Adolescents and HIV in 2018: No Youth Left Behind Donna C. Futterman, MD Professor of Pediatrics The Albert Einstein College of Medicine Bronx, New York Learning Objectives After attending this presentation, learners will be able to: Describe 3 reasons youth remain vulnerable Describe 3 challenges for youth in clinical care Slide 3 of 29 Adolescents Living with HIV is a Global Issue Estimated number of adolescents (aged 10-19) living with HIV, 2013 AIDS - #1 killer of adolescents (10-19) in Africa and #2 worldwide 2.1 million adolescents living with HIV worldwide 380,000 new HIV infections yearly in youth (15-24) (60% among girls) Slide 4 of 29 UNAIDS, 2014
Slide 5 of 29 HIV in the US 40K new US cases; 16k among youth (13-29) 13-29y: 40% of new diagnoses, 23% of population Average 2.7 years from infection to diagnosis Females are 16% of adolescent cases South had 52% of cases In 2014, 90% diagnoses among males were gay/bisexuals (22-23 yo highest at 34/100,000) 52% were black (390/100,000) 22% Hispanic/Latino, and 16% white 1.2 million people in US living with HIV 1 in 8 (12.8%) are unaware of their infection 52% of youth with HIV are unaware CDC 2014; 2018, andnycdoh Global HIV Care Cascade: How do we improve to 90-90-90 for youth? Diagnosed HIV+ Prescribed ART Suppressed Virally ISSUES: Most youth have not been tested. Most youth have inadequate access to ART & youth-friendly adherence support. Poor data & wide variance (27% -89%) in reported global viral suppression in youth. Slide 6 of 29 Optimizing the Care Cascade: HIV Testing Most HIV+ youth don t know Majority not symptomatic Need routine and targeted testing Routine testing needed in clinical sites Outreach-based (schools, communities, venues) Address consent and confidentiality with minors Test all youth Undisclosed sexual activity/abuse and perinatally infected Slide 7 of 29
Slide 8 of 29 Youth Susceptibility to HIV/STD Behavioral vulnerability Age of experimentation: 55% sex by 12th gr Homophobia and gender power imbalance Mental illness, substance use, sexual abuse Biological vulnerability of females > males Immature cervix STDs often asymptomatic More efficient: male to female Uncircumcised males at increased risk Socioeconomic vulnerability Lack: health care coverage, confidentiality Inadequate sex education Poverty, race/ethnicity, immigration, housing Source: IOM/YRBS Youth-friendly HIV Care Providers who are knowledgeable, nonjudgmental Confidentiality and Consent See adolescents separately from parents Cohort youth to single day Socioeconomic issues: poverty, schools, housing & transportation challenges Empowering youth to live with HIV Coping/Mental Health HIV care Prevention Slide 9 of 29 Treatment Issues Adherence/Viral Load Suppression Disclosure Ongoing risk of transmission Reproductive health Behavioral and psychological concerns Transition to Adult Care Slide 10 of 29
Optimizing the Care Cascade: Viral Suppression Immediate treatment is game changer Check pubertal development for dosing Developmental issues key Concrete and present-oriented thinking Adverse events may seem intolerable Meds rebellion as a form of independence Mistrust providers YET trust misinformation from peers learn barriers and motivators Perinatally infected have unique needs Sustained viral load suppression 44% among youth Slide 11 of 29 U=U works for long term undetectables able to adhere to ART and remain in care How big is this population? US: 30% of HIV+ are Virally Suppressed (CDC 2014) NYC: 74% of HIV+ VS (NYC DoHMH 2016) Youth less likely to sustain VLS How do these estimates reflect U=U potential? Many vulnerable to being detectable Personal and structural instability Newly infected Youth Undetectable = Untransmittable Slide 12 of 29 Medical Problems of Perinatally Infected Youth Treatment - Lack of pediatric formulations and PK data - HIV drug resistance from serial mono therapy - Poor adherence to antiretroviral therapy - Adolescent independence vs lifelong treatment Complications Related to HIV or its Treatment Central nervous system abnormalities Metabolic and cardiovascular disease Bone loss Renal disease Slide 13 of 29
Particular Challenges of Perinatally Infected Youth Family dynamics Relationship with mother/parent; mother s relationship with illness; who is raising the child; possible death of parent Disclosure If and when child was told Diagnosis Chronic and suffering vs. asymptomatic Treatment Association with pills, side effects, death Slide 14 of 29 Transitioning Youth aging into / out of adolescent care Facilitate transition from supportive to independent and responsibilities from parent/provider to patient Promote growth, self-expression and personal decision making Choose adult clinic with multidisciplinary services Traumatic for youth to leave trusted providers Uncomfortable in the presence of adult patients Consider phased transition (case manager, GYN) A Meyerson 2006 Slide 15 of 29 Transition Challenges Attachment to medical team Perinatal infected long term care relationship Behavioral infected strong bond with medical team that counseled through new diagnosis Stigma associated with stigmatized chronic disorder; being out as LGBT resistance to tell story/provide medical history repeatedly Fewer psychosocial support services in adult care Fewer mental health professionals, social workers Less time dedicated to supportive care Economic and Logistical Barriers Slide 16 of 29
Slide 17 of 29 LGBTQ-Friendly Care Welcoming environment Cohort youth to same day Signal you are happy to discuss gender & sexual identity Challenges of EMR: Gender and orientation Include LGBTQ imagery in materials Gender neutral bathrooms Confidentiality Assure patients of confidentiality (EOB) LGBT Youth Same developmental tasks as all youth and most grow to be healthy adults Must develop healthy, integrated identity amidst negative stereotypes/prejudice, often without family support More susceptible to emotional distress, psychiatric morbidity, multiple disparities, stigma, abuse, violence, isolation Slide 18 of 29 Slide 19 of 29 You can t be gay, you ll shame the family
Slide 20 of 29 Spectrum of Gender and Sex Female Female Feminine Heterosexual Natal Sex/Anatomy Gender Identity Gender Expression Sexual Orientation Male Male Masculine Homosexual Slide 20 of 29 Transgender & Gender Nonconforming TG: Feels their gender identity doesn t match the sex/gender assigned at birth (GAB) Trans woman (MTF) or Trans man (FTM) GN: Doesn t follow stereotypes about how they should look/act based on their GAB, non-binary Latinx: people of Latin American descent whose gender identities fluctuate along the gender spectrum Cisgender: Gender identity aligns with GAB Often sense difference at a young age Gender Dysphoria changed from Gender Identity Disorder (DSM V, 2013) Slide 21 of 29 Prevention US prevention leaves youth vulnerable Mass media promotes sex but not safer sex Strong and sustained promotion of condoms and other prevention strategies Abstinence only sex education shown ineffective Comprehensive sex education offers better foundation and is wanted by most parents Behavior change is very difficult Prolonged interventions more successful Successful programs combine skill and knowledge Slide 22 of 29 Source: Advocates for Youth (2007) Abstinence-Only-Until-Marriage Programs: Ineffective, Unethical, and Poor Public Health
Slide 23 of 29 The Power of Routine Testing Prolongs Life HIV treatment can improve quality of life and increase survival by many years/normal life span Reduces HIV Transmission HIV+ people who know their status reduce high-risk sex by about 50% Lower viral loads from ARV also reduces transmission Can identify those needing Prep Preserves Resources Successful ARV reduces overall care costs for HIV+ Slide 24 of 29 Recommendations for Routine HIV Testing - Achieve routine testing in medical settings - Expand targeted testing - Frequent testing for MSM, Trans men and women, new immigrants, persons in neighborhood with high seroprevalence, injection drug users, migrant workers, homeless persons, history of incarceration, substance use or mental health issues - Address acute infection - Acutely infected persons are highest transmitters of HIV - Improve referral and engagement - Significant numbers of HIV+ individuals are out of care - All testing sites should be centers for referral and engagement - Engage HIV negative and at-risk individuals into care Slide 25 of 29
Slide 26 of 29 Managed Practice Change Utilizing existing resources Buy-in Implementation Planning Training & Mentoring Monitoring & Evaluation + Streamlined C&T Integrating HCT into routine care Advise Consent Test Support We ve mapped good routes to ETE. Let s make sure no one gets lost along the way. Testing is more routine But still exceptional/cumbersome in medical settings Treatment saves lives & prevents infections But not all have access or can be ideally adherent PrEP prevents infections But not all have access or can be ideally adherent Condoms perceived as old school prevention But are critical to preventing other STIs Slide 27 of 29 Addressing Youth Challenges New generation every 5 years Sustain & refresh sex education & social marketing efforts HIV is MIA in most young peoples consciousness HIV no longer feared: treatable & invisible Duality re HIV Infection: inevitability vs. invulnerability Fear of disclosure: HIV, sex and sexual orientation Confidentiality & Consent hard to implement Vulnerable youth are vulnerable in multiple ways Economic, racial, gender, and sexual orientation disparities Slide 28 of 29
Slide 29 of 29 Contact Us Donna Futterman, MD DFutterman@ Adolescent AIDS Program Children s Hospital at Montefiore 718-882-0232