This page is Bobby AAA Approved
<---Back to News
This article originally appeared in the July/August issues of BREAST CANCER ACTION
By Edare Carroll
Judi Rogers has mild cerebral palsy (CP) that affects the left side of her body, making it shake uncontrollably at times. She also has a family history of breast cancer. Her mother, aunt, and two cousins had breast cancer, and. her aunt died from the disease. From the time she was 30 years old, Rogers was doing breast self-exams and getting annual mammograms.
Over the years she had three, lumps removed from her right breast, each of which was determined to be benign. In 1993 she spotted dimpling in her left breast and scheduled a mammogram, which came back negative.
About a year -later, during another mammogram, a radiologist found two lumps in the same breast measuring 5.5 centimeters each. Rogers was immediately scheduled to see a surgeon for a biopsy. The lumps turned out to be malignant, and she had a mastectomy to remove her left breast a few days later. She was 48.
"The fact that they found two lumps that were so large says to me that they had been there for a long while," Rogers says (though the size of a lump isn't necessarily an indication of its age; the tumor may have been fast growing). "I began to wonder if my Disability had interfered with the accuracy of the mammogram the year before. I thought it was likely that my involuntary movements created shadows or inaccuracies on the mammogram, and l had doubts about the thoroughness of the exam performed by the physician on me, a disabled person."
She decided to do something to help other disabled women avoid a similar experience. As an occupational therapist at Through the Looking Glass, a national resource center for parents with disabilities, Rogers knew full well the challenges disabled women face when doing things many of us take for granted. She met with Shirley McKenzie, a nurse-practitioner who heads the Alta Bates Comprehensive Breast Center in Berkeley, California, and spoke of the frustration she and other disabled women experience over their lack of access to specialized care and education.
This meeting inspired the creation of an organization called Breast Health Access for Women with Disabilities (BHAWD). McKenzie pulled together a steering committee of leaders from disability organizations and the medical community and, in 1995, BHAWD was born. The first of its kind in the country, BHAWD is a model program of breast cancer detection services tailored to the needs of women with physical and visual impairments. It is a grant-funded program with the collaboration of community agencies Such as the Center for Independent Living and United Cerebral Palsy of the Golden Gate. BHAWD is housed in the rehabilitation services department at Alta Bates. At the clinic, which opened in 1997, women with disabilities. (age 20 and older) are given free clinical breast exams, self-breast exam education and training, and referral for a mammogram if appropriate.
All BHAWD services are provided by a specially trained nurse in an accessible exam room and on a universally accessible exam table, which can be used for patients with or without a disability. Translation services for deaf and multilingual patients are available as well. The referral mammogram site is also wheelchair accessible.
The mammography facility bills Medi-Cal, Medicare, and private insurance- providers. BHAWD has limited funds to reimburse for transportation and attendant services if necessary, and BHAWD staff schedule exam and mammogram appointments.
<---Back to News
Kathleen Lankasky, project coordinator at United Cerebral Palsy of the Golden Gate was called on to join the steering committee in the early days following BtlAWD's inception. Because she also heads up the Women's Health Project at the CP agency and has CP herself, she was excited to become involved in this model program. "The breast Cancer activist community doesn't think about women with disabilities as having special needs." she says. "We don't have access to mammogram machines in a wheelchair, for instance and for someone with CP like me, when the attendant tells me to hold my breath and be still, its practically impossible. Many people don't, realize that under stress a disabled person's condition worsens". Lankasky notes that, in the beginnings it was difficult to get funding for BHAWD, "The Komen Foundation was our only source', and they were only willing to fund a one-day conference in order for us to gather information to prove to them that there was a need," she says. Like other breast cancer organizations, they just were not aware that there was a need and did not understand what we meant when we said there was a problem with access
"So we gathered 100 women with disabilities together for a full-day conference to share their concerns with women from the breast cancer community," Lankasky continues. "We went back to funders with a report generated from this conference and began to get regular small funding We've been funded ever since by the Komen Foundation and other sponsors, and most recently, the. California Endowment gave us a grant of $405,000 to disburse over a three-year period. But we faced two to three years of total frustration in the beginning due to lack of funding because no one "recognized our needs" Lankasky says.
BHAWD hopes to expand its services to provide treatment in the future, in addition to the services currently offered. More immediately, the clinic also hopes to establish a comprehensive patient database, and to develop outreach efforts to women ages 50 and older who have physical limitations. "Older women experience many of the same barriers as younger women with disabilities do," says Florita Maiki, BHAWD's Manager and only full time Staff person. This type of outreach is supported in the California Endowment grant, including outreach to senior citizens in the African American and Latino communities.
Beyond that, says Maiki, BHAWD intends to share its program as a model for others around the country. "We hope that people will come to us, so that we can help them set up protocols and procedures to begin a program and open a clinic like BHAWD in their city or state," she says. "Perhaps we'll, be able to share with them some of the lessons that we've learned in terms of outreach to women with disabilities."
The key to the success of the project, says Maiki, is the close partnership between BHAWD and its clients. "We really try to treat each woman as an individual in how we adapt the training and instruction," she says. "Our goal with any patient. Is always, 'How can we make this easy for her?' A woman with no fingers or atrophied hands needs to learn to do a breast self-exam that is adaptable to her ability.
For more information about BHAWD, call the clinic at 510/204-4866.
<---Back to News