Ryan White Services Report Data CAPT Tracy Matthews Acting Director, Division of Policy and Data E. Amaka Nwankwo-Igomu Chief, Data Management Branch U.S. Department of Health and Human Services Health Resources and Services Administration HIV/AIDS Bureau February 5, 2014

Objectives At the end of this presentation, participants will be able to: Describe the Ryan White HIV/AIDS Program (RWHAP) and the HIV epidemic in the United States Discuss Ryan White Services Report (RSR) data results Identify the impact RWHAP has had on the HIV epidemic Identify planned future analyses using RSR data

Presentation Overview HIV Epidemiology RWHAP Background RSR Background Program Reach RSR Demographics RWHAP Funded Services Summary and Future Data

HIV Epidemiology in the United States

Overview CDC estimates that 1,148,200 persons ages 13 years and older are living with HIV infection; 207,600 (18.1%) are unaware of their infection (Source: CDC Fact Sheet HIV in the United States: At A Glance, February 2013) At the end of 2010, an estimated 888,921 adults and adolescents were living with diagnosed HIV infection in the United States and six dependent areas (Source: CDC slide set, Epidemiology of HIV Infection through 2011)

Ryan White HIV/AIDS Program Background

About the Ryan White HIV/AIDS Program The Ryan White HIV/AIDS Program (RWHAP) provides HIV-related services to more than half a million people each year First enacted in 1990 as the Ryan White CARE (Comprehensive AIDS Resources Emergency) Act Amended and reauthorized four times: in 1996, 2000, 2006, and 2009

About the Ryan White HIV/AIDS Program Largest Federal program focused exclusively on HIV/AIDS care Through a number of programs, called Parts, RWHAP works with cities, states, hospitals, community health centers and other organizations For individuals living with HIV/AIDS who have: o No health insurance (public or private) o Have insufficient health care coverage o Lack financial resources to get the care they need for their HIV disease

RSR Data Management Background

RSR Data Background In 2009, outpatient ambulatory medical care (OAMC), medical case management (MCM) and case management (CM) providers were required to report client-level data for the first time In 2010, all providers were required to report client- level data o Ryan White Services Report (RSR) The Ryan White Data Report (RDR) was retired in 2010 RSR refers to all RWHAP “client-level data”

RSR Background Data are reported annually during submission period o Calendar year data reported The HIV/AIDS Bureau needed to develop a data management process for client-level data o Six stage process

RSR Data Management Process Raw Data Files Clean #1 De- duplicate Merge Clean #2 Analytic Files months

RSR Data Management Process De-duplication o Probabilistic record linking approach o Unique eUCIs are considered unique Uses several demographic data elements Felligi-Sunter model used to assign each record pair a score based on the demographic data elements Threshold for accepting or rejecting match is established

RSR Data - The Details Important things to keep in mind: This is a new dataset and as such is not considered to be mature o 2011 data are preliminary o Data quality issues such as high missing/unknown values o Reflects data reported but may not fully reflect services provided

Ryan White HIV/AIDS Program Response to the Epidemic

Overview During calendar year 2011, an estimated 553,999 individuals received at least one RWHAP-funded service in calendar year (Source: preliminary Ryan White Services Report data, CY 2011) Based on CDC estimates, in the United States, RWHAP is serving 48% of estimated persons living with HIV infection (n= 1,148,200) and 62% of estimated persons living with diagnosed HIV infection (n=888,921)

Gender of Adults and Adolescents Living with Diagnosed HIV Infection as of the End of 2010 and RWHAP Clients, Calendar Year 2011 HIV Epidemiology source: CDC Slide set, Epidemiology of HIV Infection through Gender represents adult and adolescent cases living as of 12/31/2010. Ryan White HIV/AIDS Program source: RSR preliminary 2011 data. Gender represents clients who received at least one RWHAP-funded service in calendar year 2011.

Race/Ethnicity of Adults and Adolescents Living with Diagnosed HIV Infection as of the End of 2010 and RWHAP Clients, Calendar Year 2011 HIV Epidemiology source: CDC Slide set, Epidemiology of HIV Infection by Race/Ethnicity through Race/ethnicity represents adult and adolescent cases living as of 12/31/2010. RWHAP source: RSR preliminary 2011 data. Race/ethnicity represents clients who received at least one RWHAP- funded service in calendar year 2011.

Demographics

Ryan White Services Report, 2010 & 2011 Gender of Clients Served *Less than 1% of clients served were transgender. Gender was unknown or missing for 413 clients in 2010 and 233 clients in N = 553,766 N = 555,762

Ryan White Services Report, 2010 & 2011 Race/Ethnicity of Clients Served Race/ethnicity is unknown or missing for 13,100 clients in 2010 and 13,807 clients in Race and ethnicity required for all clients regardless of services received.

Ryan White Services Report, 2010 & 2011 Age of Clients Served* Birth year is missing for 220 clients in 2010 and 13 clients in Birth year required for all clients regardless of services received.

Ryan White Services Report, 2010 & 2011 Client Payer Source Payer source is unknown or missing for 78,463 clients in 2010 and 45,918 clients in Payer source is required for clients who received any core medical service or non-medical case management services. N = 466,819 N = 429,256

Ryan White Services Report, 2010 & 2011 Housing Status For Clients Served Housing status is unknown or missing for 60,346 clients in 2010 and 43,441 clients in Housing status is required for clients who received outpatient ambulatory medical care, medical case management, non-medical case management, or housing services.

Ryan White Services Report, 2010 & 2011 HIV Status of Clients Served HIV status is unknown or missing for 4,150 clients in 2010 and 4,919 clients in HIV status is required for clients who received outpatient ambulatory medical care, medical case management, or non-medical case management services.

Ryan White Services Report, 2010 & 2011 Annual Household Income for Clients Served Annual household income is unknown or missing for 76,134 clients in 2010 and 49,743 clients in N = 376,816 N = 416,653

Ryan White Funded Services

Top 10 Services Used, By Year Service Outpatient Ambulatory Medical Care*56.7%57.0% 2. Medical Case Management*52.9%54.2% 3. Case Management26.1%27.0% 4. Oral Health*15.8%16.1% 5. Transportation14.2%14.0% 6. Mental Health*13.6%13.8% 7. Health Education Risk Reduction12.8%12.0% 8. Food Bank12.0%10.7% 9. Psychosocial Support11.4%10.6% 10. Treatment Adherence9.4%10.3% *Core Medical Services

2010 Ryan White Services Report (RSR) Number of Clients Served and Visits for Core Medical Services Core Medical Services Clients Served Total Visits Mean Visits/Client Median Visits/ClientRange Outpatient Ambulatory Medical Care315,2701,868, – 353 Oral Health Care88,132320, – 100 Early Intervention Services22,20571, – 155 Home Health Care1,67025, – 362 Home & Community- Based Health Care1,80345, – 360 Hospice1963, – 365 Mental Health75,639511, – 361 Medical Nutrition Care44,328168, – 368 Medical Case Management294,2243,072, – 368 Substance Abuse - Outpatient25,922351, – 368

2011 Ryan White Services Report (RSR) Number of Clients Served and Visits for Core Medical Services Core Medical Services Clients Served Total Visits Mean Visits/Client Median Visits/ClientRange Outpatient Ambulatory Medical Care319,649 1,776, Oral Health Care89, , Early Intervention Services18,027 77, Home Health Care1,493 20, Home & Community-Based Health Care1,504 32, Hospice160 7, Mental Health76, , Medical Nutrition Care46, , Medical Case Management300,455 3,135, Substance Abuse - Outpatient24, ,

Ryan White Services Report, 2010 & 2011 Percentage of Clients Served By Core Medical Service Fewer than 1% of clients received the following services: home health care, home and community-based case, and hospice.

Ryan White Services Report, 2010 & 2011 Percentage of Clients Receiving Support Services* *Fewer than 1% of clients received the following services: childcare, developmental assessment, linguistics, permanency planning, rehabilitation, respite care, and substance abuse treatment, residential.

Summary of the Ryan White HIV/AIDS Program in Context

Summary of the Ryan White HIV/AIDS Program Compared to national surveillance data, the RWHAP serves a higher proportion of: o Women o Racial/Ethnic Minorities RWHAP serves almost half (48%) of estimated persons living with HIV infection (n= 1,148,200) Approximately 62% of estimated persons living with diagnosed HIV infection (n=888,921) are RWHAP clients

A Look at 2011 State Profiles

State-level information related to the Ryan White HIV/AIDS Program Data sources: o Health Resources and Services Administration o Census Bureau (Poverty and Health Insurance data) o Centers for Disease Control and Prevention (CDC) (HIV/AIDS Surveillance data) State Profiles Overview

State Profiles Content Section A — State Overview Section B — HIV/AIDS Epidemic Section C — Program Grantees and Funding Section D — Provider Characteristics Section E — Client Characteristics Section F — Services Section G — Clinical Data NEW! Section H — AIDS Drug Assistance Program Section I — Oral Health NEW! Section J — HHS Indicators NEW! Section K — National HIV/AIDS Strategy NEW!

Future/Next Steps

2014 Upcoming Data Releases o RSR 2012 Preliminary Data o Continuum of HIV care among Ryan White HIV/AIDS Program clients—United States, 2010 and 2011 (Doshi, R. et al. In Progress) National HIV/AIDS Strategy and Health and Human Services Indicators

HRSA/HAB HIV Care Continuum: Initial Concepts Cheever L. Clinical Infectious Diseases 2007;44:

CDC Stages of Care – 2009 National HIV Surveillance System & Medical Monitoring Project CDC. HIV in the United States: Stages of Care. July Hall HI, Frazier EL, Rhodes P, et al. JAMA Internal Medicine. Jun :1-7.

Persons in Care: Ryan White Services Report, 2010 and 2011

Retention in HIV Care and Viral Suppression Ryan White Services Report, 2010 and 2011 Retention in HIV care Numerator: At least 2 HIV care visits at least 90 days apart during the calendar year Denominator: HIV+, RWHAP-funded HIV care, visit dates available Viral suppression Numerator: HIV-1 RNA <200 copies/ml at the most recent check during the calendar year Denominator: HIV+, RWHAP-funded HIV care, visit dates & viral load available

HHS Indicators HHS INDICATORSDEFINITIONS HIV PositivityPercentage of HIV test that were HIV positive Antiretroviral Therapy (ART) Among Persons in HIV Medical Care Percentage of HIV positive clients who had at least one OAMC visit and were prescribed ART Viral Load Suppression Among Persons in HIV Medical Care Percentage of HIV positive clients who had at least one outpatient ambulatory medical visit, had at least one viral load reported, and the most recent viral load was <200 copies Housing StatusPercentage of clients with a known status whose status was HIV positive non-AIDS, AIDS status unknown, or AIDS who were unstably housed

To Ask a Question, Please Dial: And use the passcode: “HRSA” Please then press *1 to enter the question queue. Please mute your speakers when asking a question.

Amaka Nwankwo-Igomu Contact Information