Reframing the conversation around cervical cancer and HPV

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Daniella Matthews-Trigg
Program Administrator
LGBT HealthLink

 

 

In October, Michael Bare wrote the post Increasing LGBT HPV vaccines for our blog, and revealed the disturbing statistic that only about 31% of lesbians and bisexual women who were interviewed had completed the 3-shot course of the HPV vaccine, while about 14% had started but not completed the vaccine series. Michael wrote “This is particularly concerning considering lesbians and bisexual women are less likely to get regular PAP tests which can lead to early detection, meaning any cancer diagnosis may come at a later stage in the illness.” In November, the CDC has come out with a series of new infographics illustrating important information about cervical cancer and HPV awareness.

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Lesbians and cervical cancer

Compared to heterosexual women, lesbians may be at greater risk for HPV and cervical cancer due to health and lifestyle factors associated with poor overall health. Women who have sex with women can contract the virus from an infected partner in the same ways heterosexual women can, including through genital to genital contact, touching the genitals of a partner and then one’s own, or sharing sex toys without cleaning them properly first. Many lesbians have also experienced heterosexual intercourse, increasing their risk for HPV. However, lesbians are less likely to regularly visit a reproductive health specialist and are therefore less exposed to information about HPV or make use of the preventative steps developed for women. (Source: National LGBT Cancer Network)

Read more about HPV and cancer in LGBT communities HERE 

Reframing HPV

Much of the work now being done in the health arena around HPV is to reframe the discussion from instead of viewing HPV only as an STI, to instead address the instead address it as a cause of cervical cancer, and  to the lack of education, knowledge, and vaccination from that perspective.

(Read more about preventing cervical cancer on the CDC website HERE)

Additionally, the widespread misinformation about HPV transmission and lack of access to preventative care in LBT communities must be addressed.  Culturally competent clinicians, as well as community outreach campaigns, are two ways to increase testing and awareness in our communities.

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DO LGBT YOUTH HAVE CANCER DISPARITIES?

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Michael G. Bare, MPH
Program Coordinator
National LGBT Cancer Network

Do LGBT youth have higher prevalence of cancer than other youth? To be honest, we don’t know. The lack of sexual orientation and gender identity (SOGI) on institutional intake forms across the medical professions has resulted in difficulty ascertaining LGBT health disparities, requiring researchers to establish studies to answer these sorts of questions. SOGI is also not recorded in cancer registries. What we do know is that LGBT adults do have higher cancer rates, and higher prevalence of cancer risk factors, many of which may be traced back to experiences and behaviors that began in adolescents. Recently, the head of the U.S. food and drug administration stated that smoking is a pediatric disease, because the majority of adult smokers started in adolescents and adolescents who reach adulthood without ever having smoked a cigarette have much lower rates of starting cigarette use later in life. I would argue that many LGBT health disparities, including cancer, may be traced to minority stress and behaviors linked to this form of stress as coping mechanisms. In fact one study, Dr. Rosario (who worked on the study) commented “Sexual minorities are at risk for cancer later in life, I suggest, from a host of behaviors that begin relatively early in life,” said Professor Rosario. “No sex or ethnic racial group is at greater risk or protected for these behaviors. Overall, the study underscores the need for early interventions.” (1)

 

Minority stress is a public health theory which explains that stress resulting from discrimination and stigmatization of minority groups affects the individuals health in a number of ways throughout the lifespan. Many studies of minority stress show that LGBT people experience this, which may be further compounded by racial minority status, disability, class or many other stigmatized identities an individual may hold while also being LGBT. Earlier this year a study found that LGB people who live in communities with high levels of anti-LGB prejudice had a 12 year reduction in life expectancy when compared to heterosexual peers in the same community who do not experience discrimination (2). In 2013 other studies found that LGB people who live in states without LGBT protective policies were 5X more likely than those in other states to have 2 or more mental disorders (3) and LGB people who experienced “prejudice-related major life events” were 3x more likely to suffer a serious physical health problem over the next year than people who had not experienced such events regardless of other factors such as age, gender, employment and health history (4).

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How would adult LGBT health change if LGBT youth were supported by their community and schools?

 

So how does this play out for LGBT youth specifically? One study found that, when asked about concerns, heterosexual high school students stated grades and classes as number 1 on their list, with college and careers, and financial pressures related to college or jobs coming second and third, while LGBT students reported more immediate, tangible issues such as non-accepting families, school bullying and fear of being out as their top 3 concerns (in that order) (5). We also know how stigma and discrimination leads to negative mental health outcomes. So, it is no surprise that mental health issues such as stress, depression and anxiety lead to higher levels of smoking, alcohol consumption, substance abuse and riskier sexual behavior. One study found that LGBT students had higher prevalence in 10 risk categories (these were: behaviors that contribute to unintentional injuries, behaviors that contribute to violence, behaviors related to attempted suicide, tobacco use, alcohol use, other drug use, sexual behaviors, and weight management) (6). The same study Dr. Rosario commented on earlier found that of “the 12 cancer-risk behaviors included tobacco use, drinking alcohol, early sex, multiple sexual partners, higher body mass index (BMI) and lack of exercise. The report found that for all 12, sexual minorities were more likely than heterosexuals to engage in the risky behavior (1). Other studies have linked psychological distress and LGBT victimization to high smoking prevalences (6).

 

So, while there is limited data on cancer among LGBT youth, it is clear that lifetime stressors related to LGBT status, instilled in adolescence, coupled with unhealthy coping mechanisms, are responsible for increased cancer incidence among LGBT adults. It is my opinion that the roots of these cancers may be traced to experiences of homophobia as a LGBT pediatric health disparity.

 

References:

  1. Rosario, M., Corliss, H. L., Everett, B. G., Reisner, S. L., Austin, S. B., Buchting, F. O., & Birkett, M. (2014). Sexual orientation disparities in cancer-related risk behaviors of tobacco, alcohol, sexual behaviors, and diet and physical activity: pooled Youth Risk Behavior Surveys. American journal of public health, 104(2), 245-254.
  2. Garcia, M. (2014). Study: Antigay communities lead to early LGB  death. Advocate.com. Retrieved fromhttp://www.advocate.com/health/2014/02/16/study-antigay-communities-lead-early-lgb-death
  3. Haas AP, Eliason M, Mays VM, et al. Suicide and suicide risk in lesbian, gay, bisexual, and transgender populations: review and recommendations. Journal of homosexuality. 2011;58(1):10-51.
  4. Durso, L. E., & Meyer, I. H. (2013). Patterns and predictors of disclosure of sexual orientation to healthcare providers among lesbians, gay men, and bisexuals. Sexuality Research and Social Policy, 10(1), 35-42.
  5. GROWING UP LGBT IN AMERICA (HRC). (2012) http://www.hrc.org/youth
  6. 6.Kann, L., O’Malley Olsen, E., McManus, T., Kinchen, S., Chyen, D., Harris, W. A., & Wechsler, H. (2011). Sexual Identity, Sex of Sexual Contacts, and Health-Risk Behaviors among Students in Grades 9-12–Youth Risk Behavior Surveillance, Selected Sites, United States, 2001-2009. Morbidity and Mortality Weekly Report. Early Release. Volume 60. Centers for Disease Control and Prevention.

 

#BWLGBTI Day 3 Part 2: Community-based research is still important

dwayne

 

 

Dwayne Steward

LGBTQ Health Advocate
Columbus Public Health

 

 

We’ve come to the end of the LGBTI Health Research Conference at Baldwin Wallace University. This has been a very life-changing experience, for which I am truly grateful. Being in the room with so many experts that have and are currently making groundbreaking changes in the country, and around the world, regarding the inclusion of LGBTI communities in health research has been phenomenal. I can’t thank the Network for LGBT Health Equity enough for this amazing opportunity.

Jacob Nash

Jacob Nash

The conference began it’s last half with two lively panel discussions. The first was “Community Perspectives Regarding LGBTI Health” featuring Jacob Nash (transgender activist and director of Margie’s Hope), Alana Jochum (Equality Ohio’s Northeast Ohio Regional Coordinator) and Maya Simek (program director for The LGBT Community Center of Greater Cleveland). Jochum made some very interesting points regarding how LGBTI health research has made historic advances in LGBTI rights possible. She referenced several court cases that have used the statistics compiled by researchers, several in the room, in major courtroom arguments for marriage equality. Her examples helped further illustrate the need for the work of those attending the conference. Nash and Simek put out calls to researchers for more specified research studies on marginalized populations and offered insights on the health issues they’re seeing among marginalized populations. They both reiterated the need for more collaboration between activists and health researchers.

The conference officially ended with “LGBTI Health and Human Rights in International Settings” with a very dynamic panel of LGBTI health community organizers from Latin America and India.

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“LGBTI Health and Human Rights in International Settings” Panel

Wendy Castillo, a community organizer from El Salvador who has done work providing safe spaces for lesbian and transgender women, spoke at length about the tragic murders that continue take the lives of transgender women regularly in El Salvodor and the struggles organizations there face with trying to keep transgender women safe. Daniel Armando Calderon and Alejandro Rodriguez, both community organizers around issues facing the MSM community in Columbia, discussed how they try to decrease barriers for “heterosexual MSM’ and other special populations needing HIV care and other health services.

Vivek Anand, of Humsafar Trust, closed out the conference with more detail regarding his efforts regarding the recent re-criminalization of homosexuality in India. His organization has courageously come to the forefront of attacking this law that was passed by the country’s Supreme Court after massive efforts from religious leaders. I thinks it quite admirable that the work he’s doing is heralding and sometimes dangerous, but he faces it head on with an upbeat attitude. He ended his presentation with a video of Gaysi‘s (an LGBT advocacy organization in Mumbai) #notgoingback campaign, one of the efforts to build awareness and garner support for repealing the law. The upbeat video, featuring Pharrell Williams’ massive hit song “Happy,” is a perfect representation of Anand’s bubbly activist spirit.

And thus we end our time together my friends. Please always remember the words of Dr. Martin Luther King that I used to start this blog series, “Our lives begin to end the day we become silent about things that matter.” Let’s never end this very important conversation!

#BWLBGTI Day 2 Post-Lunch: Revisiting sexual health

dwayne

Dwayne Steward 
LGBTQ Health Advocate
Columbus Public Health

After lunch at day 2 of the LGBTI Health Research Conference at Baldwin Wallace is all about sexual health. Historically this would have been the bulk of such a conference as this. As most of us know, pathology-focused research on homosexuality and gender diversity, along with the stigma associated with the HIV/AIDS epidemic forced LGBTI healthcare into a sexual health box for many years. It’s interesting to see that the pendulum is swinging back the other way in some ways as we as LGBTI healthcare workers/researchers are now having to convince certain communities that sexual health is still an important factor of the LGBTI health experience.

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Dr. Anthony Silvestre, professor of Infectious Disease and Microbiology at the Graduate School of Public Health at the University of Pittsburgh, opened with a lunch-time keynote on the history of sexual health research, reminding us how far we’ve come regarding the study of sex and sexuality in this country. He than joined Dr. Brian Dodge, Indiana University-Bloomington School of Public Health, for the “LGBTI Health Training” seminar track, which included a lively discussion on the changing landscape of HIV and intersectionality in public health research.

There was definitely a lot of talk about training program models in Indiana and Pennsylvania, but through the lens of sexual health research. Dr. Silvestre spoke on University of Pittsburgh’s LGBT health certificate program along with several other LGBT-focused specialized programs the university offers, including a post-doctorate program that specialized in MSM (men who have sex with men) healthcare.

Dr. Dodge made several interesting conjectures about the study of sexual health saying, much of the conversation regarding sexual health has been risk based. “We need to be including more about the actual pleasure of sex and begin taking a more sex-positive approach. It is okay for gay sex to be enjoyable,” he said. He went on to say that programs should take a more competency-based approach to better prepare students for their post-college endeavors.

My fellow Network for LGBTQ Health Equity scholarship recipients Heru Kheti (middle) and E.Shor (right).

My fellow Network for LGBTQ Health Equity scholarship recipients Heru Kheti (middle) and E.Shor (right).

Dr. Francisco Sy, director of the Office of Community-Based Participatory Research and Collaboration at the NIH/National Institute of Minority Health and Health Disparities (NIMHD), took a moment to educate the audience on the NIH grant process and how to best navigate their grant application process. But the day’s real winner was Dr. Erin Wilson’s presentation, “HIV Among Trans-Female Youth: What We Now Know and Directions for Research and Prevention.” Dr. Wilson, who is a former NIMHD Loan Repayment Program (LRP) recipient and research scientist currently with the AIDS Office at the San Francisco Department of Public Health, quickly (due to time constraints) spoke on her ground-breaking NIH-funded research on the social determinants of health that led to high HIV-infection rates for transgender female youth in Los Angeles.

The statistics Dr. Wilson reported were pretty staggering. She prefaced much of her presentation by saying her studies were very specific to L.A. and she had no research to show that this was reflective of the national transgender female population. She reported finding that transgender females in L.A. were 34 times more likely to contact HIV than the general population and at the time of her study nearly 70 percent of transgender female youth in L.A. participated in sex work. As a result of her work The SHINE Study was created, the first longitudinal study of trans*female youth that still continues today. Though nearly 40 percent of transgender females in L.A. are living with HIV only 5 percent are youth. “We have a great opportunity to get ahead of this disparity and create some real change,” she said.

That’s all for today my friends. Check back tomorrow for a full report on Day 3 of the Baldwin Wallace University LGBTI Health Research Conference (#BWLGBTI)!

#BWLGBTI Day 3 Part 1: The IOM Report

dwayne

 

 Dwayne Steward

 LGBTQ Health Advocate
 Columbus Public Health

 

 

 

Back at Baldwin Wallace for the last day of the LGBTI Health Research Conference and the morning is being spent on very detailed analysis of the Institute of Medicine‘s National Institutes of Health-commissioned 2011 report “The Health of Lesbian, Gay, Bisexual, and Transgender People: Building a Foundation for Better Understanding” The Health of Lesbian, Gay, Bisexual, and Transgender People: Building a Foundation for Better Understanding.”

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Dr. Walter Bockting, of Columbia University who served on a committee that penned the report, returned to the stage to offer a brief history of the document, it’s findings/recommendations and next steps. Most striking was that the main point made by the study, which is there’s a general lack of research when it comes to sexual orientation and gender identity, a fact many of us are very much aware of, but I think the impact of this report is in the robust list of recommendations the study produced for NIH. Here are few:

  • NIH needs to implement a comprehensive research agenda.
  • Sexual orientation and gender identity data needs to be collected in all NIH federally-funded research.
  • Sexual orientation and gender identity data also needs to be collected in electronic medical records.
  • Research training should be created by NIH that is specific to sexual orientation and gender identity.
  • Encourage NIH grant applicants to address the inclusion or exclusion of sexual orientation and gender identity. (This is already a requirement for other marginalized groups, such as racial minorities.)
  • Identify sexual orientation and gender identity among the NIH official list of minority populations with disproportionate health disparities.

Dr. Bockting himself said at one point what I’ve been thinking since I read the study months ago, “A year ago I was skeptical about if we would receive the support needed to see these recommendations through. Without support it will be very difficult for us to make any progress.” However he went on to say, “But things are really beginning to look up and I think we’re going to begin making some strides.”

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(From left) Dr. Alexander, Dr. Bradford and Dr. Bockting

Dr. Bockting’s statements were overwhelming verified later by Dr. Rashada Alexander, a Health Science Policy Analyst at NIH. She discussed how NIH was responding to the IOM report, most notably the creation of the NIH LGBTI Research Coordinating Committee whose task is to create a national strategic plan for sexual orientation and gender identity research. I was pleasantly surprised to hear that this group existed and will be releasing their strategic plan by the end of the year. She also went on to discuss a funding opportunity announcement NIH has released specific to LGBTI health research and and other efforts of the NIH regarding LGBTI health.

It’s very empowering to know that our federal government is taking an intentional approach to studying LGBTI health, especially when this was something that wasn’t possible just five years ago.  I feel as if I’m watching systemic change take place right before my eyes. It’s a very exciting time to be an LGBTI health researcher!

#BWLGBTI Day 2: Perfect time, perfect place

dwayne

Dwayne Steward
LGBTQ Health Advocate 
Columbus Public Health

As I continue into the second day of the LGBTI Health Research Conference at Baldwin Wallace University, it struck me as pretty powerful that the BW’s president Robert Helmer opened the first day of seminars with the words “this is the perfect time and the perfect place for this [conference].” (BW Provost, Dr. Stephen Stahl also reiterated this sentiment just after lunch with saying, “this conference is at the core of founding values.”) This stayed with me throughout the morning as we heard from such innovative speakers such as Dr. Eli Coleman who, just through all of the heralding stories he shared, showed his longstanding impact on changing the American perspective on LGBTI health research. Dr. Coleman, who is currently the director of the Program in Human Sexuality at the University of Minnesota School of Medicine, also left me with a new mantra: “Without rights we will not have [good] health.”

Dr. Eli Coleman

Dr. Eli Coleman

After Dr. Coleman’s keynote address, the morning continued at a rapid-fire pace, with a revolving door of one prestigious presenter after another. Here are a few brief notes on the presentations I thought most intriguing.

  • During the “Translating Research into Policy and Heath Interventions” seminar track Kellan Baker, associate director of the LGBTI Research and Communications Project at Center for American Progress, gave a very interesting look at how political advocacy has led to inclusive research, highlighting the work of HIV/AIDS advocates during the 1980s. Baker went on to show that though there have been strides made concerning LGBTI political inclusion, there’s still so much more to be done. I found it interesting that between 2002 and 2010 there was absolutely no inclusion of LGBTI communities in any federal health research because of the change in presidential administration. This silence prompted the Gay and Lesbian Medical Association to create a sexual identity and gender identity specific companion report to the National Institutes of Health 2010 Healthy People report. Now in their 2020 Health People edition we see two LGBTI-focused reports because of such advocacy efforts.
  • Vivek Anand, Executive Director of Humsafar Trust in Mumbai, India, also took the stage during the “policy and health interventions” track and wowed myself an the audience with the grassroots, community-based research he’s been conducting in India, despite the country still criminalizing homosexuality. “On-the-ground work and community-based research is still crucial…if we are not out in the community and visible we will not be counted,” he said. Humsafar has fund-raised thousands of dollars and build several LGBT organizations in India, providing countless services and research for a nearly invisible community.
Vivek Anand

Vivek Anand

A brief break led right into a seminar track on “Sexual Orientation, Gender Identity, and Intersex Data at Population and Clinical Levels,” which I personally found rather enthralling. I was pleasantly surprised by the amount of evidence-based research that exists regarding adding sexual orientation and gender identity to medical forms and records.

  • Joanne Keatley, briefly detailed research from the Center of Excellence for Transgender Health at University of California-San Francisco that highlighted the groundbreaking work she was involved with to make the U.S. Center for Disease Control and Prevention start collecting transgender data in 2011. She also stressed the importance of including transgender female-to-males in HIV research, as much of their studies showed that this is an affected demographic, despite current perceptions.
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The many words for “transgender”

  • Karen Walsh, an intersex activist, detailed the importance of intersex research and how to include intersex information collection in an accurate and affirming fashion. I learned so much on the intersex community that I was not aware of, including most who are intersex receive some sort of surgical interventions as children but surgery is often medically unnecessary.
  • Dr. Jody Herman, of the Williams Institute at University of California-Los Angeles, and Harvey Makadon of Fenway Health’s National LGBT Health Education Center, also provided invaluable examples of specific language and formats that can be used on forms to capture sexual health and gender identity. If you are a healthcare provider that values inclusion I highly recommend visiting their organizations’ websites.

Stay tuned for more post-lunch recaps!

Baldwin Wallace presenting first LGBTI health conference with class

dwayne

Dwayne Steward
LGBTQ Health Advocate
Columbus Public Health

Martin Luther King Jr. once said, “Our lives begin to end the day we become silent about things that matter.” It’s become a mantra I’ve come to live by. It is the starting of and building upon conversations that matter that truly leads to change. This mantra is even more present as I head into the LGBTI Health Research Conference today though Saturday at Baldwin Wallace University in Berea, Ohio.

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As the LGBTQ Health Advocate for the City of Columbus in Ohio, a seasoned journalist and full-time activist, I often find myself in the midst of important conversations. Conversations about improving the health of gender and sexually diverse communities, and how we can increase access to care for deeply marginalized populations. I was hired by the city just over a year ago to create the Columbus Public Health LGBTQ Health Initiative and in our first year we’ve already made massive impact with the development of our Ohio LGBTQ Youth Safety Summit, implementation of citywide healthcare provider-focused LGBTQ cultural competency training and the creation of a robust community engagement platform, just to name a few. To say LGBTQI healthcare is a passion of mine would be a gross understatement.

The LGBTI Health Research Conference will be an excellent opportunity to bring the best minds in the field together around the healthcare issues faced by lesbian, gay, bisexual, transgender, queer and intersex populations, which I hope will lead to helping decrease health disparities of LGBTI individuals in places like my Midwestern hometown of Columbus, Ohio.

“It is hard to download all that is known about LGBT health in a day and a half, but we are really interested in getting people together to build connections that will hopefully lead to building more work towards LGBT healthcare,” said Dr. Emilia Lombardi during a phone interview leading up to the conference. Dr. Lombardi is an Assistant Professor within Baldwin Wallace University’s Department of Public Health and one of the conference’s lead organizers.

Dr. Lombardi went on to tell me she’s been working with supporters such as Cleveland State University and MetroHealth Medical Center for more than a year to bring the university’s first conference focused on LGBTI health to fruition. Prestigious presenters from the National Institutes of Health, Harvard Medical School, The National LGBT Health Education Center and Fenway Health are just a few of the organizations presented on the schedule.

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Dr. Lombardi said the Institute of Medicine’s groundbreaking 2011 report, “The Health of Lesbian, Gay, Bisexual, and Transgender People: Building a Foundation for Better Understanding,” (commissioned by the National Institutes of Health) was a major step by the federal government that led to the creation of the conference.

“NIH asked the Institute of Medicine to bring together experts in LGBT health to discuss the need,” she said. “The NIH has even put forth a new effort to support more LGBT-related health research. It’s very encouraging to know that our federal government supports us.”

I arrived in Cleveland to a beautiful reception at MetroHealth with a keynote by the health institution’s CEO,  Dr. Akram Boutros, which is no surprise as MetroHealth has housed one of the nation’s leading LGBT health clinics for nearly a decade. Though I’m definitely impressed by the high-caliber of speakers BW was able to procure for their first LGBT health conference. I’m looking forward to an unprecedented weekend of immersion into the health research of LGBTI communities. (With maybe a little Gay Games fun as a side bonus.) Continue to check this blog for more coverage of the conference from me and a few colleagues as this amazing weekend continues!