2. 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

3. Welcome

4. Speedy Overview

5. 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

6. 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

7. 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

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

9. 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

11. Introduction of new coach11

12. 2016 NYS Cascades 12

13. 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

14. 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

15. 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 ,685 (93%)

16. 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%)

17. Introductions 17

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

19. Consumer Involvement 19

20. 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

21. 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

22. Watch this space

23. Butterflies 23

24. 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

25. Rules
Everyone stand up

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

27. 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

28. 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

29. 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

30. Brief debrief
Was your task a process?

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

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

33. 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?

34. Reducing Stigma in HIV Care34

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

36. 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 “From Conceptualizing to Measuring HIV Stigma: A Review of HIV Stigma Mechanism Measures.” AIDS Behavior: 13(6):

37. 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 “From Conceptualizing to Measuring HIV Stigma: A Review of HIV Stigma Mechanism Measures.” AIDS Behavior: 13(6):

38. 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 , 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

39. 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)

40. Negative Health Impacts of Stigma for PLWH

41. 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

42. 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?

43. 2016 New York State HIV Quality of Care Program Review
Measuring and Addressing Stigma in Healthcare Settings

44. 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 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

45. 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

46. 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

47. 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

48. 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

49. 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

54. 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 . . .

55. Lunch 55

56. Stigma Report Back 56

57. 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

58. ETE Updates 58

59. A Selection of Anti-Stigma Materials59

60. 2018 Cascade Guidance 60

61. Please refer to the actual Cascade Guidance for more information

62. 2018 Call to Action 62

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

65. 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

66. 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

67. 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

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

69. 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

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

71. QI Training for 2018 71

73. Evaluation 73

74. 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

75. Contact Information
Steve Sawicki, NYLinks Lead,
Regional Leads
Upper Manhattan—Susan Weigl & Jonathan Gomez,
Lower Manhattan—Susan Weigl & Jonathan Gomez
Western NY—Nanette Brey Magnani,
Long Island—Febuary D’Auria, Steven Sawicki
Central NY & Southern Tier—Laura O’Shea,
Mid & Lower Hudson—Steve Sawicki
Queens—Nova West,
Brooklyn—Clemens Steinbock, & Zeenath Rehana
Bronx—Dan Belanger,
Northeastern NY—Steve Sawicki
Staten Island—Steve Sawicki
And Remember to visit the webpage at: