Retention in Care – Tools to Retain PLWHA in Care

1. Retention in Care – Tools to Retain PLWHA in Care Presentation for the Summit to End HIV/AIDS in America September 30, 2012 Steven R. Young, MSPH Department of Health and Human Services Health Resources and Services Administration HIV/AIDS Bureau Division of Metropolitan HIV/AIDS Programs

2. Retention – It’s Scope & Place in the Continuum of Care Linkage/re-engagement Retention Clinical Outcomes ● Regular visits to a clinic at intervals appropriate for an individual seem simple but are complex ● Housing, work, childcare, transportation, beliefs are potential conflicting drivers ● Limited access hours, unfriendly attitudes of staff, waiting times, insensitivity to privacy, failure to follow-up, lack of supportive services undermine regularity of care

3. What is One to Do? The Gaps Defenses Consumers priorities/challenges Lack of provider follow-up Appt. scheduling and provider availability Unfriendly and/or cultural incompetence Lack of supportive services- mental health & substance abuse Effective connection to support services Flexible appt./reminder systems Friendly & supportive clinic environment Peer navigation/support Effective treatment adherence strategies Provider/patient communication & support Not in Care Linked Consumer Adapted from Medscape, http://www.medscape.com/viewarticle/768102_print. By Meredith Baumgartner from the work of James reason and sir Liam Donaldson

4. Vision and Mission of HIV/AIDS Bureau • Vision: The HIV/AIDS Bureau envisions optimal HIV/AIDS care and treatment for all. • Mission: The HIV/AIDS Bureau provides leadership and resources to assure access to and retention in high quality, integrated care and treatment services for vulnerable people living with HIV/AIDS and their families.

5. Ryan White HIV/AIDS Program - Intent Increase access to care for people living with HIV disease (PLWH) Only disease-specific discretionary grant program for care and treatment of PLWH Payer of last resort – safety net for uninsured and low-income individuals living with HIV/AIDS Funding for: Primary health care including medications Provider training Support services Technical Assistance Demonstration projects

6. Ryan White HIV/AIDS Programs Cities (Part A) States and Territories (Part B) AIDS Drug Assistance Program (ADAP) Health Care Agencies Early Intervention Services and Capacity Development (Part C) Women, Infants, Children and Youth (Part D) Other programs (Part F) Dental, Education/Training, Planning, Capacity Development and Demonstrations, Minority AIDS Initiative

7. Basic Tenets of Ryan White • Local planning and prioritization of funding based on needs assessment • Involvement of PLWHA (“consumers”) in planning process • Primary care and support services funded • Quality of care

8. Ryan White Program Accomplishments Ryan White funded programs provide care, treatment and support services to approximately half of the PLWH in the US. Specifically, of an estimated 1.1 million PLWH in U.S, Ryan White programs served over 529,000 uninsured and underinsured of them Built networks and systems of care with and between public and private providers for a comprehensive response to the epidemic. Extended our knowledge base and expertise to improve the quality of HIV/AIDS care and treatment across the health care system.

9. Ryan White HIV/AIDS Program Challenges Increased demand for services in an environment of few new/declining resources Rising costs Growing HIV/AIDS prevalence Increasing financial pressure on medical systems Earlier HIV treatment per DHHS Treatment Guidelines Chronicity of HIV disease/aging More co morbidities (including viral hepatitis) Increased need for primary care Identifying HIV infection earlier Expanding HIV testing Improving linkage to and retention in care Supporting the HIV workforce Need for both primary care and specialty services

10. Outreach and Retention

11. Continuum of HIV Prevention, Care and Treatment: The Implementation Cascade HIV

12. Number and Percentage of HIV-infected Persons Engaged in Selected Stages of the Continuum of HIV Care — United States Source: CDC. HIV surveillance—United States, 1981–2008. MMWR 2011;60:689–93.

13. National HIV/AIDS Strategy • Released by President Obama on July 13, 2010 • Vision: “The United States will become a place where new HIV infections are rare and when they do occur, every person, regardless of age, gender, race/ethnicity, sexual orientation, gender identify or socio-economic circumstance, will have unfettered access to high quality, life-extending care, free from stigma and discrimination.” • Four main goals: • Reducing New HIV Infections • Increasing access to care and improving health outcomes for PLWH • Reducing HIV-related disparities and health inequities • Achieving a more coordinate national response to the HIV epidemic

14. National HIV/AIDS Strategy • NHAS is available at www.aids.gov • Some main areas of focus: • Intensifying HIV prevention efforts in the communities where HIV is most heavily concentrated including gay and bisexual men, black men and women, Latinas/Latinos, and substance abusers using effective, evidence-based approaches • Establishing a seamless system to immediately link PLWH to high quality care and maintain them in care • Increasing the number of providers of HIV care • Reducing stigma and discrimination against PLWH

15. National HIV/AIDS Strategy – Targets for 2015 • Reduce new infections (25%), lower transmission rate (30%), and increase to 90% awareness of HIV+ serostatus • Improve access to and outcomes of care by linking 80% 0f PLWH to care within 3 months of diagnosis, increase to 80% of Ryan White clients in continuous care, and increase to 86% of Ryan White clients with permanent housing (RSR data element - number of visits in each quarter of reporting period; HAB performance measure - % of clients with HIV infection who had two or more medical visits in an HIV care setting in measurement year) • Reduce HIV-related health disparities by increasing by 20% the number of men who have sex with men (MSM), Blacks, and Latinos with undetectable viral load

16. The Patient Protection and Affordable Care Act – Challenges from a HIV Perspective • Network Adequacy • Will the #, distribution and types of providers be sufficient? • To what extent will Ryan White funded providers be included in the networks of plans offered in the new Health Insurance Exchanges? • Is the onus on providers to make their case to contract with Medicaid managed care or the HIEs, or will there be expectations on the plans? • Continuity & Quality of Care – will individuals living with HIV/AIDS have to change providers and will the quality of care be at the same high level as that provided via Ryan White funding? • State flexibility/variation in implementation – “Be at the Table”

17. Ryan White Model of Care: Ideal

18. Address a Specific Disparity - SPNS Goal: To improve access to and retention in care Initiatives: Young MSM of Color (2004-2010) Women of Color (2009-2014) Transgender Women of Color (2012-2017) Enhancing Linkages in Jail Settings Initiative (2007-2011)

19. Promote a Public Health Agenda: SPNS Systems Linkages Initiative Systems level approach Goal: Develop innovative models to link and retain hard-to-reach HIV infected patients to care Take a “public health” approach to improve linkage and retention Involves new partners in the health system Includes a quality improvement collaborative model SPNS initiative geared to the state/ systems level $1 million/year/grantee

20. A Low-Effort, Clinic-Wide Intervention to improve Attendance for HIV Primary Care Coordinated messages to encourage patients’ clinic attendance (Stay Connected-posters, brochures, brief messages to patients by providers) Six HIV-specialty clinics; 10,018 and 11,039 patients pre- and post-intervention Variable - % who kept 2 consecutive primary care visits; mean proportion of all visits kept over one year Findings – 7% higher for 2 consecutive visits; 3% higher for mean visits kept; higher for new or reengaging versus active Conclusion – modest impact (UVL also up) for low costs. Phase 2 – individualized attention to deal with personal skills and more personalized appointment reminders Gardner, LI, et.al. A Low-Effort, Clinic-Wide Intervention Improves Attendance for HIV Primary Care. Clinical Infectious Diseases. August 9, 2012.

21. Training and TA Tools http://careacttarget.org/category/topics/engagement-care. Inclusive of: Outreach Treatment adherence Peers http://careacttarget.org/sites/default/files/file-upload/resources/RESOURCES_RecruitRetainStigma_NMAC_2008.pdf. http://careacttarget.org/sites/default/files/file-upload/resources/ConnectingtoCare_WB2_2008.pdf.

22. In+Care Campaign designed to facilitate local, regional and state-level efforts to retain more HIV patients in care and to prevent HIV patients falling out of care while building and sustaining a community of learners among Ryan White providers. 474 HIV providers representing 401 HIV programs in 241 cities and across 46 States/Territories caring for 425,444 people living with HIV Submission of retention data every other month Medical Visit Frequency over 24 months Medical Visit Frequency for new patients Gap in Medical Visits Viral Load Suppression

23. In+Care Campaign Improvement updates Coaching Monthly webinars Consumer participation

24. Snapshot of National Data

25. THE PUFF TOOLKIT: UCSD Retention Project: Patients Unable to Follow up Found

26. Connecting to Care Traveling HIV Clinic Zip code/Family Mapping Peer Mentor Bus route to care Support group Financial advocacy Deployed case management Home based treatment coordination Substance use discharge planner

27. HIV Primary Care Medical Home Characteristics of the Patient-Centered Medical Home (PC-MH) - team based care led by a personal physician or other eligible clinician, physician/clinician directed practice, whole person orientation through the provision of primary health care, integrated/coordinated care, quality and safety, enhanced patient access, and payment to reflect the added value to patients The overarching goal of the HIV-MHRC - provide training and technical assistance to assist Ryan White HIV/AIDS Program grantees in understanding, developing and successfully applying to become recognized PC-MHs. Identification and linkages with existing national networks and resources Assessment of readiness and needs related to PC-MH development and certification Evaluation and dissemination of timely and available resources on PC-MH A comprehensive resource repository accessible on the HRSA TARGET Center website In-person strategic planning workshops with Ryan White grantees ready and interested in becoming a PC-MH Ongoing coaching, technical assistance and e-consultation led by a multidisciplinary team of practice facilitators Learning collaborative Webinar training series Documenting successful retention models

28. Ancillary Services and Receipt and retention in Medical care The holistic model of care supported under Ryan White includes a variety of ancillary services (case management, behavioral health counseling and treatment, transportation, housing assistance) whose receipt has been shown to be positively associated with entry into and retention in HIV primary care Evaluating the Contribution of Ancillary Services in improving Access to Primary care in the United States under the Ryan White CARE Act. AIDS Care. Volume 14, Supplement 1, August 2002

29. Discussion/Questions Contact Information: Steven R. Young, M.S.P.H. Director-Division of Metropolitan HIV/AIDS Programs HIV/AIDS Bureau, HRSA 5600 Fishers Lane Parklawn Building, Rm. 7A-55 Rockville, MD 20857 (301) 443-7136 (301) 443-5271 fax email: syoung@hrsa.gov -2012 Ryan White All Grantee Meeting “Navigating a New Era in CARE” http://careacttarget.org - Central source of Ryan White TA