AMELIE RAMIREZ: Bienvenidos. Buenos tardes. Welcome and good afternoon. It's really a pleasure to be here with all of you, and it's been a great, great conference. And there's a lot of common themes that we're hearing about each other in these meetings, and I think it's really important to be supportive of all that we do. My presentation is going to focus on cancer in Latinos, and I'd like to briefly mention the program that Dr. Medrano mentioned, the (speaking foreign language). It's a program funded by the National Cancer Institute to increase research in the Latino communities, to train more of our Latino junior investigators to be interested in cancer research, and to increase awareness in our communities about cancer prevention, and that overall prevention of chronic diseases has been a major theme of this meeting. And I'd like to share some of my colleagues.

We're in sites throughout the United States. We work with Dr. Jose Martia of New York. In Washington DC, we work with Dr. Elena Rios, a cosponsor from the National Hispanic Medical Association, cosponsor of this summit. In Chicago, we work with Dr. Aida Giacello. In Miami, we work with Dr. Frank Binlledo. In San Antonio, Dr. Martha Medrano and I. In San Diego, Dr. Greg Calavera, and in San Francisco, Dr. Liseo Parastisable. And it's really been a great opportunity. Some of us have had the fortunate ability to work together for almost 10 years in keeping this network. And we also have a number of supporters throughout this meeting that have been very helpful in our network, and I want to thank all of you. Before I begin, I wanted to share with you a little bit of data about who we are, who are Latinos and where do we come from, because in the news lately, you really hear a lot that Hispanic Latinos are often thought predominantly as immigrants or recent arrivals. And actually, you know, we date back since the early 1400s. And for some of us, our ancestors have been here forever, particularly if we're from the Southwest area. And I like to use a quote from a famous jazz musician who's won a number of Grammy awards, Carlos Santana. He says, "I didn't cross the border. The border crossed me." And I'm one of those, you know. I was born in a border community, Laredo, Texas. And everybody goes, "Well, where do you come from?" And I say, "Well, I'm an American, but I am of Mexican descent." And so, you know, we've been forever since. My great-grandfathers were here.

So when we talk about health, you know, sometimes the native Latinos are often forgotten, and they actually have some worst health outcomes. Some of you have maybe hearing about the Hispanic paradox. Are we healthy or are we not healthy? And so when we think about developing programs for Latinos, I hope that you will always consider the full spectrum from those who've recently arrived to those who are native of this country and are multigenerational. Also, when we talk about Hispanic populations, we are a mosaic culture. We're really a blend of many different racial and ethnic groups, and we come from not only Spain and the Americas but also Africa. So we are a blended society, and we bring in a lot of the cultures that are represented here today. So this slide here brings a snapshot of where our population is for today. Hispanic and Latinos are one of the largest and fastest-growing ethnic groups in the United States. And "Hispanics" is actually a government term that was developed during the Nixon administration in the '70s and then actually got placed in the census taking in the '80s. And it's just been until recently that some people really take offense to the word "Hispanic," although that's the term that I was described in terms of growing up. So, you know, forgive me if I'm not politically correct with some of my colleagues, but that's a term that we've been called all our lives. So now, we're trying to be more inclusive and saying, "Latinos and Hispanics," or "Hispanics and Latinos." And so these are new terminologies that as we evolve, just as the African-American population, you know, the terms have changed. They're also changing for us as they're changing for the American Indians versus the Native Americans, and so we're all trying to be more sensitive to this.

But before I go on, I wanted to take a moment and ask if you are a Hispanic or a Latina or Latino, would you please stand up for just a minute? Okay, great. Well, I think we have much more representation at this meeting than we did at our last meeting, but I hope that next time you come that you'll bring five more individuals with you because we need more representation. So thank you. And as you saw from the representation that we have here that it's not as large as we would like to see it, considering that we represent a fairly significant portion of the population. We don't see that kind of research being done, as well, on Latino issues. And so we really need to promote more research in the areas of health behavior, health status, and among Latinos. And often times, we're called the silent or invisible minority because of this; but we are growing in numbers, and we hope that we can see more of these research and program activities grow. And also, we are diverse in who we are. We represent a lot of different groups, and so sometimes we have some similarities, but then we also have some differences among our populations.

In this slide, the pie chart shows that Mexican-American are your predominant group followed by other Central and South Americans and then Puerto Ricans, other Hispanics, and Cubans. And this, again, has been changing over time. But when we see data, we sometimes are either not represented on the charts at all—I was so pleased to see some data represented yesterday on cardiovascular disease and some of the other presentations, finally—but it's a lump sum. It's not really broken out by some of our major groups that we have represented. And because there are some sociodemographic differences, I think we really need to begin focusing on those issues, too. So why is it important to study Latinos and cancer? Well, again, we're one of the fastest growing populations. Cancer is the second leading cause of death for our population. Breast cancer is the leading cause of death for our women, and this is not a very well known fact. We have a higher incidence of cervical cancer, stomach, gall bladder, and liver cancer. Number one, cervical cancer should be eradicated for all women. We have appropriate treatments and screening behavior. So no woman should have to suffer or die from cervical cancer.

With regards to the other cancers or GI cancers, you know, there's not very many effective treatments. So here, our population, if they're diagnosed with these cancers, there are, you know, minimal treatment options available for them. So we need to start new research in some of these areas, as well. Throughout the meetings, we've heard some really common themes about who we are as individuals and who our culture represents. It's one that we have strong family values and that religious and spiritual values are extremely important to us, as well. And I was glad to hear, I think it was Lillian that mentioned yesterday that sometimes, family can keep you from doing preventative behaviors, and so that we need to encourage our families to be more positive about health and supportive of preventive health behaviors. And machismo is another area that we've been looking into. Originally, that was a very positive thing. A man who was macho when somebody who really wanted to take care of his family and it was more something of chivalry. But in some cases, in some of our population groups, machismo will actually keep women from coming in for being screened because they don't want a male physician examining their spouse or their significant other. And then, at the same time, I wonder if some of these are stereotypes that have just been cited in the literature once and they haven't been proven or dis-proven anymore, and so they carry on, you know, over the years. And so again, we need to investigate that and look into that a little bit more.

In terms of the sociodemographic profile, we share a lot of things in common with the other groups. We have poor access to health. We have large poverty rates. We have low educational attainment; 40 percent of our kids don't finish high school. Over 32 percent of the Hispanic population, even though they're a working population, do not have health insurance. They have one of the highest uninsured rates. We have strong family ties, which is a positive. We have strong religious beliefs, which is a positive. But then, at the same time, we have low levels of breast cancer knowledge. Sometimes, we rely on some folk medicine and alternative medicine approaches that we don't have a study to see if they work or not. And then, just overall, there's really this lack of preventative health behaviors, mainly because they're hesitant to go see the doctor because of language issues, because of cost, transportation, or other barriers. And something that's really coming up recently in our focus groups is La Decisia, the indecision, you know. It's "I'll do it mañana," you know. It's really something hard to get over. We always think we're going to have time to get to it, and it's something that we keep putting in the back burner. And so how to help women motivate them to get over that indecision I think is another area that we need to begin looking into.

Lack of health data, this is such a pet peeve for me because I've been around for a long time now, and the first national Hispanic interview survey was conducted back in 1985. And at that time, that was some of the first data, limited data, that was reported on Latinos. We still just have a lack of data with regards to our population and where we are. You know, part of the problem is you are born here but you never die, because some Latinos go back to their country of origin, so we never know exactly what happened to them. Or, other times, they're misclassified on the death certificates because if you're married to someone with a different surname, you're not necessarily classified as Latino. And then, Hispanic or Latina was first put on the death certificates just in 1990, so it's not that far away that we were finally being identified as a separate entity. And those of you who are familiar with the Cancer Seer database, you also know the regions that they're in, and in some of these regions, there are not large Hispanics represented in these areas. So again, the cancer data that we have is sparse for our population. So we are definitely at a crossroads with regards to our population, and not only for cancer but for all chronic diseases: heart disease, diabetes. At one time, we were told we had less of; but as you begin to see that data, we are on a trajectory of these horrible risk factors that are going to impact our population. And at the same time, we don't have the resources. We don't have insurance. We can't access the healthcare. So our population is going to be in some dire straits. But at the same time, there are some protective factors that maybe if we could study that could be beneficial to all groups that we also need to look at. But my other concern is that we're a growing population.

We're aging. I'm no longer in the median age, which were called young Latinos, you know. And so we need to worry about our elders, and as they grow older, what are we doing? And acculturation we're finding definitely has some major impacts, particularly for our youth and their acquiring behaviors that are not as good for them and losing some of their traditional values. And lastly, as a researcher, I'm really interested in getting our patients to participate in clinical trials so that they can benefit from some of the newest advances that we have that are coming out of the trials. I'd like to now transfer a little bit to some of the data that we've learned from our own studies. We did a large survey. In our case, it was a few years ago; so telephones, before the cell phones got so popular, we did a large telephone survey of over 9600 Latinos in the six different regions that we were in, and half of that sample was women, and half were women 18 and over, and then half of that were women over 40. So I'm presenting the data of the women over 40. And when we asked women, "Within the last two years, have you had a recent mammogram?" we saw a lot of ethno-regional differences within our population group. And basically, we saw the East and West coast were doing pretty good; but when you got down to the south, particularly in Texas where a lot of the women do not have health insurance, you really saw the screening rates decrease. And if you'll notice here, we see low screening rates for particularly Mexican-American women.

And this next slide is a little complicated, but we also asked them about their knowledge of the screening guidelines for mammography and pap smear screening. When we looked at mammography, there was only about five percent had never heard of mammograms while the percentage for pap smear screening, which you'd think would be more—has been out there more, they'd be more aware of it, we had ranges of anywhere from five to almost 18 percent with 18 percent of the Puerto Rican community saying they had never heard of a pap smear. These surveys were in English and Spanish, and they were also done by individuals from their own ethnic group and so forth. So, you know, we tried to reduce any barriers to responding correctly to the questions. Then, we asked them "Have you heard of the guidelines and do you know what the guidelines are, how often you should come in for screening?" Well, about 40 percent of them did not know what the guidelines were, how often they should come in for screening. Then, when we looked at knowledge, that meant they had heard about it and they knew how often to come in, we had about 50 to 60 percent in the mammography area but only 40 to 50 percent in the pap smear area. So again, in terms of cervical cancer, which is an area that we can eradicate, we need to do more education efforts there for Hispanic women.

In terms of attitudes towards cancer, we—can cancer be cured? About 20 percent of our population disagreed with that statement. They didn't think cancer could be cured. About a little under 40 percent, 30 to 40 percent, believed that there was little they could do to prevent cancer. They agreed with that statement. And then, about 20 percent said that they were highly likely to get cancer over their lifetime. So what are the facts in terms of Latinas and breast cancer? We have the third highest rates among all minority groups for breast cancer. We have the third highest mortality rates for all the groups, and it's the most commonly diagnosed cancer, and it's the leading cause of cancer death for Hispanic women. And it's diagnosed at a more advanced stage of the disease. I still have doctors say that women come in with tumors that are so large that their skin is falling off, but they think it's healing because they've waited so long, you know. So this misinformation that's out there in our communities is incredible. Uninsured women are two to three times more likely to be diagnosed at a late stage. It makes sense. And the survival rate is poorer for our communities than among non-Hispanic Whites.

I'd like to mention a little bit of the myths, and I know in talking to my colleagues at this table that, you know, we're always talking and cheering in terms of, you know, the different kinds of cancer myths. And one of them is that a bruise on the breast will lead to cancer. Well, the stories that women give me says, "Well, you know, I was in the office and I bumped into the file cabinet. And I had a bruise, and so when I went to go see the doctor, the doctor told me I had a lump. And then, when they checked it out, it was breast cancer." So they associate the bruise, but it was already there. What made it was when they got bruised, it hurt, you know. So finally, that made them go and see the doctor. With regards to breast cancer surgery, they're afraid to have surgery because they think it'll spread. Well, why? They hear of friends who have waited so long to go see the doctor that by the time they have the surgery and they do have it, it has spread. So it's this association, and it's these rumors and misconception that really get spread in our community. The one that I love is that too many mammograms can lead to breast cancer, and our women call it the tortilla press. Get under that machine and just press your breasts, you know. And it's like it hurts, and we don't want to do it, you know. I've never forgotten that one. And oftentimes, they feel that mammograms are really only used to help diagnose the breast cancer and not for an early diagnosis. They also feel that touching the breasts too often can lead to cancer, talking about cancer. We all say that we don't want to use the C word because we're really afraid about getting cancer, that using illegal drugs can cause cancer, or that herbs can cure cancer. Uniodegato was one that was for a long time. It's a vine that grows in Peru that was being promoted as potential cancer cure.

The other thing I wanted to mention is, again, clinical trials. We are underrepresented. We have less than three percent of all minority groups participating in clinical trials, and we need to improve that rate for everyone. So what we've tried to do in terms of our collective sites across the nation is we did a national campaign. We work with the National Cancer Information Service of the NCI to help us distribute our materials and get these PSAs in both English and Spanish in over 700 radio and television stations. We've actually won some awards because we really focused on the cultural values of the Latinos in terms of the family, the strong ties that they have with their family members, and focusing on religion and hope and so forth. And they were very well received. What we found out in this study is that clinical trials is a very complicated subject, and it's not very easy. And we didn't call them "trials." We called them "cancer research," because trials to them was like, "I didn't commit anything. Why am I going to trial?" You know, it's these kinds of things. And so it's the clarification of those terms are extremely important. So we generated phone calls, but the phone calls were more to get just general cancer information and not necessarily information about clinical trials.

So then, we developed a more interpersonal approach in trying to increase awareness about clinical trials and tried to link this to a national cancer genetics network that was a database. It wasn't an active trial. It was getting people on the database that were at high risk for cancer. And we did this in each of our sites, and we were able to give 40 presentations. This is just over a six-month period of time, reached over 1000 people, predominantly Hispanics and females. And there was a desire to learn more about it. This particular database had very nominal representation of minorities; and again, if we don't have equal access to these clinical trials, how can we ensure that the treatments will be good for everyone? So it's something that we need to be very proactive. On conclusion, some of the recommendations that we have heard throughout the day are consistent with some of the ones that I had, basically that we really need to increase awareness. We need to increase educational information to our communities, and we really need to get them to participate in preventative behaviors. And we need to get them involved, both men and women, in all the types of screenings that are available. In terms of training, again, we've heard about the need to increase students of color into these health professions, into becoming researchers. We need to promote cultural competence curriculums, and we need to make sure that we start it from the pipeline, that from the get-go, they're being exposed to cultural competency.

With regards to patient contact, cultural competency just doesn't reside with the provider of care. It resides with the receptionist at the door or the person who answers the phone because you just need to take one negative vibe, and you will not get through that system. We had a study in which we were working with a health department in outreaching for breast and cervical cancer. Our outreach workers were doing a beautiful job. They were getting the women to call, but one of the outreach workers happened to be by the receptionist's desk, who could not take a call in Spanish. And so therefore, we ended up having to give our outreach worker's cell phone so that the women could call them and then they could facilitate making the appointment for them. So this requires some system changes that we need to be innovative about. And in terms of research recommendations, you know, we need to look at the full spectrum of Latinos. We need to study the impact of cultural competency on health outcomes. But I really like a contact that I heard from Ann Biel from the Commonwealth Fund yesterday where she said, "You know what? Cultural competency is just the right thing to do, you know. We have to do it whether it works or not. It's the right thing to do."

And then, secondly, if we have good, positive outcomes, that's great. And studies are beginning to show good outcomes; but again, if you tell your institutions it's the right thing to do. And then, lastly, I'd like to recommend you to go to our website, readyinaccion.org or saludinaccion.org. we have a whole report on Latinos and cancer that we had input from key opinion leaders and Hispanic experts looking at research awareness and training of where you can perhaps guide your community, and this was represented from nationwide. So mil gracias. Thank you so very much for everything.