Latino Community Grapples With HPV Prevention, Treatment

Tell Me More goes Behind Closed Doors to explore the disproportionate prevalence of HPV/cervical cancer among Latinas. Los Angeles County has the highest cervical cancer mortality rate in California among Latinas. According to the California Medical Association (CMA), Latinas do not get screened as much as other women because of cultural norms and an aversion to talking about sex-related issues. Host Michel Martin speaks about the cultural aspects that may contribute to the high incidence among Latinas with Susan Carrillo, a cervical cancer survivor and Jane Delgado, President and CEO of the National Alliance for Hispanic Health.

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MICHEL MARTIN, host:

I'm Michel Martin, and this is TELL ME MORE, from NPR News.

Coming up, my weekly Can I Just Tell You commentary. That's in just a few minutes.

But first, we go Behind Closed Doors, as we often do on Mondays. That's where we talk about issues people often keep private. Today, we're going to talk about why Latinas are experiencing a disproportionate rate of cervical cancer caused by the human papillomavirus, or HPV. The Centers for Disease Control and Prevention report that Hispanic women have the highest rate of cervical cancer caused by HPV, followed by black women, then white women, then Asian-American women.

Meanwhile, the California Medical Association foundation finds that Latinas aren't getting screened as often as other women, and are least likely - in that state, anyway - to get a pap test that shows the presence of HPV virus. The foundation says the lack of screenings could be a result of cultural norms and the aversion to sex-related conversations.

We wanted to talk more about this, so we've called upon Jane Delgado. She's a psychologist. She's the president and CEO of the National Alliance for Hispanic Health. And she joins us often to talk about matters of health for all people. Also with us, Susie Carrillo. She is from Redlands, California. She's a one-time cervical cancer patient. She's now free of that cancer. And she since joined the National Cervical Cancer Coalition to help other people fight the disease and to get informed.

And I welcome you both, and thank you so much for joining us.

Dr. JANE DELGADO (Psychologist; CEO, National Alliance for Hispanic Health): Thank you for having me.

Ms. SUSIE CARRILLO (National Cervical Cancer Coalition): Thrilled to be with you.

MARTIN: So, Jane Delgado, would you first tell us what HPV is and how it's connected to cervical cancer?

Dr. DELGADO: Well, HPV is not one virus, but over 100. And that's something important to know, because as you know, people are very concerned about, oh, if I have it, does this mean I'm going to get cancer? And in most cases, HPV will clear itself. And there is no cure. There is no treatment. But if HPV persists, you can be someone who will get cervical cancer, which is why regular screening is key.

MARTIN: Now, I want to talk about the scope of the problem, and this is some data from the Centers for Disease Control and Prevention. Now, they say that it's estimated that about 10,800 new cases of HPV-associated cervical cancer are diagnosed in the U.S. every year. They say that for every 100,000 women, about eight white women, 13 black women, eight Asian Pacific Islander women will be diagnosed with cervical cancer. That's per 100,000 women. But about 14 Hispanic women were diagnosed per 100,000. Why would that be?

Dr. DELGADO: The major reason is because Hispanic women don't have a regular source of care. What we know is when we did studies, you know, of Hispanic women across the country, most of them told us that they didn't have a regular source of care. If they had an HPV result that was positive, no one told them that they had to come back. And it's very important to come back, 'cause that's how you can prevent cervical cancer. That any woman in this country has cervical cancer should be a source of embarrassment to us as a nation.

MARTIN: And there are no symptoms, is that right?

Dr. DELGADO: Well, that's...

MARTIN: There's nothing that hurts.

Dr. DELGADO: Exactly. And most women don't want to go in and say, listen, I want an extra test because they feel fine. But the fact is there are no symptoms. That's why having a good relationship with your health care provider is key.

For example, some women think if they have a pelvic exam, that that's a pap test. It's not. A pap test is very specific, and they have to request it. And if they're HPV positive, they need to make sure that they go for those pap tests much more regularly.

MARTIN: Mm-hmm. So, Susie Carrillo, will you tell us your story? You have a personal history with HPV and cervical cancer. Do you mind if we ask how you first learned your status?

Ms. CARRILLO: Well, I found out at the age of 19. And when I was told I had HPV, doctor didn't make a big deal about it. So I didn't make a big deal about it. It wasn't up until I had my second child at the age of 23, when it had already progressed. And it's hard for me to talk about the subject, even to this day, even now that I've learned about it. Because, you know, growing up, you don't talk about sex. You don't bring up the subject. You know, you don't go to the doctor unless you're sick.

And what I mean by sick is, you know, you got to be dying in order to go the doctor, or you have to have a broken bone. I didn't see a doctor until I had to go in and get prenatal care. And had I never gotten pregnant and gone in to go get prenatal care, I would've never found the HPV or the cervical cancer.

So, you know, in my household, my mom says, you dont go get that pap smear because only girls that are sleeping around, that's a test for them. So thats why I never made a big deal about go to go get a pap smear. I, you know, my husband is the only one I'm with. I'm not cheating. I'm not doing anything so theres no need to go get a pap smear.

MARTIN: Can I just stop you? And first of all, let me just thank you for being willing to talk about because I am sure there are others who will hear you say this and will say thats me. And we can hear your reluctance and we do appreciate your still making the effort to talk about it even though it's hard. So I just want to say thank you for that. And I also want to bring up another difficult subject, which is that when you did go in and it was clear that the disease was progressing, it's my understanding that the doctor called your house, talked to your husband and he reacted very poorly about this.

Ms. CARRILLO: Well, the doctor did call. He heard the words cancer. He was very concerned. We went to the doctor and that's where the doctor explained how cervical cancer came to be. It was because of HPV, an STD. So that's when he flipped out. Accuse me of cheating. He was disgusted by me. He wanted to know who I had been with, who - how many men have I been with, how many times have I cheated on him. You know there was no longer that support that I thought I was going to have, going through the treatments.

MARTIN: Suzy, do you think that that was a cultural problem or do you think that was just ignorance?

Ms. CARRILLO: I think that was on his part ignorance, and it continues to be ignorance on his part. But knowing that there's ignorant people like him out there, it's what makes me want to do this even more because I don't want any other woman to go through what I went through.

MARTIN: How are you doing now?

Ms. CARRILLO: I'm doing much better. I've had my regular pap smears, everything's been clear, no sign of it coming back. But I stay on it now, now that I know that theres that some danger, you know?

MARTIN: Jane Delgado, can I ask, have you heard of similar stories like this?

Dr. DELGADO: Of course. Of course, because very often what we know is that the woman gets blamed for having an STI, an STD of any kind. And men, their responsibility in these things are always a source of concern, because its a partnership and sexual intimacy requires two people and sexual transmission also usually requires two people.

MARTIN: Is HPV a sexually transmitted disease?

Dr. DELGADO: Yes, it can be. And its transmitted by oral, anal or vaginal sex. And I think thats something which is very important to realize. Some people think oh well, I didnt have vaginal sex. I'm okay. But there are other things that people engage in as part of the sexual intimacy and those things are also high risk behaviors. And condoms do not provide 100 percent protection. They provide some but not all.

But I think the issue is the whole relationship between men and women. Sex is one of these areas where power relationships are key. And too often we as women aren't there protecting our own bodies when we know that sometimes the man may have been, or a partner may have been with someone else.

MARTIN: We're talking with Jane Delgado, the president and CEO of the National Alliance for Hispanic Health, and Suzy Carrillo, shes a volunteer with the National Cervical Cancer Coalition. We're talking about HPV, the human papillomavirus and how it affects particular communities. We're focusing today on Latino women who have the highest incidents of cervical cancer caused by HPV in this country and we're talking about why that might be.

Suzy, I'm so glad to hear that things are going well with you. But this has to be a blow to kind of not only have to fight for your health but then also have to kind of fight perceptions. Can I ask how the rest of your family dealt with your illness?

Ms. CARRILLO: Well, because of the shame that my ex-husband made me feel at the time, I kind of kept quiet about it. When I did try to talk to my sister about it, I mentioned it to her over the phone and her reply was oh, isn't that an STP(ph)? And as soon as she said that I shut down. So I didn't even want to talk to my family about it. When I did talk to my mom about it I just told her it was cervical cancer. I didn't tell her about HPV. I didn't tell her nothing. I had my mother's support but I left out the HPV because I was ashamed. It wasn't up until I filed for divorce and I decided to take it on my own to learn what I had gone through.

When I was going through the procedures it was so painful. All my emotions, I shut down. I didn't want to show any emotions to my ex-husband. I just wanted to get it done and over with. And thats when I Googled cervical cancer and the National Cervical Cancer Coalition came up. And I started reading other womens stories very similar to mine and I knew I wasnt alone. I decided, you know what? I want to share my story. I want to talk to women. I dont want women to go through what I went through because there's nothing to be ashamed about when it comes to HPV or cervical cancer.

HPV is a very common and easily transmitted sexual transmitted infection. Right now its, you know, theres vaccination. You know, you could get vaccinated from the ages of nine to 26. Take advantage of that. Get tested regularly. You know, go to your yearly pap smear. Ask for the HPV exam. You know, find out. You know, be your own advocate. Talk to your provider. You know, you do have to have a good relationship with that doctor. Ask questions. You know, you got to feel comfortable. I still dont feel comfortable with my doctor because of the way I was brought up.

MARTIN: You mean to not talk about these matters openly? Is that what you mean, Suzy?

Ms. CARRILLO: Yeah. Its still hard for me to talk about these matters openly. Its hard but I want to do it. So its something you have to do. It's pretty much be your own advocate. You know, no one else is going to be there to tell you to do it. You know, you have to do it for yourself.

MARTIN: Jane Delgado, what would you add to that? you talked about the vaccine. Suzy Carrillo told us about the vaccine. I was going to ask you about this. You know, this is controversial. A number of jurisdictions have strongly encouraged, in some places required, you know, parents to get the vaccine. But there are a lot of people who are hesitant because they'll say the same thing that Suzy Carrillo said that her mother told her, which is well, that's only for girls who are, you know, out there and we don't, you know, need this. Do you think that that's a good option? And tell us what else you think people should be doing to protect their health.

Dr. DELGADO: I think the vaccine is very important. But also I want to tell Suzy that as a very young woman she went through lot. It shows her inner strength, how far shes come and that she was able to go through everything. But the main thing is to talk about these things. That's why, you know, our outreach to Hispanic women is lets talk about cancer, because these are things in health we don't talk about and we need to talk about because there is treatment. There is cure. It's not a reflection on you; it's just sometimes our bodies don't work as well. Some people's bodies clear the virus, some people's bodies don't. And then when they don't then we need to make sure they are healthy.

But theres some things which are very interesting. For example, if you have HPV and you are a smoker, you're more likely to get cervical cancer. So, in fact, you know, there's certain things, the vaccines are very important. They shouldn't be controversial. It is unfortunate people made a controversy out of something that's protecting our daughters. And most Hispanic families that we spoke to want the vaccine because they know, they don't know who their daughters will be with or who that person might have been with or might - but it does protect them. So this is a good thing.

MARTIN: Can I just clarify, when you get - Jane Delgado, when you get a pap smear, is an HVP test part of it or is there a separate test that you should get, or do you only get that test if the first test registers a positive?

Dr. DELGADO: You can ask for and make sure that its an HPV test and theyll do a separate test also. It depends on what your health care provider does and what your history is. So its very unique to the person what they do.

MARTIN: So what youre saying is if you get an HPV positive then you should get a follow-up, there should be a follow-up.

Dr. DELGADO: Most definitely. And I am surprised that a health care provider didnt say the importance of follow-up. When you're going for your exam, you are not exactly in a power position physically. Youre lying up there not in a comfortable way, so its hard to talk to the person. But you must. Its for your life.

MARTIN: Jane Delgado, is the president and CEO of the National Alliance for Hispanic Health, and shes kind enough to join us from time to time to talk about for all people. Also with us, Suzy Carrillo. Shes a cervical cancer survivor and now shes a member of the National Cervical Cancer Coalition.

And we thank you both so much for speaking with us.

Ms. CARRILLO: Well, thank you for having us.

Dr. DELGADO: Thank you.

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