created to build a collaboration between providers to share quality data on access to high quality breast cancer screening and treatments.

View the Presentation

Former State Senator Diana Bajoie
Director of Community Relations, Louisiana State University Health Sciences
Center New Orleans

Breast cancer is one of the most common forms of cancer in American women. It can occur at any age, but it is more likely to occur after age 40. There are several factors that can contribute to a woman’s risk of developing breast cancer, and include: personal history of breast cancer, two or more relatives with breast or ovarian cancer, inherited changes in breast cancer related genes, and previous radiation in the chest area. Some signs to watch for if a patient is concerned they may have breast cancer are a lump or thickening anywhere in the breast, skin dimpling or puckering of the breast, an inverted nipple, discharge from the nipples, and any change in shape or texture of the breast.

Race is not considered a factor that might increase a woman’s chance of getting breast cancer; however, the rates of developing and dying from the disease differ among ethnic groups. The cause of this disparity may be the differences in biology of breast cancer or the differences in breast cancer screening rates and treatment. Among women under 40, African-American women have a higher incidence of breast cancer than Caucasian women. Asian women who migrate to the United States are six times more likely to develop breast cancer.

View the Presentation

Additional Questions and Comments from Legislators: 

  • How do you move facilities into communities with highest breast cancer mortality rates?
  • There is a difference between covering screening and treatments.
  • There is a disconnect between screening and diagnostic services; expensive to cover biopsies, etc. when women are uninsured.
  • When we are talking about funding we should use health disparities legislation as a model; how much does this legislation cost?

State Legislation: Screening and Diagnosis

Representative Mary Sue McClurkin
Chair, Women In Government Board of Directors
Alabama State Legislature

Representative Mary Sue McClurkin discussed Alabama House Bill 147 which was enacted this year and allows for Medicaid eligibility coverage for a woman who has been screened for breast and/or cervical cancer to be determined by any healthcare provider and/or entity that receives direct payment for screening services by the National Breast and Cervical Cancer Early Detection Program (NBCCEDP) or is partially funded by an NBCCEDP grant to provide Medicaid coverage. This determination of medical eligibility for coverage by Medicaid is to be administered by the NBCCEDP of the Alabama Department of Public Health. This legislation was enacted on April 30, 2009.

View Alabama House Bill 147

Additional Questions and Comments from Legislators:

  • Vermont provides reduced co-pays for mammograms.
  • Do women have to go to doctors that are approved under the program?
  • What kind of advocates on the Senate side helped you pass this bill?

Access to Screening: State Legislation through Coalition Building

Representative Peggy Welch
Indiana State Legislature

Patricia Ells
Former Advocate
American Cancer Society

Representative Peggy Welch and Patricia Ells discussed how they worked together during the 2009 legislative session to successfully eliminate insurance barriers for clinical trials, bring parity for oral chemotherapy with intravenous chemotherapy, and increase eligibility for the Breast and Cervical Cancer Screening Program. Indiana House Enrolled Act 1382 requires a state employee plan to provide coverage for routine care costs that are incurred during the course of a clinical trial if the state employee plan would provide coverage for the same routine care costs not incurred during a clinical trial. Senate Enrolled Act 554 requires the state Department of Health to change the department’s Breast and Cervical Cancer Screening Program plan in a manner that will designate Indiana as an option three state, allowing a woman who is screened by other providers and entities to be identified by the state department as part of the state’s insurance program. Senate Enrolled Act 437 requires coverage for orally administered cancer chemotherapy and cancer therapy that is administered intravenously or by injection.

Handouts:

Indiana House Enrolled Act 1382
Indiana House Enrolled Act 1382 - Fiscal Note
Indiana Senate Enrolled Act 554
Indiana Senate Enrolled Act 554 - Fiscal Note
Indiana Senate Enrolled Act 437

Additional Questions and Comments from Legislators: 

  • Patients in states whose doctor has prescribed “off-label” drugs - will insurance cover this and how should legislators go about dealing with it?

State Legislation: Clinical Trials

Senator Bettye Davis
Member, Women In Government Board of Directors
Chair, Senate Health & Social Services Committee
Alaska State Legislature

Senator Bettye Davis discussed Alaska Senate Bill 10, which was introduced this year to ensure continued insurance coverage for cancer patients who choose to participate in clinical trials. This legislation, if enacted, would require healthcare insurers to provide insurance coverage for medical care received by a patient during certain approved clinical trials designed to test and improve prevention, diagnosis, treatment, or palliation of cancer. It would also direct the Department of Health and Social Services to provide Medicaid services to people who participate in clinical trails and to require insurance to cover certain experimental procedures under a state insurance plan offered by the Comprehensive Health Insurance Association.

View Handout

Additional Questions and Comments from Legislators: 

  • According to National Journal of Clinical Oncology, there are 200 ongoing clinical trials.
  • How can we connect patients who have been diagnosed with cancer to a central database of ongoing clinical trials?
  • Where could patients go to learn about how to participate in clinical trials? Patients can visit: http://clinicaltrials.gov/.

Ensuring Quality of Care: Patient Navigation Programs

Senator Judy Eason McIntyre
Oklahoma State Legislature

Cancer patients face confusion and difficulty in their battle against the disease. Senator Judy Eason McIntyre used her personal experience with breast cancer to help shape Senate Bill 434, which, if enacted, would direct the State Department of Health to provide a cancer patient navigation program which would provide education about and assistance with the management of cancer. The bill also sets minimum program guidelines, including initially serving breast and cervical cancer patients and eventually expanding to all other cancer types as the program develops, assist patients with access to healthcare, financial and legal assistance, transportation, psychological support, and other related issues as necessary, and to be a part of an existing cancer service agency, that is not affiliated with a particular healthcare institution.

Oklahoma Senate Bill 434

Summary of Breast Cancer Policy Workshop Breakout Sessions

Legislation: Goals of Legislation

  • Routine coverage of clinical trials care
  • Navigation for cancer patients
  • Medical home for adults
  • Patient Navigation (Wellness Visit Prevention)
  • Creating a hotline for patients to call (ex. 1-800-HOTLINE)
  • ERISA- Federal legislation’s impact on state screening coverage – Diagnosis not paid (ie. Biopsy, sonogram, etc.) (If mammogram shows positive- who pays for next follow-up screening?)
  • Oral chemo covered same as IV chemo
  • Off label drug use mandates
  • Clinical trials
  • Not losing insurance – do not lose standard of coverage for pre-existing conditions or after diagnosis
  • High deductible insurance plans can not exclude mammograms

Legislation: Possible Co-Sponsors

  • Male legislators (spouses, mothers, grandmothers with breast cancer)
  • Prostate cancer counterpart advocates
  • All cancer survivors; cancer survivors who are legislators (especially from the other party)
  • Healthcare Appropriation Committee members
  • Other legislators within states
  • Health Committee Chairs

Legislative Allies

  • State Medical Association
  • Public Health Commissioners
  • Medical associations
  • Public Health Society
  • Survivors Network especially breast and cervical cancer survivors
  • American Cancer Society
  • Pharmaceutical companies
  • Doctors, especially primary care doctors
  • Susan G. Komen Foundation
  • Famous people in your state with cancer
  • CEOs of communication based organizations
  • Faith-based organizations
  • Health departments
  • Cancer coalitions

Legislation: Opponents

  • Financial conservatives’ legislation or constituency
  • Religious organizations (anti-research or medical technology)
  • Some doctors
  • Insurance companies

Legislation: Obstacles

  • Lack of funding
  • Access
  • Rural states (geographic)
  • Lack of education and understanding for need
  • Legislative time (three different committees needed for approval before action)
  • Lack of available advocates
  • Healthcare providers reimbursements will be cut
  • Lack of leadership on issue

Legislation: Overcoming Opponents and Obstacles

  • Personal stories
  • Third-party financial groups for health statistics
  • Cost saving plans
  • Educate, Educate, Educate
  • Federal healthcare reform
  • Women in leadership roles as sponsors
  • Men as sponsors
  • Bring all players to the table to discuss the issues

Legislation: Funding

  • Research funding
  • CDC money
  • State lottery ticket with breast cancer ribbon
  • Private corporations
  • Insurance companies

Non-Legislative Ideas: Goal of Project

  • Breast Cancer awareness event at the Capitol
  • Creating a cancer caucus
  • Colon cancer information memo to all legislators
  • Other memos and information on other types of cancer and screening treatments
  • CDC speakers and more information
  • Improve health and access to care
  • Public awareness PSAs

Non-Legislative: Others willing to Help

  • Cancer coalitions
  • Cancer survivors
  • Local governments
  • College health fairs

Non-Legislative: Obstacles

  • Funding
  • Fear
  • Apathy

Non-Legislative: Opponents

  • Specialist (Medical possible)
  • Departments of Agency that do not want to share information

 

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