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CDC Releases Historic Disparities Report: News on LGBT Health? No Data.

Scout
Director, Network for LGBT Health Equity

CDC Releases First of New Reports on Health Disparities

I have to confess, back in college when I worked at a health library, there was one publication that I would regularly mock, the Morbidity and Mortality Weekly Report. Yup, nothing seemed to quite encapsulate “scintillating” as much as that title. Sigh, which is why I guess it’s now my lot to actually list that as one of my most used resources in my adult life. Can’t even remember what was funny about it now because it’s just the highly esteemed MMWR in my mind, source of all of CDC’s breaking news and information on population health trends of every stripe. Well almost every stripe.

So, Friday CDC used the MMWR to release the first in a regular series of reports on health disparities. We had a heads up midyear this report might exclude LGBT folk altogether, so we did a little work a ways back to confirm that it would not make that big omission, and Friday we were happy to see that yes, LGBT people were in the report. But, the news is … barely.

LGBT Inclusion?

First flip was to the chapter on tobacco. Now we know that CDC included an LGBT measure on their recent National Tobacco Survey, but unsure if these data could make it into this report. And the verdict is? The chapter notes increased LGBT tobacco prevalence (great!), but “Although multiple tobacco-related disparities exist, this report highlights only racial/ethnic and socioeconomic disparities because of limited data for other demographic groups.” Sigh, ok.

What about the chapter on suicide? Sadly news just came across my desk earlier this morning about yet another gay youth who allegedly committed suicide after experiencing bullying at school. So what does CDC say about LGBT suicide rates? That they are nearing epidemic proportions? Not exactly. Eighth paragraph or so of that chapter includes this line: “Because the variables included in U.S. mortality data are limited, the results cannot be used to determine potential factors related to such disparities as mental or physical disability, sexual orientation, or income.”

In desperation, I flip to the chapter on HIV, sure enough there I can at least find some data for MSM (Men who have Sex with Men) health disparities. But even then, I scratch my head, has the flaw of categorizing transgender women as men been fixed yet? Despite shockingly high rates of infection reported by some transgender needs assessments, this information remains hidden with the current HIV reporting methods.

No LGBT Data Now But CDC Calls For Change!

Well, many of us already know one of the biggest problems with federal health systems is they don’t collect any LGBT data, therefor unwittingly hiding all our health disparities. So the gaps in this report are distressing, but aren’t really news. So, does CDC address this at all? I’m happy to say yes they do. In the introductory Rationale For Regular Reporting on Health Disparities and Inequalities chapter their longest paragraph is titled Gaps in Data Regarding Sexual Orientation. The paragraph reviews how Health People 2010 highlighted population disparities by measures including sexual orientation (Healthy People 2020 includes gender identity in this lineup) but briefly reviews how this goal wasn’t matched with supporting data collection. They review the few federal surveys that have any data at all and strongly conclude:

“To fill this notable data gap, national and state surveys should begin consistently and routinely measuring sexual identity, orientation, and behavior. Data collection should be expanded to include not only age, sex, education, income, and race/ethnicity, but also disability, geographic location, and sexual identity or sexual orientation. Only then can health disparities be measured thoroughly and accurately nationwide.”

Excellent! Hear hear! How wonderful that CDC is calling for an end to this data desert that is holding back so much work on LGBT health disparities! (And let’s hope the gender identity inclusion gets carried over from HP2020 as well.)

Change Starts At Home: CDC Funds Major Data Collection

CDC controls many of the pursestrings for major health data collection systems. Looking at Grants.gov I see that as we speak states are finalizing their proposals to CDC for $45M they are offering for state health data collection through the BRFSS (Behavioral Risk Factor Surveillance System), I know CDC puts out even more for the youth version of that survey, the Youth Risk Behavior Survey. But right now, $0 of that $45 million goes to LGBT data collection. (though some states take the initiative to add it themselves) While it’s hard to see how invisible we are in the newly released health disparity report, perhaps the call for data can shepherd in a new era. But until we see tested LGBT measures on every major health survey I hope we keep reminding policymakers at every opportunity: stop allowing LGBT health disparities to be hidden.

See Full Disparities Report here.

Also let me give a big shout out of thanks to all the LGBT community members and allies at CDC that helped shine this spotlight on LGBT data gaps and health issues.

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January 18, 2011 Posted by | Uncategorized | , , , , | 3 Comments

LGBT Surveillance: Next Steps for the Federal Government Summary

On Monday, November 22nd, we held a BrownBag Webinar called “LGBT Surveillance: Next Steps for the Federal Government.” The call focused on a discussion on federal opportunities for LGBT data to be considered for inclusion in national surveillance (surveys).

The crux of the conversation’s goal was to gather Lessons Learned from stories that callers shared on gathering LGBT data on the state level. In our highest attended BrownBag, participants shared their strategies for LGBT inclusion as well as barriers that have come up in that process. Scout introduced the call by requesting stories on state LGBT data implementation that can be used to help the federal government in whether/how they would include LGBT data questions on national surveys.

Among the reasons LGBT data has been left off national surveys, several myths circulate on why exclusion continues. For instance, surveyors fear higher refusal rates, break-off rates and confusion from respondents taking these surveys.

Current National Surveillance Efforts:

o       Despite failed efforts to include GLBT questions on the national Census, researchers are studying same-sex partner data gathered from the survey.

o       DHHS is including LGBT health measures on their major health survey (National Health Institute Survey : NHIS) but that is still within the works.

o       The National Adult Tobacco Survey includes multiple questions on LGBT as a singular question.

o       CDC sponsored survey on LGBT data in the United States in “Sexual behavior and selected health measures: Men and women 15–44 years of age

o       A group of researchers and advocates are working on a document for how gender identity questions can be added to national surveys (i.e. education, health.)

State Experiences

  • New York: City Health Department in NYC had a strong experience with adding sexual orientation and gender identity

o       Unexpected positive outcome: Mainstream scientists are excited about looking at LGBT data because they care about health disparities showing that LGBT data collection is not just a minority issue.

o       Positive Outcome: Multiple surveys point to LGBT data

  • California: California Health Interview Survey (CHIS) has included sexual orientation (not gender identity)

o       Barrier and Solution: When respondents are confused, the protocol is to reinforce the need for complete understanding of demographics/disparate populations and that no one is forced to answer the question.

  • Illinois – YRBS – does not include LGB, but Chicago does include a question asking folks “Which best describes you ‘gay’, ‘bisexual’, ‘lesbian’, ‘not sure”
  • New Mexico – NM has made a lot of progress in adding LGBT measure

o       Strides: “Sexual orientation” was added to both the Adult Tobacco Survey (ATS) in 2003 and the Behavioral Risk Factor Surveillance System (BRFS) in 2005.  Since 2009, both surveys added a question including “transgender”.

o       Barriers and Solutions:

  • A few participants questioned why LGB was asked, but confusion why that was added was explained.
  • In early years, there was confusion from 65+ year old individuals about LGB questions, so NM limited how many seniors received that question as many responded with “I don’t know.”
  • Lack of youth data is a major gap that needs to be filled. Since 2005, advocates and researchers have been proposing that “sexual attraction” to be added to the Youth Risk Behavior Surveillance System (YRBS) as no LGBT questions are currently asked on this major survey for youth.

o       Positive Outcome: NM APHA data paper from 2003-2009 showed refusal rates of sexual orientation question in BRFSS to only be .8- 1.8% which compares with refusal rates for other categories like 4.1-4.5% on household income.

  • Ohio – Led focus LGBT focus groups with reports on what was asked as well as transcripts for the groups. Another report is here.

o       Barrier: There weren’t enough respondents

Resources on LGBT data collection and best practices

Next Steps:

  • Please send emails or comment here with experiences of “Lessons Learned” at lgbttobacco@gmail.com.
  • We are looking for folks who have information on who has adult tobacco, YRBS, BRFFS, Quitlines
  • Another call continuing discussion will be announced.
  • A separate call on program data may be useful for folks who are looking for assistance on including LGBT data themselves.

November 29, 2010 Posted by | Presentations, social media, Uncategorized | , , | Leave a comment

   

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