Ending the Epidemic in New York State Long Island, New York Regional Group February 28th, 2018 Chat Room Question What improvement ideas to you have to advance linkages and retention across agencies and providers? Ending the Epidemic in New York State 2

Welcome

Speedy Overview

Ending the Epidemic Defining the “End of AIDS” A 3-Point plan announced by the Governor on June 29, 2014 Identify all persons with HIV who remain undiagnosed and link them to health care. Link and retain those with HIV in health care, to treat them with anti-HIV therapy to maximize virus suppression so they remain healthy and prevent further transmission. Provide Pre-Exposure Prophylaxis (PrEP) for persons who engage in high-risk behaviors to keep them HIV negative Reduce the number of new HIV infections to just 750 [from an estimated 3,000] by 2020

Public Release of the Blueprint April 29, 2015 We must add AIDS to the list of diseases conquered by our society, and today we are saying we can, we must and we will end this epidemic. ~Governor Cuomo

Blueprint Recommendations (BPs) Link and retain persons diagnosed with HIV in care to maximize virus suppression so they remain healthy and prevent further transmission. BP5: Continuously act to monitor and improve rates of viral suppression BP7: Use client-level data to identify & assist patients lost to care or not virally suppressed BP8: Enhance & streamline services to support the non-medical needs of persons with HIV... BP29: Expand & enhance the use of data to track and report progress

NYLinks Overall Objectives Improve Linkage to Care Improve Engagement in Care Improve ART Adherence Improve Viral Load Suppression

Methods Put our Public Health Hats on Involve Everyone Think in terms of Region and Community Use Data Identify Gaps in Care Identify Interventions to fill Gaps Use Quality Improvement Methodology Increase QI skill set Share with Everyone

Introduction of new coach 11

2016 NYS Cascades 12

New York State Cascade of HIV Care, 2016 Persons Residing in NYS† at End of 2016 93% of infected 74% of infected 80% of PLWDHI Estimated infected is based on CDC’s June HIV Surveillance Supplemental Report vol. 21, No.4 reported that at the end of 2013 an estimated 13% of infected persons were unaware of their infection (ROS) as well as 5% unaware for persons residing in NYC. CDC. Monitoring selected national HIV prevention and care objectives by using HIV surveillance data—United States and 6 U.S. dependent areas—2014. HIV Surveillance Supplemental Report 21(No.4). 65% of infected 70% of PLWDHI 87% of cases w/any care †Based on most recent address, regardless of where diagnosed. Excludes persons with AIDS with no evidence of care for 5 years and persons with diagnosed HIV (non-AIDS) with no evidence of care for 8 years. ǂ Estimated unknown 5.0% for NYC and 15% Rest of State *Any VL, CD4, genotype test during the year. BHAE/AI/NYSDOH

Cascade of HIV Care: Nassau-Suffolk Ryan White Region Persons Residing in the Nassau-Suffolk Ryan White Region† at End of 2016 (excludes prisoner cases) 85% of infected 66% of infected 78% of PLWDHI 60% of infected 71% of PLWDHI 91% of cases w/any care †Based on most recent address, regardless of where diagnosed. Excludes persons with AIDS with no evidence of care for 5 years and persons with diagnosed HIV (non-AIDS) with no evidence of care for 8 years. ǂ 15% were infected and unaware (CDC estimate) * Any VL, CD4, genotype test during the year BHAE/AI/NYSDOH

Data from organizational cascades 2016 (7 sites reporting) Established patients Open category--4,938 Active category--4,002 Patients prescribed ART--3,962 (99%) VS less than 200--3,685 (93%)

Data from organizational cascades 2016 (7 sites reporting) Newly Diagnosed Newly Diagnosed—119 Linked to care w/in 3 days—95 (80%) Prescribed ART—109 (92%) VL under 200—89 (75%)

Introductions 17

Introduction Directions Please share the following with the group: Your name and title Where you work What is your favorite dessert?

Consumer Involvement 19

AIDS Institute Quality of Care Program Standards for Consumer Involvement in Quality Improvement Consumer(s): Are routinely asked to provide input/feedback in the selection of quality improvement (QI) priorities Participate in HIV quality management (QM) program activities, as members of the QM committee Provide feedback on the HIV QM program by responding to formal solicitations for public comment and by participating in an organization’s consumer advisory board. Are offered opportunities to participate in trainings in QI and are provided with an organization’s performance data results and findings.  Experience is assessed at least annually and findings are formally integrated into QI activities and communicated back to staff and consumers, as specified in the guidance issued by the AIDS Institute

Organizational Assessment Completed by coaches to assess Quality of Care Program Infrastructure Organization that score below a 3 on consumer involvement section trigger coaching and TA

Watch this space

Butterflies 23

A process is a series of steps that turns an input into an output Systems, Processes, and Change A process is a series of steps that turns an input into an output A patient visit is a process A system is a group of processes with a common aim Treating HIV is a system This exercise is to illustrate the dynamics and interrelatedness of process steps. All related to improvement

Rules Everyone stand up

Rules Everyone stand up Do not let those you select know you have selected them

Rules Everyone stand up Do not let those you select know you have selected them Each person should pick two other people in the room

Rules Everyone stand up Do not let those you select know you have selected them Each person should pick two other people in the room. Everyone move to open space

Rules Everyone stand up Do not let those you select know you have selected them Each person should pick two other people in the room Everyone move to open space All of you have one job—When I say start try to keep yourself equidistant from the two people you have chosen

Brief debrief Was your task a process?

Brief debrief Was your task a process? Was the exercise a system?

Brief debrief Was your task a process? Was the exercise a system? How does this relate to the work you do?

Brief debrief Was your task a process? Was the exercise a system? How does this relate to the work you do? What could we have done to better perfect our system?

Reducing Stigma in HIV Care 34

Measuring and Addressing Stigma in Healthcare Settings Kelly Hancock Program Assistant NYSDOH AIDS Institute– Office of the Medical Director

What is HIV-related stigma? HIV-related stigma is defined as “prejudice, discounting, discrediting, and discrimination directed at people perceived to have HIV.” What is HIV-related stigma? Internalized stigma: when one develops low self-esteem and negative feelings about themselves because of one’s HIV status3,4 Anticipated stigma: when one expects to be discriminated against in the future because of one’s HIV status3,4 Enacted stigma: when one experiences or has experienced discrimination, stereotyping, and/or prejudice as result of other people’s actions3,4 Intersectional stigma: when the stigma of being HIV+ is coupled with stigma related to other personal attributes such as gender, poverty, class, race, geography, migrant status, drug use, mental health diagnosis and sexuality or sexual orientation5 Earnshaw, Valeria A., and Chaudoior, Stephenie R. 2009. “From Conceptualizing to Measuring HIV Stigma: A Review of HIV Stigma Mechanism Measures.” AIDS Behavior: 13(6): 1160-1177

Types of Stigma Internalized stigma (self) “I feel ashamed of having HIV” Anticipated stigma (fear of) “If I go in for an appointment, healthcare workers will treat me with less respect” Enacted stigma (discrimination) “At my appointment, my doctor did not touch me without gloves on” Types of Stigma Internalized Stigma (Self-stigma) Ones belief that they are “less than” others and are deserving of negative outcomes due to their HIV + status Endorsing negative feelings and beliefs associated with HIV and applying to oneself Internalized stigma—acceptance of one’s “lesser status”, manifesting in low self-esteem, sense of worth, self-blame, self-isolation/withdrawal Anticipated Stigma When one expects the stigmatizing behavior to occur – regardless of having this experience in the past Ex. A HIV+ patient avoids going to the doctor because he/she believes that the doctor will act in stigmatizing ways Experienced Stigma (Discrimination) When one experiences stigmatizing behavior, past or present Ex. HIV+ patient goes to doctor and doctor refuses to touch patient (any form of skin-on-skin contact) Every level of stigma affects the patients health and well-being Earnshaw, Valeria A., and Chaudoior, Stephenie R. 2009. “From Conceptualizing to Measuring HIV Stigma: A Review of HIV Stigma Mechanism Measures.” AIDS Behavior: 13(6): 1160-1177

Patient Experience with Stigma in NYS According to the Medical Monitoring Project (MMP), a population-based surveillance system that assesses clinical outcomes and behaviors of PLWH receiving care in the US between 2009-2014, in NYS (excluding NYC) and NYC: MMP Statement NYS (excluding NYC) (N=421) NYC (N=1,577) Perceived Stigma “I hide my HIV status from others” 67% 47% “It is difficult to tell people about my HIV infection” 74% 58% Discrimination Experiences Reported healthcare providers exhibited hostility or a lack of respect during a healthcare visit 26% 13% Reported said discrimination occurred because of HIV infection 92% 69% Source: NYSDOH Office of Public Health and NYC DOHMH HIV Epidemiology and Field Services Program

A framework for the effects of stigma on health (Earnshaw et al A framework for the effects of stigma on health (Earnshaw et al., AIDS Behavior, 2013)

Negative Health Impacts of Stigma for PLWH

Why stigma reduction now? Impacts of stigma lead to negative health outcomes PLWH avoid getting care or disclosing status because of fears of discrimination Source: NASTAD: HIV Prevention & Health Equity https://www.nastad.org/domestic/hiv-prevention-health-equity

Why is Stigma Hard to Change? Goals by the end of the exercise Participants will be able to identify…. Various factors promoting and restraining change in stigma Possible interventions to change stigma and discrimination Exercise Why is Stigma Hard to Change?

2016 New York State HIV Quality of Care Program Review Measuring and Addressing Stigma in Healthcare Settings

June 2015 – Quality of Care Clinical Advisory Committee (QAC) Presentation from Laura Nyblade on work to develop a stigma measurement tool in healthcare settings Early 2016- Stigma-Subcommittee first convened Consisted of members of the Quality of Care Clinical Advisory Committee (QAC) and members of the Consumer Advisory Committee (CAC) Stigma Survey Origins

Stigma Survey for Healthcare Staff Health Policy Project’s “Measuring HIV Stigma and Discrimination Among Health Facility Staff” Background Information Collecting demographics Health facility environment and health facility policies Questions on practices and experiences in the health facility Questions on facility policy and work environment Opinions about people living with HIV Attitudes and willingness to care Questions on key populations (not found in original tool) Men Who Identify as Gay or Bisexual, People of Transgender and Gender Non-Conforming Experience, Women, People with a Mental Health Diagnosis, People of Color Stigma Survey for Healthcare Staff

NYS HIV Quality of Care Program Review Organizational Cascades eHIVQUAL HIV Tobacco Cessation Improvement Campaign Measuring and Addressing Stigma in Healthcare Settings July 2017 NYS HIV Quality of Care Program Review

Measuring and Addressing Stigma in Healthcare Settings Three Components: Administer the stigma survey to staff members Solicit feedback from consumers Create a stigma reduction action plan based off of results Measuring and Addressing Stigma in Healthcare Settings

Stigma Staff Survey Findings/Themes In general, survey respondents: Have not received training on HIV-related stigma and discrimination Did not have knowledge of policy against discrimination of key populations Agreed that infection occurs due to irresponsible behavior Observed people talking badly about: Women People of color People with a mental health diagnosis TG/GNC individuals Have lack of training: Women's health People who use drugs Stigma Staff Survey Findings/Themes

Stigma Reduction Action Plan Themes from across the state Increasing staff education LGBT health (STI screening), mental health, HIV-related stigma, SOGI Welcoming, inclusive environment Posters and resources for all populations, U=U Creation of stigma reduction task forces (with both consumers and providers) Creation of support groups for key populations Stigma Reduction Action Plan Themes from across the state

Why is Stigma Hard to Change? Thinking about the question… Brainstorm Alone  Write single ideas/answers on a sticky note Discuss ideas with your group Organize the ideas into key themes Why is Stigma Hard to Change? & Page 12 of FRESH Workshop It might be more engaging to do this as a full group & ask 2 Steering Committee Members to work with you Jonathan at the end to sort & categorize the outputs (ideas) . . . The process of sorting and categorizing is a QI process . . .that helps teams target interventions . . .

Lunch 55

Stigma Report Back 56

Stigma Reduction: Group Wrap-Up Final thoughts about reducing stigma in Long Island? What are we “missing” in terms of reducing stigma? Stigma Reduction: Group Wrap-Up

ETE Updates 58

A Selection of Anti-Stigma Materials 59

2018 Cascade Guidance 60

Please refer to the actual Cascade Guidance for more information

2018 Call to Action 62

Three Focal Areas Facilitate Rapid Access to HIV Treatment Establish Goals Regarding Viral Suppression Take Steps to Eliminate Stigma

Facilitate Rapid Access to HIV Treatment with Patient Consent Early initiation of treatment with patient consent helps improve health outcomes and prevent HIV transmission HIV Treatment is effective HIV testing providers, clinical care providers, linkage/engagement/navigation specialists, laboraties and pharmacies establish systems which strive for same day initiation of HIV treatment

A new HIV diagnosis should be seen as an immediate call to action for every provider who engages with that individual, with the goal being rapid initiation of treatment with patient education to support the individual in fully adhering to the medication regimen

Establish Goals Regarding Viral Suppression Rates and Monitor Progress Clinical Care programs that participate in the AIDS Institute Quality of Care Program establish goals to increase their rates of Viral Suppression in 2018 Engage or re-engage Open patients who are not in care Consider hiring a certified Peer Worker to assist with engagement and adherence Embrace opportunities to partner with each other to create a seamless, patient centered effort to achieve and monitor viral suppression for every person living with HIV

Every provider, whether clinical or support services, should be working with each patient to monitor and support viral suppression

Take Steps to Eliminate the Long-Standing Problem of Stigma All clinical sites participating in the 2017 stigma survey should step up their effort to employ targeted, quality improvement activities to promote welcoming, affirming, stigma-free services for all individuals Doors to health care services, syringe access, opiod overdose prevention programs, medication-assisted treatment and other services must be wide open Undetectable=Untransmittable. This message should be conveyed clearly and simply in every available forum

U=U represents a powerful new platform for conveying the importance of HIV treatment and removing internalized stigma which can paralyze individuals from acting

QI Training for 2018 71

Evaluation 73

What’s Coming up? February 28, Long Island March 2, Mid and Lower Hudson March 21, NENY Regional Group March 22, MCPEtE March 28, Quality Improvement 101 for LI March 29, Western NY (QI focus) April 12, Queens

Contact Information Steve Sawicki, NYLinks Lead, steven.sawicki@health.state.ny.us Regional Leads Upper Manhattan—Susan Weigl & Jonathan Gomez, sweigl@yahoo.com, jgomez@health.ny.gov Lower Manhattan—Susan Weigl & Jonathan Gomez Western NY—Nanette Brey Magnani, breymagnan@aol.com Long Island—Febuary D’Auria, febuary.dauria@health.ny.gov, Steven Sawicki Central NY & Southern Tier—Laura O’Shea, laura.oshea@health.ny.gov Mid & Lower Hudson—Steve Sawicki Queens—Nova West, nova.west@health.ny.gov Brooklyn—Clemens Steinbock, clemens.steinbock@health.ny.gov & Zeenath Rehana zrehana@health.nyc.gov Bronx—Dan Belanger, dan.belanger@health.ny.gov Northeastern NY—Steve Sawicki Staten Island—Steve Sawicki And Remember to visit the webpage at: www.newyorklinks.org