AJ Scheitler is the Center's coordinator of stakeholder relations and co-author of a new study on barriers to breast cancer care that was the topic of a Jan. 12 legislative briefing in Sacramento. In this brief interview, Scheitler discusses the gap between passing a health law and making sure it is used and how care involves more than just medical treatment.
Q: What was a major finding from the report that surprised you?
One notable barrier we found is that many women seeking care for breast cancer face a weak system of support during and after their medical treatment: Where can they find a wig after chemotherapy or get fitted for a prosthetic bra after breast removal? Can they get transportation to the various doctors who are treating them? Can they afford to miss time at work needed for treatments and recovery? They need more than just the medicine.
Some doctor's offices provide information on how to handle all the things they have to deal with outside of actual treatment for the disease; some don't. It's a hit-and-miss system and is a big detriment to the patient. For women who have limited English proficiency, these barriers are even more complicated.
Q: Because of language barriers, some women can't understand what the doctor is telling them during diagnosis and treatment. Didn't California just pass a law that sets aside funding for medical translation services?
That question came up during the legislative briefing: Although we're lucky to have a law in California that mandates funding for medical translation services for Medi-Cal patients (AB 635) many physicians — and patients — don't know the law or that funds exist. So, the doctors may not provide those services and the patients don't know to ask for them.
There needs to be more outreach to educate both. Further, language services are needed outside the examination room. Patients must be able to understand medication instructions, dietary and physical therapy recommendations, and reminders for follow-up appointments.
Q: The study was based on interviews with organizations that work with breast cancer patients. Why weren't the patients themselves interviewed?
We had one breast cancer survivor, Veronica Vera, at the legislative briefing, and her story helped "put a face" on what these women endure to receive care for breast cancer.
But for the report, we needed to maximize efficiency. We were able to get many more examples of the kind of barriers women faced by interviewing organizational representatives who talk and work with hundreds of survivors. These representatives ― including breast health educators, on-site clinic workers, patient navigators, and individuals involved with support groups ― have listened to women's questions and challenges for years. So I think the patients' experiences and frustrations with roadblocks to care came through in the report.
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