LGBT Health: a case study of politics and data collection

1. LGBT Health: a case study of politics and data collection APHA Conference November 6, 2006 Boston, MA Scout, Ph.D.

2. Abstract The gold standard for population-based data collection is the federal surveys used to establish morbidity and mortality benchmarks for different population groups. But these surveys often do not collect data on lesbian, gay, bisexual and transgender (LGBT) behavior or identity. Despite this, researchers have used a series of smaller-scale surveys or proxy markers in larger surveys to uncover a consistent pattern of adverse health outcomes for this population group. This presentation will explore the persistent and deleterious effects of politics on the efforts to add LGBT data collection questions to the gold-standard federal surveys. A variety of information will be presented, including related political opposition occurring in the federal health arena, state success efforts at adding LGBT data collection questions, and the newest data emerging from California debunking the myth that asking if someone is LGBT constitutes a sensitive question (and therefore needs special extra expense management in the survey process). The case of the CDC's efforts to add an LGBT data collection question to their Adult Tobacco Survey will be presented to highlight the political opposition to this effort – despite the depth of sound science supporting the need for data collection on this issue. The impact of this political opposition will be discussed, and used as a platform to show how small population groups are especially vulnerable to population-based assessment of health needs. Learning Objectives: • List instances in recent past when politics influenced data collection related to LGBT health. • Analyze the impact of supressed data collection on LGBT health knowledge and interventions. • Articulate how small populations are particularly vulnerable when using population-based approaches to identifying health disparities.

3. Story not study • This is a rarely discussed territory • There is no citable “evidence” of much of what is presented here • All gov’t officials were guaranteed anonymity • Gov’t processes are not transparent, full information on some events will likely never be known • It is necessarily anecdotal • Many things deliberately not disclosed here

4. One investigators story

5. 2000 • Historic that sexual orientation (SO) was included in draft version of Healthy People 2010 • Then excluded • Community advocates • Final inclusion

6. 2000 Sexual orientation DNC, DNC, DNC “DNC = data are not collected”

7. 2000-1 – Climate change • HRSA commission of HP2010 companion document on LGBT • First plan = government document, like others • Post election plan = private document

8. 2001 – Climate change • HRSA disbands LGBT liaison office • SAMHSA puts out LGBT health book, later LGBT information taken off their website

9. 2001 HHS LGBT Strategic Plan • 300-400 page document, over ½ yr work by many • Cross agency • Listing all current activities • Made recommendations, including formation of office on LGBT health

10. 2001 HHS LGBT Strategic Plan • 300-400 page document, over ½ yr work by many • Cross agency • Listing all current activities • Made recommendations, including formation of office on LGBT health Disappeared

11. 2002+ • Researchers warned to avoid “gay or lesbian” in proposals • “for a while they scrutinized contracts, we couldn’t use gay or lesbian, we had to find other words”

12. 2002 LGBT data catch-22 • At National Conference on Tobacco or Health, a federal official involved in HP2010 warns; LGBT facing expulsion due to lack of data • There is consistent evidence of health disparities • But the SO question is not asked on key federal health surveys

13. Objections to SO data collection • It’s a question about sex, we need to handle those in very special ways • It costs over $1 million to add a question to main survey, NHIS. • Why do we need to? Where is the evidence?

14. 2003 “Witchhunts” • Coalition for traditional family values creates list of “suspect” HHS research • Including many projects on LGBT health • Thru allied Congresspeople, they get projects investigated + press • Waxman + head of NIH stands by need to let science drive research

15. 2003 CDC “expert panel” on LGBT surveillance • Convened to get best strategies for addition of LGBT questions to Adult Tobacco Survey (ATS)

16. 2004 CDC tries to test best questions • Why need best question? NHANES • Planned cognitive testing to determine best SO and gender identity (GI) questions to add to ATS • Testing yanked mere weeks before occurring – could not get approval. • Note – history complicated, may not have been political, but never transparent

17. 2005 Request to Edit Title of Talk On Gays, Suicide Stirs Ire HHS Is Being Accused of Marginalization By Rick Weiss Washington Post Staff Writer Wednesday, February 16, 2005; Page A17 A federal agency's efforts to remove the words "gay," "lesbian," "bisexual" and "transgender" from the program of a federally funded conference on suicide prevention have inspired scores of experts in mental health to flood the agency with angry e-mails.

18. 2005 CDC relaunches testing of survey question • But ATS has already launched, with a “best thinking” SO question • Report still coming from this work

19. 2006 – CDC refunds tobacco networks [Federal Register: June 2, 2000 (Volume 65, Number 107)] [Notices] [Page 35348-35353] From the Federal Register Online via GPO Access [wais.access.gpo.gov] [DOCID:fr02jn00-70] ----------------------------------------------------------------------- DEPARTMENT OF HEALTH AND HUMAN SERVICES Center for Disease Control and Prevention [Program Announcement 00086] Cooperative Agreements for National Networks for Tobacco Prevention and Control; Notice of Availability of Funds A. Purpose The Centers for Disease Control and Prevention (CDC) announces the availability of funds for fiscal year (FY) 2000 for cooperative agreements with organizations that can work with the following eight (8) priority populations: 1. African-Americans (AAs); 2. Hispanics/ Latinos (H/L); 3. Asian Americans/Pacific Islanders (AAPIs); 4. American Indians/Alaskan Natives (AI/AN); 5. women; 6. gays/lesbians; 7. low socioeconomic status (SES) adults; and, 8. young people

20. 2006 – with a change [Billing Code: 4163-18-P DEPARTMENT OF HEALTH AND HUMAN SERVICES Centers for Disease Control and Prevention National Network for Tobacco Control and Prevention Announcement Type: New Funding Opportunity Number: DP06-602 Catalog of Federal Domestic Assistance Number: 93.283 Letter of Intent Deadline (LOI): January 19, 2006 Application Deadline: February 3, 2006 • Funding Opportunity Description The purpose of the program is to prevent and reduce tobacco use and exposure to secondhand smoke and to eliminate tobacco-related disparities by establishing a consortium of National Networks that can collaborate with and serve as a resource to CDC and OSH, Network members, Network Partners, States, and other local and national tobacco control organizations to provide culturally competent technical assistance regarding effective tobacco use prevention and control strategies for racial and ethnic populations, groups that demonstrate low socio-economic status, and groups for which there is data to support a high prevalence of tobacco use and/or burden of tobacco related morbidity/mortality.

21. “Group for which there is data to support…” • 2001 – CA Health Interview Survey (CHIS), lesbians smoked at rates 75% higher than other women, gays 56% higher • 2003 – CA LGBT Tobacco Survey, LGBT men almost 50% higher; LGBT women, almost 200% higher • Across all studies, in all places, it’s consistent, LGBTs smoke ~40-200% higher than others.

22. Proud to say • In 2006, CDC funded National LGBT Tobacco Control Network* • I am the Network Director • For more information, please see our website, www.lgbthealth.org * A project of Fenway Community Health, Boston, MA

23. 2006 – Where are we now? • At least 2 states in their Adult Tobacco Survey • At least 8 states in their Behavioral Risk Factor Social Survey (BRFSS) • At least 12 states in their Youth Risk Behavioral Surveys (YRBS) • NHANES • National Survey of Family Growth • More at www.gaydata.org

24. 2006 – Current promise? Researchers believe aggregating data from the state surveys into larger sample might be most promising route to achieving large sample.

25. Impact? • Hostile climate demoralizes advocates and researchers • Dissuades next generation researchers • Scares away needed non-LGBT champions

26. Impact? “…lots of demoralization and good people leaving”

27. Impact? • Catch 22 leaves LGBT at risk for policy exclusion, funding exclusion • Less known about magnitude of LGBT health disparities • Needed LGBT health disparity areas (e.g. tobacco) addressed too slowly • Can we justify being in HP2020?

28. Who are the heroes? • The many scientists who have been tireless in advocating for science in the face of political opposition • The creative members of the federal government • LGBT scientists who have risked their careers to address these health disparities

29. Acknowledgements

30. Censored Acknowledgements