Understanding HIV/AIDS in Adolescents and Youth

1. “HIV/AIDS: Adolescents and Youth” Epidemiology, HIV Counseling and Testing, Engaging in Care and Treatment Issues Jeffrey M. Birnbaum, MD, MPH Associate Professor of Pediatrics & Public Health Executive Director, HEAT Program SUNY Downstate Medical Center , Brooklyn, NY

2. What are the key issues to understand in HIV/AIDS with adolescents and youth? • Scope of the epidemic • Developmental context • Age appropriate services • Subgroups of youth at risk • HIV counseling and testing • Rights to consent and confidentiality • Engaging in care • Age specific clinical parameters • HAART and treatment adherence

3. Epidemiology of HIV/AIDS in Adolescents and Youth

4. Stage 3 (AIDS) Classifications among Adolescents Aged 13–19 Years, by Sex, 1985–2011—United States and 6 Dependent Areas Note. All displayed data have been statistically adjusted to account for reporting delays, but not for incomplete reporting.

5. Stage 3 (AIDS) Classifications among Young Adults Aged 20–24 Years, by Sex, 1985–2011—United States and 6 Dependent Areas Note. All displayed data have been statistically adjusted to account for reporting delays, but not for incomplete reporting.

6. Diagnoses of HIV Infection among Adolescents and Young Adults Aged 13–24 Years, by Transmission Category 2008–2011—United States and 6 Dependent Areas Note. Data include persons with a diagnosis of HIV infection regardless of stage of disease at diagnosis. All displayed data have been statistically adjusted to account for reporting delays and missing transmission category, but not for incomplete reporting. a Heterosexual contact with a person known to have, or to be at high risk for, HIV infection. b Includes hemophilia, blood transfusion, perinatal exposure, and risk factor not reported or not identified.

7. Diagnoses of HIV Infection among Adolescent and Young Adult Males, by Age Group and Transmission Category 2011—United States and 6 Dependent Areas Note. Data include persons with a diagnosis of HIV infection regardless of stage of disease at diagnosis. All displayed data have been statistically adjusted to account for reporting delays and missing transmission category, but not for incomplete reporting. a Heterosexual contact with a person known to have, or to be at high risk for, HIV infection. b Includes hemophilia, blood transfusion, perinatal exposure, and risk factor not reported or not identified.

8. Diagnoses of HIV Infection among Adolescent and Young Adult Females, by Age Group and Transmission Category 2011—United States and 6 Dependent Areas Note. Data include persons with a diagnosis of HIV infection regardless of stage of disease at diagnosis. All displayed data have been statistically adjusted to account for reporting delays and missing transmission category, but not for incomplete reporting. a Heterosexual contact with a person known to have, or to be at high risk for, HIV infection. b Includes blood transfusion, perinatal exposure, and risk factor not reported or not identified.

9. Diagnoses of HIV Infection among Persons Aged 13 Years and Older, by Sex and Age Group, 2011—United States and 6 Dependent Areas Note. Data include persons with a diagnosis of HIV infection regardless of stage of disease at diagnosis. All displayed data have been statistically adjusted to account for reporting delays, but not for incomplete reporting.

10. Diagnoses of HIV Infection among Adolescents and Young Adults Aged 13–24 Years, by Race/Ethnicity, 2008–2011United States and 6 Dependent Areas Note. Data include persons with a diagnosis of HIV infection regardless of stage of disease at diagnosis. All displayed data have been statistically adjusted to account for reporting delays, but not for incomplete reporting. a Hispanics/Latinos can be of any race.

11. Rates of Diagnoses of HIV Infection among Adolescents Aged 13–19 Years, 2011—United States and 6 Dependent AreasN = 2,316 Total Rate = 7.6 Note. Data include persons with a diagnosis of HIV infection regardless of stage of disease at diagnosis. All displayed data have been statistically adjusted to account for reporting delays, but not for incomplete reporting.

12. Rates of Diagnoses of HIV Infection among Young Adults Aged 20–24 Years, 2011—United States and 6 Dependent AreasN = 8,140 Total Rate = 36.3 Note. Data include persons with a diagnosis of HIV infection regardless of stage of disease at diagnosis. All displayed data have been statistically adjusted to account for reporting delays, but not for incomplete reporting.

17. New HIV (non-AIDS) diagnoses among young men who have sex with men, New York City, 2014 • The trends seen locally in NYC are consistent with national HIV surveillance data on HIV diagnoses at publicly-funded testing sites. • Results also suggest that increased HIV testing does not explain this increase. Rather, a real increase in new HIV infections and/or improved targeting of testing to at-risk persons likely explain these trends. • These findings have significant implications for refocusing HIV program outreach, prevention and clinical services

19. What are the unique developmental issues that put adolescents and youth at risk for HIV infection? • Sense of immortality • Risk taking is the norm • Emerging sense of identity • Emerging sense of autonomy and independence • Challenging authority figures • Experimentation with sex and gradual development of sexual identity • Experimentation with substance use • Peer pressure

20. Why do we need to have HIV related services specifically for adolescents and youth?

21. Core Elements of A Successful Adolescent HIV Care Program • Competent providers who enjoy working with youth • Staff that can relate to the “world” youth live in • Youth friendly space in a discrete location • Comprehensive and multidisciplinary services • “One Stop Shopping” principle vs. care by referral • Services that match the needs of the local youth population • Grant funding • Really “cool” logo and outreach materials

23. Core Elements of A Successful Adolescent Care Program (cont.) • Institutional support • Removal of barriers youth face when seeking to independently access health care services • Free or low cost care especially for laboratory tests and pharmaceuticals • Essential community linkages to ensure bilateral referrals of youth for services – “meet the youth where they are” (CBO’s, churches, schools, informal youth networks, etc) • Provide on-site and venue based HIV counseling and testing • On-site prevention services

24. Multidisciplinary Team • Adolescent Medicine Medical Providers- Physician, PA or Nurse Practitioner • Nursing • Mental Health Providers- Psychologist, Psychiatrist, Social Worker • Case Management • Outreach- Outreach Coordinators, Peer Educators • Research

25. Youth At Risk for HIV • Young males who have sex with other males regardless of their sexual identity • Heterosexually active females • Transgender youth • “Ballroom” community • Sexual abuse • Survival sex • Teen pregnancy • Youth in foster care system • Homeless youth • Substance using youth • Youth in justice system • Long term survivors of perinatal HIV infection

26. HIV Counseling and Testing for Youth • ESTABLISH RAPPORT!!!!!!!!!!! • Make youth feel comfortable to answer or not answer questions • Set a non-judgemental tone • Fully define terms of confidentiality before asking any specific personal information including partner notification and exceptions to confidentiality-abuse, suicidal/homicidal ideation • Written consent for HIV testing NOT required; documentation in clinical note sufficient • New York State Law (2010) requires doctors to routinely offier HIV testing to all patients between 13 and 65 years • Explain a minor’s right to consent if <18 years of age

27. Youth Rights to Consent and Confidentiality in New York State • STD screening and treatment • Family planning/birth control • Prenatal care • Termination of pregnancy • HIV counseling and testing • HIV care • Substance abuse treatment • Mental health services • Transgender care

28. HIV Counseling and Testing for Youth (cont.) • Assessment of any current HIV-related symptoms or symptoms that might suggest acute HIV infection (within past 6 months) • Any other signficant medical history • Social history : living situation, emotional and social support, identification of supportive adult to whom adolescent can disclose confidential HIV and non-HIV related information, peer relationships • Family history: health status of biological parents, teen maternity or paternity, custody arrangements/foster care, history of family illness-medical and psychiatric, substance use environment, domestic violence

29. HIV Counseling and Testing for Youth (cont.) Substance Use History: use of alcohol, tobacco, marijuana, ecstasy, cocaine, crack, “crystal meth”, opiates, steroids, hormones, heroin, and other substances (ketamine, GHB, “club drugs”); youth attitudes towards substance use Mental Health History: brief self esteem description; history of anxiety or depression; history of suicidal ideation/gestures/attempts; sexual abuse or assault; history of receiving counseling services

30. HIV Counseling and Testing for Youth (cont.) • Sexual history • Age at initiation of sexual intercourse • Pattern of sexual relationships, number and gender(s) of sexual partners • Sexual orientation – sexual behavior vs. sexual identity • Types of sexual experiences, specifying oral, vaginal, and anal intercourse; don’t be afraid to ask very specific questions • Contraceptive history and current practices, specifying frequency and condom use • Self-assessment of safer sex practices • Pregnancy/paternity history • Sexual abuse (personal or family) • STDs

31. Pill to Prevent H.I.V. Gets a Prominent Backer: Andrew Cuomo New York Times, JULY 3, 2014 “On Sunday, Gov. Andrew Cuomo announced an ambitious goal: Ending the AIDS epidemic in New York State by 2020.” Goal of 750 new infections in 2020, down from about 3,000 in 2013 and 14,000 at the epidemic’s peak in 1993. Three pronged strategy: 1) Promotion and expansion of HIV negative people on pre-exposure prophylaxis (PrEP); Truvada was approved in 2012 by FDA as protection against new infections 2) Testing all New Yorkers and getting those who test HIV+linked to HIV care and get started on anti-retroviral medications with a goal of viral suppresion 3) Retention of HIV-positive people to stay in treatment and on medication with the goal of HIV viral suppression

32. Efficacy of HIV PrEP Randomized Clinical Trials • iPrEX Study (NEJM 12/10): MSMs, Peru, Ecuador, South Africa, Brazil, Thailand, and the United States; 44% reduction in HIV transmissionoverall; 92% reduction in those with detectable TDF drug levels • TDF2 Study (NEJM 8/12): heterosexual men and women; Botswana; 62% reduction in HIV transmission; Participants who became infected had far less drug in their blood, compared with matched participants who remained uninfected • Partners PrEP Study (NEJM 8/12): heterosexual HIV serodiscordant couples; Kenya and Uganda; 75% reduction in HIV transmission overall; 90% reduction in those with detectable levels of TDF in their blood • Bangkok Tenofovir Study (Lancet 6/13): injection drug users; Thailand; 49% reduction in HIV transmission overall; 74% reduction in those with detectable levels of TDF in their blood

34. Challenges to PrEP Implementation in Adolescents and Young Adults Insurance issues-uninsured vs. inability of youth to access their insurance information from parents/guardians High risk minors cannot consent on their own for PrEP Lack of information about PrEP in the highest risk groups General stigma around HIV Controversy around “Truvada whores”

36. Antiretroviral Use In Adolescents • General rule of thumb: use adult dosing for Tanner III and above • Adolescents, from a developmental perspective, require more concrete guidance directly from physicians with respect to ARV treatment • The provider should assess a youth's readiness to start and ability to adhere to treatment prior to dispensing any medications • Decisions pertaining to ARV therapy should be weighed against clinical factors (e.g., CD4 count, viral load, and HIV-related symptoms) as well as non-clinical factors (e.g., living environment, mental health, HIV disclosure to others, pregnancy, and health beliefs)

37. Antiretroviral Treatment Adherence Issues In Adolescents Don’t make assumptions in advance about an adolescent’s ability to adhere to treatment Give the adolescent the opportunity to be honest about their feelings towards taking medication Use simpler regimens where possible (eg. Combination pills, once-a-day) An assessment of treatment adherence should be performed at every visit to the clinic

38. Antiretroviral Treatment Adherence Issues In Adolescents Adolescents beginning on ARV therapy should be seen at least 2 weeks after starting therapy, if not sooner, to monitor for issues such as adherence, toxicity, and proper dosing Directly Observed Therapy- can be done in different settings such as HIV or substance abuse treatment clinics, in the patient’s home with home care or public health nurses Role of HIV treatment support groups, motivational interviewing

39. Special Needs of Sub-populations of Youth with HIV • Perinatally infected youth • Adolescent/young adult females with HIV • Young MSM/Gay youth • Transgender youth

40. What about youth infected with HIV perinatally?

46. Trends in Long Term Survival from Perinatal HIV Infection Currently, the proportion of all HIV infected persons ages 13-24 years who were infected perinatally is at its peak. This proportion will likely decrease over time, given the reduction in perinatal HIV transmission since the 1990s. As very few infants currently are born with perinatal HIV infection (less than 10 in all of NYS in 2013), in the future the overall size of the population of long term survivors of perinatal HIV infection will decrease. Accordingly, the majority of those who are perinatally HIV-infected are older adolescents and young adults who require transitioning from adolescent to adult health care services and providers.

47. Unique Clinical Issues in Perinatally Infected vs. Behaviorally Infected Youth Perinatal: more likely to be in more advanced stages of HIV disease and immunosuppression more likely to have hx of OI’s with complications/disabilities (eg. blindness, O2 dependent, chronic renal failure) more likely to have heavy ARV exposure hx therefore more likely to have multi-drug resistant virus more likely to require HAART to control viremia, low CD4 counts

48. Unique Clinical Issues in Perinatally Infected vs. Behaviorally Infected Youth Perinatal (cont.): more complicated ARV regimens (eg. “mega-HAART”) more complicated non-ARV medications such as OI prophylaxis/treatment greater obstacles to achieving functional autonomy due to physical and developmental disabilities/greater dependency on family (eg. “adult” vulnerable child) when pregnant, higher risk of complications during more advanced stages of disease more likely to have cumulative losses of biological parents to HIV/AIDS

49. Differences in HIV Care Models:Pediatric vs. Adolescent Pediatric: • family-centered and multidisciplinary care with pediatric expertise • medical provider has more long standing relationship with care giver at home • primary care approach integrated into HIV care • issues of HIV disclosure to patient and youth’s confidentiality/right to consent • care usually offered in discreet, child-friendly and intimate setting • teen services supplemental to existing services

50. “Supplemental” Clinical Services for Perinatally Infected Youth • Sexuality • Pelvic examinations/Pap smears • STD screening • Pregnancy • Substance use • Issues of treatment options • Treatment adherence