This Almost 100% Preventable Cancer Is Still Killing Women in America -- What Can We Do?

Edna Lugo, 38, was diagnosed with cervical cancer when she was 31 after seeing a doctor about unusual cramps and bleeding. It wasn't until she became ill that she discovered there was a history of cervical cancer in her family.

“I'm Puerto Rican. It's like a taboo. Nobody wants to talk about anything,” she says. Lugo believes that because HPV is an STD, people are afraid to be considered promiscuous. “Even to this day, people ask if I had a lot of partners,” she says. She believes the issue of sex among adults can be very difficult to broach, let alone between adults and children.

This kind of silence can be deadly. Though cervical cancer is one of the most preventable cancers, every year, about 12,000 women in the United States are diagnosed, and about 4,000 will die as a result. Cervical cancer is also the second most common type of cancer among women worldwide.

Latinas and African-American women in the United States have the highest rates and are most likely to die than any other group. While Latinas consistently had the highest rates, a report by the Centers for Disease Control updated in August 2013 shows that cervical cancer is now slightly more common among African-American women.

Jessica Gonzalez-Rojas, executive director of National Latina Institute for Reproductive Health, says the reason for the shift is still uncertain, and that there is still much more work to be done to prevent the disease among this population. She says cervical cancer is almost 100 percent preventable.

According to Planned Parenthood, HPV and cervical cancer are often misunderstood, which can be contributing to the high rates.

How It Works

High-risk HPVs (human papillomaviruses) cause virtually all cervical cancers in addition to other kinds of cancers. Genital HPV infections are so common that most sexually active people who are not vaccinated should expect to be infected at some point in their lives. According to the CDC, about 79 million Americans are currently infected. Most people who have or have had HPV don't even know it.

Cervical cancer is caused by certain strains of HPV. Most infections don't cause any harm and require no treatment. The body’s immune system usually clears the disease naturally. However, if the HPV is left untreated, the abnormal cells it causes can progress into cervical cancer in some women. It takes years for the cancer to develop.

A pap test can find pre-cancerous cell changes of the cervix. The American College of Obstetricians and Gynecologists recommends that women begin getting pap tests when they turn 21. Under revised recommendations released in 2012, women should have a pap every 3-5 years, depending on their age.

Socioeconomic Factors

How could it be that a completely preventable disease continues to kill Latinas? According to the National Latina Institute for Reproductive Health, Latinas are less likely than other groups to have access to employer-sponsored health coverage or private plans. Sixty-six percent of immigrant women don’t have access to employer-sponsored coverage. The Affordable Care Act will be providing more Latinas access to healthcare, but many, particularly undocumented women, will continue to be uninsured.

Latinas in Texas face even greater challenges. NLIRH and the Center for Reproductive Rights (CRR) recently issued a report, Nuestro Texas, illustrating that recent policies in Texas have had a negative impact on women living in the Rio Grande Valley, one of the poorest regions in the U.S. and home to many Latinos and immigrants. The rates of cervical cancer for women in this region are 19 percent higher than the national average and 11 percent higher than the national average for Latinas. Women living in counties on the U.S. Mexico border are also 31 percent more likely to die of cervical cancer compared to women in non-border counties.

According to the report, 9 out of 32 family planning clinics in the valley funded by the Texas Department of State Health Services (DSHS) have been closed in the last few years.

Lillian Tamayo, president and CEO of Planned Parenthood South Florida and Treasure Coast, says inadequate education is also a major factor contributing to this problem. “Historically, we've had a lack of access to healthcare and early screening. The compounding, debilitating impact of poverty causes this lack of information,” she says. “This is a huge disservice to our community. ”

Overcoming Cultural Obstacles

In order to more effectively reach the Latino population, both the NLIRH and Planned Parenthood use the Promotores model for outreach. These programs educate members of the community so they can share important health information with their friends and families in an informal setting. “In this peer-to-peer model, men and woman are trained in sexual health and go out and talk to people in ways that professionals cannot,” says Tamayo.

She says this sort of community outreach is especially important now that the Affordable Care Act has gone into effect. Promotores can help educate others about what is covered under the new law.

“These women are armed with a lot of information,” says González-Rojas. “They are a really great resource. You're more comfortable with someone who looks like you and talks like you. A medical setting can be colder.”

González-Rojas adds that this method of communication is often the only way women in Texas are receiving information.

HPV Vaccine

The cultural stigma in discussing issues of sex and sexuality in the Latino community can also keep some parents from vaccinating their children against HPV.

“There's the perception that the vaccine will encourage kids to have sex,” says González-Rojas. Although many parents still believe that providing the vaccine will promote sexual promiscuity, she has seen attitudes beginning to shift when it comes to sexuality.

Tamayo agrees. “Latino parents come to this country to fulfill promises for their children that they themselves didn't have. I'm seeing more willingness to talk about these issues and seek tools in order to do that with young people,” she says. “The idea that providing access might be condoning sexual promiscuity is specious logic anyway. If a parent gives a child an umbrella, are they willing it to rain that day?”

Tamayo believes the vaccine helps keeps young people healthy and safe and gives parents the chance to talk to them about sex. According to Planned Parenthood, research shows that young people who get the HPV vaccine are no more likely to have sex.

“There hasn't been a robust conversation,” González-Rojas says. “The link to an sexually transmitted infection raises a lot of eyebrows. But there's a lot of curiosity and people want to learn about it. Ultimately, people want to protect their children. We're finding a lot more empathy. We have to create those conversations.”

A 2012 study found that fewer than half of low-income and minority adolescents receiving health maintenance services initiated HPV vaccination, and only 20 percent completed the series. The failure of providers to discuss the vaccine with their patients appears to be an important contributor to a lack of vaccination.

Some Latino parents who are interested in the vaccine simply lack the sufficient information to make a decision. Lupe Gil, mother of an 8-year-old girl and 16-year-old boy, says she first learned about the HPV vaccine during an informational session on cervical cancer at a nonprofit in Chicago. She says the vaccine was only briefly mentioned, and that it was the only time she had ever been given any information about it. Her children's doctor has never offered them the option.

Gil plans to ask the doctor about it soon. In order to make a decision, however, she says she would like to learn more about it, particularly all of the possible side-effects.

“If it's good for them, why not?” Gil says. “If that's something you can prevent, I prefer them to be safe than sorry.”

Maria Pallares, whose sons are 18 and 13, says their family doctor offered the vaccine for her 18-year-old son, but because the vaccine had just come out in the last few years, she was concerned about the side-effects.

Pallaras says the doctor only informed her that the vaccine was to prevent penis cancer, but did not explain what HPV was. She plans to ask more about it for her 13-year-old. She says her older son can “decide for himself” when it comes to the vaccine.

According to a 2013 study published in the Journal of Infectious Diseases, the vaccine cut the HPV infection rate by 56 percent, from 11.5 percent in 2003 to 2006 to 5.1 percent from 2007 to 2010 in preteens and young women ages 14 to 19. The study also found that even one shot of a three-dose series offered an 82 percent chance of protection against HPV.

The FDA has approved the HPV vaccine and the Centers for Disease Control and Prevention has recommended it for girls and boys aged 11-12. The American Cancer Society, the American Academy of Pediatrics, as well as Planned Parenthood, also support the vaccine.

It's recommended that both girls and boys get the vaccination when they are 11 to 12 years old since the vaccine works best when received years before kids start having sex. The vaccine is also now covered under the Affordable Care Act.

Resources

Tamayo says Planned Parenthood creates education programs for young people and parents of color to help arm them with tools for delicate but life-saving conversations.

In addition to encouraging young people to use condoms, talk to sexual partners and get regular pap tests, they offer online tools to help them navigate sexual issues. Awkward or Not?, for instance, is designed to encourage teens to talk with their parents about dating and sex. The teens can take a quiz allowing them to explore their feelings about communicating with their parents, and offers encouragement and tips to start talking.

Using video depicting real-life situations, Been There. Done That encourages teens to use both birth control and condoms when having sex.

Planned Parenthood spokesperson Carlos Moreno says these tools will soon be available in Spanish as well.

“Young people are learning and talking to one another. Social media is a powerful tool because Latinos have high rates of usage,” says Jessica González-Rojas. “Sexuality is becoming less and less stigmatized. I see more respect and support around sex and sexuality.”

“You see [sex] everywhere. Everyone wants to be sexy,” says Edna Lugo, who is now cancer-free. “We need to educate ourselves.” She believes adults have a responsibility to teach young people about the possible consequences of sex, such as HPV and cervical cancer. She says teenagers will take care of themselves if given the right tools.