I 113th CONGRESS 1st Session H. R. 1984 IN THE HOUSE OF REPRESENTATIVES May 15, 2013 Mr. Lance (for himself and Mrs. Christensen ) introduced the following bill; which was referred to the Committee on Energy and Commerce A BILL To amend the Public Health Service Act to raise awareness of, and to educate breast cancer patients anticipating surgery, especially patients who are members of racial and ethnic minority groups, regarding the availability and coverage of breast reconstruction, prostheses, and other options.

1. Short title This Act may be cited as the Breast Cancer Patient Education Act of 2013 . 2. Findings Congress makes the following findings: (1) The American Cancer Society estimates that in 2013, about 232,340 new cases of breast cancer will be diagnosed in American women. (2) Breast cancer has a disproportionate and detrimental impact on African-American women and is the most common cancer among Hispanic women. (3) African-American women under the age of 40 have a greater incidence of breast cancer than Caucasian women of the same age. (4) According to the Health Resources and Services Administration, women residing in rural areas may have lower rates of mammography screening compared to non-rural women because of barriers to health care, such as greater distances to medical facilities and lower educational, income, and health insurance levels. (5) Individuals undergoing surgery for breast cancer should have the opportunity to give due consideration to the option of breast reconstructive surgery, either at the same time as the breast cancer surgery or at a later date. (6) According to the American Cancer Society, immediate breast reconstruction offers the advantage of combining the breast cancer surgery with the reconstructive surgery and is cost effective, while delayed breast reconstruction may be advantageous in women who require post-surgical radiation or other treatments. (7) A woman who has had a breast removed may not be a candidate for surgical breast reconstruction or may choose not to undergo additional surgery and instead choose breast prostheses. (8) The Women’s Health and Cancer Rights Act of 1998 (WHCRA; Public Law 105–277 ) requires health plans that offer medical and surgical benefits with respect to a mastectomy to also provide coverage for all stages of reconstruction of the breast on which the mastectomy has been performed, surgery and reconstruction of the other breast to produce a symmetrical appearance, prostheses, and physical complications of mastectomy, including lymphedemas. (9) A 2007 study by Amy Alderman, M.D. at the University of Michigan reported that up to 70 percent of women eligible for breast reconstruction are not informed of their reconstructive options by their general surgeon. (10) A 2003 study by Alderman and others found that race is a significant predictor of reconstruction. Compared with the odds of reconstruction for Caucasians, the odds of reconstruction for African-Americans, Hispanics, and Asians are significantly less. (11) A 2007 study by Caprice Greenberg, M.D. of the Dana–Farber Cancer Institute and others found that Hispanic patients were less likely to receive reconstruction. This may be because of language barriers between the patient and provider. Although 72 percent of patients who primarily spoke English went on to receive reconstruction after discussing it with their providers, no patient in the study with a primary language other than English went on to receive reconstruction. (12) A 2009 study by Alderman and others also found that the relationship between race and reconstruction rates persisted when demographic and clinical factors were controlled for. Minority women are significantly less likely than Caucasians to see a plastic surgeon before initial surgery, were most likely to desire more information about reconstruction, and satisfaction was lowest among minority women without reconstruction. (13) The low use of reconstruction for minorities is not explained by lower demand for the procedure. Lower health literacy, financial issues, and less access to plastic surgeons emerged as barriers to reconstruction in the 2009 Alderman study. These results suggest that there is a substantial unmet need for information, especially among racial and ethnic minority groups regarding reconstruction options and coverage required by the Women's Health and Cancer Rights Act of 1998. (14) A 2010 study by Warren H. Tseng, M.D. and others at the University of California, Davis found that patients from rural areas are less likely to undergo breast reconstruction following mastectomy for breast cancer than their urban counterparts. 3. Breast reconstruction education Part V of title III of the Public Health Service Act ( 42 U.S.C. 280m ; programs relating to breast health and cancer) is amended by adding at the end the following: 399NN–1. Breast reconstruction education (a) In general The Secretary shall provide for the planning and implementation of an education campaign to inform breast cancer patients anticipating surgery regarding the availability and coverage of breast reconstruction, prostheses, and other options, with a focus on informing patients who are members of racial and ethnic minority groups. (b) Information To Be disseminated (1) Specific information Such campaign shall include dissemination of the following information: (A) Breast reconstruction is possible at the time of breast cancer surgery, or at a later time. (B) Prostheses or breast forms may be available. (C) Federal law mandates both public and private health plans to include coverage of breast reconstruction and prostheses. (D) The patient has a right to choose a provider of reconstructive care, including the potential transfer of care to a surgeon that provides breast reconstructive care. (E) The patient may opt to undergo breast reconstruction some time after the time of breast cancer surgery for personal or medical reasons, during treatment or after completion of all other breast cancer treatments. (2) Other information In addition to the information described in paragraph (1), such campaign may include dissemination of such other information (whether developed by the Secretary or by other entities) as the Secretary determines relevant. (3) Required publication The information required to be disseminated under paragraph (1) and any information disseminated in accordance with paragraph (2) shall be posted on the Internet Web sites of relevant Federal agencies, including the Office of Women’s Health, the Office of Minority Health, and the Office of Rural Health Policy. (4) Restriction Such campaign shall not specify, or be designed to serve as a tool to limit, the health care providers available to patients. (c) Consultation In developing the information to be disseminated under this section, the Secretary shall consult with appropriate medical societies and patient advocates related to breast cancer, breast reconstructive surgery, breast prostheses, and breast forms and with patient advocates representing racial and ethnic minority groups with a special emphasis on African-American and Hispanic populations. (d) Definitions In this section, the terms racial and ethnic minority group and Hispanic have the meanings given such terms in section 1707. (e) Report Not later than 2 years after date of enactment of the Breast Cancer Patient Education Act of 2013 and every 2 years thereafter, the Secretary shall submit to the Committee on Health, Education, Labor, and Pensions of the Senate and the Committee on Energy and Commerce of the House of Representatives a report describing the activities carried out under this section during the preceding 2 fiscal years, which shall include an evaluation of the extent to which such activities have been effective in improving the health and well-being of racial and ethnic minority groups. .