UNIDENTIFIED SPEAKER: Good afternoon. I come with a product that Dr. Amelie Ramirez talked about, and I want to acknowledge my gratitude. The Radas in Accion Cancer Program, she talked about encouraging Latinos and other minority persons to become educated and participate in research, and I'm a product of that. Dr. Ramirez, thank to her, I got a minority supplement. I'm a new investigator in academics. Well, thank you. I didn't come for the applause. I came to acknowledge this wonderful program as a way for young people to get started, and my project was looking at cervical cancer screening in Latinas in the border region. So thank you to Dr. Ramirez.

MARY HARPER: Thank you. I'm Mary Harper, and I'm a 36-year survivor. I wanted to share something, two things. I think the mammogram is right. You're very right about getting it, but I think you need to learn some of my experiences. We need to inform people that there are false negatives with mammograms, and if so, that you need to concentrate and maybe in getting a sonogram, or what's the other extreme because the mammogram is screening. It is not diagnostic. I just wanted to share that with you. I think it's very important because I experienced that. I had a negative one, and they told me I had a cystic breast. And now, I've had the second breast removed just in January this year. The other observation I wanted to make is that I'm concerned when we say that it is research and not a clinical trial. There are a set of laws that govern protection of human subjects from research risk, and they are supposed to get inform consent. And I'm deeply concerned that so many minorities are involved in research and clinical trials and experimental drugs and experimental treatments, and they are never given any kind of thing.

The last thing I want to say is about chemotherapy. I'm on chemotherapy now, and I think that what we need to know and inform people as a part of the chemotherapy, that we need to know the clinical trial group. And for instance, for the medication that I'm on, that on the four people that was 80 years old—and I'm 84—and that medication had no minorities in the clinical trials. That's very important to know. The second thing, the dosage for the clinical trial was only 1000 milligrams and 2000, and he had me on 8000. And then, so the age group and the dosage and the length of the clinical trial was only 13 days. So I think along with cancer, we need to know those things. And I think the other thing we need to do is go to a specialist. The primary care physician is wonderful, but you need to go to a specialist in cancer when you have a questionable cyst, so-called "cystic breast." Thank you.

KELLY CHUN: Hi, I'm Kelly Chun. I'm a writer and a communications consultant based in Boston, and part of my practice involved doing some focus groups for the Dana Farber Cancer Institute. And what we found with women who had experienced cancer was—and had their breast removed—was the cosmetic challenges that they faced, particularly African-American women, finding wigs in chemotherapy and finding appropriate—I believe the word is "prosthetics." Could you comment on that and let me know if there are any campaigns that address those issues?

UNIDENTIFIED SPEAKER: I know that there's Look Good, Feel Good is a program, I believe, of the American Cancer Society where, you know, beauticians, cosmetologists are volunteering their time to show women what to do during their chemotherapy and their treatment. If anybody else knows of anything else, but I do know that it's called Look Good, Feel Good.

UNIDENTIFIED SPEAKER: And just we have the same issue in our community, and I'm sure Amelie has had the same, and I didn't talk at all about our survivorship program, but we have a quality of life program, also. We found that most of our native women were given blonde wigs, and when we went to talk with the American Cancer Society about it, it took them several months to do it, but they started getting in black wigs for our ladies. So a lot of times, you know, and our ladies were just so thankful to have anything, they were like, you know, find out if blondes really do have more fun, and they were very cute with it. But, you know, they really wanted a black wig. And the American Cancer Society did get them black wigs, but you do have to just start negotiating so they realize, you know, how to adapt.

UNIDENTIFIED SPEAKER: And you know, I might just add one thing. I guess my dear husband, before I started my chemo treatment, he said, "Why don't you see if you can find a little wig so in case your hair comes out, you know, you'll be prepared. You won't miss a beat." And I did. I've always wore my hair very short, so I got a little short wig. And fortunately, though I only lost a little bit on the top and you couldn't see it. But the idea of maybe getting it before so that, you know, you're ready when the—because one day, you just go and it just starts to come out.

UNIDENTIFIED SPEAKER: Can I make a comment, because I'm from the American Cancer Society Chinese Unit? We do provide wigs that are suitable for Asian women, and we have donated—our donors, and we also have a prosthesis that will fit the smaller size for Asian women. And we have Asian beauticianist that will help to do the makeup because our makeup looks a bit different skin, different from American. So we do have that special service. If anybody need for Asian women, we do have.

UNIDENTIFIED SPEAKER: I do want to recognize that this young lady who has been very patient—thank you for the comment. Thank you.

UNIDENTIFIED SPEAKER: My question is for Dr. Ramirez. I know that you started your talk acknowledging that not all Latinos are immigrants. But I'm wondering about undocumented immigrants, because I know that as of 2001, it was estimated that there are 9.3 million undocumented immigrants in the United States, and three-fourths of them are Latinos. So what do we know about their health, the statistics of their health, and who is finding out? I just don't know. I've never been able to find anything out about it.

AMELIE RAMIREZ: Dr. David Hayes Bautista out of UCLA is one of the leading researchers in immigrants and undocumented Latinos, and that's where this whole health paradox, that is was astounding that sometimes immigrant and undocumented Latinos were in better health than the Latinos that were here in the United States. It starts to erode because now, as more legislation is coming where hospitals are being told do not serve unless you can prove you're from here, it's really going to hurt us. I think that particularly along the border, there's been a lot of goodwill, and health services have been provided. But now, health agencies are getting their hands tied more and more. So this is where, as Alexine has mentioned in terms of advocacy and so forth, we really need to go in there because, as we know, they're providing a service that nobody wants to do, and they're not being recognized for that.

UNIDENTIFIED SPEAKER: Do you know if there's any government agencies doing, like, finding out what the health status of undocumented immigrants is?

AMELIE RAMIREZ: No. Is there anybody here in the audience that might want to? Okay.

UNIDENTIFIED SPEAKER: There's actually a Border Health Project, and there are some funded studies in the Border Health Project. The Border Health Project also has I think a chart book that they have put together. It is the federal government that's done it. So I think that there are ways in which they're trying to collect more and more data. So I would just say if you go onto—what's the gate? www.dhhs.gov and look up Border Health, I think you actually may be able to get the chart book, which actually has some of this data in it.

UNIDENTIFIED SPEAKER: Great, thank you.

Amelie Ramirez: And I want to also mention that Clinica Tateya in Denver, Colorado has some good information about cancer risks in undocumented women because their clinic only serves women who have no insurance. And they can express some of the gauntlets we have to go through to get the women into care.

GLORIA SANCHEZ-ARIZA: Hi, I'm Gloria Sanchez-Ariza, and I'm with the Minority of Women's Health panel of experts. It has been over a decade since two genes were initially identified that predispose individuals to developing breast cancer. And there's an important myth that I want to dispel, and I believe the last speaker brought this up, is that when a parent has a gene, the inheritance of this gene is not relegated only to females. Sons are equally likely to inherit the gene. The expression of this gene is not only relegated to breast cancer. Other cancers can develop. There can be secondary site cancers. So that's one of the myths I wanted the audience to be aware of. The other issues is that there is a tremendous underutilization by women of color, by people of color, of the available genetic testing. Are any studies being done to look at populations of color and the incidence of genes that are segregating in these populations? The best treatment is prevention, and there was tremendous advocacy in this country on behalf of breast cancer groups. There is a significant degree of testing among the Caucasian population within the last decade-plus. We do not see people of color utilizing this. The presumption is there's a lack of education, genetic education. So my questions are, one, are there any studies in the future that are being planned that are going to look at populations of colors to look at the segregations of genes for cancer within these respective populations? Two, what is the status of genetic education? I am aware of GENA. I believe it's Genetic Education for Native Americans. So I was hoping that Dr. Burhansstipanov—did I say that correctly?—could give me a little bit of information. I also do recognize the difficulty in studying the Hispanic population because of genetic heterogeneity, that we are a mixed population. As an example, I'm Mexican, but I'm also part Apache and Cherokee. So that does make for difficult studies in clinical trials.

LINDA BURHANSSTIPANOV: Let me briefly just explain a couple of things. One is with the BRCA1 and BRCA2, which are the two biomarkers you're referring to. If you were to look at the genome that's on this chromosome and pretend it goes from the floor to the ceiling, the segment that that test covers is about this much of the entire gene. There can be other markers that are on the chromosome that may or may not show up in that test so that the test is not a cure-all, so to speak. And so we need to be careful about thinking just tests for BRCA1 and BRCA2. Example: of the few Native American women who have received breast cancer diagnoses and have also had the BRCA1, BRCA2 tests, none of them have been positive for BRCA1 or BRCA2. Almost all of our men have been positive for BRCA2, and that's kind of what you're talking about, that the men need to know that there is a risk with that. In terms of genetic studies for cancer risks, in our community, there are many, many cultural issues related to genetic testing. In some cases, you can be kicked out of your tribe and you can lose all rights, all tribal benefits for you and your descendents if you take part in a genetic testing study. So just because something looks like it's good, you have to partner with the community and let the community tell you what they feel is important and what is not as important. Example: we have a community right now that wants to do genetic testing for a familial form, hereditary nonpolyposis colon cancer, because they find that this clan has had some intermarriage into another tribe, and they're trying to see if there actually is some relationship. The tribe right now is talking very positively about the colon cancer tests. The breast cancer, they're not so much. So you have to be very careful about which ones approach and which ones do not, but the community has to also have it as a priority. And there very often are subtleties in our cultures that may not seem like it's much to somebody outside of the culture, but within the culture, there are reasons why it's a big issue. And I can explain that later on, but I don't want to take the whole time.

UNIDENTIFIED SPEAKER: Also, we've done a small study on about 200 women, Hispanic women in San Antonio in this area of breast cancer genetics, and there's a high interest but a tremendous lack of knowledge. And so and then the other thing is that the Gail model to test for this doesn't—didn't quite fit. A lot of our women did not qualify for the star trial, for example, because they didn't meet some of the criteria. I think again this is where your question is excellent. We need better models for earlier detection among our populations.

UNIDENTIFIED SPEAKER: I'm not fully qualified to talk about this, but I just only want to mention it because somebody might be in the audience who could. But, you know, Howard University has just embarked on a large project to sort of gather data. Do you know anything about this to maybe speak about it? But I think that that's something that you might want to look at, maybe to go on the website and look at. But it's a huge project of data collection around genetics with African-Americans. But we have the same problem, because, you know, look how mixed up we are.

UNIDENTIFIED SPEAKER: I've just been reminded of the time. Frances, I see you. So we have only time for, depending on the next question from this young lady, one or two questions.

BARBARA JACKSON: Good afternoon. My name is Barbara Jackson, and I'm from Harrisburg, Pennsylvania. And I'm blessed to be a part of an organization that tries to do outreach in minority communities raising the level of awareness of cancer issues and emphasizing that through education and early detection, lives can be saved. And one of the things I just wanted to remind everyone here about is that you do have to advocate for yourselves and for your families often. We've talked about a lot of things here, and I applaud the panel. It's been an excellent afternoon. And I'd also like to say that we've spoken about mammograms and heard the young lady talk about the sonogram. The other thing is it's important to do self-breast exams, and I just wanted to emphasize that as well as to get your physician or the provider to do a clinical breast exam. It's a three-fold process, and I just wanted to share that. The other thing is we have to advocate for our men and our children. The wives are the necks that turn the heads of the head of the household, so we just have to do that. And often, we can save our own family members' lives. So I just wanted to share that, and that's some of the things we try to emphasize. We incorporate the entire family because cancer does not just affect the individual. It is a total encompassment of the entire family. Thank you.

UNIDENTIFIED SPEAKER: One more question and we're going to need to stop.

UNIDENTIFIED SPEAKER: (Inaudible) still here and we have two cancer workshops.

UNIDENTIFIED SPEAKER: Yes, that's right. We have two cancer workshops, and the speakers will still be around for questions.

JERRY DENARD: This is just a comment. I'm Jerry Denard from Texas, Houston, Texas, Texas Medical Center. And in regard to the issue of the undocumented work, the University of Texas School of Public Health in Houston and San Antonio and down on the border is doing an incredible amount of work in that regard for lots of the different issues. So whoever was interested in that, they have lots of information on the website as well as St. Luke's Episcopal website in Houston, Texas has tremendous undocumented information.

UNIDENTIFIED SPEAKER: Okay, well, Frances has given us a little reprieve on the time, and the last two questions, yes, or comments.

MARTHA BANKS: Hi, my name is Martha Banks. I just want to emphasize the need to advocate for yourself. I'm a person who absolutely believes in mammograms, gets them regularly, absolutely believes in self-exams, goes to the physician, and yet it took a CAT scan to determine that I had a tumor against my chest wall. You have to advocate for yourself when you don't feel good.

UNIDENTIFIED SPEAKER: Thank you for sharing that.

CAROLINE LOFFGRIN: My name is Caroline Loffgrin. I am a member of the Osage and Cherokee Nations and formerly with the Office on Women's Health. I'm now an independent contractor in Albuquerque, New Mexico, and I have to definitely agree with your panel about taking charge of your own life. But cultural competency is something that we need to pay more attention to, and I would like to comment to all of the providers out there. I've seen so much information. I've seen so many brochures. I've seen so much printed material that goes out, but you can't let it stop there. As a healthcare provider, to be culturally competent, you have to go a step further. You've got to make sure that that patient understands the information that you are providing. A lot of particularly Native American women, and I know Linda will concur with me, they will sit there and they will yes you to death. And a lot of ethnic women, they will do the same thing because they don't want to appear dumb. They don't want to appear stupid. So as a healthcare provider, you have to go that extra step. I know it takes a little bit more time, but it could make the difference in the life of your patient that they understand.

UNIDENTIFIED SPEAKER: Thank you. What we find works with a lot of our communities is instead of asking them an answer that takes a yes or no is to do something with an interrogative pronoun. And the easiest way we found to use it is that we go "Amelie, when you go home today, how are you going to tell your sister what the doctor has told you today?" And then she'll say, "Well, I'm not going to die this summer," and that's all she hears. And so you really have to get them to say it to you, but it can be done. But it does take more time, like you said.