Showing posts with label cervical cancer. Show all posts
Showing posts with label cervical cancer. Show all posts

Wednesday, October 10, 2012

What Does Dr. Oz Know About HPV? If His Show Is Any Indication, Not Much

published on my RH Reality Check Blog

Last month, which was Gynecological Cancer Awareness Month, I was invited to participate on a segment of The Dr. Oz Show, focusing on HPV and cervical cancer. I was encouraged to share my story as someone who recently had been diagnosed with cancerous cells on my cervix. Though uninsured, I had received treatment over the previous two months.

When the show airs on October 11th, you will notice the following false assumptions or claims:

False Assumption: HPV and Cervical Cancer Affect Only Racially White Women

Everyone on the show was racially white, including those with HPV; the two physicians; Mark Hefti who'd made a film about HPV; and the man who discussed the death of his daughter from cervical cancer. This is what I mean when I write that white supremacy exists in the sexuality and medical field. In the end, I did not share my experience, but there were at least five women of Color—half of them survivors of cervical cancer and activists—who could have spoken on the show.

The fact is, HPV affects all people. Henrietta Lacks, a Black woman, died of cervical cancer in 1951. Her cells were taken from her body without permission when she was found to have cervical cancer. They were the first "immortal" cells used in scientific research. Given this, how can Dr. Oz fail to represent people who are not racially white? It's true that cancer is the leading cause of death among racially white people. But the CDC Office of Minority Health ranks deaths by various forms of cancer as the second-leading cause of death among Black people in the United States, especially breast and cervical cancer among Black women. Cancer is the second-leading cause of death among multicultural populations and Native Americans. It is the leading cause of death among Asians living in the United States (Vietnamese women have the highest rates of cervical cancer.) It is the leading cause of death among Native Hawaiian and Pacific Islanders, and among Latin@s.

False Assumption: HPV and Cervical Cancer Concern Only Heterosexual People

The physicians' discussion of how dental dams work could have been an amazing opportunity to share important information. But Dr. Oz reacted in disgust, asking the audience, “Who would use a dental dam?” Meanwhile, many folks in the audience may have just been introduced to this barrier method. One physician remarked, “If it was between using a dental dam or not having sex, I’d choose not to have sex.” Talk about isolating folks—especially lesbian, gay, and bisexual women—who are using dental dams!

HPV and cervical cancer do not discriminate. The American Cancer Society offers  information for Lesbian, Gay and Bisexual women. The CDC's Cervical Cancer Screening and HPV pages mention sexual orientation. Its Genital HPV Infection page states, “HPV can be passed on between straight and same-sex partners—even when the infected partner has no signs or symptoms.”

However, there is no mention of dental dams as barrier methods on the HPV sites for the CDC, American Social Health Association, or The National Coalition of STD Directors. While condoms are discussed on all sites, physicians, “experts,” and organizations training and doing research on HPV do not address dental dams.

False Claim: People Should Not Have Sex Until Age 21

In what kind of world does an “expert” physician advocate that folks should not have sex until after they are 21 years of age? Regardless of personal beliefs around sex and sexuality, most agree that a physician making such claims is out of touch with the reality of young people's lives. 

Nowhere on the CDC's Genital HPV Infection fact sheet is there an argument for waiting until a magical age to engage in sexual activity. There is information about limiting partners, but not an age requirement. The CDC states:

People can also lower their chances of getting HPV by being in a faithful relationship with one partner; limiting their number of sex partners; and choosing a partner who has had no or few prior sex partners. But even people with only one lifetime sex partner can get HPV. And it may not be possible to determine if a partner who has been sexually active in the past is currently infected. That's why the only sure way to prevent HPV is to avoid all sexual activity.

Still, the CDC's use of the word "faithful" is troubling because it assumes that monogomy—which is often a religious stricture—is the norm. Nevertheless, many of the survivors I spoke with at the taping had been partnered in monogamous relationships for decades, and some were pregnant when they were diagnosed with HPV, and later, cervical cancer.

False Claim: There’s No Treatment for HPV or Cervical Cancer, Just an Unreliable Vaccine

While there was no discussion of how precancerous cells or cervical, vulvar, or throat cancers are treated—and highly effective treatments are available—the HPV vaccine—which prevents the spread of HPV—was addressed. Dr. Oz announced that one expert on the show had accepted money from the pharmaceutical companies who are creating vaccinations. Nevertheless, the expert said that she would not encourage parents to consider the vaccine, especially for youth under the age of 15. The claim? We just don’t know the effects of the vaccine or how long it stays in the body. This is simply not true. What about giving folks all the information, so they can decide on their own what is best for their family and children? Women in the audience who had been diagnosed with cervical cancer in their early 20s may have supported the vaccine.

This expert mentioned that her gay son had asked her to give him the vaccine. Even after they'd discussed its long-term effects, her son chose the vaccine, something the CDC recommends: “The vaccine is also recommended for gay and bisexual men (or any man who has sex with men) and men with compromised immune systems (including HIV) through age 26, if they did not get fully vaccinated when they were younger.”

The CDC also recommends the vaccine for girls ages 11 and 12:

For the HPV vaccine to work best, it is very important for preteens to get all 3 doses (shots) long before any sexual activity with another person begins. It is possible to be infected with HPV the very first time they have sexual contact with another person. Also, the vaccine produces a higher antibody that fights infection when given at this age compared to older ages.

One caveat: The CDC's recommendation that the vaccine be given “long before any sexual activity with another person begins” ignores youth who may have been sexually assaulted, molested, or raped.

What about side effects? One expert on the show mentioned only that redness or swelling could occur at the site of the injection, while the CDC indicates that fever, fainting, nausea, diarrhea, vomiting, abdominal pain, and muscle or joint pain could also occur.

There was a good discussion about anal cancer. One expert said that you do not have to engage in anal sex to be at risk for anal cancer via HPV infection, and HPV may lead to various forms of cancers based on the strain. I don’t recall any mention of Gardisil being useful for preventing anal cancer, but the CDC reports:

One vaccine (Gardasil) protects against most anal cancers. There is no routinely recommended screening test for anal or penile cancer because more information is still needed to find out if such tests can be effective. There are no data on efficacy of the vaccine to prevent cancers of the penis, but most HPV-related cancers of the penis are caused by the HPV types prevented by the vaccines.

False Assumption: Only Folks Who Have Access to Doctors and OB/GYNs Need Worry About HPV

Many people do not get regular Pap tests and HPV tests because they can’t get to the doctor or don’t have insurance or money to afford a visit. When I shared this point with the person soliciting folks to ask questions on the show, the young woman stared at me and then asked someone else for her thoughts.

A nurse, who was racially white and selected to speak on the show, said, “HPV can happen to anybody, not just the poor.” Since when do only poor people contract or transmit HPV? This remark perpetuates the idea that white people are not poor because they have whiteness to fall back on as a safety net.

False Assumption: Transgender People Don’t Exist

Language is important. The participants used the term “female” and “woman” when discussing HPV and genitalia, which excludes transgender people. The CDC has a link called transgender persons that includes a list of organizations focusing on transgender health. The American Social Health Association has a page called transgender health that notes providers should be open, respectful, and accepting of one’s “sexuality.” But using "sexuality" when "gender" is meant over-sexualizes transgender people. And when the CDC uses “women,” it may mean only people whose sex assigned at birth was “female.”

False Claim: Dr. Oz Makes a Case Against Oral Sex

Dr Oz said that you could make a "case against oral sex." This remark does not recognize that oral sex is enjoyable or may be the only form of affection for someone who has a disability, illness, discomfort with his or her body, or a desire to avoid pregnancy.

False Assumption: There Is No Support for Survivors

The panelists did not discuss support for survivors. But there are many support networks, especially for survivors of cervical cancer, such as Tamika & Friends, Inc., an international organization I helped co-found years ago. It not only offers support to those living with cervical cancer, but also to their caregivers. It focuses on eliminating cervical cancer through HPV education. Its members are activists of Color and cervical-cancer survivors. The National Cervical Cancer Coalition offers an online support network. The Cancer Survivorship Coaching Coalition is specifically for folks working with and caring for those living with cancer. Navigating Cancer Survivorship is a national organization providing support to folks living with cancer and those caring for them, including medical providers. Stupid Cancer, I'm Too Young For This Foundation i[2]y is especially for youth and young adults living with and affected by cancer.

Dr. Oz's staff and chosen guests were out of touch. One thing Dr. Oz does do well is make medical terminology accessible, but the guest physicians used terms and language that were difficult to follow.

Staff members who recorded lines that were used in a montage wanted folks to "act." Lines included “I’m so angry” and “I was so scared.” While one woman said she did not want to read the "scared" line because she did not want to discourage folks from getting tested, other women were happy to do whatever they were directed to do. 

After the taping, I received a call from the same woman who'd heard me discuss my insurance experience and dismissed me. She asked if I had come to the show. When I told her I had, she apologized for not introducing herself. At six feet tall with fierce hair, I’m pretty hard to miss!

Sunday, January 22, 2012

What Will It Take To End Cervical Cancer?

cross posted from my RH Reality Check blog

This article is cross-posted from and in partnership with the National Latina Institute for Reproductive Health, and is published as part of a series on cervical cancer.

See all our coverage of Cervical Cancer Awareness Month 2012 here.

Maybe it’s because I’m into getting things done for the New Year, but I really dig lists. Here is my list of things I believe it will take to end cervical cancer.

  1. Comprehensive Sexuality Education (which must include an analysis and centering of race, ethnicity, class, relationship and immigration status, disability, citizenship, and not just a gender binary and sexual orientation),
  2. Collective commitment to valuing the bodies of people of Color,
  3. Collective commitment to valuing the bodies of transgender and intersex people,
  4. Recognize and change the way we police the bodies of women, people of Color and immigrants when it comes to cervical cancer,
  5. Include all men in conversations, education, and efforts around cervical cancer,
  6. Include youth in preparing and implementing educational efforts around HPV and cervical cancer,
  7. Honest dialogues and inclusion of people who have non-traditional and controversial perspectives (i.e. anti-vaccination, conspiracy theories)
  8. Understanding and disseminating of information on non-verbal communication and its connections to cervical cancer,
  9. Challenging ideologies that all forms of cervical cancer are transmitted only through sexual contact,
  10. Connect with all reproductive cancer survivors, communities, prevention and education spaces to build,
  11. Demystify the shame that comes with our reproductive organs and genitals,
  12. Trust all parents (especially young parents) to do what is best for their children versus forcing, coercing, and threatening them (to get their child vaccinated),
  13. Support grassroots efforts to educate, support, and provide care to communities that are under-resourced,
  14. Connecting same gender and same sex relationships to cervical cancer prevention efforts,
  15. Make clear and honest connections between HPV, oral sex, and throat cancer,
  16. Join, support, or host a Walk for Cervical Cancer in your area (find out how here),
  17. Provide support to caregivers of those living with cervical cancer,
  18. Center the testimonios of cervical cancer survivors,
  19. Honor the memories of those who have died of cervical cancer,
  20. Recognize that cervical cancer is preventable!

Wednesday, June 2, 2010

Cervical Cancer, Relationships and Divorce

Cross posted from my RH Reality Check blog

I was recently reading an article at The Daily Beast that discussed 15 signs of divorce. Written by Anneli Rufus who found research that has been published mostly in peer reviewed journals her article “15 Ways To Predict Divorce” piqued my interest as someone who studies intimate sexual relationships among communities of Color. Of the last several items listed was this: “If you've been diagnosed with cervical cancer, your likelihood of getting divorced is 40 percent higher than standard rates; it's 20 percent higher if you've been diagnosed with testicular cancer.” I found this especially specific and went to look at the original research article. What was most fascinating to me was this sentence: “Perhaps the most relevant factor, Syse proposed, is that cervical and testicular cancers mostly affect younger people.”

I wondered what this meant with regards to youth, relationships, and ideas of family. I then started to wonder what the women in my life who have survived cervical cancer would think about this information. Would they have a different take, approach, experience? I had never thought there would have been only one cancer for men and women that would be the most devastating to a marriage. My perceptions were that any type of cancer would be devastating and a challenge. I have witnessed my aunt, the only aunt I was raised with as the rest of my entire family lives on the mainland of Puerto Rico, survive her breast cancer diagnosis last year. Several of my friends have had parents and other close family members who have also been diagnosed with cancer. And then I know very well two women who both have survived cervical cancer. I immediately sent them both a note.

Several years ago I met survivor, journalist, and activist Tamika Felder through a college friend. Tamika, a cervical cancer survivor who was diagnosed in 2001 and had a radical hysterectomy when she was 25, was looking for dedicated people to help her build and sustain a non-profit organization dedicated to educating all people about cervical cancer and HPV. Tamika wanted the organization to most especially provide survivor support in various capacities and work with/educate men. We hit it off and I became the Director of Sexual Health and Education for the organization several of us co-founded: Tamika & Friends, Inc. a national organization.

Since Tamika & Friends, Inc. was established we created House Parties of fiVe (HPV Parties), which incorporated grassroots efforts and communal testimonies as a form of education. These were a huge success and remain one of T&Fs many forms of education and outreach. T&F also planned and executed the first Walk for Cervical Cancer. The first walk was in Washington, DC and today there are chapters and walks in New York City, Atlanta, Charlotte, North Carolina, and Columbia, South Carolina.

As I moved to New York City I had to give up my position as Director of Sexual Health and Education yet have remained active in some capacities. There is a New York City Chapter that has been recently established under the leadership of Patti Murillo-Casa, a survivor of cervical cancer. It was Patti and Tamika that I emailed about this story/finding.

Both Patti and Tamika were not surprised and had heard of this statistic. They both discussed the stigma attached, and for both of them this statistic was discouraging. Patti was diagnosed with cervical cancer after she was married. Tamika has not been married and has a different interaction with the finding. Patti and Tamika agreed to have me share with you their stories and their comments we had about this statistic.

Patti was the first to respond to my note and shared that she had heard of the statistic and that Tamika often talks about it and had recently done so in a Summit earlier this year. She writes: “Fortunately for me my guy has become more gentler and patient with me.” She shares how the intimate and sexual experiences with her partner after her diagnosis and treatment resulted in them finding “a new normal.” Patti even shared that she enjoys her experiences with her husband even more now, post-cancer. She and her husband have created an experience together that is more “tender and gentle” and I interpreted this as them honoring and sharing one another’s bodies in ways they had not before.

Hearing Patti’s testimonio warmed my heart and made me smile. It still does! She not only offers a narrative that challenges stereotypes around "machismo" in the Latino community, but also that expands our understanding of Latino families and relationships in general.

Tamika shared that she always, every time she speaks, talks about this statistic.She shared that “[cervical and] testicular cancer patients/survivors have the highest incidence of divorce. So sad for me. I already had man problems before cancer!”

When I read Tamika’s testimony and commentary it reminded me of the process of healing and coping and how this is a life long experience. Finding someone who you trust and believe will honor your healing is crucial and difficult to find, and I say that as someone who is single and dating, it’s hard! I felt the exact same way when Tamika asked me to write an article for the website on scars and how to cope with our scars as survivors of anything that has left us with a physical scar. As women, our scars and scarring may be different to accept in comparison to some scars that people who identify as men may cope with accepting.

I’d love to hear what survivor’s thoughts are about this statistic, and what the lived realities are as survivors. There are many ways that Tamika’s story and experiences intersect with some of the common statistics about Black women who are single, which my homegirl Omi calls “The Black Love Crisis” and rarely, if ever is surviving cancer included in those discussions!

If you are in New York City I encourage you to join us for the Walk for Cervical Cancer. You may register here. If you are interested in getting involved in various ways, finding support for a survivor in your life, learning more about HPV, finding information on what to do as the partner of someone who is diagnosed with HPV or cervical cancer, or interesting in starting a chapter in your state visit the Tamika & Friends, Inc. website.

Wednesday, September 9, 2009

Walk To Beat The Clock

I'm a founding member of Tamika & Friends, Inc, an organization dedicated to educating people about HPV and ending cervical cancer (caused by HPV).

The 2nd Annual Walk for Cervical Cancer in NYC is next Saturday September 19, 2009 at 8:30am. If you are in the area or are interested in attending please join us!



I will be there and so will my homegirl Andrea (AJ) Plaid as we both attended last year.

Register here.

If you want to attend but cannot afford the registration fee or want to make a smaller donation please contact me bianca@nyc.com or leave a comment here with your contact information.


Read my article on the T&F site about Scars: The Wounds of Warriors And Suvivors.

Thursday, May 7, 2009

Walk To Beat The Clock



An organization close to my heart is one that I helped to co-found with an amazing group of women in the DC area: Tamika & Friends, Inc. The goal of Tamika & Friends, Inc is to end cervical cancer through prevention and education. I was the Director of Sexual Health until I moved back to NYC. One of the main events Tamika & Friends, Inc. sponsors are walks for cervical cancer. The DC Walk is May 16, 2009 and if you are in the MD, DC, VA area or anywhere close by (PA, DE, etc.) please consider attending.

Read more about the Walk and Register. If you are in NYC there is a walk that is being planned for the future. Also, look out for their new updated website coming soon with an article on coping and accepting your scars by yours truly!