Analysis Sexual Health

HPV Education, Prevention & Support: Innovative Efforts Reach Young People and Older Adults

Bianca I. Laureano

Tamika and Friends is a national organization whose mission is to raise awareness about cervical cancer and its link to HPV through education and prevention.  

There’s an abundance of conversations about Human Papillomavirus (HPV), especially since the new vaccinations have been approved by the FDA, and now include boys. However, what are people doing about promoting awareness and prevention about HPV (human papillomavirus), not only for young people, but older adults and men? I asked Patti Murillo-Casa, the NY Chapter President of Tamika & Friends, Inc. (T&F) a national non-profit organization dedicated to ending cervical cancer through HPV education. I admit that I was one of the founding members of T&F when living in Washington, DC and helped to build some of the early HPV education and prevention activities and discussing sexual health and sexuality specific to HPV and cervical cancer. Since my departure, T&F has expanded and grown in ways that are exciting and very much needed!

Patti Murillo-Casa has been a guest speaker for many of my classes where she shares her experience being diagnosed with cervical cancer 3 years ago, her healing, recovery, and her coping practices. She also shares information about HPV to help raise awareness. I’ve interviewed Patti before when asking her about the rates of divorce among couples where one experiences cervical cancer.  After her most recent visit as a guest speaker, I asked if she would be willing to provide an interview with me to help raise awareness of the work T&F is doing, how folks can create a chapter in their area, and how area folks can get involved in their reproductive justice efforts locally.

Can you share with us how you became involved with Tamika & Friends, Inc.?

Sure!!–.  Three months after my last treatment [for cervical cancer] had ended, and feeling the repercussions of the aftermath of a battle, my brother, Rudy, for whatever reason was checking the internet and found Tamika and Friends NYC Walk to Beat the Clock, a 5K prevention and awareness walk to prevent cervical cancer.  The walk was going to be taken place in 3 days from the day he told me.  He insisted so much for us to do it that I gave in.  We gathered family, friends, raised some money and named our team “Tumor Terminators” and on Saturday, September 19, 2009 we were there.  For me it was like an epiphany when I saw the other survivors, women fighting the battle, caregivers and their friends all telling their stories with so much strength and determination.   It was easy to get inspired.  These women inspired me and continue to every day.  They welcomed me and hugged me as a sister; I was their survivor sister. They knew exactly what I had gone through.  I went to Tamika Felder, the founder and CEO of T&F, and I told her right there and then that I wanted to join the movement.  I wanted to be one of her “Friends.”  I was not feeling sorry for myself anymore.  I understood then, that the second chance I had just been given was to help other women not to endure what I had.  Tamika and Friends-NYC Chapter was born January 15, 2010.

Like This Story?

Your $10 tax-deductible contribution helps support our research, reporting, and analysis.

Donate Now

What have been some of your most rewarding experiences since working with Tamika & Friends, Inc.?

They have been many, but meeting awesome people in this community tops my list.  I have met amazing warriors, advocates, and just people with tremendous heart and passion.  I have my ups and downs too, but I try to focus on the ups.  I always remember the first girl that came up to me and told me that because she heard or read my story she went to her doctor to check herself and that she will promise to do it every year.  In my book that’s what makes it all worthwhile and rewarding.  I call it my boost injection. :)  It allows me to continue with my mission, with my goal, with passion and determination to help eradicate cervical cancer.

What are some of the challenges you see existing in the work Tamika & Friends, Inc. has planned locally in NYC and nationally?

Tamika Felder calls this organization small, but very mighty.  We roll up our sleeves and we get ready to work at all times.  We are all volunteers and willing to do anything to spread the word and help survivors and people battling the disease.  As a national nonprofit, we rely on the generosity of our friends, neighbors and companies to help us. Unfortunately, in these economic times it’s hard, but we go forward with what we have and at the end of the day we have done what we can and we sleep better at night.  This is New York City, a city full of generous and eager people and if you want to help us you can email me at nycchapter@tamikaandfriends.org  or call 917-829-TFNY.

How do you see Tamika & Friends, Inc. work and the work you are doing as a example of reproductive justice?

We have several programs in place. Some of these are:

House Party of fiVe – A House Party of fiVe mixes girl talk with games teaching about HPV and how to stay safe in those intimate moments. The parties are fun, not lectures, and you can customize your party to fit your style! After experiencing this comfortable environment where women can ask questions more openly about their sexual health, many often pledge to visit their health-care provider to get their Pap and HPV tests along with taking back the literature provided and messages learned to share with their friends and family.

Wear Orange Day In January, cervical cancer awareness month, we wear orange to bring more awareness to this preventable disease. While the color teal and white is the official color for cervical cancer, Tamika & Friends wears the color orange, a color that has been said to be healing and helps to balance your emotions in times of high stress.

Say Something – a toolkit provided and co-sponsored by another great organization, The Yellow Umbrella. Many times we want to know how to talk to our friends and family on cervical cancer, its link to HPV and how we can all prevent it. With the materials provided, it becomes easier to share information, educate yourself and help encourage women to get their HPV test.

Gift of Giving Financial Assistance Application -This is Tamika & Friends way of helping cervical cancer patients/survivors pay their bills. Unfortunately, the realities in this world do not stop even when you have a cervical cancer diagnosis and we love to be able to help ease the burden with donations provided by our supporters.

Walk to Beat the Clock – Our annual walks for cervical cancer. A place to provide solidarity, while recognizing and building a community of survivors, advocates, family and friends. The NYC Walk to Beat the Clock will on Saturday, September 17, 2011.  You can register, donate or volunteer by going to www.walktobeattheclock.org

T&F Chapters – Our organization is growing and as we share on our website we want to go global! We also attend many health fairs targeting different communities in Harlem, Spanish Harlem, Washington Heights and the South Bronx and we give information and bring awareness to this disease and prevention. We want to expand. We love being online, but we also know that education and help is often best offered in person. Tamika & Friends will work with you and others in your community to organize educational events such as those listed above. We will provide materials and expertise to help you hold informational sessions at your local library, attend health fairs, contact community health organizations and colleges/universities. Plus, we will help you connect women in need with medical and social support and assist in fundraising efforts.

Tamika & Friends is a great way to combine fun, friendship and making a difference. To get involved, or to request additional information, please contact Tanhea at tanhea@tamikaandfriends.org.

How do you include men in HPV education and why is their inclusion important?

I particularly love men in the audience when I do my presentations.  Most of the time they shy away from the subject until they find out the HPV affects men and women.  It is obvious, that they will not get cervical cancer but there are other cancers that men can get that are linked to HPV (i.e. penile, anal, throat).   I also remind them that there are women in their lives (mom. sister, aunt, grandmother, godmother, girlfriends) and they have to support them.  Knowledge is power for everyone.

 I believe that the inclusion of men is very important because in a way this disease affects everyone.  Men also have to realized that the human papillomavirus affects them too and it can lead to genital warts, penile cancer and anal cancer, to name a few.   Recent studies have revealed that throat cancer is in the rise for men due to the human papillomavirus. It is also important that boys and young men 9-26 years old know that they are able to get the HPV vaccine.

What support services exist for cervical cancer survivors via Tamika & Friends, Inc.?

One of the services already mentioned is the Gift of Giving which helps cervical cancer patients/survivors pay their bills. We have a certified counselor on board if they want to talk, a gynecologist, and nurse; we also offer emotional support (online coming soon). Family support is awesome but to talk and be supported by someone that has gone through what you have gone through makes a difference. Tamika and Friends, Inc. can be the other family in a survivor’s life.

What else would you like to have readers know about Tamika & Friends, Inc.?

 Believing that creative communication is far more infectious than HPV – we provide many hands-on ways to spread the word to women in all walks of life. We may be reached using social media and our website.

You can reach out to us by visiting our website: www.tamikaandfriends.org, on Facebook

and Twitter. You can read our blog We Can Prevent Cervical Cancer

 

Commentary Sexual Health

Don’t Forget the Boys: Pregnancy and STI Prevention Efforts Must Include Young Men Too

Martha Kempner

Though boys and young men are often an afterthought in discussions about reproductive and sexual health, two recent studies make the case that they are in need of such knowledge and that it may predict when and how they will parent.

It’s easy to understand why so many programs and resources to prevent teen pregnancy and sexually transmitted infections (STIs) focus on cisgender young women: They are the ones who tend to get pregnant.

But we cannot forget that young boys and men also feel the consequences of early parenthood or an STI.

I was recently reminded of the need to include boys in sexual education (and our tendency not to) by two recent studies, both published in the Journal of Adolescent Health. The first examined young men’s knowledge about emergency contraception. The second study found that early fatherhood as well as nonresident fatherhood (fathers who do not live with their children) can be predicted by asking about attitudes toward pregnancy, contraception, and risky sexual behavior. Taken together, the new research sends a powerful message about the cost of missed opportunities to educate boys.

Like This Story?

Your $10 tax-deductible contribution helps support our research, reporting, and analysis.

Donate Now

The first study was conducted at an adolescent medicine clinic in Aurora, Colorado. Young men ages 13 to 24 who visited the clinic between August and October 2014 were given a computerized survey about their sexual behavior, their attitudes toward pregnancy, and their knowledge of contraception. Most of the young men who took the survey (75 percent) had already been sexually active, and 84 percent felt it was important to prevent pregnancy. About two-thirds reported having spoken to a health-care provider about birth control other than condoms, and about three-quarters of sexually active respondents said they had spoken to their partner about birth control as well.

Yet, only 42 percent said that they knew anything about emergency contraception (EC), the only method of birth control that can be taken after intercourse. Though not meant to serve as long-term method of contraception, it can be very effective at preventing pregnancy if taken within five days of unprotected sex. Advance knowledge of EC can help ensure that young people understand the importance of using the method as soon as possible and know where to find it.

Still, the researchers were positive about the results. Study co-author Dr. Paritosh Kaul, an associate professor of pediatrics at the University of Colorado School of Medicine, told Kaiser Health News that he was “pleasantly surprised” by the proportion of boys and young men who had heard about EC: “That’s two-fifths of the boys, and … we don’t talk to boys about emergency contraception that often. The boys are listening, and health-care providers need to talk to the boys.”

Even though I tend to be a glass half-empty kind of person, I like Dr. Kaul’s optimistic take on the study results. If health-care providers are broadly neglecting to talk to young men about EC, yet about 40 percent of the young men in this first study knew about it anyway, imagine how many might know if we made a concerted effort.

The study itself was too small to be generalizable (only 93 young men participated), but it had some other interesting findings. Young men who knew about EC were more likely to have discussed contraception with both their health-care providers and their partners. While this may be an indication of where they learned about EC in the first place, it also suggests that conversations about one aspect of sexual health can spur additional ones. This can only serve to make young people (both young men and their partners) better informed and better prepared.

Which brings us to our next study, in which researchers found that better-informed young men were less likely to become teen or nonresident fathers.

For this study, the research team wanted to determine whether young men’s knowledge and attitudes about sexual health during adolescence could predict their future role as a father. To do so, they used data from the National Longitudinal Study of Adolescent Health (known as Add Health), which followed a nationally representative sample of young people for more than 20 years from adolescence into adulthood.

The researchers looked at data from 10,253 young men who had completed surveys about risky sexual behavior, attitudes toward pregnancy, and birth control self-efficacy in the first waves of Add Health, which began in 1994. The surveys asked young men to respond to statements such as: “If you had sexual intercourse, your friends would respect you more;” “It wouldn’t be all that bad if you got someone pregnant at this time in your life;” and “Using birth control interferes with sexual enjoyment.”

Researchers then looked at 2008 and 2009 data to see if these young men had become fathers, at what age this had occurred, and whether they were living with their children. Finally, they analyzed the data to determine if young men’s attitudes and beliefs during adolescence could have predicted their fatherhood status later in life.

After controlling for demographic variables, they found that young men who were less concerned about having risky sex during adolescence were 30 percent more likely to become nonresident fathers. Similarly, young men who felt it wouldn’t be so bad if they got a young woman pregnant had a 20 percent greater chance of becoming a nonresident father. In contrast, those young men who better understood how birth control works and how effective it can be were 28 percent less likely to become a nonresident father.9:45]

Though not all nonresident fathers’ children are the result of unplanned pregnancies, the risky sexual behavior scale has the most obvious connection to fatherhood in general—if you’re not averse to sexual risk, you may be more likely to cause an unintended pregnancy.

The other two findings, however, suggest that this risk doesn’t start with behavior. It starts with the attitudes and knowledge that shape that behavior. For example, the results of the birth control self-efficacy scale suggest that young people who think they are capable of preventing pregnancy with contraception are ultimately less likely to be involved in an unintended pregnancy.

This seems like good news to me. It shows that young men are primed for interventions such as a formal sexuality education program or, as the previous study suggested, talks with a health-care provider.

Such programs and discussion are much needed; comprehensive sexual education, when it’s available at all, often focuses on pregnancy and STI prevention for young women, who are frequently seen as bearing the burden of risky teen sexual behavior. To be fair, teen pregnancy prevention programs have always suffered for inadequate funding, not to mention decades of political battles that sent much of this funding to ineffective abstinence-only-until-marriage programs. Researchers and organizations have been forced to limit their scope, which means that very few evidence-based pregnancy prevention interventions have been developed specifically for young men.

Acknowledging this deficit, the Centers for Disease Control and Prevention and the Office of Adolescent Health have recently begun funding organizations to design or research interventions for young men ages 15 to 24. They supported three five-year projects, including a Texas program that will help young men in juvenile justice facilities reflect on how gender norms influence intimate relationships, gender-based violence, substance abuse, STIs, and teen pregnancy.

The availability of this funding and the programs it is supporting are a great start. I hope this funding will solidify interest in targeting young men for prevention and provide insight into how best to do so—because we really can’t afford to forget about the boys.

Commentary Sexual Health

Fewer Young People Are Getting Formal Sex Education, But Can a New Federal Bill Change That?

Martha Kempner

Though the Real Education for Healthy Youth Act has little chance of passing Congress, its inclusive and evidence-based approach is a much-needed antidote to years of publicly funded abstinence-only-until-marriage programs, which may have contributed to troubling declines in youth knowledge about sexual and reproductive health.

Recent research from the Guttmacher Institute finds there have been significant changes in sexuality education during the last decade—and not for the better.

Fewer young people are receiving “formal sex education,” meaning classes that take place in schools, youth centers, churches, or community settings. And parents are not necessarily picking up the slack. This does not surprise sexuality education advocates, who say shrinking resources and restrictive public policies have pushed comprehensive programs—ones that address sexual health and contraception, among other topics—out of the classroom, while continued funding for abstinence-only-until-marriage programs has allowed uninformative ones to remain.

But just a week before this research was released in April, Sen. Cory Booker (D-NJ) introduced the Real Education for Healthy Youth Act (REHYA). If passed, REHYA would allocate federal funding for accurate, unbiased sexuality education programs that meet strict content requirements. More importantly, it would lay out a vision of what sexuality education could and should be.

Can this act ensure that more young people get high-quality sexuality education?

In the short term: No. Based on the track record of our current Congress, it has little chance of passing. But in the long run, absolutely.

Like This Story?

Your $10 tax-deductible contribution helps support our research, reporting, and analysis.

Donate Now

Less Sexuality Education Today

The Guttmacher Institute’s new study compared data from two rounds of a national survey in the years 2006-2010 and 2011-2013. It found that even the least controversial topics in sex education—sexually transmitted diseases (STDs) and HIV and AIDS—are taught less today than a few years ago. The proportion of young women taught about STDs declined from 94 percent to 90 percent between the two time periods, and young women taught about HIV and AIDS declined from 89 percent to 86 percent during the same period.

While it may seem like a lot of young people are still learning about these potential consequences of unprotected sex, few are learning how to prevent them. In the 2011-2013 survey, only 50 percent of teen girls and 58 percent of teen boys had received formal instruction about how to use a condom before they turned 18. And the percentage of teens who reported receiving formal education about birth control in general decreased from 70 percent to 60 percent among girls and from 61 percent to 55 percent among boys.

One of the only things that did increase was the percentage of teen girls (from 22 percent to 28 percent) and boys (from 29 to 35 percent) who said they got instruction on “how to say no to sex”—but no corresponding instruction on birth control.

Unfortunately, many parents do not appear to be stepping in to fill the gap left by formal education. The study found that while there’s been a decline in formal education, there has been little change in the number of kids who say they’ve spoken to their parents about birth control.

Debra Hauser, president of Advocates for Youth, told Rewire that this can lead to a dangerous situation: “In the face of declining formal education and little discussion from their parents, young people are left to fend for themselves, often turning to their friends or the internet-either of which can be fraught with trouble.”

The study makes it very clear that we are leaving young people unprepared to make responsible decisions about sex. When they do receive education, it isn’t always timely: It found that in 2011-2013, 43 percent of teen females and 57 percent of teen males did not receive information about birth control before they had sex for the first time.

It could be tempting to argue that the situation is not actually dire because teen pregnancy rates are at a historic low, potentially suggesting that young people can make do without formal sex education or even parental advice. Such an argument would be a mistake. Teen pregnancy rates are dropping for a variety of reasons, but mostly because because teens are using contraception more frequently and more effectively. And while that is great news, it is insufficient.

Our goals in providing sex education have to go farther than getting young people to their 18th or 21st birthday without a pregnancy. We should be working to ensure that young people grow up to be sexually healthy adults who have safe and satisfying relationships for their whole lives.

But for anyone who needs an alarming statistic to prove that comprehensive sex education is still necessary, here’s one: Adolescents make up just one quarter of the population, but the Centers for Disease Control and Prevention estimate they account for more than half of the 20 million new sexually transmitted infections (STIs) that occur each year in this country.

The Real Education for Healthy Youth Act

The best news about the REHYA is that it takes a very broad approach to sexuality education, provides a noble vision of what young people should learn, and seems to understand that changes should take place not just in K-12 education but through professional development opportunities as well.

As Advocates for Youth explains, if passed, REHYA would be the first federal legislation to ever recognize young people’s right to sexual health information. It would allocate funding for education that includes a wide range of topics, including communication and decision-making skills; safe and healthy relationships; and preventing unintended pregnancy, HIV, other STIs, dating violence, sexual assault, bullying, and harassment.

In addition, it would require all funded programs to be inclusive of lesbian, gay, bisexual, and transgender students and to meet the needs of young people who are sexually active as well as those who are not. The grants could also be used for adolescents and young adults in institutes of higher education. Finally, the bill recognizes the importance of teacher training and provides resources to prepare sex education instructors.

If we look at the federal government’s role as leading by example, then REHYA is a great start. It sets forth a plan, starts a conversation, and moves us away from decades of focusing on disproven abstinence-only-until-marriage programs. In fact, one of the fun parts of this new bill is that it diverts funding from the Title V program, which received $75 million dollars in Fiscal Year 2016. That funding has supported programs that stick to a strict eight-point definition of “abstinence education” (often called the “A-H definition”) that, among other things, tells young people that sex outside of marriage is against societal norms and likely to have harmful physical and psychological effects.

The federal government does not make rules on what can and cannot be taught in classrooms outside of those programs it funds. Broad decisions about topics are made by each state, while more granular decisions—such as what curriculum to use or videos to show—are made by local school districts. But the growth of the abstinence-only-until-marriage approach and the industry that spread it, researchers say, was partially due to federal funding and the government’s “stamp of approval.”

Heather Boonstra, director of public policy at the Guttmacher Institute and a co-author of its study, told Rewire: “My sense is that [government endorsement] really spurred the proliferation of a whole industry and gave legitimacy—and still does—to this very narrow approach.”

The money—$1.5 billion total between 1996 and 2010—was, of course, at the heart of a lot of that growth. School districts, community-based organizations, and faith-based institutions created programs using federal and state money. And a network of abstinence-only-until-marriage organizations grew up to provide the curricula and materials these programs needed. But the reach was broader than that: A number of states changed the rules governing sex education to insist that schools stress abstinence. Some even quoted all or part of the A-H definition in their state laws.

REHYA would provide less money to comprehensive education than the abstinence-only-until-marriage funding streams did to their respective programs, but most advocates agree that it is important nonetheless. As Jesseca Boyer, vice president at the Sexuality Information and Education Council of the United States (SIECUS), told Rewire, “It establishes a vision of what the government could do in terms of supporting sex education.”

Boonstra noted that by providing the model for good programs and some money that would help organizations develop materials for those programs, REHYA could have a broader reach than just the programs it would directly fund.

The advocates Rewire spoke with agree on something else, as well: REHYA has very little chance of passing in this Congress. But they’re not deterred. Even if it doesn’t become law this year, or next, it is moving the pendulum back toward the comprehensive approach to sex education that our young people need.

CORRECTION: This article has been updated to clarify Jesseca Boyer’s position at the Sexuality Information and Education Council of the United States.