Mammography Inequities Reported

Reprinted from PN June 2011

Women with physical disabilities have fewer clinical breast exams and mammograms than their able-bodied counterparts, with all the attendant risks—from later diagnosis to more serious illness to a greater risk of death.

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“I was told I couldn’t have a mammogram because of my size and the size of my wheelchair. But I have had two successful mammograms, which I never would have had without this Independence Care System project,” says Esther Jones, ICS member who is at high risk for breast cancer.

Women with physical disabilities have fewer clinical breast exams and mammograms than their able-bodied counterparts, with all the attendant risks—from later diagnosis to more serious illness to a greater risk of death.

The reasons are multiple, according to a newly released report from Independence Care System (ICS) —a nonprofit Medicaid managed long-term-care program serving adults with physical disabilities in New York City:

- Inadequate equipment

- Inaccessible waiting, dressing, and exam rooms

- Inability to position wheelchair users

- Inexperience handling patients with paralysis, tremors, and spasms

- Discomfort around people with physical disabilities

- Impatience

- Insensitivity

- An unwelcoming environment

“No one knows how many women with physical disabilities could have been saved if more mammography facilities were accessible to them,” says Marilyn

Saviola, longtime leader of the disability rights movement and director of Independence Care System’s Breast Cancer Screening Project for Women with Physical Disabilities. “Early detection is key to survival with this disease.”

With generous support from the Greater NYC Affiliate of Susan G. Komen for the Cure®, ICS launched its Breast Cancer Screening Project in 2008. The project was designed to create and test a healthcare model that would reduce barriers to breast cancer screening for women with physical disabilities.

As described in ICS’s preliminary findings report, the project has:

(1) Coordinated initial screening mammograms for 42 women during its first       two years. Women with the most significant physical disabilities were more likely to need increased time for mammograms, require an extra technologist, and/or receive compromised imaging—i.e., a failure to visualize the whole breast, and possibly, a cancer.

(2) Established partnerships with three prestigious institutions that provide mammography screenings for ICS members—New York Presbyterian Hospital-Columbia University Medical Center’s Breast Cancer Screening Partnership Program, the Breast Examination Center of Harlem (a program of Memorial Sloan Kettering Cancer Center), and most recently, Morrisania Diagnostic and Treatment Center in the South Bronx.

(3) Developed an eight-point model for increasing access to breast-cancer screening services, which can be replicated nationwide. The model calls for locating a breast cancer screening facility that is willing to provide the extra time and resources to participate in the project, conducting disability awareness training for all staff—from receptionists to technologists to nurses AND physicians—at the facility, and providing skilled patient navigation services to the woman with a disability and a clinical assistant to accompany her to her exam.

(4) Launched an interdisciplinary advocacy initiative focused on policies that will increase access to mammograms for women with physical disabilities, such as enhanced insurance reimbursement for the extra time and personnel needed to conduct the exam.

ICS was recently approved for a fourth year of funding from Komen Greater NYC for its Breast Cancer Screening Project. The project was honored as the “Grantee of the Year” at Komen Greater NYC’s Annual Awards Luncheon in the Grand Ballroom of the Hilton New York on May 19 in New York City.

Susan Wolf, MD, PhD, is project clinical director.

ICS was specifically designed to help adults with physical disabilities live independently and participate fully in community life.

Serving Brooklyn, the Bronx, and Manhattan, ICS has more than 1,600 members; all are low-income, nearly two thirds are women, 72% are Hispanic/Latina or African American, and approximately 60% use wheelchairs.



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