Dropping LGBT Survey Questions Sends 'Ominous Message'

Nancy A. Melville

May 11, 2017

Proposals by the Trump administration to remove questions on sexual orientation and gender identity from key health and disability surveys for older adults contradict widespread consensus on the critical need for such data in addressing the social and health needs of underserved citizens, critics say.

"We need sexual orientation and gender identity data collection so that we can better understand LGBT disparities and how they intersect with racial/ethnic and other disparities, and to develop effective interventions to reduce and eliminate disparities," say Sean Cahill, PhD, of health policy research at the Fenway Institute, and Harvey Makadon, MD, Beth Israel Deaconess Medical Center, Harvard Medical School, Boston, Massachusetts, in an article published online April 28 in LGBT Health.

"The recent moves by the ACL [Administration for Community Living] under the Trump–Pence Administration to remove [the questions] from a survey of older adults receiving safety net elder services and not to add questions, as planned, to a survey of people with disabilities send an ominous message," they write.

Data on sexual orientation and gender identity have only recently been included in surveys conducted at the national and state levels at the urging of supporters of the LGBT community.

The inclusion is seen as critical in light of evidence showing that many in the LBGT community not only experience significant health disparities and barriers to receiving appropriate care but are also disproportionately subject to hate violence.

According to media reports, an ACL spokesperson said the questions on sexual orientation and gender identification were being removed from the National Survey of Older Americans Act (OAA) because the inclusion in previous surveys, started in 2014, was only as a pilot test, and the response was found to be too small to have reliable significance.

Plans have also been scrapped to include a sexual orientation category and a transgender identity field to the Annual Program Performance Report for Centers for Independent Living, a US Department of Health and Human Services (HHS) survey determining services provided for the disabled.

The authors argue that the ACL's explanation is not valid for various reasons, including the fact that other surveys that inquire about sexual orientation and gender identity, including the Gallup Poll and state Behavioral Risk Factor Surveillance System surveys, show that older adults are less likely to report identifying as LGBT compared to middle-aged or younger respondents.

Furthermore, response rates to new additions to a survey are often lower and typically increase over time, and the responses of those who do provide answers can offer essential information, they say.

Kathy Greenlee, the HHS' assistant secretary for aging under President Barack Obama, who pushed to include the collection of data on LGBT people, disputed the suggestion that the removal of questions represented the end of a pilot trial.

"I view this as a policy change, not the end of a pilot," Greenlee said in an article in US News & World Report.

Surveys and studies that incorporate measures of sexual orientation and gender identity data increased to 12 in the Obama administration and include the National Health Interview Survey, the National Survey on Drug Use and Health (sexual orientation), the Health Center Patient Survey (sexual orientation and gender identity), and the Behavioral Risk Factor Surveillance System (sexual orientation and gender identity), Dr Cahill and Dr Makadon note.

In addition, the Institute of Medicine recommends the routine collection of data on sexual orientation and gender identity on electronic health records (EHRs) to better understand health disparities. The information is commonly collected in EHRs at academic medical centers around the nation.

The OAA survey pertains to participation in OAA-funded programs, which include senior centers, congregate meal programs, home care aide programs, and assisted-living facilities. The proposal to eliminate its collection of data on sexual orientation and gender identification is particularly alarming in light of the heightened vulnerability of older people to the lingering prejudice, the authors explain.

"Many older LGBT people experience prejudicial treatment from heterosexual age peers or from service providers or fear they will experience such treatment based on past experiences of discrimination," they note. "As a result, LGBT older adults may be less likely to access senior services."

Another concern regarding the removal of the sexual orientation questions is the potential to influence similar decisions in other surveys, Dr Cahill told Medscape Medical News.

"As we said in the article, there are important scientific reasons to collect these data to ensure that all Americans are able to access essential elder services on an equal basis," he said.

"It's a chicken-and-egg phenomenon ― if we don't collect data on sexual orientation and gender identity, we don't know what is going on with LGBT elders in elder services," he added.

"We don't think this should be a political or partisan issue. It's an issue of ensuring all older adults can age in place and have the supports they need to thrive in older adulthood."

Daniel D. Sewell, MD, a professor of clinical psychiatry specializing in geriatric psychiatry at the University of California, San Diego, School of Medicine, agreed that the exclusion of the questions on sexual orientation and gender identification in older people in the survey is troubling.

"Including questions about sexual orientation and gender identification in public health surveys of all adults, including older adults, is absolutely critical," he told Medscape Medical News.

The exclusion of such questions could be compared to a survey failing to include information about race or ethnicity, he said.

"A survey constructed in this way would be unable to reveal the potential impact that race or ethnicity might have on any number of important questions, like how race or ethnicity may impact the risk of developing a particular health problem."

An example of how such information can have important health implications is the fact that older lesbian and bisexual women have higher rates of cardiovascular risk factors, including obesity, than the general population of older women, Dr Sewell noted.

"This is especially worrisome, given the scientific evidence which correlates poor vascular health with increased risks of certain specific types of dementia, including Alzheimer's and vascular dementia."

Dr Sewell provided additional examples of important social factors and physical illnesses known to be overrepresented in the LGBT community, including the following:

  • Older gay or bisexual men are more likely to live alone and experience poor physical health, including infection with HIV, than the general population of older men.

  • Gay, bisexual, and transgender cancer survivors have been found to have higher rates of depression and relationship difficulties compared to heterosexual men.

  • Older lesbian women appear to have more risk factors for breast cancer than their heterosexual counterparts, including fewer pregnancies, fewer total breastfeeding months, and higher body mass indices.

  • HIV-infected individuals are 28 times more likely than HIV-seronegative individuals to develop anal cancer.

  • Older transgender adults are more likely to experience poor physical health, disability, obesity, and mental distress than their lesbian, gay, and bisexual peers.

  • Transgender adults face the greatest financial and emotional barriers to seeking healthcare among the older LGBT population.

Regarding the ACL's reason for excluding the questions from the survey because of a low response rate, Dr Sewell agreed with the authors' counterargument that "some data are better than no data at all. Efforts to improve the number of respondents will hinge on the information that we are able to obtain from those who do respond."

Important generational differences are helping to turn the tide, he added.

"Many of the oldest old may be too frightened to respond to questions about sexual minority status, but mid-old and young-old adults may not be as frightened, and so over time, we expect response rates to increase."

The authors and Dr Sewell have disclosed no relevant financial relationships.

LGBT Health. Published online April 28, 2017. Full text


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