03/07/2012 08:06 pm ET Updated Feb 02, 2016

'Everyone' Doesn't Always Mean Me

As the executive director of the National LGBT Cancer Network, my work is all about LGBT cancer survivors and those at risk. In the vast, multi-million dollar world of pink and teal ribbons, cancer organizations and foundations, we are nearly alone in this focus. I often interact with these mainstream groups, and when I do, I bring up the underserved and invisible LGBT community. "Oh, don't worry," they always say in that reassuring voice. "Our organization and our services are meant for everyone."

Really? In almost every instance, the flyer, the event, or the webpage for "everyone" doesn't include me.

If they write about cancer risks, there is no mention of the increased cancer risks of LGBT people. If they speak about screening or early detection, there is no mention of the additional difficulties LGBT people face, including discrimination and lower rates of health insurance. If they offer referrals for support groups, they rarely have one for LGBT survivors or caregivers. Most articles on of the impact of cancer treatment on sexuality assume that all of us are heterosexual. I am tired of feeling grateful for the information they do provide.

Let's try this test ourselves now. Imagine that I'm a lesbian whose partner was just diagnosed with lung cancer (remember that LGBT people use tobacco at nearly twice the national rate). I go to the Internet for information and support. Google's first suggestion is the National Lung Cancer Partnership. Their tag line is "Research, Awareness, Change." Sounds good so far. I click through to the website and type the word "lesbian" in the search box. What do I find? "No results matched your query." No, "everyone with lung cancer" does not include me.

Or let's imagine I am a transgender man looking to find a free, safe, and respectful place to receive a cervical pap smear. Let's also imagine that I don't live in one of the largest metropolitan centers in the country, but in, let's say, Clearwater, Fla. I go to Google and find the Florida Breast & Cervical Cancer Early Detection Program. The opening paragraph tells me that they are free (good!), but I only qualify if I am a "woman." No, I am not welcome there. I suppose I could call and explain that, although I am not a woman, I have a cervix, but I fear the discomfort and discrimination I may face. No, "we provide pap smears for everyone who needs one" does not include me.

I know that there is an increasing number of organizations, facilities, and cancer websites that recognize the LGBT community. They show us that by including information we need, not by asking us to accept their one-size-fits-all approach. We need everyone to follow suit.

Last week, I met with a woman who wanted the National LGBT Cancer Network to distribute her articles on cancer survivorship. She said, "I don't specifically mention LGBT people in any of the pieces, but this information is of great benefit for everyone."

Really? She didn't understand that her information on the Family Medical Leave Act of 1993, FMLA, is of limited value for LGBT people. FMLA is the federal law that requires that workers at large companies (with 50 employees or more) be granted unpaid, job-protected leave to recover from a serious health condition or to care for a seriously ill family member. But due to the discriminatory Defense of Marriage Act (DOMA), LGBT workers cannot take paid and protected leave to care for domestic partners or same-sex spouses, even in states where they are legally married. So, no, I did not agree to distribute her articles.

As an LGBT person, my family is different, my support system is different, my access to care is different, and my welcome in your support groups is not guaranteed. If you don't know that and show me that you do, you are not including me. I will no longer be invisible and grateful.