hiv housing care continuum implementation workbook

2

CONTENTS

Introduction ................................................................................................................................................................................. 3

The National HIV/AIDS Strategy & HUD ...................................................................................................................................... 4

CDC’s HIV Care Continuum ......................................................................................................................................................... 6

The Connection Between Housing & Health along the HIV Care Continuum ............................................................................ 9

Using your HIV Housing Care Continuum ................................................................................................................................. 12

The New York City HOPWA Care Continuum ............................................................................................................................ 15

Defining Your HIV Housing Care Continuum ............................................................................................................................. 17

Budget Considerations & Feasibility Issues ............................................................................................................................... 27

Appendix A: Glossary ................................................................................................................................................................. 30

Appendix B: Resources .............................................................................................................................................................. 33

Appendix C: Action Plan Template ............................................................................................................................................ 34

3

INTRODUCTION

In collaboration with HUD’s Office of HIV/AIDS Housing and the National AIDS Housing Coalition, Collaborative Solutions,

Inc. has been tasked with carrying out a comprehensive Technical Assistance (TA) initiative that will include a series of

webinars focused on the connection between stable housing and improved outcomes along the HIV Care Continuum. This

TA effort will advance the White House HIV Care Continuum Initiative and the goals established by the HIV Care

Continuum Federal Working Group by increasing the ability of the Housing Opportunities for Persons With AIDS (HOPWA)

grantees to measure health outcomes and to understand how stable housing impacts health status and access to health

care for persons living with HIV/AIDS.

Through guided discussions and strategic planning sessions, participants will develop strategies in their own communities

to:

1. Improve ability to measure client health outcomes;

2. Create strategic partnerships to build a local HIV Housing Care Continuum; and

3. Utilize local data to benefit clients by demonstrating the link between housing and health and engaging in cross‐

system advocacy efforts.

This workbook is designed as a webinar supplement to guide team discussions aimed at developing local HIV Housing Care

Continuums. By building and implementing an HIV Housing Care Continuum, agencies will develop strategic partnerships

that can lead to improved coordination between the housing and health care systems. The HIV Housing Care Continuum

also functions as a powerful advocacy tool that not only demonstrates the link between housing and health, but also

promotes cross‐system dialogue aimed at reducing new HIV infections and improving health outcomes for persons living

with HIV/AIDS.

Goal: To create an action plan to develop an HIV Housing Care Continuum

100% 99.50%95% 92%

73%

100%

86%

62% 60%51%

0%

20%

40%

60%

80%

100%

120%

Ever HIV‐diagnosed Ever Linked to HIVCare

Retained in HIV Carein 2014

Presumed everStarted ART

Suppressed ViralLoad

Example: NYC PLWHA & HOPWA Care Continuum, 2014

HOPWA Enrollees PLWHA in NYC

4

THE NATIONAL HIV/AIDS STRATEGY & HUD

Recent advances have shown that antiretroviral therapy (ART) not only improves the health of people living with HIV/AIDS

(PLWHA), but also reduces their risk of transmitting HIV to others by reducing the amount of virus in the body. By

ensuring that PLWHA are aware of their diagnosis and engaged in care, new infections can be dramatically reduced. In the

United States, this is central to the White House’s roadmap to address HIV: The National HIV/AIDS Strategy, updated for

2020 (NHAS). There are four primary goals for the NHAS:

Goal 1: Reducing new HIV infections

To successfully reduce the number of new HIV infections, there must be a concerted effort by the public and private

sectors, including government at all levels, individuals, and communities, to:

‐ Intensify HIV prevention efforts in communities where HIV is most heavily concentrated.

‐ Expand efforts to prevent HIV infection using a combination of effective, evidence‐based approaches.

‐ Educate all Americans with easily accessible, scientifically accurate information about HIV risks, prevention, and

transmission.

Goal 2: Increasing access to care and improving health outcomes for people living with HIV

Both public and private sector entities must take the following steps to improve service delivery for PLWHA:

‐ Establish seamless systems to link people to care immediately after diagnosis, and support retention in care to

achieve viral suppression that can maximize the benefits of early treatment and reduce transmission risk.

‐ Take deliberate steps to increase the capacity of systems as well as the number and diversity of available

providers of clinical care and related services for people living with HIV.

‐ Support comprehensive, coordinated, patient‐centered care for people living with HIV, including addressing HIV‐

related co‐occurring conditions and challenges meeting basic needs, such as housing.

Goal 3: Reducing HIV‐related health disparities and health inequities

Key steps for the public and private sector to take to reduce HIV‐related health disparities are:

‐ Reduce HIV‐related disparities in communities at high risk for HIV infection.

‐ Adopt structural approaches to reduce HIV infections and improve health outcomes in high‐risk communities.

‐ Reduce stigma and discrimination associated with HIV status.

Goal 4: Achieving a more coordinated national response to the HIV epidemic

Key steps include:

‐ Increase the coordination of HIV programs across the federal government and between federal agencies and

state, territorial, Tribal, and local governments.

‐ Develop improved mechanisms to monitor and report on progress toward achieving national goals.

In 2013, President Obama established the HIV Care Continuum Initiative. The Federal HIV Care Continuum Working Group

was created and tasked with developing recommendations and action steps to help meet the goals of the National

HIV/AIDS Strategy by focusing on improving rates of diagnosis and care. As a member of the Working Group, HUD is

carrying out the following action steps to implement the HIV Care Continuum Initiative:

‐ 1.4 SAMHSA, in collaboration with HRSA, CDC, and HUD, will support and rigorously evaluate the development

and implementation of new integrated behavioral health models to address the intersection of substance use,

mental health, and HIV.

5

‐ 2.3 HHS, VA, HUD, and DOL, in close collaboration with DOJ, will review social marketing and education campaigns

related to the care continuum and incorporate nondiscrimination and Health Information Privacy messages.

‐ 3.1 Federal agencies will expand upon HHS efforts outlined above and harmonize HIV data collection and increase

interoperability of HIV data systems to improve care continuum outcomes.

‐ 5.3 HHS (including CMS and the Indian Health Service), HUD, and DOL will collaboratively develop and disseminate

guidance on how both the Affordable Care Act and Medicaid expansion can be used to facilitate access to care,

prevention, and supportive services for PLWHA.

‐ 5.4 HUD and HHS will provide technical assistance and trainings to better coordinate and align the provision of

housing services with medical care for PLWHA.

In response to action step 5.4, HUD’s Office of HIV/AIDS Housing is collaborating with the National AIDS Housing Coalition

and Collaborative Solutions, Inc. to conduct TA focused on the connection between stable housing and improved

outcomes along the HIV Care Continuum. This TA effort focuses on increasing the ability of the Housing Opportunities for

Persons With AIDS (HOPWA) to create HIV housing care continuums in their communities. By building HIV housing care

continuums, HOPWA providers will be able to demonstrate the proportion of HOPWA beneficiaries that are engaged at

each stage of HIV care. This TA effort will advance the White House HIV Care Continuum Initiative and the goals

established by the HIV Care Continuum Federal Working Group by increasing the ability of HOPWA grantees to measure

health outcomes and to understand how stable housing impacts health status and access to health care for persons living

with HIV/AIDS.

6

CDC’S HIV CARE CONTINUUM

The HIV Care Continuum—sometimes referred to as the HIV Treatment Cascade or the HIV Care Cascade—is a model that

outlines the sequential stages of HIV medical care from diagnosis to viral suppression (a very low level of HIV in the body).

The HIV Care Continuum also shows the proportion of individuals living with HIV who are engaged at each stage of

care. The following chart shows, of the 1.2 million PLWHA in the U.S in 2012: 1,062,100 (87.2%) were diagnosed with HIV,

476,366 (39.1%) were engaged in HIV care, 441,422 (36.2%) were prescribed to ART, and only 368,338 (30.2%) achieved

viral suppression.

The U.S. HIV Care Continuum, 2012

Source: CDC National HIV Surveillance System and Medical Monitoring Project, 2013.

Diagnosis ‐ The HIV care continuum begins with a diagnosis of HIV infection. Of 87% of all PLWHA diagnosed,

approximately 13% (1 in 7 people living with HIV) were unaware of their infection. Individuals who do not know they are

infected are not accessing the care needed to remain healthy. Additionally, they can unknowingly pass the virus on to

others. Definition: The number of people who have been diagnosed and are living with HIV infection.

Engaged in Care ‐ Once diagnosed, it is important to connect with an HIV healthcare provider who can offer treatment and

prevention counseling. Because there is currently no cure for HIV, treatment is a lifelong process. To stay healthy, PLWHA

need to receive regular HIV medical care. Definition: The Medical Monitoring Project (MMP) data are used to estimate

those “engaged in care,” which MMP defines as the percentage of people living with HIV who had at least one HIV

medical care visit during the survey’s sampling period in the observed year. The National HIV Surveillance System (NHSS)

data are used to estimate those “in care,” which NHSS defines as the percentage of diagnosed individuals who had at least

one documented viral load or CD4+ test within the observation year. “Retained in care” refers to the percentage of

diagnosed individuals who had two or more documented viral load or CD4+ tests, performed at least three months apart

in the observed year.

0.00%

10.00%

20.00%

30.00%

40.00%

50.00%

60.00%

70.00%

80.00%

90.00%

Diagnosed Received Care Prescribed toART

VirallySuppressed

87.20%

39.10% 36.20%30.20%

7

Prescribed to Antiretroviral Therapy (ART) ‐ Antiretrovirals are drugs used to prevent a retrovirus, such as HIV, from

making copies of itself. ART is the recommended treatment for HIV and involves taking a daily combination of three or

more antiretroviral drugs from at least two different HIV drug classes. . Regardless of CD4 count or viral load, it is

recommended that all PLWHA receive ART treatment. ART can help PLWHA live longer, healthier lives, and it has been

shown to reduce sexual transmission of HIV by 96%. Definition: Estimate the number and percentage of people receiving

medical care that have a documented ART prescription in their medical records in the observed year.

Achieving viral suppression ‐ Viral suppression can be achieved with regular ART. While some of the virus remains in the

body during treatment, HIV levels are very low or undetectable. By reaching viral suppression, PLWHA can live healthy

lives and greatly reduce the chance of passing HIV on to others. Definition: Estimate the percentage of individuals whose

most recent HIV viral load within the observed year was less than 200 copies/mL.

WHAT DOES THE HIV CARE CONTINUUM SHOW?

13% (approximately 1 in 7 PLWHA) were unaware of their infection and therefore not accessing the care and treatment

they need to stay healthy and reduce the likelihood of transmitting the virus to their partners. In addition, PLWHA are

falling off at every stage along the HIV Care Continuum. 39% were engaged in HIV medical care, 36% were prescribed ART,

and 30% had achieved viral suppression. This means that only 3 out of 10 people living with HIV had the virus under

control.

WHY IS THE HIV CARE CONTINUUM IMPORTANT?

By examining the amount of PLWHA engaged in each stage of the HIV Care Continuum, we are able to

‐ Identify where gaps may exist in connecting PLWHA to care

‐ Implement system and service improvements to help PLWHA move from diagnosis to viral suppression along the

HIV Care Continuum

By doing so, more individuals can be connected to care, prescribed to ART, and stay engaged in care to reach viral

suppression.

8

There will be several points throughout the webinars where you will be encouraged to discuss questions with your team.

As you talk through the questions, you may want to take note of any strategies or action steps and add them to your

Action Plan, which can be found in the Appendix..

1. What is your greatest barrier to building your own HIV Housing Care Continuum?

(eg. multiple databases, collecting health indicators such as VL)

2. What can you focus on to overcome your barriers?

(eg. standardize health and housing definitions in databases, identify data elements needed, identify partners to

integrate databases)

9

THE CONNECTION BETWEEN HOUSING & HEALTH ALONG THE HIV CARE CONTINUUM

The CDC reports that more than 1.2 million people in the U.S. are living with HIV.1

While there is still no cure for HIV, national focus has turned to the HIV Care

Continuum Initiative, established by President Obama, to further advance federal

efforts to reduce new infections, increase access to care, and reduce HIV‐related

disparities. The HIV Care Continuum shows each step of care for PLWHA.2 In

2012, only 30% of all PLWHA in the U.S. had reached viral suppression. Targeted

efforts to engage PLWHA in care are needed, and HIV housing and health

providers must coordinate and collaborate to impact these health disparities. A

strong body of research findings, including an analysis conducted by the CDC,

show that housing status is a stronger predictor of HIV health outcomes than

individual characteristics such as gender, race, age, drug and alcohol use, mental

health issues, and access to supportive services.3

HIV TESTING & DIAGNOSIS

Timely HIV testing is the first critical step in effective HIV care and prevention. Nearly one in seven Americans (13%) with

HIV are unaware of their diagnosis, and too many PLWHA are diagnosed too late in the course of HIV infection to fully

benefit from care and treatment. The evidence shows that housing instability is linked to delayed HIV diagnosis and to

increased risks of acquiring and transmitting HIV infection. One study found that men who have sex with men (MSM) and

who experience homelessness or housing instability are over 15 times more likely than stably housed MSM to delay HIV

testing.4

GETTING & STAYING IN MEDICAL CARE

Housing instability is a formidable barrier to accessing and retention in HIV health care. One large study found that over a

12‐year period, PLWHA who lacked stable housing were significantly more likely than those who were stably housed to

delay entry into care.5 Additionally, research studies consistently find poorer housing status associated with lack of regular

visits for HIV primary care.6 For many PLWHA experiencing homelessness and housing instability, retention in regular HIV

care requires addressing a cluster of other physical and behavioral health issues in addition to poverty, housing need, and

other social issues.

GETTING ON ANTIRETROVIRAL THERAPY

Early antiretroviral (ART) treatment has the potential to dramatically reduce new infections and promote optimal health;

however, only 36% of all PLWHA are prescribed ART. Regardless of insurance, payer status, or other health services

considerations, multiple studies identify a lack of stable housing as one of the most significant factors limiting the use of

1 CDC. Monitoring selected national HIV prevention and care objectives by using HIV surveillance data—United States and 6 dependent areas—2012. HIV Surveillance Supplemental Report 2014;19(No.3). Published November 2014. 2 A review of research regarding how housing impacts health outcomes along the HIV Care Continuum can be found at https://www.hudexchange.info/resources/documents/The‐Connection‐Between‐Housing‐and‐Improved‐Outcomes‐Along‐the‐HIV‐Care‐Continuum.pdf 3 Office of National AIDS Policy (ONAP) (2013). Accelerating Improvements in HIV Prevention and Care in the United States through the HIV Care Continuum Initiative. The White House, July 15, 2013. Available at http://www.aids.gov/federal‐resources/national‐hiv‐aids‐strategy/hiv‐care‐continuum‐initiative‐fact‐sheet.pdf 4 Nelson, K.M., et al. (2010). Why the Wait? Delayed HIV Diagnosis among Men Who Have Sex with Men. J Urban Health, 87(4): 642–655. 5 Aidala, et al. (2007). Housing need, housing assistance, and connection to medical care. AIDS & Behavior, 11(6)/Supp 2: S101‐S115. 6 Aidala, A.A, et al. (2012). Housing status and the health of people living with HIV/ AIDS: A systematic review. Presented at the XIX International AIDS Conference, Washington, D.C., July 2012.

Why is this important?

Housing supports increase stability and connection to care for PLWH experiencing homelessness or unstable housing, and are consistently linked to improved HIV treatment access, continuous care, better health outcomes, and reduced risk of ongoing HIV transmission.

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ART.7 A recent study of men experiencing homelessness and living with HIV in San Francisco found that only 18% of those

who needed ART medications were taking them, due primarily to their inability to meet competing needs for food, hygiene

and shelter.8

ACHIEVING VIRAL SUPPRESSION

Lastly, viral suppression is the main treatment goal for all PLWHA. Unfortunately, only 30% of all PLWHA in the U.S. are

benefiting from the treatment options to keep the HIV virus under control and meet viral suppression. PLWHA experiencing

homelessness are less likely to be virally suppressed, have lower CD4 counts, and are in worse overall physical and mental

health, compared to otherwise similar PLWHA who are stably housed.9

WHY IS IT IMPORTANT TO TRACK HOUSING & HEALTH TOGETHER?

Evidence continues to show that housing instability and homelessness have negative effects on the health of PLWHA and

that housing assistance improves HIV health outcomes at each stage of the HIV Care Continuum. Housing assistance

increases stability and connection to care for PLWHA experiencing homelessness or unstable housing, and is consistently

linked to improved HIV treatment access, continuous care, better health outcomes, and reduced risk of ongoing HIV

transmission.10

PLWHA are vulnerable to housing instability and are often at risk of becoming homeless. In fact, 50% of PLWHA will have

some form of a housing crisis in their lifetime.11As reported in the HOPWA Consolidated Annual Performance and

Evaluation Report (CAPER), housing stability for PLWHA is defined by the type of housing situation a client is in during or

upon exit from the HOPWA program. Permanent housing includes ownership or rental of a unit (unsubsidized or other),

or another type of housing that is expected to be ongoing, i.e., where a lease or other agreement gives them a right to

stay indefinitely. Using the current HUD HMIS and Continuum of Care (CoC) definitions for “unstably housed and at‐risk of

losing their housing,” housing instability may be evidenced by:

‐ Frequent moves because of economic reasons;

‐ Living in the home of another because of economic hardship;

‐ Being evicted from a private dwelling unit;

‐ Living in a hotel or motel not paid for by a charitable organization;

‐ Being discharged from a hospital or other institution; or

‐ Otherwise living in housing that has characteristics associated with instability and an increased risk of

homelessness.

For example, data from the Ryan White HIV/AIDS Program shows that of all clients in the U.S. in 2012, 19,702 (4.1%) were

unstably housed and 62,468 (12.8%) were temporarily housed.12 HOPWA performance profiles for 2014/2015 indicate

that of all clients receiving Short‐Term Rent, Mortgage and Utility assistance (9,262), 2% were unstable and 55% were

only temporarily stable. In both the HOPWA and Ryan White programs, we consistently see a high level of housing need

among PLWHA.13 Estimates include that 50% of PLWHA will have some form of a housing crisis in their lifetime.14

7 Doshi, R., et al. (2012). Correlates of antiretroviral utilization among hospitalized HIV‐infected crack cocaine users. AIDS Research and Human Retroviruses, 28(9): 1007‐1014; 8 Riley, E. D., et al. (2012). Social, Structural and Behavioral Determinants of Overall Health Status in a Cohort of Homeless and Unstably Housed HIV‐Infected Men. Plos ONE, 7(4), 1‐7. Available at http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3338834/ 9 Kidder, D., et al. (2007). Health status, health care use, medication use, and medication adherence in homeless and housed people living with HIV/AIDS, Am J Public Health, 97(12): 2238‐2245. 10 Aidala, et al. 2012. 11 Aidala, et al. 2012. 12 HRSA. (2012). The United States — State Overview. Retrieved July 17, 2015, from http://hab.hrsa.gov/stateprofiles/State‐Overview.aspx 13 HUD. (2015). HOPWA Performance Profiles – National Program. Retrieved July 17, 2015, from https://www.hudexchange.info/resource/reportmanagement/published/HOPWA_Perf_NatlComb_2014.pdf 14 Aidala, et al. 2012.

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Unstable housing for PLWHA may often be overlooked if program assessments do not include more robust information on

the relative stability of clients currently living in a situation that is judged “permanent” and therefore stable by definition.

For instance, including a measure of “housing burden” in an assessment can provide important information about the

affordability of the housing. If the housing burden assessment shows that a household is paying more than 30% of income

for rent and utilities – or even higher levels such as 50% or more ‐ that can be an indication that they may not be able to

sustain that housing in the future. Such assessments, along with case manager visits and financial counseling, are

recommended elements for most HOPWA programs. Unfortunately, issues with housing stability can be difficult to spot

and can quickly lead to homelessness if not addressed early on. Additionally, many assessments do not adequately

address housing stability or provide a connection to information on client health outcomes. This illustrates the importance

of not only collecting the proper information, but also developing ways to share it between systems, including RWHAP,

HOPWA and Homeless CoC providers.

WHY SHOULD WE BUILD AN HIV HOUSING CARE CONTINUUM?

1. Illustrate overall engagement in care and treatment for PLWHA receiving HIV housing assistance

2. Benchmark against US and community

3. Identify successes and gaps in care and treatment experienced by PLWHA receiving HIV housing assistance

4. Improve health outcomes by implementing system and/or service enhancements to programs

5. Inform policy‐makers on program development

6. Align with national initiatives

a. National HIV/AIDS Strategy (2015)

b. White House HIV Care Continuum Initiative (2013)

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USING YOUR HIV HOUSING CARE CONTINUUM

By tracking the proportion of PLWHA that have been reached by your HOPWA program through the four steps

(Diagnosed, Engaged in Care, Prescribed to ART, and Virally Suppressed) along the HIV Care Continuum, you can identify

gaps and, over time, pinpoint how, where, and when to intervene to improve health outcomes along the HIV Housing

Care Continuum. Ultimately, this will help reduce HIV transmission and new infections, as well as improve health

outcomes for PLWHA. On a national level, the HIV Care Continuum will continue to be used to make decisions about

priority resources and populations, as well as to monitor progress on a national level.

WHAT CAN YOU DO ON A LOCAL LEVEL?

Research new approaches

to help people stay in care

and adhere to their

medication through

structural interventions,

such as housing.

Support the use of

surveillance data to identify

people out of care and link

them to and engage them in

care.

Employ your Continuum as a

program planning tool to

determine where

improvements are most

needed and target resources

accordingly in your agency.

Utilize your Continuum as a

community planning tool to

galvanize the community to

address the gaps and needs

of PLWHA in your

community.

Develop an education campaign

to help health care providers

integrate simple prevention

approaches into routine care for

people living with HIV, as well as

advocate for increased HIV

testing.

Use your Continuum as a tool for sharing progress towards

addressing the epidemic in your community

13

EXAMPLE: NYC HOPWA CARE CONTINUUM

Based on the development of their HOPWA Care Continuum, NYC plans to utilize this model to

‐ Identify what is working and what is not

‐ Advocate for the continued emphasis on engagement in HIV care and treatment among clients

‐ Enhance their holistic approach to addressing clients’ needs, including mental health and substance use services,

which are linked to HIV care engagement and viral suppression

‐ Focus on populations vulnerable to poor outcomes

‐ Monitor the HOPWA Care Continuum outcomes over time

‐ Inform policy‐makers on successful HIV care and treatment outcomes among HIV housing clients, include the

importance of housing services

‐ Highlight the usefulness of surveillance data for program evaluation of housing services

‐ Identify best practices – successful program models – to replicate and disseminate within the HIV community

‐ Make recommendations on policy and program design that strengthen the link between housing services and HIV

Care Continuum success

3. How can you use your HIV Housing Care Continuum to demonstrate the link between housing and

health?

(e.g. developing a local education strategy centering around the HIV Housing Care Continuum and housing

and health research)

4. How can you use your HIV Housing Care Continuum to engage in cross‐system advocacy efforts?

(e.g. work with local CoC to engage in prevention, testing and street outreach efforts)

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5. How do you plan to use your HIV Housing Care Continuum as a baseline for evaluation? What must be

done?

(e.g. work with local surveillance department to develop a timeline for updating the HIV Housing Care

Continuum once in place)

6. How can you use your HIV Housing Care Continuum to garner additional resources? What must be done?

(e.g. utilizing the local HIV Housing Care Continuum in foundation applications to further state that

housing impacts HIV health)

7. How can you use your HIV Housing Care Continuum to build enhanced collaborations and partnerships? What must

be done?

(e.g. local CoC, surveillance department, Ryan White providers, public housing authorities)

15

THE NEW YORK CITY HOPWA CARE CONTINUUM

In 2014, there were estimated to be 119,550 PLWHA in New York City. Through local surveillance data, the City developed

a HIV Care Continuum that tracked the stages of HIV care for all PLWHA in NYC. Of all PLWHA diagnosed, they discovered

that only 60% were presumed to have started ART and only 51% had reached viral suppression.

METHODOLOGY

Based on the New York City Department of Health and Mental Hygiene’s surveillance methods, definitions, and data, the

New York City HOPWA Program developed an NYC HOPWA Program Care Continuum.

Sample population: Any PLWHA that received HOPWA services in 2014 (N=35,087).

Data Sources:

‐ The HOPWA program database was used to report on enrollment, services, and housing history.

‐ The NYC HOPWA Surveillance Registry (HSR) was used to collect AIDS and HOPWA diagnoses, as well as laboratory

reporting of test results including CD4 counts and viral loads (VLs) and pertinent demographics.

Health Indicator Definitions:

‐ Infected: Estimate based on assumption that 86% of infected are diagnosed

‐ Diagnosed: Diagnosed, reported to NYC HOPWA surveillance registry, and presumed to be living in 2014

‐ Linked to Care: Any viral load or CD4 test since 2001, at least 8 days after date of HOPWA diagnosis

‐ Retained in Care in 2014: Any viral load or CD4 test in 2013

‐ Initiated ART: Viral suppression [≤200 copies/mL] at any point since 2001

‐ Achieved Viral Suppression: Last viral load in 2014 was ≤200 copies/mL

100%

86%

62% 60%51%

0%

20%

40%

60%

80%

100%

120%

Ever HIV‐diagnosed

Ever Linked toHIV Care

Retained in HIVCare in 2014



NYC PLWHA Care Continum, 2014

16

HOPWA program data were then matched to the NYC HOPWA Surveillance Registry based on a complex algorithm of

identifiers. .

Comparing the NYC PLWHA and the NYC HOPWA Care Continuum, HOPWA beneficiaries show higher engagement at each

stage of the HIV Care Continuum. Of all HOPWA beneficiaries diagnosed, 99.5% were linked to care, 95% were retained in

care, 92% were presumed to have ever started on ART, and 73% reached viral suppression.

.

100% 99.50%95% 92%

73%

0%

20%

40%

60%

80%

100%

120%

Ever HIV‐diagnosed

Ever Linked toHIV Care

Retained in HIVCare in 2014



NYC HOPWA Care Continuum, 2014

100% 99.50%95% 92%

73%

100%

86%

62% 60%51%

0%

20%

40%

60%

80%

100%

120%

Ever HIV‐diagnosed Ever Linked to HIVCare

Retained in HIV Carein 2014



NYC PLWHA & HOPWA Care Continuum, 2014

HOPWA Enrollees PLWHA in NYC

17

DEFINING YOUR HIV HOUSING CARE CONTINUUM

It is recommended that communities build a local HIV Housing Care Continuum designed to track the health outcomes of

PLWHA who receive HOPWA‐funded and/or other HIV housing services. This can be done on an agency level or on a

community level based on local circumstances and available data. These health outcome results can then be compared to

the results demonstrated by the local HIV Care Continuum, which tracks the health outcomes of the total population of

PLWHA in the community. By doing so, communities will be able to:

1. Demonstrate the impact of HOPWA

2. Demonstrate the impact of the broader HIV Housing System

8. Which type of HIV Housing Care Continuum will you develop?

Community‐Level Agency‐Level Both

Community‐Level HIV Housing Care Continuum

Using surveillance data provides a comparison of all

PLWHA in your community to those receiving

HOPWA‐funded services in your community

All PLWHA in your community

All PLWHA receiving

HOPWA‐funded services

(and/or HIV housing

services) in your

community

Explore further by

Housing Type

Agency‐Level HIV Housing Care Continuum

Using agency data provides a comparison of all

agency clients to those clients that are receiving


All HIV+ clients in your agency

All clients receiving


(and/or HIV housing

services) in your agency

Explore further by

Housing Type

OPTIONS FOR DEVELOPING A HIV HOUSING CARE CONTINUUM

Circle your path or make up your own based on your data sources.

Source: New York City’s Department of Health and Mental Hygiene

Option

HOPWA data source

Client‐level program data reported to

grantee

HIV surveillance data accessible to grantee

Process for linking program data with

surveillance

Clinical data source

Who prepares the HIV Care Continuum

A

HOPWA grantee database

Yes

Direct access, line level data

Internal matching

Surveillance

Grantee assembles

B


Yes

Indirect access

Data request to HIV surveillance program

Surveillance

HIV surveillance program shares mertics; grantee

assembles

C

HOPWA provider database

Yes (clinical indicators included)

No

NA

Self‐report

Grantee assembles

D


No

NA

NA

Self‐report

HOPWA providers share metrics; grantee

assembles

E

HOPWA provider client records

No

NA

NA

HOPWA client record abstraction


assembles

19

COMMUNITY EXAMPLE

The HOPWA grantee has three project sponsors all funded under HOPWA and Ryan White. The grantee utilizes CAREWare for all HOPWA project sponsors, which

captures client‐level program data. The grantee’s plan is to work with the local surveillance department to get HIV surveillance data for all the HOPWA

organizations that will make up their HIV Housing Care Continuum (*Action Step). While they will rely on the surveillance department to outline the appropriate

process to receive the surveillance data, they plan to request the data from the surveillance department and the surveillance department will import the HIV

surveillance data to CAREWare. The HOPWA grantee will then de‐duplicate the client records in CAREWare and prepare the HIV Housing Care Continuum.

Option

HOPWA data source

Client‐level program data reported to grantee

HIV surveillance data accessible to grantee

Process for linking program data with

surveillance

Clinical data source

Who prepares the HIV Care Continuum

A


Yes

Direct access, line level data

Internal matching

Surveillance

Grantee assembles

B


Yes

Indirect access

Data request to HIV surveillance program

Surveillance

HIV surveillance program shares mertics; grantee

assembles

C


Yes (clinical indicators included)

No

NA

Self‐report

Grantee assembles

D


No

NA

NA

Self‐report


assembles

E

HOPWA provider client records

No

NA

NA

HOPWA client record abstraction


assembles

20

After reviewing the “Options for Developing a HIV Housing Care Continuum”:

9. Do any of the paths provided work for you?

A B C D E 10. Who needs to be involved in building your HIV Housing Care Continuum?

Name Organization Role in building the HIV Housing Care Continuum

11. How do you plan to get these individuals involved and invested in building your HIV Housing Care Continuum?

21

SAMPLE POPULATION

To determine your sample population, you must determine from what housing intervention you can obtain client‐level data.

12. What are your HOPWA funded housing activities?

PHP STRMU Facility Based TBRA

13. Can you get client‐level data engaged in these HOPWA funded housing activities?

PHP STRMU Facility Based TBRA

INDICATORS & MEASURES

Now that you have your sample population, you must determine the health indicators you will include in your HIV Housing Care Continuum and how you

will measure them:

CDC’s Definitions

Source: CDC’s Understanding the HIV Care

Continuum, December 2014

NYC’s Definitions

Source: DOHMH oral

presentation at IAPAC

Conference, June 30, 2015

14. What are your definitions?

Diagnosed with HIV Infection

The number of people who have been diagnosed

and are living with HIV infection is calculated as

part of the HIV prevalence estimate.

Diagnosed, reported to

NYC HIV surveillance

registry, and presumed to

be living in 2014

22

Linked to Care

Measures the percentage of people diagnosed

with HIV in a given calendar year that had one or

more documented viral load or CD4+ test within

three months of diagnosis. 15

Any viral load or CD4 test

since 2001, at least 8 days

after date of HIV diagnosis

Engaged in Care

The percentage of people living with HIV who had

at least one HIV medical care visit during the

survey’s sampling period in the observed year.


in 2014

15 Note: Because linkage to care is based on a different denominator than other indicators in the continuum – i.e., people diagnosed in a single year – it cannot be directly compared to other steps in the continuum. Therefore, linkage to care is often shown in a different color or separately from the other steps in the continuum.

23

In Care

The percentage of diagnosed individuals who had

at least one documented viral load or CD4+ test

within the observation year

NA

Retained in Care

The percentage of diagnosed individuals who had

two or more documented viral load or CD4+ tests,

performed at least three months apart in the

observed year.


in 2014

24

Prescribed ART

The percentage of people receiving medical care

and who have a documented ART prescription in

their medical records in the observed year

Viral suppression [≤200

copies/mL] at any point

since 2001

Viral Suppression

The percentage of individuals whose most recent

HIV viral load within the observed year was less

than 200 copies/mL.

Last viral load in 2014 was

≤200 copies/mL

25

DATA SOURCES

Now that you have defined your housing and health indicators, you need to determine where you are going to get

your data:

15. We HAVE access to the following data sources…

HOPWA grantee database HOPWA provider database Client records

Client‐level program data HIV surveillance data Other: 16. Based on our client population and health indicators, we NEED access to the following data sources…

HOPWA grantee database HOPWA provider database Client records

Client‐level program data HIV surveillance data Other: 17. How are you going to get access to the data sources you need?

18. What are you going to do to connect the data systems?

26

19. What steps will you have to take to connect your HIV Housing Care Continuum (based on identified sample

population) to your community’s overall HIV Care Continuum (based on the total population)?

27

BUDGET CONSIDERATIONS & FEASIBILITY ISSUES

EXAMPLE: NEW YORK CITY’S CONSIDERATIONS & ISSUES

20. Who manages your community’s HOPWA program [organization, type of agency (i.e. Health Department, HIV

housing and supportive services provider), formula or competitive]?

The New York City Department of Health and Mental Hygiene (DOHMH) manages the HOPWA formula program

for NYC Eligible Metropolitan Statistical Area (EMSA). DOHMH subcontracts (100+ contracts) with community‐

based organizations for the provision of housing and related support services.

21. Who is running the surveillance data program? The city, state, or county?

DOHMH (i.e., City/local health department) manages HIV surveillance data for New York City. The New York State

Department of Health collaborates with DOHMH; however, DOHMH is responsible for day‐to‐day administration

of HIV surveillance data.

22. What are the state laws that impact what data can be accessed from the surveillance data program?

New York State has stringent laws that outline for what purposes surveillance data can be accessed. Data may be

accessed and used for program evaluation.

23. Can the HOPWA grantee access the surveillance data through a permission process?

The HIV surveillance unit with DOHMH grants access to the HOPWA unit to access data for purposes of creating

the HIV Housing Care Continuum. The access is limited and only accessible through coordination with the HIV

surveillance unit.

24. Will the HOPWA grantee have to send their data to the surveillance data program for them to match and give

back deidentified and aggregate?

Line‐level client data is accessed for purposing of creating HIV Housing Care Continuum; however, data reported

publicly is de‐identified and in aggregate.

25. Who has the capacity and availability to manage this data matching process and develop the HIV Housing Care

Continuum?

An evaluation specialist (i.e., Masters in Public Health) runs the data match and created the HIV Housing Care

Continuum.

26. Will you need additional funding to complete this process?

In NYC, existing staff are being used to complete this quarterly process of generating the HIV housing care

continuum.

Other considerations:

Data lag and availability

o Surveillance data usually has a lag due to receipt of data received from laboratories

o Surveillance unit has to clean data – time consuming process

Confidentiality

o Is staff accessing data converse with local, state, and federal confidentiality regulations

and guidelines pertaining to HIV? HOPWA? Ryan White?

28

ADDITIONAL DECISION POINTS

As a team, walk through the following questions to determine additional decision points and action steps you will

need to complete to develop and implement your HIV Housing Care Continuum.

20. Who manages your community’s HOPWA program [organization, type of agency (i.e. Health Department, HIV

housing and supportive services provider), formula or competitive]?

21. Who is running the surveillance data program? The city, state, or county?

22. What are the state laws that impact what data can be accessed from the surveillance data program?

23. Can the HOPWA grantee access the surveillance data through a permission process?

29

24. Will the HOPWA grantee have to send their data to the surveillance data program for them to match and give

back deidentified and aggregate?

25. Who has the capacity and availability to manage this data matching process and develop the HIV Housing Care

Continuum?

26. Will you need additional funding to complete this process?

30

APPENDIX A: GLOSSARY

CDC’S HIV CARE CONTINUUM DEFINITIONS16

HIV prevalence: CDC estimates the total number of people living with HIV – whether diagnosed or not.

Diagnosed with HIV infection: The number of people who have been diagnosed and are living with HIV infection.

Linked to care: Measures the percentage of people diagnosed with HIV in a given calendar year that had one or

more documented viral load or CD4+ test within three months of diagnosis. Because linkage to care is based on a

different denominator than other indicators in the continuum – i.e., people diagnosed in a single year – it cannot

be directly compared to other steps in the continuum. Therefore, linkage to care is often shown in a different

color or separately from the other steps in the continuum.

Engaged or retained in care: The Medical Monitoring Project (MMP) data are used to estimate those “engaged in

care,” measured as the percentage of people living with HIV who had at least one HIV medical care visit during

the survey’s sampling period in the observed year. The National HIV Surveillance System (NHSS) data from the

states and D.C. that have complete laboratory reporting are used to estimate those “in care,” measured as the

percentage of diagnosed individuals who had at least one documented viral load or CD4+ test within the

observation year, and “retained in care,” measured as the percentage of diagnosed individuals who had two or

more documented viral load or CD4+ tests, performed at least three months apart in the observed year.

Prescribed to ART: Estimate the number and percentage of people receiving medical care that have a documented

ART prescription in their medical records in the observed year.

Virally suppressed: Estimate the percentage of individuals whose most recent HIV viral load within the observed

year was less than 200 copies/mL.

16 http://www.cdc.gov/hiv/pdf/dhap_continuum.pdf

86%

80%

40%37%

30%

0%

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%

Diagnosed Linked to Care Engaged in Care Prescribed to ART Viral Suppression

Prevalence‐Based HIV Care Continuum, 2011

31

HHS’S HIV COMMON INDICATORS

Antiretroviral Therapy (ART) Among Persons in HIV Medical Care: Number of persons with an HIV diagnosis who

are prescribed ART in the 12‐month measurement period

HIV Positivity: Number of HIV positive tests in the 12‐month measurement period

Housing Status: Number of persons with an HIV diagnosis who were homeless or unstably housed in the 12‐

month measurement period

Late HIV Diagnosis: Number of persons with a diagnosis of Stage 3 HIV infection (AIDS) within 3 months of

diagnosis of HIV infection in the 12‐month measurement period

Linkage to HIV Medical Care: Number of persons who attended a routine HIV medical care visit within 3 months

of HIV diagnosis

Retention in HIV Medical Care: Number of persons with an HIV diagnosis who had at least one HIV medical care

visit in each 6 month period of the 24 month measurement period, with a minimum of 60 days between the first

medical visit in the prior 6 month period and the last medical visit in the subsequent 6 month period

Viral Load Suppression Among Persons in HIV Medical Care: Number of persons with an HIV diagnosis with a viral

load <200 copies/mL at last test in the 12–month measurement period

HOPWA HOUSING ASSISTANCE DEFINITIONS

Facility‐Based Housing Assistance: All eligible HOPWA Housing expenditures for or associated with supporting

facilities including community residences, SRO dwellings, short‐term facilities, project‐based rental units, master

leased units, and other housing facilities approved by HUD.

HOPWA Eligible Individual: The one (1) low‐income person with HIV/AIDS who qualifies a household for HOPWA

assistance. This person may be considered “Head of Household.” When the APR/CAPER asks for information on

eligible individuals, report on this individual person only. Where there is more than one person with HIV/AIDS in

the household, the additional PWH/A(s), would be considered a beneficiary(s).

Household: A single individual or a family composed of two or more persons for which household incomes are

used to determine eligibility and for calculation of the resident rent payment. The term is used for collecting data

on changes in income, changes in access to services, receipt of housing information services, and outcomes on

achieving housing stability. Live‐In Aides (See definition for Live‐in Aide below) and non‐beneficiaries (e.g. a

shared housing arrangement with a roommate) who resided in the unit are not reported on in the APR/CAPER.

Permanent Housing Placement: A supportive housing service that helps establish the household in the housing

unit, including but not limited to reasonable costs for security deposits not to exceed two months of rent costs.

Project‐Based Rental Assistance (PBRA): A rental subsidy program that is tied to specific facilities or units owned

or controlled by a project sponsor. Assistance is tied directly to the properties and is not portable or transferable.

Short‐Term Rent, Mortgage, and Utility (STRMU) Assistance: A time limited housing subsidy assistance designed to

prevent homelessness and increase housing stability. Grantees may provide assistance for up to 21 weeks in any

52 week period. The amount of assistance varies per client depending on funds available, tenant need and

program guidelines.

Tenant‐Based Rental Assistance (TBRA): TBRA is a rental subsidy program similar to Section 8 that grantees can

provide to help low‐income households access affordable housing. The TBRA voucher is not tied to a specific unit,

so tenants may move to a different unit without losing their assistance, subject to individual program rules. The

subsidy amount is determined in part based on household income and rental costs associated with the tenant’s

lease.

32

HUD HOMELESS DEFINITION

Category 1 Literally Homeless: Individual or family who lacks a fixed, regular, and adequate nighttime residence,

meaning: (i) Has a primary nighttime residence that is a public or private place not meant for human habitation;

(ii) Is living in a publicly or privately operated shelter designated to provide temporary living arrangements

(including congregate shelters, transitional housing, and hotels and motels paid for by charitable organizations or

by federal, state and local government programs); or (iii) Is exiting an institution where (s)he has resided for 90

days or less and who resided in an emergency shelter or place not meant for human habitation immediately

before entering that institution

Category 2 Imminent Risk of Homelessness: Individual or family who will imminently lose their primary nighttime

residence, provided that: (i) Residence will be lost within 14 days of the date of application for homeless

assistance; (ii) No subsequent residence has been identified; and (iii) The individual or family lacks the resources

or support networks needed to obtain other permanent housing

Category 3 Homeless under other Federal statutes: Unaccompanied youth under 25 years of age, or families with

Category 3 children and youth, who do not otherwise qualify as homeless under this definition, but who: (i) Are

defined as homeless under the other listed federal statutes; (ii) Have not had a lease, ownership interest, or

occupancy agreement in permanent housing during the 60 days prior to the homeless assistance application; (iii)

Have experienced persistent instability as measured by two moves or more during in the preceding 60 days; and

(iv) Can be expected to continue in such status for an extended period of time due to special needs or barriers

Category 4 Fleeing/ Attempting to Flee DV: Any individual or family who: (i) Is fleeing, or is attempting to flee,

domestic violence; (ii) Has no other residence; and (iii) Lacks the resources or support networks to obtain other

permanent housing

Chronic Homelessness: An individual or family with a disabling condition who has been continuously homeless for

a year or more or has had at least four episodes of homelessness in the past three years.

33

APPENDIX B: RESOURCES

AIDS.gov: HIV/AIDS Care Continuum

https://www.aids.gov/federal‐resources/policies/care‐continuum/

AIDSVu: Mapping the HIV Care Continuum

http://hivcontinuum.org/

CDC: Vital Signs

http://www.cdc.gov/vitalsigns/HIV‐AIDS‐medical‐care/

CDC: Understanding the HIV Care Continuum

http://www.cdc.gov/hiv/pdf/dhap_continuum.pdf

HRSA: HIV Care Continuum

http://hab.hrsa.gov/data/reports/continuumofcare/continuumabstract.html

HRSA’s HIV/AIDS Bureau’s Revised Performance Measures

http://hab.hrsa.gov/deliverhivaidscare/habperformmeasures.html

HIV Care Continuum: The Connection between Housing and Improved Outcomes Along the HIV Care Continuum.

https://www.hudexchange.info/resources/documents/The‐Connection‐Between‐Housing‐and‐Improved‐

Outcomes‐Along‐the‐HIV‐Care‐Continuum.pdf

National HIV/AIDS Strategy: Improving Outcomes: Accelerating Progress Along the HIV Care Continuum (2013)

https://www.whitehouse.gov/sites/default/files/onap_nhas_improving_outcomes_dec_2013.pdf

National HIV/AIDS Strategy for the United States: Updated to 2020

https://www.aids.gov/federal‐resources/national‐hiv‐aids‐strategy/nhas‐update.pdf

New York City Department of Health and Mental Hygiene: HIV Care Cascade in the New York City HOPWA

Program.

http://www.health.ny.gov/diseases/aids/ending_the_epidemic/docs/key_resources/housing_and_supportive_ser

vices/hiv_care_cascade_nychopwa.pdf

White House: Executive Order—HIV Care Continuum Initiative

www.whitehouse.gov/the‐press‐office/2013/07/15/executive‐order‐hiv‐care‐continuum‐initiative

34

APPENDIX C: ACTION PLAN TEMPLATE

GOAL: TO PRODUCE AN HIV HOUSING CARE CONTINUUM TO FURTHER ENHANCE HOUSING SERVICES AND

IMPROVE PLWHA HEALTH OUTCOMES IN YOUR COMMUNITY

35

TO DEVELOP AND FUND OUR HIV HOUSING CARE CONTINUUM, WE WILL…

STRATEGY ACTION STEP RESPONSIBILITY DATE

1.

2.

3.

4.

5.

6.

36

TO USE OUR HIV HOUSING CARE CONTINUUM, WE WILL…

STRATEGY ACTION STEP RESPONSIBILITY DATE

1.

2.

3.

4.

5.

6.

37

NOTES

38

NOTES

39

NOTES

40

NOTES

hiv housing care continuum implementation workbook

Documents