When thinking about cancer, many people react with fear, confusion, sadness, and anger. Anal cancer can provoke all of these thoughts, along with additional feelings of embarrassment, uneasiness, and a sense of stigma. As a result, the conversation about anal cancer is hidden in a place where the sun doesn’t shine.
Now, it’s time to shed our anxieties (and our pants) to face anal cancer head on.
The National LGBT Cancer Network in partnership with Tusk and Dagger is launching a campaign to raise awareness about anal cancer and create a directory of free/low cost LGBT-friendly anal cancer screening facilities across the country. We invite you to show your support by donating at bit.ly/BehindClosedDrawers or texting “UNDIES” to 41444. We then ask you to help spread the word about uncovering the truth about anal cancer by posting a photo of your underwear on social media and tagging it with#BehindClosedDrawers. We hope to use these photos to add a touch of levity to a subject that is difficult to talk about.
Tackling anal cancer is a natural fit for The National LGBT Cancer Network: while the incidence is relatively rare in the general population (about 1 in 500) it is up to 34x more prevalent in men who have sex with men, and increasingly annually.
The majority of anal cancer cases are caused by the human papilloma virus (HPV)
HPV can be transmitted through both protected and unprotected anal intercourse and skin-to-skin contact, including manual stimulation
HIV-positive men with a history of anal intercourse are at the greatest risk for developing anal cancer; risk factors also include being a transplant recipient, a weakened immune system, smoking, and age
A growing number of physicians and health activists recommend that all men who have sex with men, especially those who are HIV+, be tested every 1-3 years depending on their immunological well-being and CD4 count. They suggest that HIV negative individuals be screened every 3 years.
This work is important, because most people know little about anal cancer, have never been screened for it, and don’t know that screening tests exist.
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.
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.
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!
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.”
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!