M. D. Anderson Cancer Center
Date: 2/2/2008
Duration: 0 / 37:13
Venus Gines, Dia de la Mujer Latina
So we're going to finish up with Venus and she asked us to go ahead and launch her video which will show her and the cultural competency material for the Latino community, so if you would turn that video on. We'll do it that way.
[video]
Hello, everybody. I'm Manuel Teodoro.
And I'm Maria Arita. Bien venidos. Welcome to another edition of Hispanics today..
Our health requires diligent care to prevent disease. However, Latinos are prone to stay away from the doctor's office unless we are sick. With millions uninsured, it's tougher than ever to stay one step ahead of health problems. In Atlanta, Georgia, the Latino community comes together to take care of itself and one another.
Preventative health care is critical to reduce the risk of future disease, yet millions of people do not visit a doctor unless they think something is wrong.
One of the major reasons I don't see a doctor is because it's expensive.
Education is another barrier. The need to educate them on the need for a yearly Pap smear, yearly mammogram after you're 50.
Almost 11 million Latinos in the US do not have health insurance, yet they suffer from some illnesses in higher numbers than other ethnic groups. Over 10% of the Latino population has diabetes. Latinos have higher cholesterol rates than non-Hispanics. The number of AIDS related cases for Hispanos is also on the rise. Yet Hispanics continue to resist seeing a doctor. Some are afraid to have their worst fears confirmed. Others are modest about their bodies. And millions of Latinos do not speak English.
Following the breast. They need to know they keep going straight. Straight up and down. Straight up and down.
These barriers keep thousands of Latinos isolated and sometimes unaware of available medical resources.
If you go to outlying counties, I mean there is really no interest and a total dissatisfaction with the Latino community.
One Atlanta resident knows how tough it is for Latinos to care for their health. Venus Gines is a flight attendant who twisted her ankle in 1992 during a routine trip from St. Louis to Los Angeles. She went to her doctor who found a lump in her breast. Gines spent several anxious days awaiting the results of a lumpectomy.
By the sixth day, I was getting really nervous because two days later I was going to start law school and I was determined to start law school no matter what and I got the call and the words were, Venus I wish I could say it was benign and I dropped the phone.
At the time, she was diagnosed with breast cancer, Gines was a 41-year-old single mother of two children. Devastated by the news that her life may be at stake, Gines decided to get smart about her disease, especially since she felt she couldn't rely solely on her physician.
I'll never forget the doctor when I went to see him with my 20 questions, he said, 'You know, I don't have a whole lot of time to answer these questions, but what I do have is the latest New England Journal of Medicine.
Gines took matters into her own hands, summoning the strength to research her illness. She was alarmed by the lack of information available in Spanish. Once again, Gines took charge, contacting the American Cancer Society to help her create information about breast cancer in English and Spanish. She then rallied Washington to address the lack of culturally appropriate health information available to Latinos. Along the way Gines found her calling as an activist.
Other than knowledge other ways that we can help our community and I realized that so I will probably end up getting back to graduate school, finishing, getting my doctorate degree and continue my work with breast cancer in Latinos. We definitely need more Latino researchers that's, that's obvious.
In 1997, Gines created Dia de la Mujer Latina, Inc. to promote health awareness to Atlanta's under-served Latino community. Last week it hosted its annual health fair where over six thousand Latinos showed up to obtain free and low cost medical services. Doctors, nurses, interpreters and over 300 volunteers donated their time on a Saturday afternoon to offer free Pap smears, mammograms, breast exams, prostate screenings, and countless other services. The staggering turnout confirms that in too many cases, the demand for healthcare services far exceeds supply. In the meantime, pioneers like Gines continue to give back.
I am taking care of my people. Here I thought I was going to do that as an attorney working on civil rights and now I am doing something even bigger that I never imagined and it was all because of this slip and fall in the airplane.
Dia de la Mujer Latina is testament to the commitment shown by Atlanta's Latino community to help its own, until everyone in the US has access to healthcare, these events and their heroes continue to fill a critical void.
We want to take care of this ourselves. Latino want to get together and want to fix our problems and we are doing that.
We are happy to report that Venus Gines beat cancer by catching the disease early. Breast self-examinations are the most effective means for detecting cancer at a treatable stage.
[Pause]
Thank you. Can you all hear me okay. Do I have this on? Mic is on.
What should I say, when I started this because we've already gone through to start his the afternoon so I will try to make this very, very short because I have another video that has, that you will hear the voices of 12 Latinos from 12 different non-American countries talking about health disparities. So I want to just go ahead and talk real briefly. Why is it important? We've already heard about the importance of being culturally competent and Lynn... Okay. Lynn has already talked about that and not only is it important because it could save a life, but it's also the law according to Title 6 of Civil Rights Act, hospitals and clinics getting federal funds must be able to communicate to their patients. I don't know what's going on here, but... And to be competent before you used to say being culturally sensitive that was an 80's term and then we went to being culturally appropriate the 90's term, and now we have moved into being culturally competent. Hopefully, in the next few years, we will look at being culturally proficient where we will start learning some of the key Spanish terms and be able to communicate a little bit better with our community. We are a mix of 22 different countries of origin, so we don't all speak Spanish, even though Spanish is spoken in all these countries including the United States, but it does not define us. When we look at the term Hispanic and Latino we must understand that the term Hispanic... okay, that the term Hispanic was born during the Nixon administration because they needed to box society, I want to say categorize us into a term that was appropriate and this group of government employees and three community organizations got together and they decided to call us Hispanic because we all come from Spain and we all speak Spanish when in actuality Spain came to us and we have always been there, we are Latin Americans and when we talk about Latin Americans, we are giving credence to our brown skins and we are proud of our brown skins, proud of our indigent communities and what we have learned about the resilience of our native people. This is increasing as we speak. You know, we represent 14% of the US population and we have 20 million children that are Latinos, but we feel that those numbers are skewed because we have a lot more that are undocumented. And 64% of our young girls are mothers, this is one of our issues that we have, we are dealing with as a population and it is because traditionally in our culture by the time you are 15, you'll hear okay signora, you are ready to get married and these are, these are traits and characteristics that are brought here into the United States and the families think it is okay to go ahead and immediately get pregnant and have children and because that is God's way of blessing you as a family. We as community advocates are trying to educate our community that there are a lot of opportunities like college and careers and that motherhood could be postponed a little bit longer until you are financially able to take care of all your children. We know 31% of our Latino Hispanic children are have lack medical insurance. Getting back to the term Hispanic, we feel that our community is composed of people from Latin America, but we are all not all speaking Spanish, for instance, in South America, go over here, in South America, and I've lost it somewhere here, we have the majority of the people speak Portuguese and people think what I thought South America everybody speaks Spanish in South America no. In South America, 51% of the population in South America speaks Portuguese and Spanish is the second language spoken and of course we have other dialects. Here in the United States, the Mexican population is composed of two-thirds of our Latino population and most of them have been seasonal and migrant workers, but we are seeing more coming into United States and staying here, getting their jobs, having children, and their children going to school here and they are acculturating, but they are still not welcome. Their labor is welcome by those who want to take advantage of their labor, but they are not welcome here whereas Puerto Ricans are different. Puerto Ricans are born US citizens, so they can come and go as they please. Cubans were also welcomed here during the Cuban Revolution. They were exiled from Cuba, so you have two groups, two prominent groups that were welcomed and can assimilate very easily, but the Mexican population has had a more difficult time. Central Americans also most of them are refugees and they are protected by the TAPAC, which gives them asylum as the majority of the Central Americans are living in the Washington DC, Maryland, Virginia area and also some in Florida. We have, we are like I said a mix. We have the Afro-Latinos that are in the Caribbean area where we have Cuba-Hispaniola and Puerto Rico and as they were transporting the slaves from Africa they would drop them off in the Caribbean islands before they would get to the mainland and we have developed a lot of our oral traditions and our music from the Afro-Latino heritage. We have also Euro-Latino. In Argentina, the majority of the people speak Spanish and Italian, so and in Uruguay as well. We have a lot of German, English, Welsh, Arabic, and European Jews living in these two countries. Indo-Latino we have, we see more of the Indo-Latinos in Central America, mostly in countries like Nicaragua and Costa Rica and of course we have our this is where we developed from the African culture, we developed our spirit of survivalship and spirituality and we also have a lot of our folk medicines coming from the African culture. Also from the indigenous culture, we also have our sense of whether how we worship the earth, mother earth and nature and from the Spanish culture we have of course the language and the Catholicism and a spirit of adventure. We do have some similarities in language. Some of us are bilingual. We have similarities in our history. We are children of the conquest and we are as far as geography, we are, we are still considered third world country, that's way it's very difficult for us to think that as Hispanic Latinos we all are the same because when you think about Spain, you think about European, part of the European continent and it's like apples and oranges when you think about Latin America. We already talked a little bit about time orientation and spoke about that. For us, time is not a deadline, it's a guideline. Level of education, we are seeing this changing right now where the children have a position now in the family, because the children now are becoming interpreters, they are the ones that are taking their moms to the grocery store and being serving telling them what is going on, but they are also the ones that are getting the education. When you are communicating, there is no need to raise your voice. We have seen that with interpreters it's very important for you and when you are talking to our community if you don't understand it's very important to get an interpreter. When you do have an interpreter, it's very important to be looking at your patient and not at the interpreter at all times. And of course we have already talked a little bit about this in Lynn's presentation basically the same thing, the politeness, the pleasantness. They will shake their, they'll be very happy that you're giving them brochure they don't, they will not read it, they will probably throw it out as soon as they walk around the corner, but they will never let you know that there is nothing that they can understand in the first place and they do respect the providers. They look at them as God, so again if you are asking them some questions, they are going to look at you as you know you should already know this information, but and then personalism is something that's very important in our culture. You know, when you are getting real close to a Latino, make sure you have established that relationship first before you get too close. We have our healers and this is something that we have that's very Latino and our with our cur'anderos we have several ways of healing certain illnesses and Espiritismo in Puerto Rico use the spirit guides so when you die if you don't go straight to heaven, you stay on this earth and you work with people who are on this earth to communicate not only to your loved ones but to any one in need and they can be misconstrued as healers because they use the religious the Catholicism they use saints, but they also use other things that may be dangerous to health and wellness so when you are communicating with your patient find out if they are going to a Botanica. Find out if they are looking at other ways of healing. In a few minutes, I will show you what I did when I had my breast cancer. But right now one of the things that's real popular in Georgia where I come from is sobadora, massage when you are feeling a lot of pain, you don't take medication for pain, you just go to a sobadora whether it's headache or stomach ache. Barriers, we can't say enough about accessibility, availability, and affordability. I'm not going to get too much into this because this is going to be seen, will be here in the next video. When you are triaging it's very important to ask them about their culture. Make that connection and recognize that there are differences in the cultures, not all of us are Mexican and so it's very important when not to assume that because he speaks Spanish that they all conform to the same beliefs whether it is religious beliefs or attitudes about health. And discuss these issues openly with them and respond to certain cues like I said work with your interpreter and if, it's possible try to learn Spanish and one of the ways that I was tell my medical students if they are married or have a significant other watch the soaps at night the Telenovelas it does wonders for your sex life because they are very steamy, but they also have, the language is very easy to pick up because they pretty much say and state a lot of the same phrases over and over again and they have, what we call a speedos, you know, the haah, the, and I am going to go right into the CD that we have because it talks a little bit more about acculturation, the differences between acculturation and assimilation. And when you are looking at health promotion, these are the ways to do it. Your television, your newspaper, but more importantly your health fiestas and that's what we do with our organization.
Ready.
[video playing with music]
My name is Juliana Pinnacle. I'm a physician from Brazil, an OB/GYN. You know in Brazil we have theoretically a great thing, which is a Public Health System that serves everybody, but not always it's a good service and the poor people of Brazil have to rely on the government for their health and people who have means to afford health insurance, they pay their own and they don't rely on the government at all. And you know the poor people have to go and stay in lines for ever, they have to wait for hours and sometimes the doctors are not as nice as they should be and they don't give the care that the patients really deserve.
I am from Uruguay. In my country, there are two kinds of Public Health Systems. One is known as public health that is for people based on income level, the other is private health that people pay a monthly fee. The care is very good in both. You pay a monthly fee and then when you get sick you don't have to pay. You go directly to the doctor. In the extreme cases where surgery or hospitalization is needed, one doesn't have to pay extra, it is all inclusive in the monthly fee.
I am from Honduras. I come from a very poor country where health care is very limited. If one goes to the hospital, there is very little they can do for you. The hospitals have limited numbers of doctors and medicines. The poor people cannot get help because the government doesn't have funds. The Venezuelan Women Support Programs at the family level and work place. They have a lot of faults. Even though our country is wealthy and it is know for its potential, the government programs at this time are not sufficient for everything we need. Their help at this time has diminished in proportion to what it should be.
My name is Rocio Woody and I'm the Director of The Road to Recovery. In Peru, the health care system is free of charge, truly it's not the best healthcare system in the world, but at the same time it is healthcare system that you can go and you can afford and here in the United States to me it was shocking first of all that there was no coverage, your health coverage for anyone, I mean you have to have either a job or insurance or you have to qualify for it, a welfare type of program to be able to access the healthcare, to have access to healthcare to me that was really shocking because I didn't understand how in the United States with the wealth that we have in the United States we would not have a Public Healthcare Program that is accessible to everyone when in an underdeveloped country like Peru we have one.
Even though I followed the doctor's recommendations and I went on the tamoxifen cancer trial, I still went back to some of the home remedies and I took castor oil, heated it up, soaked a towel, and placed it over the breast to decrease the tumor and now I am cancer free and it could have been the home remedies, it could have been the tamoxifen, it could have been prayers, but I believe it was all of the above.
Going to the hospital or the clinic is very expensive, so people do not go. Instead they go to a friend or a neighbor that recommends any remedy in order to alleviate the ailment. People try to solve their health problems by themselves as long as they can.
I was born in Cuba and was raised there until I was 26. I am from the countryside, all things we use to take care of our health were natural. I used natural medicines. We cured ourselves with herbs and natural remedies. Because medicines and vitamins are expensive, one made their own natural medicine. Sometimes it creates the right effect and sometimes it's counterproductive.
[Music]
You especially should listen to the women's voices because women are the family's biggest caretaker or the women are the caretaker of the family and it's important to listen to what they have to say as to what the barriers are. When you listen to Latinos speak, especially women, they always talk about two barriers in specific. One is information and the other one is communication. The information is where do I go to get healthcare for me and my family.
When I was diagnosed with cancer, the first thing I did is to try to find out if there was other Latinos who had cancer, if that was just something very prevalent to Latinos and I found out that there was very little statistics about Latinos and breast cancer. I didn't know too much about breast cancer so I figured okay I'm going to try to find some information in Spanish, which is my native language. There was very little information about breast cancer in Spanish. When I went to the doctor with my 20 questions, the doctor told me he didn't have time to explain all that to me so what he did is he made a copy of the latest New England Journal of Medicine back in 1992. I sat in my car and I just cried because even though I was college educated I still couldn't get past the first paragraph.
My name is [inaudible]. I am a nurse from Puerto Rico. I tried to look for information in Spanish about cancer and there wasn't much in Spanish. Even though I worked with American doctors as a Latina I would prefer to have the information in Spanish.
I am from the Dominican Republic, Santo Domingo, which is the capital. If someone doesn't have a person who can understand them, the 2 to 3 hour waiting period could easily become 12 long hours of waiting.
I had to sign some documents so I could receive my surgery, but because there was no one who could explain them to me, I didn't know what those documents were for. I luckily found a Puerto Rican that helped me fill out the paper work. Because of that person, I think my surgery went a lot easier.
They found a tumor and I felt they would give me the information in Spanish, but no, they didn't give me anything. The information was in English. They ended up putting an interpreter over the phone so I could understand the information.
I am not secure in the States and believe me from one who comes here to improve one's life and to escape the calamities of our own countries, it's hard because you get sick, bills pile up and one doesn't know what the bills are for. With the jobs we have, there isn't enough money to pay. I am even scared of getting sick.
[Music]
In Columbia, there is more communication with the doctor. You can communicate more there than here in the US. Here there is no time to tell the doctor what one is feeling. If I forget something because of my age and go back to tell the doctor that I forgot something, I cannot. There is very little time with a doctor here.
When you see the doctor here in the US, you see the doctor for only a few minutes. His attention is more divided.
[Music]
Ma'am, your blood pressure is a little high today.
Doctor I don't understand.
Your blood pressure is high.
Doctor I don't understand. I don't speak English.
Your blood pressure is too high.
There is definitely a difference between translation and interpretation. When you translate you say, see ya chair. When you interpret, you take it one step further. You take it to the park where you are not only talking about the language but you also are interpreting the social cues, the body language of the person, and really understanding where that person is coming from and what they want to say to the provider.
There are two main barriers for health care. One is the cost and the other is the language. Most of the time my mom, for example, needs to come with someone who can translate for her. Otherwise, she won't be able to communicate with most doctors.
The doctor who did my surgery was American. Every time I had a post surgery appointment with him, he would be frustrated at me because I didn't speak English. The clinic was big and there was only one interpreter who usually was busy with other patients. When he spoke to me, I didn't understand and that was that. I spent 6 days at the hospital and I was sad because there was no interpreter who could help me. I had to rely on my visitors to ask questions to the nurses and understand what was done to me..
The health system in the United States is good, but sometimes one needs to make sure one goes to a good doctor because with the language barrier, it is difficult. Besides, there is not much time, there is too much bureaucracy, too many papers to fill out and one never knows.
The first barrier I find is the language.
The experiences I had with Latino patients are that they are more comfortable once they know the nurse and the doctors speak their language.
I really was very surprised to see how Hispanics didn't speak any word of English and how happy they were when they found out that I spoke their language and that I could communicate with them.
My name is Karen and I'm the [inaudible] which is a health educator. My parents are from Puerto Rico and when they arrived in New York, they didn't speak English so when one of us needed medical care, they would go to the emergency room, which was a problem because no one spoke Spanish and my parents didn't speak English. And it wasn't until my sister the oldest was about 10, she served as the family translator. She would be the one that would translate everything for the doctors to my parents and back and forth, so the brunt ended up on my sister.
Spanish from Columbia is different from the Spanish in Mexico from the Spanish in Peru, from the Spanish in Bolivia, from the Spanish of most Central American countries. There are different words for different things, so you have to, you know, become accustomed and comfortable asking these questions and being very, very tactful what questions you can and cannot ask and in what context and when to ask them because sometimes women will not be able to express themselves freely in a setting where their husbands or their, so you know you have to have the men leave the room or sometimes you cannot ask a question unless the man is in the room, so you know you have to understand there are certain cultures and even being a doctor in my own country, I would find that my language was a little bit different from somebody who was living in a rural area.
[Music]
It's not only important to be able to speak the language but also to understand where these people are coming from.
A patient should not leave the office until he or she is well aware and understands what the doctor means. Communication is vital in the whole process. Again, patience and good manners to Latino patients. Treat them well and be patient with them.
[Music]
It was very important for me to let you listen to our people because I listen to them constantly and it breaks my heart when they come with these stories and I think it's, it's also very crucial as clinicians and researchers to understand that there is also another issue that wasn't pointed out here and something that was very personal in my life. It was the history of medical abuse. My mother was 29 years old when she was told that she can have her tubes tied and so doesn't have to worry about getting pregnant again and they never told her that it was a permanent procedure and she just thought that when she was, when she would remarry, she could just have the tubes untied and my mom was devastated when she realized and when she got married at 32 that she could never have children and this happened in Puerto Rico during the 1939 there was federally funded program that went out to the island of Puerto Rico which was not a Commonwealth at that time, it was just part of the Budi Priseman [phonetic], Hispanic Spanish American War it was just not developed very well and so the government here in the United States thought that they needed to overcome the population, combat the overpopulation in the island, so what they did is that they set up 150 birth control clinics to do a grant from Peter Gamble from the Procter and Gamble family and they were going around telling the women that all they have to do what we would call Le Parasion [phonetic] they just had to tie their tubes and when I was growing up, women in New York City, the women would gather in the kitchen and they would talk about Bellevue Hospital that that was called butcher hospital and they would talk about the fact don't ever go there because if you go, you will never come back out. I grew up listening to this and my mom always told me, never go to the doctor unless you're going to have a baby. So the only time you should ever go to the doctor here, because we are Puerto Ricans and they use us for guinea pigs. They use us for guinea pigs for the during the era of contraception and with the sterilization abuse that took place not only for Puerto Rican women, but also Mexican-American women. We are seen as just that guinea pigs, second class citizens and so even though I was college educated and language wasn't a barrier for me, even when the doctors said you know I found a lump on your breast, you need to get a mammogram and he gave me the prescription to get a mammogram, I held on to it and I didn't go. It was a week later when he called, a couple of weeks later when he called and said there was something else that they'd found in one of the blood works that they, that they did and I, and he asked me have you had a, did you get a mammogram. And that's when I realized okay I need to get this mammogram, but even then I was very hesitant because all I could remember is the fact that if I go, they are going to try to experiment on me. And it wasn't until the doctor, you know, told me that I had breast cancer and he said I had to have a double mastectomy that I immediately called my family and The Spiritista [phonetic] in Puerto Rico and some of the people that I knew about folk healing and what should I do here and there and I tried everything, but the last thing I wanted was the surgery. And luckily for me, Dr. Susan Love who is the guru of breast cancer was on TV and a friend of mine called me, she said there this wonderful woman, a doctor who is talking about breast cancer. You should try to see if we can see her and I did and I called and I said look it's very important that, I'm a single mom that I see her for second opinion because I have a doctor who's telling me I have to have a double mastectomy and I have another doctor who's telling me that because of my lupus I can't undergo that kind of surgery. So even though I know I'm going to die, I am a single mom, is there any way that she could see me for a second opinion and she did and I went to California and she sat down with me and she drew the breast and she explained that we are going to do this lumpectomy and it was then that I had faith in a doctor because she sat down with me and she took the time to talk to me about my disease and we became partners and it was very exciting for me 10 years after I had become an activist and had done so much work in the community educating Latinos about breast and cervical cancer that she gave, she was the one that presented the Visions of Hope Award at the San Antonio Breast Cancer Conference and it was because she inspired me and it's so important for you as physicians, as clinicians, as researchers that you have to develop that trust in the community and once you do they will be very loyal, they will abide by what you say, but you have to take the time to invest and providing that that communication and that information that they so desperately need. And I have a lot more in the PowerPoint presentation. This is a four-hour class that I have at Morehouse School of Medicine and here at Baylor so I will provide the PowerPoint presentation for anybody who needs it, but I don't want to keep you any longer so unless somebody has a question, I would be glad to answer any questions.
[Applause]
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