Liz Seidel, MSW (for Dr. Stephen Karpiak) AIDS Community Research Initiative of America (ACRIA) ACRIA Center on HIV and Aging NY, NY New York University College of Nursing NYU Medical CFAR
ACRIA : AIDS Community Research Initiative of America founded in New York City in 1991 Clinical Trials Research on Older Adults Education Health Literacy Antiretrovirals Side-effects management Comorbid treatments Social networks Depression management ACRIA Began 20 Years Ago In New York City Comorbidities Service utilization Accessing caregivers Stigma Spirituality Staff/agency trainings on needs of aging HIV populations & those at-risk Local and national technical assistance & capacity building Continuing education credits Materials in several languages
It Has Been 30 Years In 1990, from the beginning of the epidemic there had been 160,000 people diagnosed with AIDS in the US. By the end of 1990, almost 110,000 of these people had died. In 2010 there are almost 1.1 million people living with HIV/AIDS in the US, and 30,000 of these die each year. The CDC estimates that by 2015 half of the US HIV/AIDS population will be age 50 and older.
ACRIA CENTER ON HIV and AGING Chair: Richard Havlik MD Ret. Section Chief NIH National Institutes of Aging ACRIA Health Literacy and Education Programs ACRIA Research Initiatives SUNY Downstate WIHS Cohort and MAC Cohort Collaborative Data Comparisons with Terence Higgins Trust Study of GMHC Older Adult Clients: Service Utilization ROAH: Chelsea Westminster Hospital UK Chicago LGBT Older Adult Study: Collaboration with U of Chicago Medical Phone Intervention Model for Depression Congregations as a Support Resource for Older Adults with NYU New Treatment Guidelines with the American Academy of HIV Medicine and the American Geriatrics Society
September 2008: HHS Establishes September 18 as an annual National HIV/AIDS and Aging Awareness Day Oct 2010: White House Office of National AIDS Policy convenes a Special Meeting on HIV and Aging
% of People Living with AIDS Diagnosis Over Age 50 in US CDC Surveillance Data
% of People Living with AIDS Diagnosis Over Age 50 in US CDC Surveillance Data
The US Centers for Disease Control & Prevention (CDC) predicts that in five years 50% of all people living with HIV will be over age 50
New York City is the U.S. HIV Epicenter There are approximately 120,750 PLWHA in NYC 43% are over age 50 75% are over age 40
Life Expectancy on HAART Is Not Normal At HAART Initiation CD4 Cell Count (mm 3) <100 100-199 >200 A 20 yr old will live to (years) 52 62 70 A 35 yr old will live to (years) 62 65 72 % Remaining Life Lost (all ages) 46% 27% 14% Adapted from ART-CC, Lancet 2008;372:293-99
WHO Are These Older Adults Living with HIV/AIDS?
RESEARCH onolder ADULTS withhiv Stephen E. Karpiak, PhD Mark Brennan, PhD Principal Investigators ACRIA Center on HIV and Aging New York University
1000 NYC Older Adults Over Age 50 participated in this study RESEARCH onolder ADULTS withhiv Stephen E. Karpiak, PhD Mark Brennan, PhD Principal Investigators ACRIA Center on HIV and Aging New York University
ROAH is COMPREHENSIVE
Older Adults with HIV: An In-depth Examination of an Emerging Population Brennan, Karpiak, Shippy & Cantor Nova Science Publishers (2009) Table of Contents 1.The Emerging Population of Older Adults with HIV and Introduction to ROAH the Research Study, S. E. Karpiak & M. Brennan 2.Health Status, Comorbidities, and Health-related Quality-of-Life; R. J. Havlik 3.Mental Health; A. Applebaum & M. Brennan 4.Substance and Alcohol Use; A. Applebaum & M. Brennan 5.Sexual Behavior among HIV+ Older Adults; S. A. Golub, C. Grov, & J. Tomassilli 6.HIV Stigma and Disclosure of Serostatus; M. Brennan & S. E. Karpiak 7.Social Support Networks of Older People with HIV; M. H. Cantor, M. Brennan, & S. E. Karpiak 8.Loneliness among Older Adults with HIV; M. Brennan & A. Applebaum 9.Psychological Well-being; M. Brennan & S. E. Karpiak 10.Reli giousness and Spirituality; M. Brennan 11.Aging with HIV: Implicatio ns and Future Directions; S. E. Karpiak & M. Brennan 12.About the Authors 13.Appendix: Methodol ogy of the ROAH Study
ROAH: Age Distribution Mean Age = 55.3 / Age range was 50-78
ROAH Employment, Nativity, Education Employment Status % Working 8.3 Retired 6.9 Unemployed 20.1 Disability 64.2 Country of Birth USA 83.5 Other nation 16.5 Education Less than high school 20.4 High school graduate 58.6 College graduate 21.5
ROAH HIV Treatment Care Treatment facility % Private physician 21.9 Public clinic / hospital 58.7 VA Hospital 4.9 ASO / day program 17.0 83% of ROAH Participants are Medicaid Dependent
ROAH: Disclosure of HIV Status (%) Healthcare 90.5 Sexual partners 68.2 Family 65.7 Friends 65.2 Social groups 52 Drug buddies 44.6 Co-Workers 36.4 Place of Worship 35.4 0 10 20 30 40 50 60 70 80 90 100
Proportion Wanting To Disclose to Someone Else
ROAH: Tobacco Use Current History 57 % 84 %
0 40 80 %
Substance Use Recovery Recovery Status % Ever enrolled in 12-step 62 Currently in recovery 54 No substance use in past 3 months 48 In recovery for more than 1 year 44
CES-D Symptoms of Depression
Depression in ROAH vs. Other Older Adults
Comorbidities and Depression Management in Older Adults with HIV (from ROAH: in press by Havlik, Brennan, Karpiak Significanc e % No Depressive Symptoms % Moderate Depressive Symptoms % Severe Depressive Symptoms Vision Loss p<0.05 18.3 27.5 54.2 Hearing Loss ns 8.7 10.1 14.3 Dermat. Problems p<0.05 24.7 23.5 51.8 Heart Condition p<0.05 26.6 20.2 53.2 Respitory Condition p<0.01 20.2 20.2 59.6 Stroke ns 13.8 41.4 44.8 Diabetes ns 12.6 11.6 17.1 Broken Bones p<0.05 19.2 33.3 47.4 Impotence ns 10.5 11.5 16.3 Neuropathy ns 27.6 30.0 32.6
Over 2/3 of the study group had moderate to severe depression Depression Causes Non-Adherence to ALL Medication including HIV Meds Although in Medical Care Their Depression Remains Unmanaged
ROAH Living Arrangement
CAREGIVERS are derived from SOCIAL NETWORKS
ROAH: Informal Social Network Composition Parent Child Sibling Othe Friend 0 20 40 60 80 Living Functional
1 Funded by the Robert Mapplethorpe and Keith Haring Foundations
Course of Depression over 20 Weeks Week of Assessment Change in PHQ-9 Scores Over 20 Weeks; All weeks significantly lower than baseline
Comorbidity Associated with Race, gender, age Socioeconomic status Tobacco, alcohol, drugs Other lifestyle behaviors (obesity, inactivity) Caution: May confound association with HIV or ARVs Possibility of synergy need to study populations at risk
Average Number of Comorbidities Karpiak et al., ROAH, 2006
Number of non-hiv meds by age % of particpants 100 80 60 40 20 0 <50 years 50-64 years 65+ years Age Number of comedications 0 1 2 3 4+ B Haase CROI 2011
Health Care Management That Considers Integrating the Entire Person and Their Resources.Coordinate and Integrate.Obama Health Care Reform
AAHIVM: Guides for the Management of Older Adults with HIV Expert Panel of 14 Leaders in HIV Treatment Research and Geriatric Care American Academy of HIV Medicine American Geriatrics Society
The HIV and Aging Consensus Project Recommended Treatment Strategies for Clinicians Managing Older Patients with HIV Sponsored by American Academy of HIV Medicine American Geriatrics Society AIDS Community Research Initiative of America
And other TRUTHS about getting older
ROAH: Sexual Behavior ACRIA in collaboration with Center for HIV/AIDS Educational Studies and Training (CHEST) Jeff Parsons PhD and Sarit Golub PhD
Sex is Not Only for the Young Proportion reporting sex in last 12 months Lindau NEJM 2007 357(8):762-774
Prevention for Positives Do you receive HIV prevention information? Does prevention information target older adults?
CDC Surveillance Data: New HIV Infections in 50 an Older Group % of Total
Concurrent HIV/AIDS among persons diagnosed with HIV in 2006 by age group, United States 100 90 Percent of persons newly diagnosed with HIV 80 70 60 50 40 30 20 10 0 45 56 51 62 80 76 88 55 44 49 38 20 24 12 0 12 13 19 20 29 30 39 40 49 50 59 60+ HIV only (non AIDS) Concurrent HIV/AIDS Age group at diagnosis Source: CDC HIV/AIDS Surveillance Report, 2006. http://www.cdc.gov/hiv/topics/surveillance/resources/reports/index.htm
Why are older patients getting infected? Patient lack of awareness of HIV risk factors Many older people are newly single Belief that HIV only affects younger people Unprotected sexual activity Use of Viagra and other ED drugs may contribute to increased rates of sexual activity Menopause= No risk for pregnancy=no condom No training in safer sexual activities Lack of HIV prevention education targeted at older people Seniors not considered at risk: don t ask, don t tell
ROAH Sexual Behaviors 3 Months Number of sexual partners % No sexual partners 43.3 One sexual partner 43.4 More than one sexual partner 13.3 Sexual activity in the last 3 months % No sexual activity 49.8 Oral sex 41.4 Vaginal sex 30.1 Anal sex 19.5
ROAH: First Data on Risk Behavior in Older Adults Substance use impact - Significant Viagra and other ED Drugs Impact - None Of those who are sexually active 16% engaged in high risk sexual behavior in the last 3 months
The Older Adult HIV NYC Council Initiative One Million Dollar NYC Initiative: How and What ACRIA 2007-2011 2011 AIDS Community Research Initiative of America 230 West 38th St New York, NY 10018
On June 1 2011 ACRIA launched the first ever public campaign on HIV prevention targeting older adults
A 55 year old person living with HIV/AIDS often reads like an 85 year old Some Call This Accelerated Aging The need for this population to access existing services for older adults is essential
Policy and Action Steps
ACRIA s HIV Older Adults Materials
What Needs to Happen?
Stephen Karpiak PhD Skarpiak@acria.org ACRIA Center on HIV and Aging and New York University