Action Alerts · Cancer · LGBT cancer · Survivor Support Groups · Take Care of That Body

Announcing: OPEN REVIEW for developing best & promising practices for LGBT cancer

LGBT HealthLink and the National LGBT Cancer Network have partnered to begin developing best and promising practices throughout the cancer continuum for LGBT people.

We are asking for you to contribute your expertise and knowledge to this process by reviewing and adding to what the expert committee has developed. Comments are being collected through an easy online process. Just follow the link below.

Whether you are a Survivor/Community Member, Provider/Clinician, Researcher/Scientist, or Public Health/Government Professional – we want to hear from you. Help us build a one of its kind resource to better fight cancer in the LGBT community and save lives.

One last thing, please share this opportunity with your colleagues so they too can share their expertise and knowledge just like you will.

Thank you in advance for your help.

Review here:


Dr. Scout                                                                 Liz Margolies

Director                                                                   Executive Director

LGBT HealthLink                                               National LGBT Cancer  Network



Action Alerts · Cancer · LGBT cancer

Behind Closed Drawers: a FUNdraising campaign for anal cancer


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 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.

You can help us change that!

To donate, text “UNDIES” to 41444 or visit:








Interested in helping out “Behind Closed Drawers”? Head here and then spread the word with a photo of your underwear and the hashtag #BehindClosedDrawers.

Action Alerts · White House

Open Enrollment 2015 with Pres. Obama and HHS Secretary Sylvia Burwell

hhs logoPresident Barack Obama and Department of Health and Human Services (HHS) Secretary Sylvia M. Burwell will be discussing the upcoming open enrollment on Friday, November 7th at 4:00 PM ET. Open enrollment starts November 15, 2014 and ends February 15, 2015. During the open enrollment period you can enroll in a new plan, switch plans, and get subsidies.

The new Tax Penalty for 2015

If you don’t have coverage in 2015, you’ll pay the higher of these two amounts:

  • 2% of your yearly household income. (Only the amount of income above the tax filing threshold, about $10,000 for an individual, is used to calculate the penalty.) The maximum penalty is the national average premium for a bronze plan.
  • $325 per person for the year ($162.50 per child under 18). The maximum penalty per family using this method is $975.

(as compared to the tax penalty for 2014, which was 1% of your yearly household income or approx. $95 per person for the year.)

You are invited to join the discussion via conference call on Friday, November 7th at 4:00 PM ET with President Barack Obama and Department of Health and Human Services (HHS) Secretary Sylvia M. Burwell to discuss the upcoming open enrollment period for the health insurance marketplaces under the Affordable Care Act. Please note: This call is off the record and not for press purposes.

Call Details






Action Alerts · Conferences · Netroots Nation · Presentations · social media

CATCH ME IF YOU CAN…and win prizes!

Our very own Dr. Scout may be coming to a town near you! Dr. Scout will be out and about over the next few months; leading cultural competency trainings in many states, speaking on an all Trans pride panel, in Philly at the Trans Health Conference , co-writing an LGBT Health Research Textbook, at the Netroots Nation Conference and many other places.

So, over the next few months, if you happen to see Dr. Scout, take a picture with him and post it to your (and your organization’s) Twitter and Facebook page! And, when you post your picture, we will send you a free gift!

Here are the rules:

  1. Take the perfect selfie with Dr. Scout
  2. Post the picture to Facebook and/or Twitter
    1. If you are posting to Facebook make sure to tag us (@The Network for LGBT Health Equity) in your post.
    2. If you are posting on Twitter make sure to tag us in your Tweet (@lgbthlthequity)
    3. Also please use the #’s:
  1. Once you have posted we will send you a direct message (Twitter) or message (Facebook) to get your mailing information and send you some sweet swag!


Now that you have your rules, here’s the list of events to catch Dr.Scout:

June 10: DC to NIH speaking on a pride panel

June 12-13: Philly for TransCon

June 14-15: Pittsburgh Author Meeting on LGBT Health Research Textbook

June 16-20: Denver – National Jewish Hospital for quit line staff

July 10-14: San Diego Phoenix Group cross-disparities meeting

July 15-20: Detroit for Netroots Nation Conference 2014

July TBD: St. Louis


Congrats To Two of Our Winners Charles and Kira

Catch Charlie

   catch Kara

                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                 (Here are some examples of the swag we will send you!)

lady t-vneck

 t-shirt men









Action Alerts

Dr. Trans Goes to Washington

Scout, Ph.D.

Director of CenterLink’s Network for LGBT Health Equity

As published on Huffington Post’s new LGBT Wellness blog, see original at:

Thursday I’m pulling my suit jacket out of the closet, shining my shoes and heading down to DC. I’ll be joining a small band of health leaders attending Secretary Sebelius’ annual LGBT listening session. This is where we get to sound off on what we think would be good for the Department of Health and Human Services (HHS) to accomplish in LGBTQI health in the coming year. We can’t all go down to talk to HHS, but let me represent you, tell me in the comments below what matters to you in LGBTQI health. This year, like the last three, Secretary Sebelius’ LGBT Issues Coordinating Committee will take our input and create an action plan for improvement.

There are two reasons the federal government’s actions to eliminate LGBTQI health disparities are especially important. First, the government is the single largest purchaser of health care and health research in the United States. Second, being the federal government, they have more influence than any other body on what policies the rest of the healthcare system adopts. In other words, the federal government is the most popular kid in the school of health; if they do it, others will too.

It’s pretty fascinating how these high-level policy decisions affect people’s everyday lives. When HHS’s Administration on Children and Families undertakes a systematic review of practices to improve the well-being of LGBTQ youth, they then get the chance to include those best practices in $23 billion dollars of grants which are disseminated to local programs. These are the programs LGBTQI youth encounter every day. That’s the scale and potential impact we’re talking about here.

Sebelius’ 2013 LGBT action plan objectives included measures aimed at increasing outreach and enrollment under the first ever open enrollment period for health insurance exchanges; improvements in research and data collection; and advancements for youth through two different major HHS agencies. How did they do in meeting these goals last year? Honestly, even as someone who follows the federal progress on LGBT health pretty closely, it is pretty hard to know. I’ll have to wait til the meeting next week to hear how they did on these objectives. Regardless of how satisfied Sebelius is, we need to keep pushing for the things that matter to us.

I really want to hear your ideas. Let me start you off by throwing some out.

First, commit to collecting data on transgender people. No one in the federal government has been able to tell me if HHS’ current plan of asking states to collect trans data has resulted in any new trans data collection. Meanwhile 2014 will provide us the largest new LGB data wave ever, as we see the results of our pressure to add data collection to their most influential survey, the National Health Interview Survey. Apparently our message of “Please collect LGBT data” was only partially heard.

Second, designate LGBTQI populations as a legally defined disparity population. One institute in the National Institutes of Health has the legal authority to expand this definition to include LGBTQI people. Once it does, the effects are felt all across HHS. Suddenly we’d be named in innumerable funding announcements as a population it’s important to address. Considering most funding announcements have a long history of being loudly silent about whether reviewers would even tolerate inclusion of LGBTQI tailored responses… getting named in those announcements as an important population would create a huge wave of change.

Third, it’s time to focus on building LGBTQI leadership in HHS. I suspect most of us have seen this play out in our lives; our own communities’ leadership is the largest driver of community advancements of any type. Obama and Sebelius’ are to be commended for their early decisions to appoint several openly LGB leaders of HHS agencies. Now it’s time to ensure every agency has high ranking LGB and as well as TQI leaders in place. There’s still decidedly chilly pockets at HHS for LGBT employees, and it’s time to build the leadership, acceptance, and talent pool so those employees can start creating change we can’t even dream of right now.

Those are a few things I personally think are important, but I’m just one trans guy and health affects every single one of us. CenterLink‘s Network for LGBT Health Equity is all about accessing the power of the broader LGBTQI communities. So what do you want them to do in the coming year? What’s the biggest thing blocking your own journey to being a healthier LGBTQI person? Speak up, sound off, I’ll print out the comments, tuck them in my backpack, and deliver them in person.

Follow Scout, Ph.D. on Twitter:

Action Alerts · LGBT Policy

ACTION ALERT: LAST DAY to give input to NIH on LGBTI health! (it’ll only take 5 min)

New Network Logo Symbol 3-2011
Action Alert! 
Send input to NIH- 
Last day! 
NIH – the agency that controls $40B in health research funds has launched an unprecedented call for input on LGBTI health priorities.

If you haven’t yet given input, today is the very last day to do so. And we know, the more of us they hear from, the more they realize this is an important priority to address. 

To make it easy for you, we’ve attached sample input (see below) … at the very least, we urge you to please submit the attached input from your organization — this is the equivalent of co-signing the input we’re putting in.

If you want to, feel free to customize it and submit!

This will only take 5 minutes max, simply:
1. go to this website,
2. put your name, organization, and skip the fields then
3. upload the input we’ve given you, or your own modified version of same.

Deadline – midnight tonight!
Here is the sample comments template: NIH Comments Template
Action Alerts · Funding

Network Funding Ending? Yes, But You Can Help It Continue.


Scout, Ph.D.
Director, The Fenway Institute’s Network for LGBT Health Equity

Yes it’s true, the 5 year CDC Office of Smoking and Health coooperative agreement we’ve been funded from will be ending in a few more weeks. But before anyone gets upset — remember we were a Network of people working together before there was paid staff, and in the event we no longer had that luxury, we’d simply move back to our old model. (staff schmaff!) But we hope we don’t even need to go there, because there’s another five year award for networks we’re applying for now!

The Network’s first priority now is getting refunded and you can help! Do you think the Network is valuable? Then please write a letter of support for this next proposal.  The staff will be happy to send you a sample, just email and ask.

This new award has some substantive changes — primary among them that the new networks will be for tobacco AND CANCER health disparities. Plus, built into that model are cancer prevention strategies, particularly eating well and exercising more. (*scratches head* Now who do we know who understands those cancer disparities?) The networks also seem to have a new emphasis on changing community based practices, that’ll be an interesting area of work. Plus there will be more disparity networks than before, up to ten, at least one new one for mental health (smart!) and possible a geographical one, and our old favorite -a wildcard network.

Old friends know we’ve actually had to compete under the wildcard category for the last two rounds of funding, which made our chances of winning it much slimmer. So odd, while there was a set-aside LGBT tobacco network for the first funding round (during the Clinton administration), it was removed for the next two (during the Bush administration), it beats me how that happened. Anyhow, nicely now science has led the day again and CDC is hoping one of the networks will specifically serve LGBT people. But there’s no guarantees!

There will also be a small funding gap between the two awards. Our current one will likely end somewhere in July, the new one, IF we get it, is expected to start in September. We might play a bit in August… but we’ve also got some backup plans so staff doesn’t wander off.

So, there’s some real changes afoot for the Network for LGBT Health Equity and it’ll be a bumpy Summer. But the staff and the Steering Committee are  optimistic there’ll be a stronger and broader Network come Fall!

Action Alerts · Conferences · Data · Research Studies

Reportout from NIH’s 1st LGBTI Listening Session


Scout, Ph.D.
Director, The Fenway Institute’s Network for LGBT Health Equity

Sometimes you have throwaway days, then sometimes you have really high impact ones, right? Well, today was about as high impact as it gets. Myself and others have been nudging NIH to open communications with LGBTI researchers for years and today I had the distinct pleasure of being in the room as they launched their first ever LGBTI research listening session. Considering the agency has about $30 billion dollars in research funds, and considering they are easily the leading health research institution in the world, I’d say anytime we get to talk LGBTI health with the top mgmt for an hour and a half is pretty useful. Understand, many LGBTI researchers never even get to speak to these folk once. We got to sit there and yak and yak about what our experiences as researchers and advocates leads us to prioritize. And we heard there were over a hundred more watching and sending in comments on the videocast.

The day held a few pleasant surprises too.

  1. First, NIH hired a new guy who’s in charge of getting more LGBTI staff on board, Albert Smith. Literally his business card reads “LGBTI Program Manager” at NIH. Pretty sweet eh? Since we know how internal champions really move issues, now’s the time for us to recruit great new folk to NIH. (see info about working there here)
  2. Second, NIH just added gender identity to their nondiscrimination protections, w00t!
  3. Third, NIH really showed their commitment to keeping the information flowing by announcing that they had just released an RFI, or Request For Information. This literally declares it open season for all of us to give our input on LGBTI health research from now til late October. See the RFI here.
NIH Deputy Director Lawrence Tabak, their new LGBTI Program Manager Arnold Smith, and Scout
NIH Deputy Director Lawrence Tabak, their new LGBTI Program Manager Albert! Smith, and Scout

Of course everyone there brought up excellent suggestions: invest in career development; collect data; designate LGBTI as a legal disparity population (or at least tell us where the bar’s set to achieve that designation); create an office of LGBTI health; fund more tobacco research; recruit reviewers educated in these topics; do more on Two Spirit, intersex, transgender people; look at intersectionality more; put out anal cancer guidelines, and on. If you weren’t one of the hundred plus watching online… they’ll put the full webcast up in a few days, and we’ll update this post with the link.

OK, time for all of us to sharpen our pens. Because in my mind it’s like if you don’t vote in an election, you lose the chance to grouse. When there’s this big and broad a call for us to say what is needed in LGBTI health, we all should speak up now or forever hold our peace, right?

In case people are looking for ideas to suggest, we’ll share our input – as soon as we think it up!

Action Alerts · Staff/Program Updates · Updates

Survey Time!

The Network for LGBT Health Equity
Do us a solid- fill out our feedback survey! 



What time is it?! SURVEY TIME!

Please take five minutes to fill out our annual feedback survey! It is anonymous, but at the end you will have the option to give us your contact info to be entered in a raffle to win some network goodies (see the video of our swag below!), to join our listservs and to update your contact information in our database.

Please take a few minutes to tell us about your experience with the Network over the past year, and help us continue to improve and expand!

Here is the link to the survey:

Action Alerts · Cultural Competency Trainings · LGBT Policy · social media

After Quite a Long Time: Federal Cultural Competency WIN!

by Scout, Ph.D.
Director, The Fenway Institute’s Network for LGBT Health Equity
with additional reporting from the esteemed Daniella Matthews-Trigg

Sometimes you really do have to wait for good things to happen. So if you didn’t catch the news earlier this week we wanted to start your weekend off by reporting on the progress of a few different action alerts we ran back in… can you believe it, 2010.

Back then the Office of Minority Health was asking for input on their Cultural and Linguistically Appropriate Services. We were happy to oblige and ran a few different action alerts urging people to write in with smart ideas on how to include LGBT people in the standards for the first time. See our action alerts below:

The National CLAS was originally published in 2000, and provides a framework for all health organizations to address diverse populations, and provide culturally and linguistically appropriate care. The standards aim to advance health equity, improve quality, and help eliminate healthcare disparities. Importantly, hospitals and healthcare groups really pay attention to these standards.


What we’re very happy to report is we now have culture! The enhanced National CLAS Standards have adopted an expanded definition of culture that now includes sexual orientation and gender identity. The implementation blueprint even urges trainings and data collection no less! Read more details in this great post from our friend Kellan on all the different changes here: New Health Services Standards Ensure Respect For LGBT Patients. Or poke around the new standards directly on the federal Think Cultural Health website.

Mostly, for all of you that wrote in back in 2010 that you wanted sexual orientation and gender identity to be included, we just wanted you to know, the long wait was worth it!