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Interview

Using What's in Your Underwear Drawer to Talk About Anal Cancer

National LGBT Cancer Network's Behind Closed Drawers Campaign Launches This Week to Shed Light on Anal Cancer Epidemic

January 12, 2015

Liz Margolies

Liz Margolies

What comes to mind when you think about cancer? It's probably not underwear. And yet, to increase awareness of anal cancer -- an all-too-common cancer in gay and bisexual men, transgender individuals and people with HIV -- the National LGBT Cancer Network has launched a social campaign called Behind Closed Drawers. For those who want to get involved, it's a chance to shed anxiety (and pants) to face anal cancer head on.

Getting involved is as easy as taking a picture of your underwear with the hashtag #BehindClosedDrawers and making a donation to the National LGBT Cancer Network. To learn more about the campaign, I sat down with Liz Margolies, L.C.S.W., executive director of the National LGBT Cancer Network. We discussed the shame and stigma around anal cancer, what she learned from the ALS Ice Bucket Challenge and what you can tell about people from their underwear.

Can you tell us a little bit about the National LGBT Cancer Network?

I founded the National LGBT Cancer Network in 2007 to address the needs of LGBT people with cancer, and those at risk. Our mission has three parts. We educate our community about our increased risks and the importance of screening and early detection. Behind Closed Drawers fits perfectly in that. We also educate health care professionals to offer more safe and welcoming care. Because I can't encourage people to engage with the health care system when the main reason they don't is that they've had horrible, crappy experiences. So I have to make sure I'm working to make that better, on the other hand.

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We also advocate for LGBT inclusion in national research and media. So I'm writing to all kinds of cancer organizations, saying, "You need content about LGBT people. Research. Are you collecting SOGI (sexual orientation and gender identity) data?" Now we also offer free online support groups for LGBT cancer survivors.

This fits in with the first part of our mission. We hatched this idea to both raise awareness about the problem of anal cancer in our community, and to try to raise money so that, without government interference, we can start developing a broad educational campaign.

Let's talk about Behind Closed Drawers. When did the National LGBT Cancer Network decide that anal cancer was something that it wanted to tackle?

Well, people write to me from all over the country and talk to me about their cancers. HPV [human papillomavirus] is becoming a big force in multiple cancers.

There's more money out there for breast cancer. There's almost nothing around anal cancer, primarily because it's a fairly rare cancer in the general population. I feel that, at this point, my organization has to begin to fill in this gap. We've done a campaign about ovarian cancer, for example. I have personally lost -- this is unbelievable -- four really close friends to ovarian cancer. And I'm not old. What are the odds of that?

Anal cancer is an epidemic. The rates of anal cancer in our population are similar to the rates of cervical cancer in the general population before the routine use of cervical pap smears. Gay is an identity, right? It's not a measure of behavior. Plenty of straight people are having sex with someone of the same sex. There's a good study that shows, like, close to 10% of people in this study who identified as straight had had sex with a man in the last year. And when people are doing it without it being part of their identity, they're less likely to use a condom, in fact. They're also more likely to be people of color.

Using What's in Your Underwear Drawer to Talk About Anal Cancer

So, anybody who engages in anal sex can be at risk for anal cancer. But it's just much more common among gay and bisexual men, and also many transgender women.

No one else really cares about this population and I feel like we are the organization that should be taking this on. Rather than beating on doors to try to get money, I thought we could, with Behind Closed Drawers, have a double-edged campaign that tries to raise money that we could use without government interference but, at the same time, alerting people to anal cancer. And we do it in a way that reaches our community by making it fun. We put the fun in fundraising. And making it sexy -- because gay men like nothing more than something sexy.

So the campaign works by asking people to donate. We very purposely keep the requested donation minimum at $10. And let me say, some people have given $5. The point is to try to give. And so people first donate, then we ask them to post a picture of their underwear on Facebook, Twitter, Instagram -- whichever social media they use -- tag it with #BehindClosedDrawers, and then challenge others to do the same. It's a kind of branching system. Has it become what would be called viral? No.

So people have done all kinds of interesting things. Some of the pictures are funny; some are sexy; some are silly; some are modest. Women, especially, tend to put their underwear someplace random and take a picture of it. The men are more likely to wear it.

In this way, we hope to catch people's eyes, and engage them. I have learned more surprising things about the kind of underwear everybody wears.

Using What's in Your Underwear Drawer to Talk About Anal Cancer

That's very interesting. Do you think you can tell something about someone from that?

I identify as bisexual or a lesbian. My partner is a transgender man. So I'm surprised, as I see other lesbians, to see who's wearing boxers, who's wearing male-style women's underwear. Some women that I wouldn't have thought were so femme-y have frills. And I'm not above noticing what brand they wear. Like, "Oh, I never would have taken you for J. Crew. Really?" It's all funny to me.

Would you say that you were inspired by especially something like the ALS challenge that happened last year?

Everybody's been inspired by that. What I did, though, was, I studied. I read a bunch of articles about why that worked. Because, let's face it, none of those people care about ALS. I don't think they could tell you one sentence about it.

I tried to understand, by reading multiple analyses, what made that work. It tapped into people's desire to post pictures of themselves, in that case, videos. And it used friendship circles. Within our community, we are all about our friendship circles, or what we sometimes call our families of choice, or an army of ex-lovers. These are the people we turn to if we are, God forbid, diagnosed with cancer. These are the people who take care of us.

As a group, we can't always count on our families of origin, our biological families, to be there. Many people have been rejected from their biological families because of their sexual orientation or gender identity. What my organization's research has found is that, despite what we may wish, these ruptures are not healed when people have a cancer diagnosis. So we depend on each other. I tried, in defining Behind Closed Drawers, to make use of these networks of friends and ex-lovers that we have.

Using What's in Your Underwear Drawer to Talk About Anal Cancer

That's very powerful. We're talking about anal sex and people that we're intimate with, and then asking those people that we're intimate with to also care about some of the results of our intimacy, and the unfair health disparities that go along with that intimacy.

Yes. Now, let me say the campaign is more fun than if you have unexplained itching that goes on, or a hemorrhoid that doesn't go away. I met somebody at a party last Sunday. Actually, he was working the party, serving food and drink. And he confides to me that he's had a hemorrhoid, on and off, for the last year. I'm like, "You need to get a biopsy. You need to get a biopsy."

He said, "I don't have anal cancer."

I said, "You probably don't have anal cancer. But the thing about it is, it's a slow-growing cancer." It starts with minor cell changes. It can be caught before it turns into cancer, so there's no reason to even get it. People can have polyps removed if they have a colonoscopy. A polyp isn't a cancerous growth, but they could turn into one, in time. It's just a great disease to talk about screening and early detection.

With lung cancer, there's just not as much screening for that. Even though we know that our people use tobacco at 65% higher rates than the general population, there isn't a good screening tool.

Using What's in Your Underwear Drawer to Talk About Anal Cancer

The ultimate goal of the campaign is to raise money and create a resource guide online, correct?

Yes. We have a directory now, but we really want to build the directory. Because our goal is for everybody to be able to find an LGBT safe and welcoming anal cancer screening provider within driving distance of them (or subway distance, if you're in New York). And that's going to take work for us to do.

Again, it has to be two-pronged: We have to have the resources ready; and we have to let people know when they should be screened. We also want to push for the HPV vaccine.

There was a recent article. In this study, young adults, gay and bisexual men, only 13% had been vaccinated, had received any doses of the HPV vaccine. And about 83% of those had received the recommendation from their health care provider.

Now, many times, providers are not recommending it if they think somebody is exclusively heterosexual. Well, that still makes no sense. The fact that too many young LGBT people don't feel safe coming out to their providers means they're even less likely to get the vaccine. So, once we have enough money, we will work to tell young people -- young gay, bisexual and transgender men, especially -- about the vaccine. We will build our directory, and we'll just have a clever, sexy, fun campaign about check-your-butt-out kinds of things in a very everyday language -- comfortable, try-to-get-somebody-famous-to-be-funny kind of way.

You're not going to reach people by scaring them.

But it takes money. And we don't have enough yet. You're going to help!

This transcript has been lightly edited for clarity.

Liz Margolies, L.C.S.W., is the founder and executive director of the National LGBT Cancer Network. Margolies is also a psychotherapist in private practice, specializing in trauma, loss, health disparities and sexuality. She is a guest editor of a special issue of the journal Women and Psychotherapy on women and cancer, published in August 2014. Margolies is also a blogger for the Huffington Post and helps curate the LGBT Wellness page on the Gay Voices vertical. You can follow the National LGBT Cancer Network on Twitter at @cancerLGBT.

Images courtesy of National LGBT Cancer Network.

Mathew Rodriguez is the community editor for TheBody.com and TheBodyPRO.com.

Follow Mathew on Twitter: @mathewrodriguez.


Copyright © 2015 Remedy Health Media, LLC. All rights reserved.

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