Advancing LGBT Health and Well-being: 2016 Report of the HHS LGBT Policy Coordinating Committee
Since 2010, the U.S. Department of Health and Human Services (HHS) has been committed to advancing the health and well-being of all lesbian, gay, bisexual, and transgender (LGBT)1 communities through significant and cross-departmental coordination. This sixth annual report of the HHS LGBT Policy Coordinating Committee (“Committee”) highlights some of the most noteworthy HHS accomplishments in this area over the past six years, as well as steps the Department will continue to take in addressing LGBT health disparities moving forward. There are many other initiatives that could not be included in this report, so we have included appendices highlighting the work of HHS divisions and agencies, which provide additional information about some the incredible progress across the Department. Our Committee continues to be grateful and proud to participate in this important work.
HHS continues working to ensure that across the lifespan, and in all communities, all LGBT individuals, including people living with HIV and AIDS, have the best possible hope for healthy futures.
Among other landmark accomplishments in 2016, the Department took three major steps this past year to advance the health and well-being of LGBT individuals:
- In May, the Office for Civil Rights (OCR) released the final rule implementing Section 1557 (the non-discrimination provision) of the Affordable Care Act (ACA) which protects against discrimination on the basis of sex, including gender identity and sex stereotyping;
- In June, Secretary Burwell announced the creation of a new position for a Senior Advisor for LGBT Health within the Office of the Assistant Secretary for Health (OASH); and,
- In October, in recognition of the significant health disparities facing the LGBT population and the important role that research plays in identifying and helping to mitigate those disparities, the National Institutes of Health (NIH) officially designated sexual and gender minorities (SGM) as a health disparity population for research.
These three significant advances are some of the most recent major efforts that the Department has made in the past six years. In addition, we have increased non-discrimination protections; improved awareness and understanding of LGBT health and human services in communities and in the workforce; helped increase capacity on the ground to serve LGBT communities; made progress towards collecting better data; and begun coordinating our research efforts in order to close information gaps to reduce health disparities.
1. Prohibiting Discrimination Against LGBT Individuals and Families
A significant priority for HHS is ensuring that LGBT individuals have equal access to health care, health coverage, and human services.
Recognizing All Families
In November 2010, in response to the Presidential Memorandum on Hospital Visitation, the Centers for Medicare & Medicaid Services (CMS) issued a final rule clarifying that patients have a right to receive visitors of their choice, including “same-sex domestic partners,” and that visitation privileges may not be restricted or limited on the basis of race, color, national origin, religion, sex, gender identity, sexual orientation, or disability.2 Following that rule, CMS also issued guidance clarifying that advanced directives are equally available to LGBT families, including same-sex spouses.3 This year, building on the foundation laid in the Hospital Visitation Rule and on efforts to implement the Supreme Court’s decision in United States v. Windsor,4 CMS issued a proposed rule that would broadly prohibit hospitals and critical access hospitals that participate in Medicare and Medicaid from discriminating against individuals based on their sexual orientation or gender identity.5
HHS continues to take action to ensure that LGBT families can be fully recognized. Following the landmark marriage equality Supreme Court rulings in United State v. Windsor and Obergefell v. Hodges,6 the Department took swift actions to implement guidance to help ensure that LGBT marriages were recognized throughout HHS programs and policies.7 For example, CMS published State Health Official Letter 15-005 (December 2015) reflecting that states are required to treat spouses in a marriage between a same-sex couple the same as spouses in a marriage between an opposite-sex couple for all purposes under titles XIX and XXI of the Social Security Act and implementing regulations. As another example of efforts in this area, in April 2011 the HHS Administration for Children and Families’ (ACF) Administration on Children, Youth, and Families’ (ACYF) Children’s Bureau issued an Information Memorandum to State, Tribal, and Territorial Agencies to encourage child welfare agencies, foster and adoptive parents, and others who work with young people to ensure that children, including LGBT youth, are protected and supported while they are in foster care.8
This year, ACF took significant steps towards protecting LGBT youth from discrimination through a series of rulemakings. In 2016, ACF published numerous final and proposed rules with an impact on the wellbeing of LGBT youth and families, including regulations implementing the Runaway and Homeless Youth Act, the Head Start Performance Standards, the Adoption and Foster Care Analysis and Reporting System, and the Family Violence Prevention and Services Act, among others.
The Department has also looked inward to create more welcoming environments for LGBT individuals, which includes HHS employees and those we serve. In addition to adding sexual orientation and gender identity to the HHS Equal Employment Opportunity Policy (2011), HHS extended non-discrimination protections to individuals served by HHS employees (2011) and contractors (2016). In addition, the Assistant Secretary for Financial Resources published a notice of proposed rulemaking extending those protections to discretionary grantees.9 Also in 2016, the HHS Equal Employment Opportunity and Compliance Division, within the Office of the Assistant Secretary for Administration, issued a policy and procedures relating to non-discrimination and inclusion for transgender employees and applicants. Finally, following a change in the Department of Defense policy regarding service by transgender members, the U.S. Public Health Service Commissioned Corps took action to amend its policy to permit transgender applicants and to clarify policies for transgender service-members.
Improving Access to Healthcare through the ACA
Access to quality care and coverage is essential to survive and thrive. HHS has focused on ensuring that LGBT individuals are protected against discrimination. In particular, the Department has made significant progress towards improving access to care for transgender individuals. In 2014, the Departmental Appeals Board overturned a Medicare National Coverage Determination (NCD) that prevented “transsexual surgery” from being covered under Medicare. In the absence of a national coverage policy, determinations regarding gender reassignment surgery continue to be made based on a consideration of an individual’s specific circumstances.10 Relatedly, and in response to concerns that Medicare beneficiaries can experience discrimination because of a perceived incongruence between their appearance and the gender marker on their Medicare cards, HHS is in the process of removing the gender marker from the Medicare card.
As the ACA expanded coverage and improved access to care for millions of Americans, the Department has recognized the importance of taking measures to assure that LGBT individuals share in these advances. In May 2015, the Department, in conjunction with the Department of Labor and the Department of the Treasury, published an FAQ which clarifies that plans or issuers cannot limit sex-specific recommended preventive services under section 2713 of the Public Health Service Act, based on an individual’s sex assigned at birth, gender identity, or recorded gender, to ensure that transgender people have access to the same preventive services that all people have under the ACA.12 As highlighted above, in May 2016 OCR published the final rule implementing Section 1557 of the ACA.13 Under the final rule, discrimination based on sex, which includes discrimination based on gender identity and sex stereotyping,14 is prohibited;15 and individuals must be treated consistent with their gender identity,16 including with respect to access to facilities such as patient rooms. Additionally, the rule prohibits categorical exclusions in insurance coverage for all health care services related to gender transition17 and denials and limitations in coverage for specific transition-related services where the denial results in discrimination.18 The rule also prohibits the denial or limitation in health services ordinarily or exclusively available to individuals of one sex, to a transgender individual, based on the fact that the individual’s sex assigned at birth, gender identity, or recorded gender, is different from the one to which such health services are ordinarily or exclusively available.19
As this rule applies to any health program or activity that receives funding from HHS, or that HHS itself administers it means that foreign organizations that enter into contracts HHS to perform health programs or activities are likewise prohibited from discriminating on the basis of sex carrying out those programs or activities. Moving forward, operating components within HHS will take steps to ensure that stakeholders fully understand their rights and obligations under Section 1557. For example, OCR and the Substance Abuse and Mental Health Services Administration (SAMHSA) plan to jointly release sub-regulatory guidance clarifying the application of Section 1557 in the behavioral health context. This guidance is particularly important given that data increasingly demonstrates high rates of substance use and other behavioral health issues—specifically suicidality—experienced by LGBT populations.
CMS has also issued regulations under the ACA that prohibit discrimination on the basis of sexual orientation and gender identity.20 CMS has also published guidance documents as to these prohibited forms of discrimination.
The Department has undertaken significant outreach efforts to ensure that Section 1557 is widely understood and utilized. Since publication of the final rule in May, OCR has completed over 100 stakeholder engagements, including briefings for civil rights groups, governmental organizations, and industry stakeholders. OCR’s staff has spoken at numerous conferences with broad audiences, ranging from health care providers to health law attorneys, and has also worked collaboratively with CMS to provide information to Navigators, Assisters, and State-based Marketplaces on obligations under Section 1557. OCR’s regional staff is supporting these strategic engagements through outreach targeted to state medical societies, hospital associations, and state and local civil rights groups. OCR expects these efforts to continue well into next year.
In addition to outreach efforts to issuers, the CMS Office of Minority Health (OMH), the CMS Center for Medicaid and CHIP Services (CMCS), and the CMS Center for Consumer Information and Insurance Oversight (CCIIO) have undertaken efforts to provide clarification and technical assistance to state regulators, issuers, and other CMS stakeholders regarding non-discrimination provisions in federal law. SAMHSA also plans to host a series of webinars on Section 1557 for behavioral health stakeholders.
Improving Access to Healthcare Globally
While much of HHS’s work takes place within our borders, we also have a robust global presence, and over the past few years we have worked internationally at a local, national, regional, and multinational level to address the barriers LGBT populations face to accessing quality health care, due to stigma and discrimination. As an agency, we help to implement the US Government’s global AIDS program, PEPFAR,21 which in many countries requires focused attention on men who have sex with men as well as transgender women, who often have higher rates of HIV as well as greater vulnerability to infection in part due to stigma, discrimination, and violence. We have also worked closely with the World Health Organization, the specialized agency of the United Nations concerned with international public health as well as its regional agency the Pan American Health Organization (PAHO) to address the health access needs of the LGBT population. In the Fall of 2012, together with Thailand, the United States successfully petitioned to have the topic of LGBT health challenges placed on the agenda of the May 2013 WHO Executive Board meeting. In preparation for this discussion, WHO published a summary report on LGBT health, noting that while data is limited, it demonstrates that around the world LGBT persons “often experience poorer health outcomes than the general population and face barriers to health care that profoundly affect their overall health and well-being.” This report marked the first time WHO had addressed the topic of the health of LGBT persons. The US Government successfully sponsored a resolution at PAHO entitled, Addressing the Causes of Disparities in Health Services Access and Utilization for LGBT persons, which unanimously passed in the Fall of 2013. This resolution has opened up the Americas to a number of important dialogues on health and PAHO is currently in the process of producing a robust data-driven report on the barriers for LGBT persons to accessing health care in the Americas and their resulting health disparities.
2. Improving Data Collection and Supporting Research on LGBT Communities
During the past several years, the federal Government has made significant progress towards improved data collection on sexual orientation and gender identity (SOGI); HHS led that effort. Improved data collection allows the Department to make better data-driven, evidence-based decisions about how to address the health needs of the LGBT community, and ensure that when we prioritize our efforts, we focus on the most pressing health and human services issues affecting LGBT communities.
One of the first priorities for the Department was to begin the process of adding SOGI questions to major health surveys. From 2011 to 2013, HHS followed an LGBT Data Progression Plan, testing and then including a question on sexual orientation in our flagship national health survey—the National Health Interview Survey. Data from the NHIS are now collected continuously and released annually to monitor the health and wellbeing of the LGBT population. Research and development, which has included extensive stakeholder engagement, is also laying the groundwork for ongoing collaboration on work towards the addition of gender identity measures to population-based surveys as well.
HHS continues to work to improve the measurement of sexual orientation and gender identity for its data collections. The Department participates in the OMB Federal Interagency Working Group on Improving Measurement of Sexual Orientation and Gender Identity in Federal Surveys. The purpose of this working group is to begin addressing the lack of data for LGBT populations and the methodological issues in collecting such data. Three working papers have been developed and have been made available for public use. The first paper titled Evaluations of Sexual Orientation and Gender Identity Survey Measures: What Have We Learned? reviews evaluations of questionnaire measurement. The second paper titled Current Measures of Sexual Orientation and Gender Identity in Federal Surveys reviews current data collection efforts across the Administration. The third paper, titled Toward a Research Agenda for Sexual Orientation and Gender Identity in Federal Surveys: Findings, Recommendations, and Next Steps builds on the earlier working papers and interviews completed by the Research Agenda subgroup. Based on these collective efforts, the working group has delineated a proposed research agenda to provide guidance to the field about currently unresolved conceptual and methodological topics that we recommend be pursued in future research activities. HHS Data are included in all three papers.
HHS has also developed internal guidance to support the alignment of SOGI data collected throughout its major population surveys, for agencies that plan to collect data in this area. The guidance is designed to ensure that SOGI data collected in HHS population surveys are collected through the use of uniform questions on sexual orientation, where appropriate, and that the information collected will be disseminated in a structured manner. The guidance is consistent with the OMB Federal Agency Working Group on Improving Measurement of Sexual Orientation and Gender Identity in Federal Surveys. In addition to the internal guidance, the Assistant Secretary for Planning and Evaluation (ASPE) is developing an issue brief outlining HHS SOGI data collection efforts. For a list of large national surveys that currently include questions on sexual orientation and gender identity, as well as more information about the Department’s LGBT data collection efforts, see Appendix A.
The Department has also worked to ensure that LGBT demographic data can be collected in other important areas, such as electronic health records and in records collected by grantees. For example, the 2015 Edition Health Information Technology (Health IT) Certification Criteria Base Electronic Health Record (EHR) Definition, and the Office of the National Coordinator (ONC) Health IT Certification Program Modifications Final Rule specifically addresses SOGI and can support capturing a patient decision to self-identify their sexual orientation and/or gender identity under the “demographics” certification criterion using vocabulary standards.
Additionally, CMS has developed a work plan for the inclusion of gender identity questions in both the federal Marketplace application, as well as guidance to assist State-based Marketplaces seeking to add gender identity questions to their applications. Gender identity questions are projected to be added to the federal Marketplace application in fall 2017.
In 2010, the NIH commissioned a report from the Institute of Medicine (IOM)22 on the state of research and science regarding the health needs of LGBT people. This report constituted the first comprehensive overview of the field, and identified areas of opportunity for future work to close gaps in existing research. The report also highlighted the need for more and better LGBT health and human services research, as well as the significant disparities in LGBT access to health care and coverage.
Agencies across the Department are addressing the recommendations of the IOM report. NIH formed an internal research coordinating committee which continues to function today. Subsequently, NIH published two scientific portfolio analyses and, considering input from a variety of sources, developed a strategic plan for sexual and gender minority (SGM)-related research, in line with the IOM report recommendations. This chain of initiatives culminated in the establishment of the NIH Sexual and Gender Minority Research Office (SGMRO), which coordinates SGM-related research and activities by working directly with the NIH Institutes, Centers, and Offices. In 2016, NIH established the Sexual & Gender Minority Research Working Group of the Council of Councils, an Advisory Committee to the Division of Program Coordination, Planning, and Strategic, Initiatives in the NIH Office of the Director. The working group will provide scientific expertise and advice to the Council on the activities of the SGMRO.
The NIH has worked to increase research in SGM populations by establishing the Administrative Supplements for Research on Sexual and Gender Minorities, in addition to other Funding Opportunity Announcements in this area of research, including The Health of Sexual and Gender Minority Populations. NIH continues to explore funding opportunities related to SGM subpopulations.
In October of 2016, the National Institute for Minority Health and Health Disparities announced the official designation of sexual and gender minorities as a health disparity population for research; this designation will encourage researchers to collect and analyze SGM-related data in order to better understand differences and/or disparities between SGM subpopulations and other populations of interest.
In 2012, the Agency for Healthcare Research and Quality (AHRQ) released the 2011 National Healthcare Disparities Report, which focused on disparities in health care delivery related to racial and socioeconomic factors in priority populations.23 For the first time, the report included a focus on health care for LGBT populations. The 2012 National Healthcare Disparities Report focused on access to care and patient-provider interactions for LGBT populations and the 2013 report highlighted mental health and substance use as well as access to care among LGBT populations.24
This year, NIH, the Centers for Disease Control and Prevention (CDC), AHRQ, SAMHSA, the CMS Office of Minority Health (CMS/OMH), the Food and Drug Administration (FDA), the Indian Health Service (IHS), the Health Resources and Services Administration (HRSA), the Administration on Community Living (ACL), and the Administration for Children and Families (ACF) convened a cross-Departmental dialogue to harmonize LGBT research and surveillance and minimize duplication of efforts. The convening participants have since elected to formalize Departmental communication in this area, and have established the LGBT Research and Surveillance Working Group, which is now a formal sub-committee of the HHS LGBT Policy Coordinating Committee.
This strong focus on LGBT data collection and research, has allowed robust insight into LGBT individuals’ experiences in healthcare and other related arenas.
In August of this year, CDC published a Morbidity and Mortality Weekly Report,25 which included data from the Youth Risk Behavior Surveillance System (YRBS) that for the first time collected information about youth sexual orientation at a national level. The data shows that LGB youth experience higher rates of physical and sexual violence and bullying, that they engage in more sexual risk behaviors, and use substances at much higher rates.26 Thirty-nine percent of LGB students reported having attempted suicide in the past year. In October, SAMHSA released a report utilizing data from its National Survey on Drug Use and Health, which found similar trends among the adult population.27 For example, it found that sexual minorities were more likely to use illicit drugs in the past year, to be current cigarette smokers, and to be current alcohol drinkers compared with their sexual majority counterparts. This release was also a first instance of sexual orientation being included in the dataset.
Improved research on LGBT populations has also revealed some positive messages about resiliency and improving health outcomes for LGBT communities. For example, the Office on Women’s Health (OWH) recently published several articles releasing the findings of its landmark Healthy Weight in Lesbian and Bisexual Women (HWLB) study conducted in 10 cities across the nation. HWLB required that the research organizations partner with community organizations to develop the study interventions. The HWLB study helped participants achieve a healthy weight and develop healthier habits. Among all participants in the HWLB initiative, 95% achieved at least one of the health objectives studied.
The CMS Office on Minority Health also released a spotlight on older sexual minority individuals and found that LGB older adults are more likely than their non-LGB counterparts to have been tested for HIV and to have received a flu shot in the past year, but are also nearly twice as likely to have had five or more alcoholic drinks in one day – at least once in the past year.
3. Building the Knowledge Base, Improving Cultural Competency, and Expanding Capacity to Serve LGBT Communities
Reducing barriers to discrimination and helping more LGBT people get access to care and coverage is ultimately only a first step. We have also focused on expanding the nation’s ability to serve LGBT individuals by developing and disseminating best practices; working in partnership to provide training, technical assistance, and professional development opportunities; and by funding expert LGBT organizations to help build their ability to serve more individuals.
Across the Department, significant resources have been developed to help expand the national knowledge base and improve the cultural competency of community members and the work force. For example, in 2013, the HHS Office of Minority Health released the enhanced National Standards for Culturally and Linguistically Appropriate Services in Health and Health Care (National CLAS Standards)28 to promote a more inclusive definition of culture that encompasses not only race, ethnicity, and language, but also sexual orientation and gender identity. The National CLAS Standards serve as a blueprint for health and health care organizations to provide services that are respectful of and responsive to individual cultural health beliefs and practices, preferred languages, health literacy levels, and communication needs. These kinds of shifts have helped to guide the national health dialogue towards an understanding that health equity requires awareness of the unique needs of LGBT communities and individuals.
This past year, the Administration for Native Americans in ACF hosted a Native Empowerment Dialogue session, with a Two-Spirit youth leader on the needs of the American Indian / Alaska Native members of Two-Spirit populations at the ACF/HRSA Native American Grantee conference, the theme of which was “Native Empowerment: Pathways to the Future.” The conference took place in Tunica-Biloxi tribal territory, located in Markesville, Louisiana.
After significant development and research, this year the FDA launched a historic public education campaign aimed at preventing and reducing tobacco use among lesbian, gay, bisexual, and transgender young adults ages 18-24. The “This Free Life” campaign was launched nationally on May 15, 2016 in 12 key designated market areas and generated over 280 news articles and resulted in more than 760,000 impressions. The campaign’s outcome evaluation is ongoing and will be collected in 12 campaign-targeted cities and 12 comparison cities.
The Department has also published numerous other resources to help build knowledge and improve cultural competency throughout the health workforce and broader community. For example, last year SAMHSA published Ending Conversion Therapy: Supporting and Affirming LGBTQ Youth, which reviews relevant research and clarifies that conversion therapy is not effective, reinforces harmful gender stereotypes, and is not an appropriate mental health treatment. SAMHSA also supported the recent revision to an LGBT substance use treatment curriculum: A Provider’s Introduction to Substance Abuse Treatment for Lesbian, Gay, Bisexual, and Transgender Individuals. In March 2016, AHRQ published a systematic review on Improving Cultural Competence to Reduce Health Disparities.29 One of the questions of this review examined the effectiveness of interventions to improve culturally appropriate health care for LGBT adolescents, young adults, and adults. The review found 11 studies on different interventions designed to improve culturally competent care for the LGBT population, four of them on improving care to HIV positive men who have sex with men (MSM). The report identifies areas for future research to reduce disparities in care for LGBT populations.
HRSA has done substantial work to engage with the health workforce. For example, HRSA has held numerous trainings for the National Health Service Corps and community health workers that cover culturally competent care for LGBT patients and focus on strategies to ensure better service to these populations. After jointly hosting a listening session to discuss LGBT cultural competency with health care providers, HRSA and SAMHSA collaborated to identify and review curricula that help behavioral health and primary care practitioners assess, treat, and refer LGBT clients in a culturally competent manner.30 These curricula are freely available online and are CEU certified. This coming year, SAMHSA plans to develop a train the trainer course for crisis center call workers to respond to LGBT individuals in a culturally competent manner, and a Best Practices for Mental Health Treatment of LGBT individuals curriculum.
Many efforts in this area have focused on ensuring that LGBT individuals can fully realize the promise of the ACA. For example, CMS provides LGBT cultural competency training for Marketplace-approved assisters in federally-facilitated Marketplaces and is working to ensure that LGBT content is integrated throughout the training used for Marketplace consumer support, and SAMHSA published an ACA LGBT Enrollment Toolkit to assist behavioral health providers in enrolling LGBT individuals.
The Department has also worked to help expand the capacity of health and human services organizations that work directly with LGBT community members. In 2010, ACL funded the nation’s first national technical assistance resource center to support public and private organizations serving LGBT older adults. Similarly, HRSA awarded a grant to create a National LGBT Health Training Center, which is available to provide assistance to more than 1,400 community health centers to improve the health of LGBT populations. In June 2015, ACF’s Office of Refugee Resettlement (ORR) issued a letter to all state refugee coordinators, state refugee health coordinators, national voluntary agencies, and other interested parties to provide guidance on using Refugee Social Services funding for services to LGBT refugees and other ORR-eligible populations.31 Additionally, ACF created a first-of-its kind training and technical assistance center to support the resettlement of LGBT refugees,32 the Rainbow Welcome Initiative housed at the Heartland Alliance of Chicago, and also awarded grants to organizations to provide street outreach to LGBT homeless youth. Furthermore, in 2014, the ACF Family and Youth Services Bureau funded a three-year demonstration project to collect and assess emerging practices, culturally responsive screening and assessment tools, training models for Runaway and Homeless Youth providers, and examples of policies and programs that facilitate LGBT homeless youth feeling safe, respected, and affirmed.33
Across the Department, HHS Divisions have taken steps to make it clear that all grantees should work to meet the unique needs of LGBT populations. For example, SAMHSA requires that grant applicants submit information about how they will serve LGBT populations. ACL is currently revising the guidance issued to state units on aging (SUAs) for preparing state plans on aging to encourage greater inclusivity of LGBT and other diverse populations in outreach activities and service provision. ACF requires that applicants for Runaway and Homeless Youth Act grants document both their ability to adequately train staff on LGBT youth issues and that their policies prohibit harassment based on sexual orientation and gender identity. The Family Youth Services Bureau at ACF has also incorporated the unique needs of LGBT youth into their pregnancy prevention, personal responsibility, and abstinence-only education grants.34 HRSA also has an internal grants policy on cultural competency that includes sexual orientation and gender identity, and LGBT people are on the list of populations that must be served by community health center applicants.
The Department has funded numerous grants that specifically aim to meet the needs of LGBT people and people living with HIV and AIDS. For example, last year CDC began a four-year demonstration project (of up to $60 million) designed to improve outcomes for gay, bisexual, and other MSM of color. The HHS Office of Minority Health awarded over $2 million in grant funding to community-based organizations to address unmet needs of young racial and ethnic minority men who have sex with men participating in its HIV/AIDS Initiative for Minority Men (AIMM) program. In 2011, HRSA awarded health center planning grants to the Mazzoni Center of Philadelphia and the AIDS Foundation of Chicago to help both organizations provide a more comprehensive range of primary health care services to their communities.
In 2014, AHRQ awarded a three-year cooperative agreement to the University of Chicago to reduce healthcare disparities in racial and ethnic LGBT populations using shared decision-making (SDM). The aims of the project are to: improve SDM between healthcare providers among LGBT racial and ethnic minority populations; conduct a systematic literature review; obtain input and feedback from diverse stakeholders through interviews and focus groups including organizations community groups, health care delivery systems, clinicians, and patients representing LGBT minority populations around preferred SDM; and develop tools and resources for healthcare providers and LGBT patients. Four journal articles from this research were published in the March 2016 issue of the Journal of General Internal Medicine.35 A fourth journal article, “Addressing Barriers to Shared Decision Making among Latino LGBTQ Patients and Healthcare Providers in Clinical Settings,” was featured in the October 2016 issue of LGBT Health.
The Road Ahead
Such significant progress to support the health and well-being of LGBT individuals has only been possible because of strong partnerships across the Department and with a range of LGBT stakeholders. Partnerships will continue to be crucial as we work together to fulfill our vision of a healthy future for LGBT communities.
Through improved data collection and a stronger focus on LGBT research, we are beginning to have a much better understanding of the health disparities facing LGBT communities. We know that LGBT youth are disproportionately at risk for substance use disorder, risky sexual behaviors, bullying and harassment in schools, and violence. We will continue to focus on ways to improve the lives of LGBT youth, to build better and more accepting and celebratory environments, and to give families and communities the tools they need to support LGBT children.
We know that young black gay and bisexual men and transgender women are at significantly higher risk of acquiring HIV/AIDS. In an effort to reduce these disparities, HRSA has funded several initiatives:
- The Special Projects of National Significance Program: “Enhancing Access to and Retention in Quality HIV Care for Transgender Women of Color” is a $3.2 million per year initiative which will identify, evaluate, and disseminate successful strategies to improve engagement and retention in HIV primary care for transgender women of color living with HIV. All nine demonstration projects have implemented their identification, access, retention, and adherence interventions, with current enrollment in the multisite evaluation at 750 participants.
- The HRSA HIV/AIDS Bureau funded the Resource and Technical Assistance Center for HIV Prevention and Care for Black Men who Have Sex with Men (Black MSM). The aim and purpose of this project is to compile and disseminate models of care and technical assistance strategies which increase the capacity, quality, and effectiveness of HIV/AIDS service for the Black MSM community in HIV clinical care, especially Black youth aged 13-24.
In addition, the CDC is taking steps to expand the National HIV Behavioral Surveillance to collect data on transgender individuals, and has proposed funding up to 10 sites for a project period from January 1, 2017 to October 31, 2018. The CDC also supports the Start Talking campaign, which is targeted towards gay and bisexual men and other MSM, and encourages open discussion about a range of HIV prevention strategies and related sexual health issues between sex partners.
Finally, in 2016, CDC, CMS and HRSA launched the HIV Health Improvement Affinity Group. This group will bring together state public health and Medicaid/CHIP agencies to identify opportunities for improvement in the HIV care continuum for their Medicaid and CHIP enrolled, HIV-positive residents. Participating states will develop and implement one or more projects that address gaps along the HIV care continuum to increase the proportion of Medicaid and CHIP enrollees living with HIV who achieve better outcomes along the HIV care continuum.
Of course, there are many questions still left unanswered about LGBT health and human services, which is why improved data collection and coordination of research efforts will continue to be at the forefront of our efforts in this area. In particular, we will work towards incorporating gender identity questions in HHS-funded surveys.
The next year also holds plans for the LGBT Research and Surveillance Working Group, a formal sub-committee of the HHS LGBT Policy Coordinating Committee. Assisted by the CMS OMH’s Health Equity Innovations Incubator (HEII) contract, the working group will begin the process of building a website clearinghouse of all federal data systems and surveys that include sexual and gender minority data collection. A centrally located, and regularly updated, information source for all HHS and other federal data initiatives around SOGI data will be a helpful tool for anyone seeking information about specific data availability. Information about the individual data collection platform (e.g. survey, administrative data, etc.) will be available as well as links to obtaining the data sets, variable lists, year availability, and potentially links to relevant publications. There are additional plans to have a monitored list of funding announcements related to SGM research and surveillance.
We will also continue to minimize barriers to access wherever possible and ensure that discrimination against LGBT people is not tolerated. Specifically, full implementation of Section 1557 will require time and continued coordination across the Department. In that vein, we will continue to look specifically at transgender health issues and at minimizing barriers across the spectrum of services – from enrollment to provider treatment and insurance coverage. We know that our continued efforts at collecting data and working with stakeholders on these issues will prove invaluable in informing the entire process.
The LGBT Policy Coordinating Committee, working in conjunction with the Senior Advisor for LGBT Health, will continue to be central to the Department’s focus on LGBT issues moving forward. Together, we will focus on improving data collection, building a robust research community and agenda, supporting the health workforce, and helping to disseminate information about best practices and cultural competency for LGBT communities.
A. Data Collection
As of October 2016, sexual behavior, sexual attraction, sexual orientation, gender identity, and/or same-sex family household measures have been added to the following large HHS-supported national surveys:
- The Behavioral Risk Factor Surveillance System (Sexual behavior, sexual identity, gender identity)
- Health Center Patient Survey (Sexual orientation and gender identity)
- The National Adult Tobacco Survey (Sexual orientation and gender identity)
- The National Epidemiologic Survey on Alcohol and Related Conditions (Sexual behavior, sexual identity, sexual attraction
- The National Health and Nutrition Examination Survey (Sexual behavior, sexual identity
- The National Health Interview Survey (Sexual identity and same-sex partner household)
- The National Longitudinal Study of Adolescent Health (Sexual behavior, sexual identity, sexual attraction, and same-sex partner household)
- The National Social Life, Health, and Aging Project (Sexual behavior and same-sex partner household)
- The National Survey of Family Growth (Sexual behavior, sexual identity, sexual attraction)
- The National Survey of Older Americans Act Participants (Sexual identity)
- The National Survey on Drug Use and Health (Sexual behavior, sexual orientation)
- Population Assessment of Tobacco and Health (Sexual orientation, sexual attraction, gender identity)
- The Youth Risk Behavioral Surveillance System (Sexual behavior and sexual identity)
The Federal Interagency Working Group on Improving Measurement of Sexual Orientation and Gender Identity in Federal Surveys has produced an in-depth overview of the Current Measures of Sexual Orientation and Gender Identity in Federal Surveys.
B. Administration on Children and Families
The following initiatives represent just a few of the many LGBTQ-related initiatives at ACF in FY2016:
- In March 2016, the Children’s Bureau released a Funding Opportunity Announcement to fund a National Quality Improvement Center on Tailored Services, Placement Stability and Permanency for LGBTQ Children and Youth in Foster Care. This 5-year discretionary grant established, by awarding a cooperative agreement, a National Quality Improvement Center (QIC) that will conduct 4-6 projects in public child welfare system sites to test a set of interventions that support the permanency, well-being, and stability of LGBTQ, as well as two-spirit, children and youth in the foster care system.
- As of FY2016, all of the Family and Youth Service Bureau’s (FYSB)Adolescent Pregnancy Prevention Program grantees must ensure that their projects meet the needs of LGBTQ youth participants. Further, grantees must provide programming that is inclusive of, and non-stigmatizing toward LGBTQ participants. Programs must be welcoming and accessible to LGBTQ youth. To help grantees in fulfilling this requirement, FYSB held an in-person, skill building training for grantees titled, “Going Beyond the Acronym: Meaningful Inclusion of LGBTQ Youth,” and developed an infographic, “How to Be an Ally in the LGBTQ+ Community.”
- FYSB’s Runaway and Homeless Youth Program (RHY) awarded 9 projects under the Transitional Living Program (TLP) Special Population Demonstration Project: “LGBTQ Runaway and Homeless Youth and Young Adults Who Have Left Foster Care After Age 18”. Each demonstration project has a 24 month project period to implement, enhance, and/or support a framework or model to promote the effective transition from homeless youth to self-sufficient young adults. The target populations are LGBTQ youth experiencing homelessness between the ages of 16 to 21, and young adults who have left foster care after the age of 18 up to age 21 who need alternative housing and services.
- FYSB’s Family Violence Prevention and Service Program awarded the inaugural Family Violence Prevention and Services LGBTQ Institute on Intimate Partner Violence grant to the Northwest Network of Bisexual, Trans, Lesbian and Gay Survivors of Abuse (Northwest Network). The LGBTQ Institute, a partnership between the Northwest Network and the National Coalition of Anti-Violence Programs, will focus on expanding the capacity of individuals, organizations, governmental agencies, local communities, tribes, and tribal organizations to identify and respond to the unique and emerging needs of LGBTQ intimate partner violence survivors.
- The Office of Head Start (OHS) published an LGBT-focused Relationship-Based Practice section of their Parent, Family & Community Engagement page on the Office of Head Start’s Early Childhood Learning & Knowledge Center website. OHS also published a new web page: Creating a Welcoming Early Childhood Program for LGBT Headed Families. This page includes resources to assist early childhood program staff in their work with LGBT parents and their children.
- ACF’s Office of Human Services Emergency Preparedness and Response (OHSEPR) included LGBT individuals and families as part of their fact sheet toolkit on special populations for human services emergency responders.
- OHSEPR staff provided a training on “Promoting a Supportive Service Delivery and Work Environment for LGBT Individuals and Families” at the 2015 U.S. Public Health Service Commissioned Corps Scientific and Training Symposium in Atlanta Georgia, May 19, 2015.
- OHSEPR staff provides a monthly training as part of the U.S. Public Health Service Commissioned Corps Officer Basic Course on “At-Risk Populations in Disasters and Public Health Emergencies.” This training includes specific learning content on the needs of the LGBT community in disasters, with concrete recommendations focused on supports for transgender disaster survivors.
C. Centers for Medicare and Medicaid Services, Office of Minority Health
- Medicare Learning Network Training- Catching Everyone in America’s Safety Net: Collecting Sexual Orientation and Gender Identity Data in Clinical Settings
- This web-based training will be available for continuing education credits by the end of 2016.
- Transgender Beneficiary Research: Innovative algorithm to identify probable population receiving transition related services through claims analysis.
- Data briefs and publications:
- Health Disparities Experienced among Older Sexual Minorities: National Health Interview Survey, 2013–2014, analysis of NHIS data form 2013 and 2014; Published on CMS OMH website
- Medicare Current Beneficiaries Survey (MCBS) Cognitive testing report for inclusion of SOGI questions
- MCBS Spanish Sexual Orientation Cognitive Testing Enhancement: In earlier cognitive testing there were some issues for Spanish speakers with the sexual orientation component of the SOGI questions. Additional cognitive testing completed by CMS OMH, NORC, and in collaboration with NCHS, provided a better functional transition for Spanish language sexual orientation response options.
D. Food and Drug Administration
MSM Blood Donation:
The FDA’s mission is to protect and promote the nation’s health by helping to ensure safe and effective drugs, devices and biological products including blood and blood products. On July 26, 2016 the FDA issued a notice in the Federal Register titled “Blood Donor Deferral Policy for Reducing the Risk of Human Immunodeficiency Virus Transmission by Blood and Blood Products.”
When the FDA updated the blood donation policy in December 2015, the FDA promised to continue to reconsider the donor deferral policies as new data become available. The Federal Register Notice sought scientific advice on:
- The feasibility of moving from the existing time-based deferrals related to risk behaviors to alternate deferral options, such as the use of individual risk assessment.
- The design of potential studies to evaluate the feasibility or effectiveness of such alternative deferral policy options.
- Other science-based comments that will help shape future decisions.
FDA’s goal is to develop the scientific evidence needed to fairly and non-judgmentally assess a person’s risk when donating blood, while maintaining the safety of the blood supply. FDA looks forward to working together with all interested parties as it works to gather the scientific evidence necessary to support implementation of individual risk assessment for all blood donors.
E. Health Resources and Services Administration - Highlights 2011-2015
- In 2011, HRSA funded the “Enhancing Access to and Retention in Quality HIV Care for Transgender Women of Color” initiative. This 5-year, $3.2 million initiative will identify, evaluate, and disseminate successful strategies to improve engagement and retention in HIV primary care for transgender women of color living with HIV. Nine demonstration project grants were awarded in four cities: two in New York City, two in Chicago, two in Los Angeles, and three in the San Francisco Bay area. The University of California, San Francisco (UCSF) is serving as the Evaluation and Technical Assistance Center, leading the multisite evaluation and also providing technical assistance and capacity building to the demonstration sites and their medical provider collaborating organizations. All nine demonstration projects have implemented their identification, access, retention, and adherence interventions, with current enrollment in the multisite evaluation at 750 participants.
- In September 2011, HRSA awarded a cooperative agreement to the Fenway Institute to create a national training and technical assistance center to help more than 9000 community health center sites improve the health of LGBT populations. The National LGBT Health Education Center provides training and technical assistance on LGBT health needs and services to health centers across the nation. They offer a range of training topics that respond to needs expressed by health centers and reflect current research findings and national initiatives affecting health centers locally and nationally. These trainings are conducted at a variety of venues including national conferences and webinars, regional and local trainings, and with individual health centers. The Education Center maintains a monthly webinar series, averaging between 200-300 viewers per webinar, on topics of interest to health centers that can be viewed live or via archived trainings on their website. Additionally, they have developed publications, learning modules and training videos on topics such as transgender health, collecting sexual orientation and gender identity data and providing inclusive health care to LGBT patients. The Education Center receives $450,000 annually under a three-year cooperative agreement through June 2017.
- Health Workforce Training programs give financial support to educational institutions and healthcare delivery sites for training and curriculum development, and for scholarship and loan repayment for health professions students and faculty. The goal is to support a diverse workforce that is technically skilled, culturally appropriate, and suited for a contemporary practice environment that includes inter-professional team-based care to address the health needs of diverse LGBT populations.
- The AIDS Education and Training Centers (AETC) Program has conducted trainings, webinars, conference calls, and technical assistance initiatives geared at providing cultural competency training to HHS employees, program recipients, grantees, health care providers, and others to improve capacity to provide quality services and research for LGBT populations.
- HRSA has included questions on sexual orientation and gender identity on its surveys and administrative records. For example, HRSA included a question on gender identity in the 2013 and 2014 National Health Service Corps Patient Satisfaction Survey and the 2014 NURSE Corps Participant Satisfaction Survey. In 2016, HRSA-funded health centers and look-alikes will begin collecting SOGI data elements in the Uniform Data System.
- Finally, HRSA fully implemented policy that recognizes legally married same-sex couples. For example, HRSA updated its application guidance for loan repayment for both the National Health Service Corps and the NURSE Corps to reflect that any reference to “spouse,” “couple,” or “marriage,” as well as “family” or “family member,” now includes same-sex spouses legally married in jurisdictions that recognize their marriages.
F. National Institutes of Health
NIH has taken numerous steps over the past several years to increase SGM-related research, remove barriers for the SGM research community, and support scholars committed to research on SGM health and well-being. The following activities represent just a few of the many initiatives at NIH focused on SGM health and well-being.
- NIH has published several SGM-related Funding Opportunity Announcements, in addition to the SGM-specific calls for research. These calls for research span various funding mechanisms and multiple NIH Institutes and Centers. These include, but are not limited to, research focused on the following areas: multidisciplinary developmental research with individuals and families affected by disorders or differences of sex development (DSD, sometimes referred to as intersex conditions); behavioral interventions to prevent HIV in diverse adolescent men who have sex with men; and delivery models of HIV-focused services for high risk or already HIV+ infected youth and young adults.
- In the spring of 2015, the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD), with contributions from the National Institute for Allergy and Infectious Diseases and the National Cancer Institute, supported a workshop to discuss research gaps related to the health care needs of transgender people. This meeting provided a venue for interdisciplinary scientists to meet and exchange ideas about the key issues and methodological challenges in conducting research in transgender health. The workshop area foci were: health disparities; gender identity development across the lifespan; clinical management of gender nonconforming children and adolescents; the safety and efficacy of transgender hormone regimens; and innovative research methods; and opportunities for collaboration. Six papers were published in the journal Current Opinion in Endocrinology, Diabetes, and Obesity, as a result of the workshop.
- The SGMRO is working across several Institutes and Centers at NIH to promote the inclusion of sexual orientation and gender identity questions in both the intramural and extramural settings. Additional collection of SOGI data will facilitate better understanding of health disparities within SGM populations.
- The NIH Office of Equity, Diversity, and Inclusion (OEDI), along with the SGMRO, co-sponsored several events in 2016 to highlight Pride month at the agency. Events included panel discussions, trainings, and the “Telling Our Stories” film series.
- NIH is strongly committed to the principles of equal employment opportunity (EEO), diversity, and inclusion. Because of this commitment, in 2013, the NIH established the SGM Portfolio in OEDI (previously known as the Lesbian, Gay, Bisexual, Transgender, and Intersex Special Emphasis Program). The SGM Portfolio strategist works to ensure that equal opportunity for SGM employees are present in all aspects of the agency’s programs and services. OEDI offers SafeZone training to interested employees; SafeZone provides a new framework to help create inclusive and affirming workspaces within NIH for SGM communities.
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On March 14, 2014, CMS published guidance clarifying that a health insurance issuer in the group or individual market that offers coverage of an opposite-sex spouse cannot refuse to offer coverage of a same-sex spouse. See Frequently Asked Question on Coverage of Same-Sex Spouses available at https://www.cms.gov/CCIIO/Resources/Regulations-and-Guidance/Downloads/frequently-asked-questions-on-coverage-of-same-sex-spouses.pdf