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International Breast Cancer Support Conference

Posted 3/20/2013

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What an opportunity and what a day! I have been at the first day of the International Reach for Recovery's Breast Cancer Support Conference all day. There are, I am guessing, about 450 people here, mostly women, representing 56 countries. Looking around, I suspect that most of them are not from highly resourced first world countries, and the chance to talk with them becomes even more valuable. Since today was the opening, many wore traditional dress--often in pink (for better or worse, you know how I feel about that, but it is harder to be critical of a group from Malaysia in beautiful pink batik traditional dress or women with pink head scarves than it is to be very critical of a company trying to sell pink toilet paper). As we would all expect, women are delighted to reach out to each other, to share their stories, and we have much in common.

One interesting presentation was about a successful breast cancer screening program in Sudan. The NGO trained a number of community volunteers over an intensive five day course. They learned to do physical breast exams and how to refer women with possible problems to medical care. They found three times the numbers of early breast cancers than had been reported in their country previously, and most of those women have done well. The core problem in much of Africa and other under-resourced countries is that most women do not come to care until they already have advanced cancers. It apparently is crazy to think about mammographic screening, let alone ultrasounds or MRIs. Matter of fact, a slide was shown of two shiny new mobile mammograohy vans (those buses that we have all seen) that were donated to Uganda by Partners Health Care in Boston (admit that I breathed a big sigh of relief that it had not been BIDMC money). The vans are sitting in a dusty lot, slowly falling apart. They are totally useless to the area--not only do they not have technicians who can operate the machines or anyone who would know how to repair them, but the vans won't work on the poor roads--if there even are roads in some rural areas. This seemed an excellent and sad example of Western arrogance and ignorance as we assume we know what people need. If you are interested in reading more about the Sudan project, the reference is: Abvidris, D O et al, 2/13. I look forward to reading it.

I gave a talk about BIDMC's system of Patient/Family Advisory Boards and Groups. I had been asked to speak about working with patients and families, and, knowing how incredibly diverse the audience would be, I was hard pressed to think of something that might be universally useful. As much as anything could have been, I think this worked. A group set up at a small facility in Egypt is clearly going to be quite different than ours, but everyone can do a needs assessment and develop a program that fits their setting.

Tomorrow I am giving the opening keynote talk and another workshop, so it is time to go polish them both.


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