Cancer · Conferences · LGBT Policy · Presentations · Steering Committee · Summit · Tobacco Policy

HealthLink E-Summit: One Day Down, One to Go!

logoCorey Prachniak serves as Chair of LGBT HealthLink’s Steering Committee and is an attorney focused on health policy, as well as a current Zuckerman Fellow at Harvard University. Corey tweets @CPrachniak.


When the LGBT HealthLink Steering Committee decided to host an online “E-Summit” to bring together people interested in LGBT health, we didn’t know if it would work… Mostly because we made the idea up! But we wanted our committee and staff to be able to interact with the community we serve, and since we couldn’t fly everyone to HealthLink’s sunny home in Florida, we thought we’d give it a try.

Yesterday, we had over a hundred registrants for a full afternoon of sessions, featuring many members of our Steering Committee, HealthLink’s staff, and even special guest Jessica Hyde from the Texas Comprehensive Cancer Control Program. Over the course of the afternoon, we engaged in discussions on LGBT rights in healthcare, the disproportionate burden of cancer in LGBT communities, and the way that LGBT-based disparities interplay with disparities based on other aspects of people’s identities.

And it’s not over yet! Join us today (Friday) at 4:00pm Eastern for a fabulous presentation on LGBT tobacco disparities by no fewer than four members of our stellar Steering Committee and HealthLink’s Policy Manager, Juan Carlos Vega. This session, “We’re a Movement, Not a Market!,” is open to the public and is going to be an amazing way to cap off Day 2 of our events. HealthLink started as a tobacco control group, and even as we’ve grown and diversified to take on an array of LGBT health disparities, fighting tobacco remains at the heart of our mission. I’m sure the passion for positive change in our community will come across loud and clear this afternoon.

So, a big thank you to all who joined us yesterday and who will join us today. And a particularly big thank you to Jenna Wintemberg, a member of our Steering Committee and the co-chair of this event, for her many hours of hard work in putting this together. (You can even hear from Jenna at today’s tobacco session and thank her yourself!)

Oh – and if the work we’re doing is your kinda thing, you may be interested to know that we’re preparing to launch a brand-new membership program in the near future. You can sign up to learn more here.

Cancer · Conferences · LGBT Policy · Presentations · Steering Committee · Summit · Tobacco Policy

Join Us for our LGBT Health E-Summit, October 15th and 16th


Corey Prachniak serves as Chair of LGBT HealthLink’s Steering Committee and is an attorney focused on health policy, as well as a current Zuckerman Fellow at Harvard University. Corey tweets @CPrachniak.

For the past few months, I have been working with our fabulous steering committee and staff to put together a two day virtual conference, or “E-Summit,” on LGBT health issues. I’m excited to invite you to join us this Thursday and Friday, the 15th and 16th of October. Once you have registered for the event, you’ll be able to jump onto the webinar during any of the sessions that interest you.

On Thursday 10/15, we will kick things off at 3:00pm Eastern Time with a session on LGBT rights in healthcare, followed by a session on LGBT cancer issues at 4:00pm Eastern and finally a session on intersectionality of identities and health disparities at 5:15pm Eastern. On Friday 10/16, we will finish up with a terrific session on tobacco use in LGBT communities at 4:00pm Eastern.

You can get all the details on these presentations by downloading the program, and you can register to participate here. All of these events are open to all.

By the way – if you like the work that HealthLink is doing, and want to be involved in events like this in the future, I have good news! We are in the process of launching a free membership program that will allow individuals interested in LGBT health to partner with us in exciting ways. You can sign up to learn more here.

I hope to “see” you this Thursday and Friday!

Cancer · LGBT cancer

Grant opportunity from the Colon Cancer Coalition/Get Your Rear in Gear

The Colon Cancer Coalition is looking for liked-minded partners in New York City and the surrounding area to receive one of multiple grants awarded from funds raised through Get Your Rear in Gear – New York City events. Grants will be given in amounts up to $25,000.

Applications are due Friday, February 27.

*Note: To receive funds, organizations are not required to be located in New York; however, grant money must be used on programs that will benefit individuals in New York City and surrounding community. Preference will be given to new or existing programs working toward the shared colorectal cancer screening goal of 80% by 2018.

Get creative.  We are looking for out-of-the-box thinking that will:

  • Have a real impact on colorectal cancer screening rates.
  • Target messages to populations at risk for young-onset colorectal cancer.
  • Reach those who have an increased genetic risk for the disease.

Successful applicants will be expected to:

  • Publicly acknowledge the grant.
  • Be an active participant in the 2015 Get Your Rear in Gear Run/Walk in New York City on Sunday, October 25, assisting the Colon Cancer Coalition in attracting additional participants and sponsors.
  • Submit a completed Grant Results Summary following the completion of the project or no later than 12 months after receiving the grant funds, whichever comes first. The grant recipient will need to include specific details on how the grant money was used and the results of the program or related statistics as available (screening rates and behavior changes, etc.)

For more info and to apply, visit:

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.

Cancer · Data · LGBT cancer

Reframing the conversation around cervical cancer and HPV

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.


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.




Cancer · LGBT cancer


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

The Human Papillomavirus (HPV) is the most common STI, and the cause of both lesions (warts) in the pelvic/ genital region, as well as the mouth. HPV has been found to be the cause of a variety of cancers. National Cancer Institute states that “high-risk HPVs cause virtually all cervical cancers. They also cause most anal cancers and some vaginal, vulvar, penile, and oropharyngeal cancers.”

The HPV vaccine was available for human use in 2006, and roll out campaigns aimed at youth have been the primary focus of the US public health service.  In the US, the CDC suggests the HPV vaccine be given to all children 11-12 years old, teenagers who have not yet been vaccinated, for women up to age of 26 and for men up to age 21.

So what is the current uptake of the vaccine in LGBT communities? A study found 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; 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. Rates for gay and bisexual men, and transgendered people are not available.

New research has shown that the HPV vaccine would be a good idea for adult gay and bisexual men, especially those living with HIV, which can increase the odds of cancer caused by HPV.  For gay and bisexual men, HPV “is estimated to be present in 65% of gay men without HIV and 95% of those who are HIV positive. A simple and inexpensive anal Pap test detects the virus but, unfortunately, few physicians are performing anal screening exams and offering anal pap smears to gay men, resulting in anal cancer rates as high as those of cervical cancer BEFORE the use of routine Pap smears in women.” Activists in the UK are calling on the NHS to offer the vaccine to gay and bisexual men, calling current policies homophobic. Bisexuals, both men and women, have generally worse outcomes of most illnesses, compared to gay men and lesbians, and there is some evidence this extends to cancer. In our communities transgender folks may be uncomfortable, or cannot find a trans affirmative provider, who can perform necessary screenings such as prostate and rectal exams for trans women and chest and pelvic exams for trans men, which can also lead to late diagnosis and more invasive treatments.

While there is limited to no information on HPV vaccination rates for gay and bisexual men, or transgender persons, we recommend everyone seeking out the HPV vaccine from their provider. We also need better community messaging campaigns that bring information on this health issue to our community. The recent meningitis scare in LA and NYC has prompted public health officials to react, but HPV-related cancer will not have the same timing or geographical density for people to conceive an outbreak; these cancers will occur individually, across time: we need a similar high-yield campaign for HPV vaccines for the LGBT community.

To find out more check out information provided by the HPV and Anal Cancer Foundation. They do amazing work, and have resources and information that is priceless.

Cancer · Survivor Support Groups · Take Care of That Body


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

For the past few months, The National LGBT Cancer Network has been contacting community centers around the country to join us adapting and promoting our two new online cancer programs aimed at the LGBT communities. Both “Take Care of That Body” and our online Support Groups for cancer survivors are available to LGBT community centers free of charge. We provide the programs, text to announce the programs for social media, newsletters and websites, as well as promotional postcards (images below). So far the DC Center for the LGBT Community, Hudson Pride Connections Center, The Lesbian, Gay, Bisexual, Transgender Community Center of Greater Cleveland, Harmony Cafe – Fox Valley, the Roanake Diversity Center, Oklahomans for Equality, the Richmond Gay Community Foundation and the Breast Cancer Coalition of Rochester have all begun promoting our programs.

Take Care of That Body” (TCTB) is an online program that is designed to educate the LGBT communities about our increased cancer risk factors and the importance of screening and early detection. The program allows users to create personalized cancer screening reports, learn about US Prevention Services Task Force-recommended cancer screenings, and offers referrals to LGBT-friendly free/low cost facilities. The risk assessment portion uses demographic, medical and behavioral questions to inform individuals what screening they may want to seek out from their healthcare providers. TCTB also has a place to sign up to receive electronic reminders, sent via text or email, to remind you to ask your doctor for or about these screenings. TCTB also has a small, but growing list of LGBT friendly cancer screening facilities. The National LGBT Cancer Network has selected these resources because of their commitment to offering safe, affordable, welcoming care to all LGBT people. Each facility has a Personal Contact who will guide you in setting up your appointments and assure your comfort and safety when you arrive. If you know of any centers that are near you that may qualify and are not yet on the list, please contact us to let us know, and we will reach out to them!



















The Support Groups are free online support forums to LGBT cancer survivors (internet access required to participate). Many LGBT survivors do not feel welcome or understood in mainstream support groups and transgender survivors have been especially excluded. There are very few in-person LGBT cancer support groups being offered across the country and those who live further from major metropolitan areas are very unlikely to find one at all. So, we decided to do something about it ourselves. We offer separate forums for interested participants: one forum for lesbian- and bisexual- identified women, a separate forum for gay- and bisexual- identified men, and a forum for transgender-identified people with cancer. The groups will operate in 12-week cycles, close for a 2 week break, then begin again. Each forum is moderated by a licensed clinical social worker and will be available to participants 24 hours per day, 7 days a week.










You can visit our programs on our website, and if you know anyone who you think would benefit please pass it on! As well, if you know of any organizations that may want to help us expand our programs around the country to local communities, feel free to make the introduction!