October 30, 2015

SMILE/PEACOC OVERVIEW
A Youth-Focused Linkage to Care (LTC)
Webinar for CDC and HRSA Project Officers
Facilitators:Bendu C. Walker, Project Director
Jessica Roy, National Coordinator
National Coordinating Center

Webinar
Provide Background and Implementation Overview of the

ATN Supported Linkage to Care Initiatives

SMILE in Caring for Youth (NICHD/ATN-CDC Collaboration; 2009)
PEACOC Project (NICHD/ATN-CDC-HRSA Collaboration; 2013)
Connect to Protect Coalitions (Mobilizing Communities since 2002)

Discuss Opportunities for CDC and HRSA to Support Local

Transition and/or Sustainability Planning

Funding for our LTC initiatives ends in February 2016, with close-out

extension budget through May 2016

The ATN
The Adolescent Medicine Trials Network for HIV/AIDS
Interventions (ATN) is a research network funded by
the NIH
Primary mission is to conduct research in HIV-infected and HIV at-

risk pre-adolescents, adolescents and young adults through age

24.
First clinical research group to address the challenges and unique

clinical management demands of HIV-infected adolescents, and the

prevention needs of at-risk youth through common protocols.
14 academic-medical institutions that carry out therapeutic,

behavioral and community protocols called Adolescent Medicine

Trial Units (AMTUs), commonly referred to as ATN sites

The National Coordinating Center (NCC)

Housed at Johns Hopkins University, School of

Medicine
Managerial hub for the ATNs Community Initiatives
We provide (to ATN & HRSA sites):
National level oversight to ensure fidelity to program and
protocol elements
Feedback on progress & performance
Big picture national perspective
Training, technical assistance and support
Were a conduit of information & resource sharing

nationally

2008

2009

2010

2011

2012

2013

2014

SMILE in Caring for Youth

Strategic Multisite Initiative for the Identification,
Linkage, and Engagement in Care of Youth with
Undiagnosed HIV infection

2015

Relevance & Evolution of SMILE

NICHD-CDC-ATN
Discussions

CDC Revised
Testing
Recommendations

2007

NHAS

NICHD-CDC
MOU Executed

2008

2133 Youth
Identified

SMILE
Implemented
as 3 site pilot

2009

2010

2011

2012

ATN Protocol developed

and SMILE extended to
all ATN sites

The White Houses National

HIV/AIDS Strategy (NHAS)
emphasizes the need to
seamlessly link HIV infected
persons with care.
2013

2014

2015 2016

SMILE 2 with added focus on addressing

structural barriers to youth linkage and
engagement into care.

By 2012, SMILE had identified over 2,000 HIV-infected youth, more

than seventy percent of whom had been linked to care at a total of
15 ATN sites across the US and Puerto Rico.

SMILE targets major

US metropolitan areas
and cities in which ATN
clinical sites are located.
In these locations, state &
local health departments
funded by the CDC for HIV
testing activities, work with the local ATN sites in the
implementation of this adolescent-specific program.

Improve identification of recently HIVinfected adolescents and young adults in

the U.S.
Facilitate a practical and meaningful
linkage to care at local ATN sites for HIVinfected youth

PROGRAM

Ensure engagement and maintenance of

care for HIV-infected youth at local ATN
sites
Conduct programmatic and process
evaluations and measures to determine
effectiveness of these endeavors.

RESEARCH
ATN 093
ATN116

ATN/NICHD
CDC
Funds a linkage to care
coordinator for case management,
tracking, and outreach
The SMILE Coordinator links
infected youth to youth-friendly
clinics and providers
Services of Coordinator and
clinical care are supported by
SMILE

The health departments provide

the SMILE Coordinator (acting as
agent of the health department)
with contact information

Collaboration established locally

via agreements (i.e., MOU) to
ensure coordinated planning,
and implementation, and
evaluation

Public Health Authority

HIPPAs 1996 Privacy Rule
The Privacy Rule permits disclosure of personal health information

(PHI), without authorization, to public health authorities who are

legally authorized to receive such reports for the purpose of
preventing or controlling disease, injury, or disability [45 CFR
164.512(b)(1)(i)]. Covered entities who are also a PHA may use, as
well as disclose, PHI for these public health purposes [45 CFR
164.512(b)(2)].
By acting together

with the local health department to ensure the

timely diagnosis and treatment of HIV infection, our local site is
acting as an extension of the PHA. This position is consistent with
the Health Insurance Portability and Accountability Act (HIPAA)
definition of a public health authority as including a person or entity
performing public health functions under a grant of authority from a
public health agency.

 Public Health Authority

Allows disclosure of PHI to LTC Coordinator without authorization.
LHD provides all contact information (including name, locating

information, testing site, type of test, whether notification has occurred

and date of test) on all eligible HIV Infected youth diagnosed through
their and their affiliate testing sites in regular timely manner.

Data Sharing Plan

Supports on-going communication between LHD and non-LHD

partners and the LTC Coordinator

How, when, and what type of data will be shared will depend on
how the LHD defines PHA

Key SMILE Definitions

Eligible Referrals Individuals between 12-24 years;

newly diagnosed or have not attended an HIV medical visit

in >6 months
Linkage to Care (LTC) Attending a 1st medical

appointment within 42 days(6 weeks) after receipt of HIV

positive test results
Engagement in Care (EIC) Attending a 2nd medical

appointment within 112 (16 weeks) after the initial LTC

medical visit
Retention in Care (RIC) Attending an additional medical

appointment at least 30 days and no more than 365 days

(52) weeks after the EIC visit

 Unprecedented relationships formed with

health depts. that forced communities to prioritize

HIV+ youth within the systems of care
Experience/skill of LTC Coordinator is

important for LTC and EIC

Structural barriers within various systems

impeded successful LTC/EIC

Barriers to LTC, and Systems to Target

Barriers (Examples):

Systems/Sectors:

Insurance/ Eligibility Requirements

Referral Process

Public Health /Health Care

Systems

Mental Health/
Substance Abuse

Government/Policy Makers,
National Substance
Abuse/Mental Health programs

Housing

Governmental Housing
Programs (Section 8/HOPWA)
Local CBOs

Cultural Competency

Health Care Systems; HIV

treatment clinics

Go

ATN 116: Structural Enhancements

to the SMILE Program
Duration: Three years (Oct 2012- Nov 2015)
Primary Objective
Do clinical and medical outcomes related to LTC/EIC/RIC improve,
as compared to before the completion of LTC-related Structural
Change Objectives (SCOs)?
Secondary Objectives
Where LTC outcomes have improved, what types of SCOs were
completed?
What communication systems, partners, structures were put in
place?

Connect to Protect (C2P)

Connect to Protect (C2P): Partnerships for
Youth Prevention Interventions: A multi-site
community research study supported by the ATN

Initiated in 2002
Currently implemented in 14 urban communities

Ultimate Outcome: Reduce HIV incidence and

prevalence among youth 12-24 years old through

community mobilization & structural changes

How C2P Operates

A community mobilization research study with focus on action

planning & strategic partnering

Each coalition determines locally relevant issues and solutions

(structural changes)
Each coalition develops their own operating procedures,

leadership structure & action plan

A central administrative body (NCC) provides TA and ongoing

feedback

Focus on Structural, Not Individual Level

Changes
Structural level changes:
Changes the context of the environment
Change doesnt rely on the individual

Population-focused
More sustainable

Individual level changes:

Requires (on-going) participation

New policy
requiring HIV
testing offered at
intake/discharge
within a countywide prison
system

One-one
counseling

Resource investment
Reaching one person at a time
Limited sustainability
Even when successful, person returns to unhealthy environment

Intervention

C2P
Community
Mobilization

LTC Sub
committees &
engagement
of LHD

Intermediate Outcomes
Structural Changes
Mental health
services
Substance use
treatment
Integrated
HIV/Sexually
Transmitted Infection
(STI) prevention
LTC SCOs
Simplified eligibility
criteria
Patient navigator
model for LTC
Integrated
treatment services
Transportation

SMILE in Caring
for Youth
Program

Ultimate Outcomes

Reduced
HIV Rates
among
youth

Improved
LTC, EIC and
RIC

 Promotes collaboration among providers

Follows youth for 3 medical appointments and up to 365 days after

3rd engaged in care visit
Offers case management services; acts as liaison until services
Local
Health Dept.
C2P Coalition
established
Testing Sites/PAs
Chairs/co-chairs C2P LTC subcommittee bringing barriers
LTC work
Test
identified
in
work
with
HIV+
youth, to coalition for SCO
Relationship
results
MOU/PHA
LHD/DIS
C2P Community
development
Coordinator
HIV-infected
Youth

Linkage to care
Engaged into care

LTC
LTC
Coordinator
Coordinator

Communication
around barriers
to care

Medical
Care
LTC Supervisor
ATN Medical
Care Site

Other Site

Other Site

 PROBLEM: FOUR newly diagnosed HIV+ youth

(in a single month) desired

SMILE linkage services, but could not be linked to HIV medical care
Barriers identified:

Takes up to 4 months to secure insurance through ACA

Some clients are denied coverage under ACA
Limited availability of appointments with private providers (4 month

wait w/private providers vs. 2 week wait w/public providers)

Lack of community capacity for procedures leads to increased

delays
High insurance premiums and deductibles
C2P next steps: Continue to engage ACA representatives at the Shelby

County Health Department to strategize (possible SCOs) and build

community capacity to improve LTC procedures

2009

2010

2011

2012

2013

2014

2015

2016

PEACOC (ATN 128)

Extends ATN116 to 4 HRSA

grantees in the region

RW grantees collaborate with the SMILE

PEACOC
A Multi-Agency
(HRSA-NICHD-CDC-ATN)
Collaboration

SMAIP Funds
2013-2016

Program to enhance local LTC efforts and

join in Connect to Protect (C2P)
activities intended to address structural
barriers to HIV care

Motivational Interviewing

Training for LTC Coordinators to

decrease refusal rates for linkage
efforts from benchmark levels
identified by SMILE; and
Evaluate the impact of PEACOC

on achievement of youth success

on HHS core indicator outcomes.

RWD sites began entering data into the Administrative Database in September, 2014
PTD Values

Program Totals

Range across
13 ATN Sites

Range across
4 RWD Sites

2283

Mean 167
(110-311)

Mean 28
(10-52)

Percent Eligible for

Linkage to Care (LTC)*

90%(2051/2283)

76-99%

70-100%

Percent of Cases
Linked to Care

78%(1595/2051)

57-90%

71-100%

Of LTC, percent
Engaged in Care

87%(1323/1519)

79-96%

57-93%

Of EIC, percent
Retained in Care

90%(1019/1137)

85-95%

50-100%

Number of Cases
Reported

This excludes youth that were out of jurisdiction or already linked with medical care at the time of
report to the program.

3 years

Youth-specific
Testing & Diagnosis
Barriers Identified:

Availability
Accessibility
Associated Stigma
Lack of Rapid Testing Availability
Lack of Education
State ID Required to Receive Test
Results
Timely Notification

Systems/Sectors Targeted:

State/Local Health Department

Foster Care
Juvenile Justice
Hospitals/clinics
Blood Banks
Faith-based
Schools

EXAMPLES of SCOs
NEW ORLEANS :Testing of youth upon intake at the
Youth Study Center (New Orleans area facility)
Outcome: Three new positives were identified and
linked to HIV medical care within the first year
PHILADELPHIA: CHOP began offering annual HIV
testing to patients 14 years old+
Outcome: In 1 year, a 46% increase in number of
HIV tests conducted among 14-24 yrs.
MEMPHIS: Interstate Blood Bank began new practices
of immediately referring (as soon as identified) all
HIV+ clients to the Shelby County Health Department
Outcome: Reduced referral time to within 7 days
of specimen collection (previously 6+ months from
date of test)

MIAMI: Miami Health Dept. started new practice of

conducting HIV/STD counseling and testing on high
school grounds
Outcome: 21 schools participated; 804 students
tested; 2 new positive were identified, enrolled in
SMILE, and linked to care

Youth-specific Linkage to Care

Barriers Identified:

Lack of awareness of where/how to

link
Delayed surveillance reporting
Lack of systematized procedures to
immediately link to care
Lack of tester/provider capacity
Proof of income eligibility to obtain
insurance coverage
Transportation

Systems/Sectors Targeted:

State/Local Health Department

Foster Care
Juvenile Justice
Hospitals/clinics (Public & Private)
Schools

EXAMPLES of SCOs
CHICAGO: OraSure Pharmaceuticals changed practice to
list SMILE sites as contact for HIV+ youth seeking medical
care
Outcome: All 13 SMILE sites/coordinators are listed in
national directory as LTC liaisons

DETROIT: Detroit Receiving Hospital Emergency

Department has new policy to refer HIV+ youth into care
when they test in the ED.
Outcome: Six referrals in < one year; five linked-to-care
BALTIMORE: Health Dept. started practice of providing free
transportation for first 2 medical appointments for newly
diagnosed and out of care HIV+ youth.

DENVER: Denver Health School based health centers

adopted Denver Healths Linkage to Care practices and
Clinical Guidelines for HIV Screening in Colorado.
Outcome: 16 school based health centers have new
policies
MIAMI & TAMPA: changed Ryan White Program practice to
exempt minors through age 26 from providing income
documentation
Outcomes: % of cases reported to SMILE that were
Accepting LTC services but not linked decreased from

EXAMPLES of SCOs

Youth-specific Engagement &

Retention
Barriers Identified:

Competing Priorities (basic needs)

Mental Health Challenges
HIV+ Youth Fall Out of Care when
Transitioning to Adult Care
Lack of Medical Home to ensure
Continuity of Care
Delay in ADAP application process
delays access to HIV treatment

Systems/Sectors Targeted:

Food Banks
Department of Transportation
State Government
State/Local Health Department
Hospitals/clinics (Public & Private)

BOSTON: MA Bay Transportation Authority began providing

Transit Access Pass (TAP) to HIV+ youth identified through
SMILE on the same day rather than the 4-6 week processing
time. Outcome: Practice change adopted for one year then
stopped. C2P efforts led to MBTA reviewing entire application
process and reducing processing time to 2 weeks for all
applicants. 95% of SMILE youth rely on TAP to attend HIV
medical appointments
MIAMI: State of FL passed amendment to public health statute to
allow at-risk and/or HIV/STI infected minors to consent to
outpatient mental health services without parental consent
WASHINGTON, DC: The Institute for Public Health Innovation
(IPHI) created a youth navigation program to aid HIV positive
youth transition to adult care
LOS ANGELES: CHLA offer comprehensive health care to youth
patients with unstable housing rather than referring to another
clinic
NEW ORLEANS: The Louisiana Office of Public Health will develop
a computerized version of the existing LAHAP application to
expedite the delivery of medication to HIV infected clients

Youth-specific Viral
Suppression
Barriers Identified:

Prescriptions refills for incarcerated

youth living with HIV ceased upon
release from detention centers
Insurance limitations prevent
prescription refills at accessible
locations

Systems/Sectors Targeted:

Department of Probation
Hospitals/Clinics serving adolescents
and young adults infected/affected
by HIV

EXAMPLES OF SCO
LOS ANGELES: LA County Probation Department
developed internal guidelines regarding post incarceration
placement of HIV positive youth within the system.
Outcome: Affects 22 juvenile detention facilities in LA
County. Based on this change, the LA County Probation
Department implemented a new policy requiring that
social workers at all facilities complete HIV 101 and LGBT
cultural competency training as part of their on-boarding

CHICAGO: The Core Clinic will increase accessibility of

ART for adolescents living with HIV and promote Viral
Suppression by enrolling all eligible 19-26 year olds in
new County Care Program which allows patient to refill
prescription at alternate community locations (e.g.,
pharmacy)

TRANSITION AND
SUSTAINABILITY PLANNING
Youth Linkage Initiatives beyond May 2016

Challenges and Opportunities

Despite CDC-ATN-HRSA collaboration the LTC Coordinator not

seen as collaborator PHA is denied; data sharing limited.

Capacity Building of LHD Leadership about SMILE Program

Need to develop a more systematic data sharing process

between testing sites and health care systems

Delayed reporting/identification and linkage of HIV+ individuals

Establishing or enhancing LTC Protocols with RFAs (for youth)

Shortening the LTC timeframe for increased accountability
Formalize/standardize procedures across grantees

Variation in LHD vs. SMILE Linkage to Care criteria

Challenges and Opportunities

Incentives for HIV testing causing many positives that are

repeat testers
Misrepresentation of newly diagnosed vs. out of care
Consider incentivizing post-test counseling, initial linkage to care or

PrEP visits

Limited youth-specific/youth-friendly programming, testers,

linkage and service providers

Having more youth-friendly, awesome relatable testers and

providers able to build rapport with youth

Consider regular training (annual, quarterly) to support youth
engagement

Preliminary Plans to Sustain LTC

Collaborate with Ryan White Grantors Office to establish a standard

for LTC practices that can be modeled after SMILE.

Reaching out to Ryan White service providers to adopt youth LTC, EIC and
RIC practices currently under the SMILE program
Develop youth specific LTC Protocols that DIS staff can implement

to support more successful outcomes along the COC

Working with local health department surveillance unit to develop protocols

supporting best practices to link youth to care and treatment for greater
engagement and retention in care outcomes
Continue to work on establishing PHA for more accurate data

capture and timely referrals

Continue to work with local health department to gain access to live data

leading to shorter time-lapse in linking youth to care and treatment services

Next Steps & Considerations

Join the dialogue locally (via C2P Coalitions)

Learn what sites have accomplished locally;
What impact has the local SMILE/PEACOC program had on youth

LTC in your city?

Hear what sites are thinking, planning re: transition or

sustainability;
Offer thoughts, suggestions regarding planned next steps
Make recommendations about others that should be engaged in
the dialogue or involved in the planning?