HHS LGBT Listening Session Report Out From Cancer Network

Liz Margolies

By: Liz Margolies, L.C.S.W.

Most of the time I have to force people to listen to my opinions on what would fix the cancer health disparities in the LGBT community. So, imagine my delight in being invited to speak my mind to high up officials at The Department of Health and Human Services in Washington DC.  It was worth rising early and dressing nicely, two things I usually grouse about.  I prepared remarks that would best represent the values of CenterLink’s Network for LGBT Health Equity and the National LGBT Cancer Network.

In addition to HHS Secretary, Kathleen Sebelius, the head of the table also held Cathy Greenlee, Ken Choe and Howard Koh, the co-chairs of the LGBT Coordinating Commitee at HHS.  Around the other three sides were representatives of about 20 LGBT health organizations, including GLAMA’s Hector Vargas, HRC’s Shane Snowdon, Fenway’s Sean Cahill and, of course, Scout.  We listened attentively to the Secretary’s report of LGBT accomplishments and wishes, and then we went around the room and said what mattered to us and the people our organizations serve.

I said, “My organization addresses LGBT health disparities across the Cancer continuum, but today I want to focus on survivorship.  We conducted a national survey of LGBT cancer survivors and the level of discrimination they reported in their cancer treatment was shocking and disturbing. Some changed doctors, but many could not, either because their health insurance didn’t allow it or because there were no other treatment options where they lived.  Some people went back into the closet during treatment, fearing that discrimination could compromise their treatment from a life threatening illness.  Some transgender people were denied their hormones while they were in the hospital.  This is terrible because we know for sure  that one’s experience of healthcare has a profound impact on recovery and health.

We need research on LGBT cancer and it needs to be funded by PCORI and NCI.  My quick search found only 13 funded studies!  And another mere 25 studies on tobacco, even as we know that tobacco is the largest preventable cause of cancer!

And one more request: while research shows that LGBT people use tobacco at rates that are 68% higher than the national average, without including gender identity and sexual orientation in the SEER data, we can’t say with certainty that we have even one more case of lung cancer in LGBT people.”

I sat back in my chair. And gave the floor to Scout.



LGBT Policy · Presentations

Importance of Advocacy for Implementation of Trans Inclusion in Federal Health Policies

by Emilia Dunham

Reporting from the Transgender Health Summit in San Francisco

I’m having the incredible privilege of attending the Center for Excellence for Transgender Health’s first national Transgender Health Summit. The opening remarks this morning were from Herb Schultz, MPP, Regional Director at the DHHS Region IX who spoke about trans inclusion at the federal level.

Some of the major themes he discussed were inclusion, implementation and bringing advocacy to the local, state and federal level and how we can assist government to make changes that affect our community.

He discussed his personal story, and how 20 years ago, he become involved in HIV prevention. Later became involved in LA AIDS Project, and after a meeting with trans advocates, he realized there were so few protections and services for trans people. He’s inspired by trans communities and the progress we’ve made in such a short time, despite our opposition.

Despite the struggles to enact and implement trans inclusive policies, recent advocacy to the federal level is getting inclusion.

Herb Schultz, MPP, Regional Director at the DHHS Region IX

There is a place in the government to advocate for trans inclusion in government, which we’ve seen from the recent IOM report and report from HHS of non-discrimination concerning gender identity. The changes made were because trans communities went to Kathleen Sebelius; people like us, who have advocated for trans inclusion.

In the future, what we need to consider future advocacy and implementation. For instance implementation of the Health Care Reform Act is vitally important for trans communities. There are consumer protections, there are groundbreaking changes in our health services, but when you look at where our government is, there are many people on local, state and federal government who are against HCR and trans programs. For that reason, we should prepare to defend these programs.

Governments have never included communities like ours to get our input, so it’s SO important we continue advocating!


Is This The Biggest 48 Hours Ever for LGBT Health? Part 2: HHS Recommendations to Improve the Health of LGBT Communities

by Emilia Dunham

Program Associate

This has been such a huge week for LGBT health as you probably know!

Some tremendous news that came from today, the last day of LGBT Health Awareness week, was the release of the U.S. Department of Health and Human Services’ recommendations: “Actions to Improve the Health and Well-Being of Lesbian, Gay, Bisexual, and Transgender Communities.”

These recommendations are a summary of the efforts taken by the U.S. Department of Health and Human Services (HHS) to improve the lives of lesbian, gay, bisexual and transgender (LGBT) people, as well as recommendations for future action. The recommendations were developed in response to the Presidential Memorandum on Hospital Visitation, which, in addition to addressing the rights of patients to designate visitors regardless of sexual orientation or gender identity, directed the Secretary to explore additional steps HHS could take to improve the lives of LGBT people.

These recommendations come after the recognition we are all aware of that LGBT people have been denied the compassionate services they deserve. That is now changing. HHS continues to make significant progress toward protecting the rights of every American to access quality care, recognizing that diverse populations have distinctive needs. Safeguarding the health and well-being of all Americans requires a commitment to treating all people with respect while being sensitive to their differences.

Check out the link for amazing recommendations of HHS: http://www.hhs.gov/secretary/about/LGBThealth.html

These actions address a number of health disparities affecting our community including the expansion of their Equal Employment Opportunity Policy, Non-discrimination Policy, Hospital Visitation rights, as well committees established to identify and remedy gaps in LGBT health, data collection programs and policies. These actions also specifically target key areas of disparities including HIV/AIDS, tobacco prevalence, bullying, adoption, aging and homelessness to name a few. We may be including in more grant opportunities and all grantees of HHS could have LGBT cultural competency in the future! With the follow-through of these recommendations, unprecedented in the history of LGBT health, our community’s health, wellbeing and livelihood will be dramatically changed for the better.

This is just the tip of the iceberg so we urge you to check out these recommendations to see how these can affect you, your families, your programs and our communities.

Tobacco Policy

HHS Tobacco Strategic Plan Launch: Eyewitness Account & LGBT Inclusion Details

by Scout
Director of National LGBT Tobacco Control Network
1st ever HHS Tobacco Plan!
Reporting from George Washington University Auditorium Launch of the HHS Tobacco Strategic Plan

Houston We Have An Easy-to-Read Liftoff

As your intrepid guy about town, I zipped down to DC to attend the live launch of the first-ever HHS Tobacco Control Strategic Plan. If memories of Healthy People 2010 are leaving you waiting for the shorter movie version of the plan, let me tell you the first piece of important news – this plan is only 21 pages long! So, read away dear ones!

The Launch Party

I get to DC and sure enough, it’s a gathering of the glitterati of the tobacco control world (which of course meant I didn’t know half the folk)… there’s the head of ALA, TFK, ACS, OSH*, BLDDT, CHRK, and ZLWY. (ok, maybe I made a few of those up). And there’s big TV cameras everywhere, like maybe there’s a new all-tobacco-all-the-time set of news channels? Arrayed in the front of the room are posters of all the new tobacco warning ads FDA just announced they are considering. Plus lo, I see the head of another tobacco disparity network, Jeannette Noltenius (the Latino network). We of course bond together, because we are nearly invincible as a team. With a nod to dear ally Rosie Hinson from HHS Assistant Secretary Koh’s office (she was the one who helped make sure there were enough LGBT references in the plan before launch) I sat down and hushed up ready for the show.

Many folk were obviously listening to the actual launch via webcast… so let me just hit a few points that stuck out for me in the launch comments.

HHS Secretary Sebelius explained how tobacco is a big focus for HHS and health care reform, she mentioned the 3 bigger initiatives they’ve taken till now.

The gathered media waiting for the launch party

Big 3 Govt Tobacco Initiatives Before This Plan

  1. Passing FDA oversight of nicotine, which will especially change the warning labels. (finally!)
  2. Investing about $250M in new tobaccoprograms (presumable through Communities Putting Prevention to Work (CPPW) and REACH awards, neither had much LGBT inclusion).
  3. Healthcare reform invests $15B (over years) in new prevention healthcare fund. (This money is expected to take the best practices from 2. and replicate them to other areas.)

Shocking Facts Rattled Off

  • Tobacco costs this country $193B a year in health care and lost productivity costs! ($96B in healthcare costs alone)
  • Tobacco estimated to take 1 billion lives worldwide this century.
  • 1,000 people each day become daily smokers.

    Assist. Secty. Koh rattling off shocking facts, but what is Secty. Sebelius doing?
  • 8 million people in US have chronic diseases stemming from tobacco.
  • Every 10% increase in cigarette costs decreases local smoking rates by 4%. (<- that’s why policy changes are SO hot right now)
  • US Tobacco industry spends $12.5 billion dollars a year in marketing, or $34M a day!

4 Pillars of New Tobacco Plan

  1. Change social norms (including big media campaign to counter last point above)
  2. Improve health (supporting states and communities to continue work like was launched with CPPW awards, or supporting quitlines).
  3. HHS leading by example (such as increasing cessation coverage through medicare and medicaid, both planned rollouts)
  4. Advancing knowledge (like more data collection on priority populations and more research on best practices)

The Goal

According to Assistant Secty Koh, “The goal is to make it as easy to quit a it is to buy a pack of cigarettes.” And of course… they also talked about the other goal of making sure young folk don’t start.

New FDA Tobacco Warnings

So Miguel, the videocam fits in your pocket but the mic needs its own suitcase?

Not sure if lesbians gained control of Congress while I wasn’t looking but in what seems to government by consensus, the FDA has rolled out 36 potential new warning labels for cigarette packages and are taking comments on them until Spring. Then they will pick 9 that will be required to cover the top 50% of front and back of each cigarette pack and top 20% of every tobacco industry advertisement by Sept 2011. Like the FDA Commissioner said… “this essentially makes each pack of cigarettes into a mini billboard for tobacco control.” It’s an interesting note that while the ads are sometimes graphic… it’s not necessarily because they feel adults need to learn the dangers (research has shown most adults know the dangers well), but because they feel it’ll be a deterrent to youth to see (or carry around) something so terribly yucky looking. Interesting. Linda Bailey from North American Quitline Consortium later asked, “why don’t any of the warnings include the national quitline 1-800-QUITNOW?” Good point Linda, maybe folk can suggest that in the comment period.

Open Comments and Other Bloggers

In the comment section Jeanette and I duly stood up and mentioned something about disparity populations. I believe I mostly thanked them then asked another question about elementary school programs (which showed how many were watching online because folk started to email me resources right after I spoke) and Jeannette asked about the importance of racial and ethnic minority community-based work. But then afterwards I hooked up with old buddy Miguel Gomez from Office on HIV/AIDS (who was sporting the biggest microphone I’ve ever seen attached to his flip camera). He runs AIDS.gov and seems they are doing buckets of social media interviews and podcasting for blog.AIDS.gov, so when he finishes editing them up, I’ll be sure to link them here. And later, we’re hoping they teach us some tricks to get our Youtube channel really rolling. (until then thanks for reading the old school print version!) But I know you’re all waiting for the real news, so let me get right to…

LGBT Inclusion in Tobacco Plan

  • P. 12 CHALLENGES: THE BURDEN OF TOBACCO USE AND BARRIERS TO PROGRESS. “Members of certain racial/ethnic minority groups, individuals of low socio-economic status (SES),pregnant women, and other groups carry a disproportionate burden of risk for tobacco use and tobacco-related illness and death… [last sentence of para] Available evidence also reports very high smoking rates among lesbian, gay, bisexual and transgender populations;however these populations remain underrepresented in current surveillance systems used to monitor tobacco use.”
  • p. 23 STRATEGIC ACTIONS: 4. Advance Knowledge. [bullet 3] “Expand research and surveillance related to high-risk populations (e.g. American Indians/Alaskan Natives and other minority racial/ethnic groups; lesibn, gay, bisexual, and transgender populations; individuals with mental disorders; those of low socio-economic status) to identify effective approaches to prevention and cessation.”
  • P. 24 STRATEGIC ACTIONS: 4. Advance Knowledge. [bullet 4] Expand research andsurveillance that promote the effectiveness of both population- and individual-based cessation interventions and tobacco dependence treatments. [Descriptive subtext] … “In addition there is a need for more evidence of effective cessation interventions for populations such as youth; young adults; pregnant women; low-income smokers; racial/ethnic minorities; lesbian, gay, bisexual and transgender smokers; light or intermittent smokers; and those with comorbidities (particularly mental health and substance abuse disorders).”

That’s all I’ve got for now folk, hope you enjoyed the eyewitness account of the launch!



* ALA = American Lung Association
TFK = Campaign for Tobacco Free Kids
OSH = CDC Office on Smoking and Health
ACS = American Cancer Society
Action Alerts

Action Alert- Attn Orgs! Sign on to Create an Office of LGBT Health

Action Alert from the National Coalition for LGBT Health

The federal Department of Health and Human Services (HHS) is considering creating a dedicated Office of LGBT Health. This would be an incredible affirmation of the importance of LGBT health and would help keep LGBT health concerns high on the list of priorities for attention, funding, and programming.

HHS is expected to make this decision before Thanksgiving. Due to the tight timeline, we are asking groups and organizations to sign on to the letter below by not later than 1 PM EST tomorrow (Friday, 11/20).

If your group or organization would like to sign on, please email Kellan Baker Policy Associate at the National Coalition for LGBT Health. Please do not hesitate to contact Kellan with any questions.

Please join us in supporting an Office of LGBT Health and a healthier future for the LGBT community!

November 19, 2009

The Honorable Kathleen Sebelius
Secretary for Health
Department of Health and Human Services
Washington, D.C. 20201

Dear Secretary Sebelius,

The undersigned organizations are writing to you in support of the creation of an Office of LGBT Health to address the health disparities facing the lesbian, gay, bisexual, and transgender (LGBT) community. An Office of LGBT Health at the highest level of the Department of Health and Human Services (HHS) is critical to creating a lasting infrastructure that will allow for a focus the health concerns of the LGBT community. This office would take the lead in coordinating a consistent, scientifically driven, and substantive response across HHS to LGBT health disparities.

For LGBT people, systemic discrimination based on sexual orientation and gender identity and expression has led to decades of obstructed access to health care and has significant negative impacts on the overall health of LGBT individuals. LGBT people suffer disproportionately from the adverse health effects of stigma, stress, and violence, further compounded by the barriers that prevent them from accessing vital health care services even for routine care: research has consistently shown that being LGBT substantially impacts whether or not a person receives care and, when they do receive care, whether that care effectively speaks to all aspects of their lives. Moreover, many members of the LGBT community are members of other communities that also face substantial health disparities and are thus vulnerable to cumulative negative outcomes. For example, an African-American gay man faces disparities common to the African-American community as well as those suffered by the LGBT community, and a transsexual Spanish-speaking woman, regardless of her sexual orientation, must navigate multiple instances of discrimination based on language, ethnicity, and gender.

These health and health care disparities are now recognized by numerous divisions of HHS, including the Substance Abuse and Mental Health Services Administration (SAMHSA), the Health Resources and Services Administration (HRSA), the Centers For Disease Control and Prevention (CDC), and the National Institutes of Health (NIH). The HHS Secretary’s Advisory Committee on Healthy People 2020 has also acknowledged the imperative to address the disparities in health status and health care access that impact the LGBT community. An autonomous Office of LGBT Health within HHS is a key step in coordinating and streamlining the agency’s efforts to address LGBT health disparities and would be a laudable demonstration of the agency’s commitment to the health and well-being of the LGBT community.

We look forward to your reply. If you need any additional information, please do not hesitate to contact Rebecca Fox at the National Coalition for LGBT Health at (202) 436-0228 or Rebecca@lgbthealth.net.


CC: Assistant Secretary Howard Koh