March 1, 2021
Re: Agency Information Collection Activities; Submission to the Office of Management and Budget (OMB) for Review and Approval; Comment Request; Household Pulse Survey (OMB No. 0607-1013)
Dear Sheleen Dumas:
We write in response to the U.S. Census Bureau notice requesting comments on the Household Pulse Survey (see 86 FR 7692). Specifically, we aim to address the need for the Household Pulse Survey to include data collection on sexual orientation and gender identity (SOGI).
As COVID-19 unfolded there was a great level of concern in the LGBTQI communities about the lack of data collection. Early concerns from available public health and economic evidence have only been substantiated as limited data become available. Lessons from this once in a lifetime pandemic will be analyzed in the public health world for years and we cannot retroactively collect data that have been suppressed.
As you consider the Pulse measures we are writing to bring your attention to several important items urging SOGI data collection to help both monitor and redress potential sexual and gender minority (SGM) health disparities related to COVID-19.
- In March 2020 over 100 LGBTQI and allied organizations signed a letter outlining the public health case statement for increased risk for the SGM communities with COVID-19. This letter outlined ten asks, one of which was “Ensuring surveillance efforts capture sexual orientation and gender identity as part of routine demographics.”.1
- In April 2020 another open letter was created, this one signed by over 170 LGBTQI and allied organizations. This letter outlined three particular challenges, one of which was the ongoing lack of data collection. “One of the greatest challenges facing the LGBTQ+ communities is invisibility to policymakers, public health officials and health care providers due in significant part to the failure to collect data on sexual orientation and gender identity (SOGI) from patients and in government-sponsored surveys.” As with the first letter this also asked for SOGI data collection related to COVID-19.2
- In May 2020, U.S. Representatives Menendez and Grijalva sent a letter to HHS co-signed by almost 100 members of the House asking for increased SOGI COVID-related data collection. An excerpt from the letter is presented below.3
“Achieving health equity in this pandemic includes taking an equitable approach in COVID-19 surveillance systems that collect data on patients’ race, ethnicity, sex, primary language, sexual orientation, gender identity, disability status, and socioeconomic status in line with federal standards. The fact remains that we know little about the social and economic circumstances of the LGBTQ population at large. For these reasons, we believe that it is critical for the federal government to work with states and localities to provide disaggregated data on sexual orientation, gender identity, and other demographic characteristics when reporting COVID-19 tests, cases, and fatalities to the CDC.”
- In December 2020, a third community signed letter was created, specifically related to vaccine outreach and again, data collection. This letter was signed by over 120 organizations. This letter went into further detail outlining why “SOGI plus intersex data collection would be consistent with a decade of federal initiatives.” Particularly noting that over the past decade an increasing number of federal surveillance systems have added SOGI data collection, as well the Joint Commission, the American Medical Association, and other medical societies have adopted position statements calling for such data collection.4
- In January 2020 some of the first data emerged about COVID-19 vaccine hesitancy, showing LGBT persons were nearly twice as likely to be vaccine hesitant than the full population.5
- In February 2020, after meeting a series of community leaders CDC released their first internal analysis of available data on SGM COVID-19 risk. Their analysis did confirm increased risks for a wide range of health issues for sexual minorities. The authors conclude “this data gap underscores the need to extend COVID-19 surveillance and other studies to include measures of sexual orientation and gender identity.” 6
We hope you consider the expressed concerns by over two hundred outside organizations, nearly 100 members of Congress, and one federal agency and take this opportunity to add SOGI demographic questions to the Pulse Survey.
Sincerely,
Scout, MA PhD
Executive Director
December 18, 2020
Dear Dr. Levine and Association of State and Territorial Health Officers (ASTHO) members, We, a coalition of lesbian, gay, bisexual, transgender, queer, and intersex (LGBTQI) health policy advocates, write to encourage you to:
- Incorporate attention to LGBTQI populations into your COVID-19 vaccine health equity strategies, and
- to collect and report sexual orientation and gender identity (SOGI) plus intersex data in novel coronavirus testing, COVID-19 care outcomes, and vaccine uptake.
It is vital that governments and public health experts have a clear picture of the disparate risks and impacts of the novel coronavirus on LGBTQI people to inform public health efforts. There are many reasons to believe that LGBTQI people may be disproportionately vulnerable to infection by SARS-CoV-2 and to complications should they develop COVID-19. This is especially true of our Black, Latinx and Indigenous people, our people with disabilities, and our older adults. Due to negative experiences in the health care system and high rates of medical mistrust, many LGBTQI people may be reluctant to access the vaccine when it becomes available.
Why LGBTQI people may experience disparities in COVID-19
According to a Human Rights Campaign analysis of 2018 General Social Survey data, LGBTQ people disproportionately work in jobs that are considered essential: 40% work in restaurants/food services, health care, education, and retail, compared to 22% of non-LGBTQ individuals. They may therefore be more likely to be exposed to the coronavirus. Additionally, LGBTQ people suffer economic disparities that place many in living environments that may make it harder to maintain social distancing.1 According to the Williams Institute at UCLA School of Law, 22% of LGBT people in the U.S. are poor, compared to 16% of straight cisgender people.2 LGBT people of color, bisexuals, and transgender people are more likely to be poor than other LGBT people. We also know that LGBTQ people are more likely to live in urban areas, where physical distancing measures are harder to maintain. A recent report by the Movement Advancement Project3 highlights the disproportionate impact COVID-19 has had on LGBTQ households. As a result of COVID-19:
- 66% of LGBTQ households have had a serious financial problem versus 44% of other households;
- 64% of LGBTQ households experienced employment or wage loss, versus 45% ofothers; and
- 38% of LGBTQ households experienced barriers to getting care for a serious medical problem, versus 19% of others.
These problems were exacerbated for Black and Brown LGBTQ households, as examples: 95% of Black LGBTQ households experienced a serious financial problem and 61% of Latino LGBTQ households experienced employment or wage loss.
LGBTQ people are more likely to have some of the underlying health conditions that correlate with increased vulnerability to COVID-19-related health complications and fatalities. These include higher rates of cardiovascular disease, cancer, obesity, diabetes, and HIV/AIDS.4 A 2017 Center for American Progress survey found that 65% of LGBTQ people have chronic conditions.5 Lesbian and bisexual women are more likely than heterosexual women to be overweight or obese.6 There is also emerging research about higher rates of sedentarism, prediabetes, and diabetes among LGBTQ youth, which could lead to diabetes later in life.7 LGBTQ older adults experience higher rates of disability than heterosexual, cisgender older adults.8
LGBTQ people use tobacco at rates 50% higher than the general population,9,10 including being more likely to vape.11 They are also more likely to have other substance abuse.12 Both smoking and vaping are known links to deleterious COVID-19 outcomes.13,14 Higher rates of tobacco and substance use are related to experiences of stigma, minority stress, and social anxiety. These disparities intersect with racial and ethnic health disparities. All of these conditions and risk behaviors could increase the vulnerability of LGBTQ people if they are exposed to SARS-CoV-2.
Intersex people specifically mistrust the medical community and are disproportionately at risk for COVID-19 and more likely not to seek treatment for possible infection.15
Why LGBTQI people may need extra outreach efforts to ensure vaccine uptake
LGBTQI people experience discrimination and stigma, which negatively affects physical and mental health16 and constitutes a barrier to accessing care.17 Lesbian and bisexual women18 and transgender people19 are less likely to access routine, preventive health care compared to their heterosexual and cisgender peers. LGBTQI people of color experience intersectional stigma based on race as well as sexual orientation and gender identity (SOGI).20 In recent years, the federal government has enacted discriminatory religious refusal policies21 and removed SOGI nondiscrimination language from federal health care regulations.22
Partly as a result of stigma and discrimination in health care, LGBTQI people, and especially LGBTQI people of color23 and transgender people,24 experience medical mistrust, which could affect the likelihood that they will know when a vaccine becomes available, know how to access it, and be willing to trust those offering the vaccine.
Many older LGBTQI people experience medical mistrust because when they were coming of age the medical establishment pathologized same-sex behavior and gender diversity. Many sexual and gender minority individuals were subjected to shock therapy or lobotomies, or were committed to psychiatric institutions with the support of mainstream medicine and psychiatry.25 Intersex people also often have challenging relationships with the health care system. Many have experienced medical trauma related to medically unnecessary cosmetic surgeries conducted without their consent, and unnecessary and objectifying medical examinations.26 Many experience minority stress related to nondisclosure and concerns related to disclosure of their intersex status.27 In a recent study on intersex adults in the U.S., over 43% of participants rated their physical health as fair/poor and 53% reported fair/poor mental health. Prevalent health diagnoses included depression, anxiety, arthritis, and hypertension, with significant differences by age. Nearly a third reported difficulty with everyday tasks and over half reported serious difficulties with cognitive tasks.28
Public health authorities and health care providers should conduct affirmative outreach and enlist trusted community leaders to promote vaccination in Black and Native American communities, immigrant communities, LGBTQI communities, and other communities in which medical mistrust is high.
The need for sexual orientation and gender identity data collection in the COVID-19 pandemic In order to know if LGBTQI people are accessing the vaccine, health systems need to systematically collect and report sexual orientation and gender identity (SOGI) plus intersex data in real time in relation to COVID-19 vaccination. This would be consistent with the CDC’s recommendations for 10 essential public health services.29Are LGBTQI people more likely to develop complications from COVID-19? Are they more likely to die? Are LGBTQI Black people most at risk? What about LGBTQI older adults and long-term survivors living with HIV in the U.S., most of whom are LGBTQI? These are critically important questions. We need our public health response system to systematically collect SOGI plus intersex data to understand if LGBTQI people face increased risks of acquiring the novel coronavirus, how LGBTQI people are experiencing COVID-19, and how LGBTQI disparities intersect with racial and ethnic disparities in COVID-19 risks and outcomes.
This data will help ensure that prevention efforts, testing, and care services are effectively meeting the needs of LGBTQI people.
SOGI plus intersex data collection would be consistent with a decade of federal initiatives
Over the past decade, a number of federal agencies and initiatives have encouraged SOGI plus intersex data collection in health care settings, including:
● Healthy People 2020, our nation’s health promotion and prevention strategy, makes promoting SOGI data collection to help understand and eliminate disparities a key priority.30
● The 2011 Institute of Medicine Report on LGBT Health called for SOGI questions to be included in the Meaningful Use Program (a CMS/ONC-led incentive program to promote the shift to Electronic Health Records) and added to more health and demographic surveys.31
● In 2015, ONC adopted SOGI standards as required fields in the “demographics” section of the 2015 Edition Base Electronic Health Record (EHR) Definition certification criteria, making SOGI part of all Certified Electronic Health Record Technology (CEHRT) products.31
● SOGI data have also been included in the Interoperability Standards Advisory since it was first published in 2015.32 SOGI standards have achieved steadily increasing and high levels of maturity and adoption since 2015, as reflected in the 2020 reference edition of ONC’s Interoperability Standards Advisory.33
● In 2015 the Centers for Medicare and Medicaid Services encouraged the collection and use of SOGI data to improve quality of care in their CMS Equity Plan for Medicare Beneficiaries.31
In addition to these government agency actions, in 2011 the Joint Commission called for SOGI data collection.34 The American Medical Association (2017)35 and other professional associations have adopted formal positions supporting SOGI data collection in health care.
Health centers are collecting, reporting, and using SOGI data to improve quality of care and our understanding of LGBTQ disparities. An increasing number of hospitals and private practices are as well. Inclusion of SOGI data in Electronic Health Records is the industry norm.
Several states are taking the lead on SOGI data collection in the COVID-19 pandemic, including Pennsylvania, California,36 Rhode Island, and the District of Columbia.37 California is requiring all health care providers and labs to collect and report to the state health department SOGI data in COVID-19 cases and other reportable diseases. The Massachusetts Department of Public Health is adding SOGI fields to the Mass. Virtual Epidemiologic Network (MAVEN), and is on the verge of releasing SOGI data standards.
Based on many years of experience collecting and using patient SOGI data in Electronic Health Records (EHRs), advocating for inclusion of SOGI in national health IT systems, and training health centers and other organizations in how to collect and use SOGI to improve quality of care, the Fenway Institute recommends the following SOGI questions:
Sexual orientation
Do you think of yourself as (Check one):
Gender identity
What is your current gender identity? (Check all that apply):
What sex were you assigned at birth? (Check one):
*You may replace the term “other” on patient-facing forms with the term that is most affirming for the communities you serve (e.g. “something else” or “additional category”).
These questions and response options were developed by the National LGBTQIA+ Health Education Center and approved by the Bureau of Primary Health Care at HRSA for use with the Health Center Program.38 These terms collect data that can be used to populate the Health Center Program’s Uniform Data System.39 They are also only slightly different from the minimal standards adopted by the Office of the National Coordinator of Health Information Technology in 2015,40,31 based on research that the Fenway Institute and the Center for American Progress conducted with health center patients in South Carolina, Maryland, Chicago and Boston.41 For more information please see LGBTQIHealthEducation.org or email scahill@fenwayhealth.org
Additionally, in order to effectively identify and include the intersex community the above questions alone are not enough. In consultation with the Williams Institute, interACT recommends42 the inclusion of specific additional question about intersex status such as:
Were you born with a variation in your physical sex characteristics? (This is sometimes called being intersex or having a Difference in Sex Development (DSD).
Thank you for considering incorporating attention to LGBTQI individuals into your vaccine distribution plan, with particular attention to addressing medical mistrust. Thank you also for considering collecting and reporting SOGI plus intersex data in SARS-CoV-2 testing, COVID-19 care outcomes, and COVID-19 vaccine uptake.
Sincerely,
Original signers:
Whitman-Walker Institute
The Fenway Institute
interACT: Advocates for Intersex Youth
Howard Brown Health
Transgender Legal Defense and Education
Fund
Callen-Lorde Health Center
SAGE USA
National Center for Transgender Equality
GLMA: Health Professionals Advancing
LGBTQ Equality
Transgender Law Center
Center for American Progress
Lyon-Martin Health Services
National LGBTQ Task Force
National LGBT Cancer Network
Additional signers
Advocates for Youth |
Aldee Health Services |
Alliance For Full Acceptance |
Antioch University MFA Program |
Atlanta Pride Committee |
Billy DeFrank LGBTQ+ Community Center |
Bisexual Organizing Project (BOP) |
Bradbury-Sullivan LGBT Community Center |
Bisexual Organizing Project-BOP |
California LGBTQ Health and Human Services Network |
CAMP Rehoboth Community Center |
Center for American Progress |
Center on Halsted |
CenterLink: The Community of LGBT Centers |
Chase Brexton Health Care |
CARES |
Center on Halsted |
CenterLink: The Community of LGBT Centers |
Compass LGBTQ Community Center |
Cobb County Democratic Party |
Compass LGBTQ Community Centter |
Corktown Health Center |
Cortland LGBTQ Center |
CrescentCare |
DBGM, Inc. |
Deaf Queer Resource Center |
Dolan Research International, LLC |
Equality California |
Equality Florida |
Equality Nevada |
Eastbay Stonewall Democratic Club |
Equitas Health Institute |
Erie Gay News |
Evaluation, Data Integration, and Technical Assistance (EDIT) Program |
FORGE, Inc. |
Equality North Carolina |
Equitas Health |
Erie Gay News |
Evaluation, Data Integration, and Technical Assistance (EDIT) Program, ISGMH, Northwestern University |
Gay City: Seattle’s LGBTQ Center |
Gay Elder Circle |
Georgia Equality |
GLBT Alliance |
GLBTQ Legal Advocates & Defenders |
(GLAD) |
Global Healthy Living Foundation /CreakyJoints |
Gay City: Seattle’s LGBTQ Center |
GRIOT Circle |
Harriet Hancock Center Foundation |
Health Equity Alliance for LGBTQ+ New Mexicans |
Henderson Equality Center |
Hetrick-Martin Institute |
Hudson Pride Center |
Hugh Lane Wellness Foundation |
Human Rights Alliance Santa Fe |
Harvey Milk Foundation |
Identity, Inc |
Imperial Valley LGBT Resource Center |
Inside Out Youth Services |
Institute for Human Identity |
InterPride |
Justice in Aging |
Lansing Area AIDS Network (LAAN) |
Legacy Community Health |
LGBT Center of Greater Reading |
LGBT Center of SE Wisconsin |
LGBTQ Center OC |
LGBTQ Center of Bay County |
Long Island LGBT Center |
Los Angeles LGBT Center |
Mass Equality |
Mazzoni Center |
Modern Military Association of America |
Movement Advancement Project (MAP) |
Lesbian,Bisexual, Gay, and Transgender PA Caucus, Inc. |
National Equality Action Team (NEAT) |
National LGBTQ Task Force |
New York LGBT Network |
Newark LGBTQ Community Center |
One Colorado |
one-n-ten |
Open Door Health |
Out Boulder County |
Out in the Open |
OutCenter of Southwest Michigan |
Pennsylvania Youth Congress |
PFY |
PGH Equality Center |
National Center for Lesbian Rights |
Pride Center of WNY |
Pride Community Center, Inc |
Pride Link |
Pridelines |
PROCEED INC. |
Queens LGBT Center |
QWELL Community Foundation |
Rainbow Community Center of Contra |
Costa County |
Rainbow Elder Care of Greater Dayton |
Rainbow Rose Center Resource Center |
Rhode Island Public Health Institute |
Rockland County Pride Center |
Safeguarding American Values for Everyone (SAVE) |
SAGE Metro Detroit |
San Francisco AIDS Foundation |
San Francisco Voice & Swallowing |
San Joaquin Pride Center |
Seacoast Outright |
Stand with Trans |
SunServe |
The DC Center for the LGBT Community |
The Frederick Center |
The Lesbian, Gay, Bisexual and Transgender Center |
The LOFT LGBTQ+ Community Center |
The Montrose Center |
The Sacramento LGBT Community Center |
The Source LGBT+ Center |
The Trevor Project |
Thundermist Health Center |
Transgender Education Network of Texas (TENT) |
Translatinx Network |
TriVersity Center for Gender and Sexual Diversity |
U.S. People Living with HIV Caucus |
Uptown Gay and Lesbian Alliance (UGLA) |
Washington County Gay Straight Alliance, Inc. |
Waves Ahead & SAGE Puerto Rico |
William Way LGBT Community Center |
For Immediate Release
April 21, 2020
Contact:
Scout, 401-267-8337, scout@cancer-network.org or
Jewel Addy, 202-204-5531, jaddy@whitman-walker.org
LGBTQ+ AND ALLIED ORGANIZATIONS ISSUE SECOND OPEN LETTER URGING DECISIVE ACTION TO PREVENT COVID-19 DISCRIMINATION
170 Organizations Highlight Need for Nondiscrimination, Sexual Orientation & Gender Identity Data Collection, and More Help for Economically Devastated Communities
Washington, DC – One hundred and seventy national, state and local LGBTQ+ and allied organizations have joined in a second open letter to health and policy leaders highlighting the importance of measures to prohibit discrimination in COVID-19 treatment and prevention, and clear communication of those measures and policies to better serve the health needs of marginalized communities with histories of discriminatory encounters with the medical and public health systems. The letter also urges medical providers and public health authorities to collect sexual orientation and gender identity data for COVID-19 cases in addition to data on race, ethnicity, age, sex and disability, in order to document and address the pandemic’s impact on minority communities. The signing organizations also emphasize the urgent need for more robust relief for lower-income individuals and families, and for persons who are dependent on lower-paying jobs in hospitality and other industries which are being decimated by the pandemic.
“We are in the middle of an unprecedented global health crisis – and we cannot afford to leave anyone behind,” said Rep. Barbara Lee, Vice Chair of the Congressional LGBTQ+ Equality Caucus. “As our work continues to get families and communities the resources they need to survive, we must ensure that protecting LGBTQ+ communities is a core part of our country’s response to COVID-19. Ensuring non-discrimination has and always will be a priority for me, and I will continue to work with my colleagues to make that a reality.”
“LGBTQ people have increased risk factors for COVID-19, including higher HIV and cancer rates, higher rates of smoking, and increased risk of homelessness,” said Senator Scott Wiener (D-San Francisco), who serves as Chair of the California Legislative LGBTQ Caucus and recently led a letter urging data collection. “We must ensure that the LGBTQ community has access to the resources it needs to face this pandemic, including quality, non-judgmental, and affordable healthcare, as well as unemployment benefits for every impacted industry, including the service and entertainment sectors. We also must collect data to understand how the LGBTQ+ community is being impacted by COVID-19.”
“Whitman-Walker and other community health centers that care for LGBTQ+ patients and others in marginalized communities have many patients who are understandably fearful of neglect or mistreatment in this pandemic,” said Laura Durso, PhD, Chief Learning Officer of the Whitman-Walker Institute. “Many of our patients work in lower-paying jobs that are particularly vulnerable in this crisis. We are committed to protecting those who are bearing the brunt of the pandemic’s economic devastation.”
“Early surveillance has shown how health disparities create very different outcomes for vulnerable populations,” notes Scout, PhD, the Deputy Director of the National LGBT Cancer Network, “which shows us how important it is to add LGBTQ data collection to COVID-19 surveillance.”
These organizations call on public health authorities, medical providers and government agencies to reinforce safeguards against discrimination; to foster collaborative relationships with LGBTQ+ service providers and advocates; to collect important data on patients, including sexual orientation and gender identity; and to expand the economic relief and legal protections needed by individuals and families particularly hard-hit by the pandemic.
The letter was initiated by a coalition of six organizations: The Whitman-Walker Institute; the National LGBT Cancer Network; GLMA Health Professionals Advancing LGBTQ Equality; SAGE; New York Transgender Advocacy Group; and National Queer Asian Pacific Islander Alliance. The full letter text, full signer list, and additional organizational response resources can be found online at this link: https://cancer-network.org/coronavirus-2019-lgbtq-info.
###
About the National LGBT Cancer Network
The National LGBT Cancer Network runs a CDC funded public health network focused on eliminating tobacco and cancer health disparities. Due to the disproportionate impact COVID-19 will have on our population as a result of increased smoking and cancer rates, the Network has been actively creating resources for LGBTQ+ organizations to help respond to this unprecedented public health crisis. Learn more at cancer-network.org.
About Whitman-Walker
Whitman-Walker operates a community-centered enterprise that provides primary medical care, behavioral health care, dental care, and a range of health-related legal and support services, with specialties in LGBTQ+ and HIV care, to more than 20,000 individuals and families annually in the greater Washington, DC metropolitan region. The Whitman-Walker Institute was established to support the needs of our patients, and the communities at the heart of our mission, with clinical and behavioral health research, public policy advocacy on the national, regional and local levels, and clinical and community education. Learn more at www.whitman-walker.org.
OPEN LETTER ABOUT CORONAVIRUS AND THE LGBTQ+ COMMUNITIES
Over 100 Organizations Sign On To Letter Outlining Added Risk
As the spread of the novel coronavirus a.k.a. COVID-19 increases, many LGBTQ+ people are understandably concerned about how this virus may affect us and our communities. The undersigned want to remind all parties handling COVID-19 surveillance, response, treatment, and media coverage that LGBTQ+ communities are among those who are particularly vulnerable to the negative health effects of this virus.
Our increased vulnerability is a direct result of three factors:
- The LGBTQ+ population uses tobacco at rates that are 50% higher than the general population. COVID-19 is a respiratory illness that has proven particularly harmful to smokers.
- The LGBTQ+ population has higher rates of HIV and cancer, which means a greater number of us may have compromised immune systems, leaving us more vulnerable to COVID-19 infections.
- LGBTQ+ people continue to experience discrimination, unwelcoming attitudes, and lack of understanding from providers and staff in many health care settings, and as a result, many are reluctant to seek medical care except in situations that feel urgent – and perhaps not even then.
In addition, there are more than 3 million LGBTQ+ older people living in the United States. LGBTQ+ elders are already less likely than their heterosexual and cisgender peers to reach out to health and aging providers, like senior centers, meal programs, and other programs designed to ensure their health and wellness, because they fear discrimination and harassment. The devastating impact of COVID-19 on older people – the current mortality rate is at 15% for this population – makes this a huge issue for the LGBTQ+ communities as well.
LGBTQ+ communities are very familiar with the phenomena of stigma and epidemics. We want to urge people involved with the COVID-19 response to ensure that LGBTQ+ communities are adequately served during this outbreak. Depending on your role, appropriately serving our communities could involve any of the following actions:
- Ensuring that media coverage notes the particular vulnerabilities of any person with pre-existing respiratory illnesses, compromised immune systems or who uses tobacco products. While populations – like LGBTQ+ communities – can be at increased risk, it is important to note the overall state of health that contributes to any person’s increased vulnerability to contracting COVID-19.
- Ensuring health messaging includes information tailored to communities at increased risk for COVID-19, including LGBTQ+ populations. An example of such tailored messaging is including imagery of LGBTQ+ persons in any graphic ads.
- Providing LGBTQ+ individuals resources to find welcoming providers, such as the ones provided here, if they are experiencing symptoms like a cough or fever and need to seek medical attention.
- Ensuring funding to community health centers is distributed in a fashion that accounts for the additional burden anticipated by LGBTQ-identified health centers.
- Whenever possible ensuring health agencies partner with community-based organizations to get messaging out through channels we trust.
- Ensuring surveillance efforts capture sexual orientation and gender identity as part of routine demographics.
- Ensuring health workers are directed to provide equal care to all regardless of their actual or perceived sexual orientation, gender identity/presentation, ability, age, national origin, immigration status, race, or ethnicity.
- Ensuring that all COVID-19 responses take into account exceptionally vulnerable members of the LGBTQ+ communities, including our elders, bi people, and black and brown trans and gender nonconforming/nonbinary people.
- Since xenophobic responses are heavily impacting the Asian American communities, ensuring all communications and responses related to COVID-19 attempt to counter any such xenophobic responses, avoid racial profiling, and discourage the public from doing so as well.
- Ensuring LGBTQ+ health leadership, along with all providers and health care centers, are provided with timely and accurate information to disseminate.
As LGBTQ+ community and health leadership, the undersigned organizations offer to stand shoulder to shoulder with the mainstream health leadership to make sure we learn from history and do not allow any population to be disproportionately impacted or further stigmatized by a virus.
Initial signers:
National LGBT Cancer Network
GLMA: Health Professionals Advancing LGBTQ Equality
Whitman-Walker Health
SAGE
New York Transgender Advocacy Group
National Queer Asian Pacific Islander Alliance
Additional Signers:
Advocates for Youth |
Advocating Opportunity |
Alder Health Services |
Antioch University MFA Program |
Athlete Ally |
Atlanta Pride Committee |
Bi+ Georgia |
BiNet USA |
Bisexual Organizing Project-BOP |
Black Lives Matter Houston |
Bradbury-Sullivan LGBT Community Center |
Cal Poly Pride Center |
California LGBTQ Health and Human Services Network |
Callen-Lorde Community Health Center |
Capital Pride Alliance |
CARES |
Center on Halsted |
CenterLink: The Community of LGBT Centers |
Civil Liberties & Public Policy |
Cobb County Democratic Party |
Compass LGBTQ Community Centter |
Corktown Health Center |
Counter Narrative Project |
CreakyJoints & Global Healthy Living Foundation |
CrescentCare |
Darker Sister Center |
Deaf Queer Resource Center |
Desert AIDS Project |
Desi Queer Diaspora |
Disciples LGBTQ+ Alliance – AllianceQ |
Eastbay Stonewall Democratic Club |
Einstein Health Network Pride Program |
Equality Arizona |
Equality California |
Equality Federation |
Equality North Carolina |
Equitas Health |
Erie Gay News |
Evaluation, Data Integration, and Technical Assistance (EDIT) Program, ISGMH, Northwestern University |
Family Equality |
Fenway Health |
Fierce Pride |
Four Corners Alliance for Diversity |
Freedom Oklahoma |
GALAEI |
Garden State Equality |
Gay City: Seattle’s LGBTQ Center |
Gay Elder Circle |
Gender Equality New York, Inc. (GENY) |
Gender Justice League (Washington State) |
Georgia Equality |
GLAAD |
GLBT Alliance of Santa Cruz |
Greater Erie Alliance for Equality |
Greater Palm Springs Pride |
Harvey Milk Foundation |
Hetrick-Martin Institute |
HIV AIDS Alliance of Michigan |
HIV Medicine Association |
Horizons Foundation |
Howard Brown Health |
Human Rights Campaign |
Independence Business Alliance |
Indiana Youth Group |
Infectious Diseases Society of North America |
Inside Out Youth Services |
InterPride |
Iris House Inc |
JustUs Health |
Keystone Business Alliance |
Lambda Legal |
Lansing Area AIDS Network (LAAN) |
Lansing Association for Human Rights |
Legacy Community Health |
Lesbian,Bisexual, Gay, and Transgender PA Caucus, Inc. |
LGBT Center of Central PA |
LGBT Center of Greater Reading |
LGBT Center of Raleigh |
LGBT Elder Initiative |
LGBTQ Center OC |
Lyon-Martin Health Services, a program of HealthRight360 |
Mass Equality |
Matthew Shepard Foundation |
Mazzoni Center |
Milwaukee LGBT Community Center |
Minority Veterans of America |
Mossier Social Action and Innovation Center |
Nanook Diversity & Action Center |
National Center for Lesbian Rights |
National Center for Transgender Equality |
National Coalition for LGBT Health |
National Equality Action Team |
National LGBTQ Task Force |
National LGBTQ Task Force |
Newburgh LGBTQ+ Center |
No Justice No Pride |
Oakland LGBTQ Community Ctr. |
Oasis Legal Services |
Oklahomans for Equality |
Oklahomans for Equality |
One Colorado |
Openhouse |
Our Family Coalition |
Out Alliance |
Out And Equal |
Out Boulder County |
OutCenter of Southwest Michigan |
OutFront Kalamazoo |
OutFront Minnesota |
OutNebraska |
OutRight International |
Pennsylvania Youth Congress |
Persad Center, Inc. |
PFLAG National |
PFund Foundation |
Pizza Klatch |
Positive Women’s Network |
Pride Center of the Capital Region |
Pride Center Of Vermont |
Pride Community Center, Inc |
Pride Community Services Organization |
Princess Janae Place Inc |
Rainbow Community Center of Contra Costa County |
Rhode Island Public Health Institute |
Rockland County Pride Center |
San Diego Pride |
San Francisco AIDS Foundation |
San Francisco Voice and Swallowing |
San Francisco Voice and Swallowing |
SAVE – Safeguarding American Values for Everyone |
SERO Project |
SF LGBT Community Center |
Sisters PGH |
St. James Infirmary |
Still Bisexual |
The DC Center for LGBT Community |
The Gala Pride and Diversity Center |
The Lesbian, Gay, Bisexual & Transgender Community Center |
The LGBT Health Resource Center of Chase Brexton Health Care |
The LGBTQ Center Long Beach |
The LOFT LGBT Community Services Center |
The Montrose Center |
The Social Impact Center |
The Source LGBT+ Center |
The Trevor Project |
Thomas Judd Care Center |
Trans Empowerment Project |
Trans Lifeline |
Trans Youth Equality Foundation |
Transgender Education Network of Texas (TENT) |
Transgender Law Center |
Transgender Legal Defense & Education Fund |
TRANSnetwork |
Triangle Community Center |
Trillium Health |
TriVersity Center for Gender and Sexual Diversity |
Tucson Interfaith HIV AIDS Network Inc aka TIHAN |
Twin Cities Pride |
U.S. People Living with HIV Caucus |
UNIFIED-HIV Health and Beyond |
Washington County Gay Straight Alliance, Inc. |
We Are Family |
Wellness AIDS Services |
William Way LGBT Community Center |
Young Democrats of Georgia LGBTQ (Stonewall) Caucus |
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Only if health-care providers ASK if we’re LGBTQ+ can we know how COVID-19 is affecting our communities!
B yourself while keeping everyone around you safe! Show us how you’re masking up.
Wearing a mask doesn’t have to be drab! Show us how you’re expressing yourself, while keeping others safe.
BREAKING: we joined 170 national, state, and local organizations, in signing a 2nd open letter, calling for policy makers to address LGBTQ+ specific concerns surrounding COVID-19.
COVID-19 has changed our lives in many ways. If you have to go out, wear a mask! We care about your health.
We love you, but please don’t come too close! Physical distancing saves lives. Take care of yourself; take care of one another.
We can transmit COVID-19 before we show any symptoms. Cover your nose and mouth with homemade masks to protect yourself AND those around you. We’ve got to take care of each other.
Help us show the media, policymakers, and public health officials how we’re being impacted by #COVID19. Tell us your story at cancer-network.org/sharing-your-story/, and we will share them with other #LGBTQ organizations.
Stay safe. Learn to recognize the signs of the coronavirus.⠀
#lgbthealth
LGBTQ+ Increased Vulnerability to #COVID2019 We are more likely to smoke, be immunocompromised, and over 3 million of us are 65 and older. https://buff.ly/39JoNRu
#LGBTQCOVID2019 #LGBTQ
COVID-19 presents a difficult situation for LGBTQ+ communities. Over 3 million of us are 65 and older – if you know someone in need, have them call that SAGE helpline. https://buff.ly/39JoNRu
#LGBTQCOVID2019 #LGBTQ
Coronavirus: separating fact from fiction – “Chest binding WILL NOT increase one’s odds of getting sick with #COVID19,” said Dr. Arenberg from University of Michigan. His colleague Dr. Sagana agrees and ads, “Do not wear a binder so tight it reduces chest capacity, especially if you get any respiratory illness.” #trans #LGBTQ
The National LGBT Cancer Network is aware that LGBTQ+ people are worried about the potential impact of coronavirus on our health.
Special note: We strongly recommend you follow the CDC guideline for wearing a cloth mask anytime you go out of your house and see people.
Why are LGBTQ+ people at particular risk for coronavirus 2019?
Lesbian, gay, bisexual, transgender, queer, plus (LGBTQ+) people are at particular risk for coronavirus disease 2019 (or COVID-19) as a result of several factors:
We use tobacco at rates that are 50% higher than the general population. Coronavirus 2019 is a respiratory illness that has proven particularly harmful to smokers.
Higher rates of HIV and cancer among LGBTQ+ individuals mean that a greater number of us may have compromised immunity, leaving us more vulnerable to Coronavirus infection.
LGBTQ+ people experience health disparities. Health disparities affect the potential coronavirus 2019 impact on us in two ways:
- Access to care barriers leaves us less likely to get medical care, and
- Existing health disparities mean more of us live in a state of compromised health.
In addition, there are more than 3 million LGBTQ+ older people living in the United States. LGBTQ+ elders are already less likely than their heterosexual and cisgender peers to reach out to health and aging providers, like senior centers, meal programs, and other programs designed to ensure their health and wellness, because they fear discrimination and harassment. The devastating impact of COVID-19 on older people – new estimates show symptomatic people over 60 are 5x more likely to die compared to younger adults – makes this a huge issue for the LGBTQ+ communities as well.
Are there special precautions that LGBTQ+ people should take?
This is a time where widespread community response can slow transmission. As an LGBTQ+ person, the faster you take steps to reduce your potential transmission of the virus, the more community members (and others) you will help.
While we may experience several waves of this epidemic, experts still consider us to be in the first wave. Considering this, we are likely to be facing potential exposure for many months to come. The information about transmission is changing as scientists learn more, so it’s important people stay up to date with the latest information.
The challenge now is how to take steps for each of us to reduce both our personal risk and population risk as well. From what we know about transmission now, there are clear steps we can all take to reduce this risk.
There is evidence of transmission by people who appear healthy. These people may be presymptomatic (about to show symptoms) but the important point is they can transmit the virus without understanding they are sick. CDC long ago warned some of the greatest viral shedding occurs right before a person becomes symptomatic.
Prolonged close exposure to airborne droplets from the breathing of someone who is shedding the virus is thought to be the main route for transmission. To minimize this risk, try to minimize time spent in close quarters with other people inside. Moving outdoors greatly reduces the risk; there are extremely few known cases of outdoor transmission. Even mild breezes help disperse potentially infectious airborne droplets. Space also helps those droplets land or dry up before they get to you. Whenever possible keep 6’ away from other people and stay outside.
While there have been concerns about spread of the virus through touching infected surfaces, this is no longer thought to be the main way it is transmitted. Still, practicing good pandemic hygiene including frequent hand washing and avoiding touching your mouth, nose, or eyes will reduce your risk of any surface-related exposure.
To help avoid infecting others, wear cloth masks whenever you cannot maintain 6’ of distance from others. There is growing evidence that societies where mask use is common have lower transmission rates overall.
All smokers should know they can access free cessation services by calling or visiting 1-800-QUIT NOW.
What About Coronavirus and Sex?
See a great example of a fact sheet about sex and coronavirus here.
Fighting Social Isolation
This is a great time to reach out to friends and family, and anyone you think may be alone. And if you’re feeling lonely or isolated, don’t worry about bothering other people – reach out!
If you’re under 65 and feeling well, reach out to someone who may be older and/or have immune compromise (such as on-going cancer treatment, HIV infection, or autoimmune disease) to see if you can offer them support or help them navigate some of the online ordering systems.
Remember, due to COVID-19 we have to remember it’s important to stay physically distant whenever possible. But, we need to remain socially connected.
What should I do if I think I may have COVID-19?
Get tested. Your State Health Department website has resources to access testing in your area.
If you do not have a health provider you are comfortable with, there are several options for finding LGBTQ+ welcoming providers.
- GLMA has a directory of welcoming providers here.
- Human Rights Campaign lists welcoming hospitals and medical centers here.
- Federal Qualified Health Centers have been receiving guidance on how to be LGBTQ+ welcoming (and offer care for low income/uninsured persons). Find a local one here.
- The National LGBT Cancer Network has online directories for welcoming cancer screening and care providers. Find them here and here.
Contact your oncologist or health provider if you have a fever and respiratory problems (such as a dry cough or trouble breathing).
Background on Coronavirus 2019
Coronavirus disease 2019 (or COVID-19) is a respiratory illness caused by a novel (or new) coronavirus that was first identified in an outbreak in Wuhan, China, in December 2019. It is a respiratory illness that spreads from person to person through small droplets expelled when a person coughs or sneezes. While it started in China, it is not a Chinese Virus; it is a global pandemic affecting people worldwide.
Symptoms can range from mild to severe. They usually include a fever, dry cough, and shortness of breath. Currently there is an estimated symptomatic fatality rate of 1.4% for people with COVID-19; it is highest for people over 60, people with chronic conditions like heart problems, lung problems, or kidney problems, in smokers, and men. We have no information what the fatality rate might be for people with HIV or other immunosuppressed individuals, like those undergoing cancer care.
LGBTQ+ CORONAVIRUS RESOURCES:
- Family Equality | Coronavirus (COVID-19): How to Talk to Your Kids and What to Do At Home – Family Equality
- COVID-19 Guide for Trans People
MORE INFORMATION:
- Coronavirus: What Cancer Patients Need to Know
- Coronavirus Top Targets: Men, Seniors, Smokers
- How to Live in the Face of Fear: Lessons From a Cancer Survivor
- What People with HIV Need to Know About the New Coronavirus
- Psychological Responses to Quarantine, What To Expect & Do
- Stop Touching Your Face!
- How to Stop Touching Your Face
- A Simple Way You Can Prevent Infection and Illness
- How to Protect Yourself From the Flu During Cancer Treatment
- CDC: Coronavirus Disease 2019 (COVID-19)
- WHO: Coronavirus disease (COVID-19) advice for the public
We are grateful to Dr. Don Dizon, MD, FACP, FASCO, and William Jesdale for co-authoring this page, and providing our communities with updated information on COVID-19.
Dr. Don Dizon, MD, FACP, FASCO is an oncologist who specializes in women’s cancers. He is the director of women’s cancers at Lifespan Cancer Institute and director of medical oncology at Rhode Island Hospital.
William Jesdale, PhD is an epidemiologist with Massachusetts Medical School who is particularly interested in LGBTQ health and BRFSS data. Dr. Jesdale mentors doctoral students and teaches courses in Epidemiology in the Graduate School of Biomedical Sciences at the University of Massachusetts Medical School.
This page was last updated on Thursday, June 18, 2020.
1. Have you signed the open letter? The attachment below is a Press Release that organizational signers can use to announce their participation.
2. Community organizations can feel free to copy or link to our information page as long as they give us attribution.
3. All Open Letter signers will have access to the LGBTQ+ COVID 19 Social Media Toolkit and any additional resources we put out. In order to become a signer please fill out this form:
The Network has been actively creating resources for LGBTQ+ organizations to help respond to this unprecedented public health crisis. It is crucial that medical providers and public health authorities collect sexual orientation and gender identity data for COVID-19 cases in addition to data on race, ethnicity, age, sex and disability, in order to document and address the pandemic’s impact on minority communities. The tools below are intended to help organizations understand and advocate for the collection of sexual orientation and gender identity data.
- Collection of some news stories about what’s happening in different states. NJ, CA, CA, SF Chronicle CA, PA
- The recent bicameral congressional letter to HHS on data collection that just came out, press release on same.
- EQ CA is also all in on this, they co sponsored their state bill, they’ve met with their national Senators to get them to nudge the governor, met with governors staffers all over the state, pushed the largest counties, pushed a total of 22 congressional delegates to sign onto the bicameral letter above, and as you can also see above, been doing lots of press. Valerie there is the lead.
- Example of a town hall Garden State Equality just did on this point, it was their best attended webinar/FB live event. In the words of their Memb/Comms Director Jon: “SOGI data collection is the most critical issue for our community at this moment”:
- Additionally below are two letters from PA and RI. Other organizations can use these as models for how to advocate for LGBTQ+ data collection at the state and local level (feel free to copy them).