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Letter to Secretary Azar from the Department of Health & Human Services

Dear Secretary Azar, In recent weeks, state and local officials have documented that communities of color are being disproportionately impacted by the COVID-19 outbreak.1 While anyone can be at risk for infection from the novel coronavirus, in the United States many systemic inequities, discrimination, and harmful social determinants of health have led to long-standing disparities in communities of color and other populations. As a result, COVID-19 is disproportionately leading to severe illness and mortality within these communities. Therefore, as organizations representing a truly diverse array of stakeholders, including consumers and patients, communities of color, faith groups, health providers, health industry and public health we urge the Department of Health and Human Services to address barriers to the collection, analysis and regular public reporting of detailed disaggregated demographic data on individuals with COVID-19 in order to equitably respond to this crisis. Without timely data, our public health system cannot effectively understand this pandemic, focus the response and address our national emergency. We appreciate that the CDC, alongside the agencies and providers that interface with patients and collect the data, is working diligently to ramp up surveillance in a moment of crisis. We acknowledge the challenges in doing so, given our antiquated public health surveillance systems and fragmented health care system. In fact, moments like these are why many of us have long called for substantive and sustained investments in our public health data infrastructure at the federal, state, tribal, territorial, and local levels. However, we also know that we cannot let vulnerable communities be overlooked because of these challenges. We urge the Department to empower the individuals and organizations that participate in the COVID-19 surveillance systems to robustly report timely and accessible disaggregated demographic data. If reporting entities, including providers, testing laboratories and public health agencies, collect data on only aggregate populations, the elevated risk of outbreaks among smaller but particularly exposed groups will be missed.2 In particular, we request that the Department update the COVID-19 surveillance systems to collect data on patients’ race, ethnicity, sex, age, primary language, sexual orientation, disability status, gender identity, and socioeconomic status in line with federal standards, and as a threshold, comport with the standards codified by Section 4302 of the Affordable Care Act.3 We also support ensuring this data are collected and reported using all appropriate privacy standards. Tracking demographic data for those who have been tested, infected, hospitalized, recovered, and died from COVID-19 helps the public health workforce identify groups that may have a higher likelihood to get sick and experience severe illness from COVID-19 as the pandemic progresses. It can help state, tribal and local agencies, health systems, hospitals, and health care providers invest in and direct resources to provide access to testing, healthcare, and social services for diverse populations with different needs. Finally, it can help policymakers prioritize and distribute resources based on anticipated need. As organizations that are deeply concerned that this pandemic may exacerbate our nation’s existing health inequities, we ask you to ensure our country has the tools it needs to effectively respond in this unprecedented crisis. Sincerely, Asian & Pacific Islander American Health Forum Trust for America’s Health 100 Black Men Of America, Inc. Academic Pediatric Association ACCESS Adhikaar Advocates for Youth Advocating Opportunity AF3IRM Hawaiʻi AF3IRM Sf Bay Area African American Ministers In Action AIDS Foundation of Chicago Alaska Federation of Natives Alliance for Aging Research Allies for Independence AlohaCare American Academy of Pediatrics American Academy of Physical Medicine & Rehabilitation American Association of Birth Centers American Association of People with Disabilities American Association on Health and Disability American Cancer Society Cancer Action Network American College of Obstetricians and Gynecologists American Congress of Rehabilitation Medicine (ACRM) American Diabetes Association American Federation of Teachers (AFT) American Geriatrics Society American Heart Association American Holistic Nurses Credentialing Corpopration American Kidney Fund American Lung Association American Muslim Health Professionals American Occupational Therapy Association American Pediatric Society American Physical Therapy Association American Public Health Association American Thoracic Society Amplify, Inc. Asian American Psychological Association Asian Americans Advancing Justice - AAJC Asian Americans Advancing Justice - Atlanta Asian Health Services Asian Pacific American Labor Alliance Asian Pacific Partners for Empowerment, Advocacy and Leadership (APPEAL) Asian Resources, Inc. Association of Asian Pacific Community Health Organizations (AAPCHO) Association of Maternal & Child Health Programs Association of Medical School Pediatric Department Chairs Association of Schools and Programs of Public Health Association of University Centers on Disabilities Athlete Ally Autistic Self Advocacy Network Bazelon Center for Mental Health Law Big Cities Health Coalition Biotechnology Innovation Organization Black Women's Health Imperative Brain Injury Association of America Bread for the World Breast Cancer Action Bronx Health REACH Bulosan Center for Filipino Studies, UC Davis California Center For Rural Policy California Healthy Nail Salon Collaborative California LGBTQ Health and Human Services Network California Pan-Ethnic Health Network Campaign for Tobacco-Free Kids Center for American Progress Center for Empowering Refugees and Immigrants Center for Law and Social Policy (CLASP) Center for Medicare Advocacy Center for Public Representation CenterLink: The Community of LGBT Centers Chinese-American Planning Council Christopher & Dana Reeve Foundation Chronic Sex Church World Service Coalition for Disability Health Equity Coalition of Asian American Children and Families Coalition of Labor Union Women Colorado Alliance for Health Equity and Practice Community Catalyst Community Health Councils Congregation of Our Lady of the Good Shepherd, US Provinces Connecticut Legal Rights Project Connecticut Legal Services, Inc. Dia de la Mujer Latina Disability Rights Education & Defense Fund (DREDF) Disabled In Action of PA DuPage Federation on Human Services Reform - Lombard, IL Empowering Marginalized Asian Communities Empowering Pacific Islander Communities (EPIC) Enlace Chicago Equal Rights Advocates Equality California Equality Labs Equality North Carolina Families USA Family Equality Federation of Protestant Welfare Agencies (FPWA) Fenway Health Fetal Alcohol Syndrome Information Network First Focus Campaign for Children (For HHS - First Focus on Children) Florida Institute for Health Innovation Florida Legal Services, Inc. FORGE, Inc. Freedom Network USA GLMA: Health Professionals Advancing LGBTQ Equality GoFORTH.pro Greater Hartford Legal Aid Haitian Bridge Alliance Hawaii Health & Harm Reduction Center Health Resources in Action HealthyWomen Hep B United Philadelphia Hep Free Hawaii Hispanic Federation Hispanic Health Network Hispanics in Philanthropy HIV Dental Alliance HIV Medicine Association Hmong Cultural Center of Butte County Hmong Innovating Politics (HIP) HopeWorks of Howard County Human Rights Campaign Idaho Immunization Coalition Illinois Association of Rehabilitation Facilities Illinois Collaboration on Youth Immunization Action Coalition In Our Own Voice: National Black Women's Reproductive Justice Agenda Indiana Immunization Coalition Indivisible Infectious Diseases Society of America Inter University Program on Latino Research International Community Health Services Japanese American Citizens League Johnson & Johnson Justice in Aging Kansas Appleseed Center for Law and Justice Keep the Promise Coalition Kentucky Equal Justice Center Khmer Girls in Action Korean Community Center of the East Bay Labor Council for Latin American Advancement (LCLAA) Lakeshore Foundation Latino Coalition for a Healthy CA Latino Commission on AIDS LatinoJustice PRLDEF Lawyers’ Committee for Civil Rights Under Law League of United Latin American Citizens (LULAC) Legal Aid & Defender Association, Inc. Legal Aid at Work Legal Council for Health Justice LGBT Technology Partnership & Institute Lupus and Allied Diseases Association, Inc. MANA, A National Latina Organization March of Dimes Mid-City CAN (Community Advocacy Network) Ministerial Health Fellowship Mississippi Center for Justice Mixteco/Indígena Community Organizing Project (MICOP) Modern Military Association of America MomsRising Movement Advancement Project Muslim Caucus of America NAACP National Association of County Behavioral Health & Developmental Disability Directors National Association for Rural Mental Health NASTAD National Advocacy Center of the Sisters of the Good Shepherd National Alliance on Mental Illness National Asian Pacific American Women's Forum (NAPAWF) National Association of Chronic Disease Directors National Association of Community Health Centers National Association of Community Health Workers National Association of Councils on Developmental Disabilities National Association of Hispanic Nurses National Association of Pediatric Nurse Practitioners National Association of Rehabilitation Research and Training Centers National Association of Social Workers National Association of Social Workers, CT Chapter National Association of State Head Injury Administrators National Black Nurses Association National Center for Lesbian Rights National Center for Parent Leadership, Advocacy, & Community Empowerment (National PLACE) National Center for Transgender Equality National Coalition of Ethnic Minority Nurse Association s National Community Action Partnership National Council of Asian Pacific Americans National Council of Asian Pacific Islander Physicians National Council of Jewish Women National Disability Rights Netork National Employment Law Project National Equality Action Team National Harm Reduction Coalition National Health Care for the Homeless Council National Health Law Program National Hispanic Council on Aging National Immigration Law Center National Indian Council on Aging National Institute for Reproductive Health (NIRH) National Latina Institute for Reproductive Justice National Latinx Psychological Association National League for Nursing National LGBT Cancer Network National Medical Association. National Minority Quality Forum National Network for Immigrant and Refugee Rights National Organization for Women National Partnership for Women & Families National Patient Advocate Foundation National Puerto Rican Agenda National REACH Coalition National Urban League National Women's Health Network National Women's Law Center National Working Positive Coalition Nebraska Appleseed Network for Environmental & Economic Resonsibility of United Church of Christ OCA - Asian Pacific American Advocates OutCenter of Southwest Michigan PA ADAPT Papa Ola Lōkahi Partnership for Inclusive Disaster Strategies Pediatric Policy Council People For the American Way PFLAG National Pharmaceutical Research and Manufacturers of America Physicians for Reproductive Health Planned Parenthood Federation of America Poligon Education Fund Poverty & Race Research Action Council Power to Decide Prevention Institute Pride at Work Public Advocacy for Kids (PAK) Public Justice Center Raising Women's Voices for the Health Care We Need RespectAbility RESULTS Revolutionary Love Project Rian Immigrant Center SAGE: Advocacy and Services for LGBT Elders SC Appleseed Legal Justice Center Service Employees International Union Services, Immigrant Rights & Education Network (SIREN) SHK Global Health Shriver Center on Poverty Law Sikh American Legal Defense and Education Fund (SALDEF) Silver State Equality-Nevada Society for Pediatric Research Society for Public Health Education South Asian Americans Leading Together (SAALT) South Asian Public Health Association (SAPHA) Southeast Asia Resource Action Center Southern New England Conference of the United Church of Christ Tennessee Justice Center The Arc of Illinois The Arc of the United States The Fresno Center The Gerontological Society of America The Health Trust The Immunization Partnership The Latino Coalition The Leadership Conference on Civil and Human Rights The National Puerto Rican Chamber of Commerce The New York Academy of Medicine The Praxis Projecct The Trevor Project The Wall Las Memorias Project UCLA Center for Health Policy Research UnidosUS Union for Reform Judaism United Spinal Association United States Hispanic Leadership Inst Universal Health Care Action Network of Ohio URGE: Unite for Reproductive & Gender Equity UsAgainstAlzheimer's Vermont Legal Aid, Inc, We All Rise Western Center on Law & Poverty Whitman-Walker Health and Whitman-Walker Institute WithinReach WomenHeart: The National Coalition for Women with Heart Disease Young Invincibles ZERO TO THREE

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