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


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.

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

 

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

To schedule an interview with contact director of communications Rachel Perrone at rachel@rhrealitycheck.org.

Follow Bianca I. Laureano on twitter: @latinosexuality

  • frazere

    Notice there is nothing in this article about the dangers of this vaccine or the v. limited effectiveness. Please do some homework before jumping on the cancer bandwagon.

  • prochoiceferret

    Notice there is nothing in this article about the dangers of this vaccine or the v. limited effectiveness.

     

    How are the available HPV vaccines any more dangerous than other existing vaccines? How is their effectiveness “limited?”

  • ack

    The commenter was absolutely right. Guardasil protects against 4 strains of HPV, when there are many more that cause problems, including cervical cancer. The vaccine isn’t a cure-all, and shouldn’t be used as a substitute for regular pap smears or consistent condom use.

     

    And, as with any vaccine, there are risks. Yes, it was approved by the FDA, and yes, it’s awesome that we have a vaccine available, but there are still risks that need to be weighed before anyone takes it. Since the vaccine is recommended for young people, parents need to be equipped to talk to their teens and pre-teens to decide if there might be complications. Health care providers need to be equipped to talk to teens in states where young people are legally able to make their own decisions regarding STIs and reproductive health care.

     

    I’m having a really hard time understanding why the comment was voted down. If the commenters on this site continue to simply vote down any comment that appears to disagree with their view in order to hide it, then I think that methodology needs to be questioned. We all have the choice of ignoring posts, but by labeling valid arguments as “troll/spam” we’re doing the pro-choice viewpoint a disservice. And we’re doing the anti-choice viewpoint a favor.

  • prochoiceferret

    The commenter was absolutely right. Guardasil protects against 4 strains of HPV, when there are many more that cause problems, including cervical cancer.

     

    Gardasil protects against HPV subtypes 6, 11, 16 and 18. Subtypes 16 and 18 cause an estimated 70% of all cases of cervical cancer. 6 and 11 cause about 90% of all genital warts cases. That’s about as limitedly effective as seat belts and air bags.

     

    And, as with any vaccine, there are risks. Yes, it was approved by the FDA, and yes, it’s awesome that we have a vaccine available, but there are still risks that need to be weighed before anyone takes it.

     

    Funny, I never hear people talking about all these “risks” and “weighing” when it comes to vaccines for flu/measles/meningitis/etc….

     

    I’m having a really hard time understanding why the comment was voted down.

     

    It takes practice to sniff out concern trolls.

  • biancalaureano

    There’s no mention of the HPV vaccine b/c this interview was about what T&F specifically are doing within the community to help educate people about HPV. A small part of those discussions are about the vaccine and Patti is clear (at least she was when she has come to my classes) and does NOT promote one perspective over another re: the vaccine, she encourages people to talk with their families & physicians/health provider, does discuss some of the challenges and benefits of the vaccine but is very neutral about the matter. I’ve invited her to leave a comment regarding the official T&F position on the vaccine, which they do link to on their site (as I think it is a good move to give folks all their options on a topic). 

     

    I hope that hearing about their work and how it is based in grassroots organizing and traditional consciousness-raising efforts is something folks find a connection with and consider the service and work they do as useful.

  • biancalaureano

    There’s no mention of the HPV vaccine b/c this interview was about what T&F specifically are doing within the community to help educate people about HPV. A small part of those discussions are about the vaccine and Patti is clear (at least she was when she has come to my classes) and does NOT promote one perspective over another re: the vaccine, she encourages people to talk with their families & physicians/health provider, does discuss some of the challenges and benefits of the vaccine but is very neutral about the matter. I’ve invited her to leave a comment regarding the official T&F position on the vaccine, which they do link to on their site (as I think it is a good move to give folks all their options on a topic). 

     

    I hope that hearing about their work and how it is based in grassroots organizing and traditional consciousness-raising efforts is something folks find a connection with and consider the service and work they do as useful.

  • crowepps

    Since the vaccine is recommended for young people, parents need to be equipped to talk to their teens and pre-teens to decide if there might be complications.

    While I acknowledge that there could be physical complications from this, as from any other vaccination, I’m not sure exactly how talking it over with, say, an 11-year old girl would help anybody decide whether they would be more likely to occur.  Are you talking about physical complications?

    There are occasionally complications with the tetanus vaccine, but when my daughter was in junior high and it was time for her booster, she got her booster; I didn’t talk to her “to decide if there might be complications”.  I didn’t even explain to her how the disease tetanus was caught or what its physical manifestations were or anything else about it.  I said, “yes, you will allow this so you don’t get tetanus, which can kill you, and don’t feel picked on because I’m getting my own booster now as well.”

  • crowepps

    I notice there is nothing in your comment about the dangers of this vaccine or its effectiveness and certainly your reference to the “cancer bandwagon” is murky.  It would help if you would clearly state whatever your point is, cite some actual facts to support it and perhaps provide links to a few studies that substantiate those facts instead of just sneering at the article.

  • pattiny1

    First and most I want to thank Ms. Laureano for clearing some of the issues discussed here. 

    While  I appreciate and respect everyone’s opinion, I don’t personally appreciate “the cancer bandwagon” comment.

    I am a CANCER SURVIVOR and I am taking my survivorship to a different level by taking my experience and making sure women understand that my story doesn’t have to be theirs.  As a responsible advocate I have to offer the information of  the different tools, that are out there to prevent this horrible disease.  At no point do I nor Tamika and Friends promote any perspective of the HPV vaccine.  The decision its up to the individual to decide after talking to their families and/or their physician. 

    I wish that before my diagnosis I would have been given the information and resources that this organization offers and maybe I wouldn’t have had to endure the hard and difficult journey I had to travel to win this battle. 

    Much Health to All,

    Patti Murillo-Casa

  • crowepps

    I would imagine that a lot of cancer survivors want to forget the whole issue and never think about it again, so I’d like to thank you for being willing to put yourself out there to help other people avoid what you had to go through yourself.  I personally appreciated the article very much.