HIV and younger women

1. HIV and younger women

2. Contents Introduction Transition of care Treatment considerations in younger women Emotional health Stigma and disclosure Sexual and reproductive health issues Examples of initiatives for younger women

3. Introduction

4. Young women and HIV – the statistics ‘Young people’ are defined as those aged 15-24 years1 • Globally, there are over five million young people living with HIV2 • In sub-Saharan Africa, HIV prevalence among young women is more than twice as high as among young men1 • Over 60% of all young people living with HIV are young women3 • Every hour, 50 young women are newly infected with HIV4 • Young women with HIV can now be expected to have a near normal life expectancy5 1. UNAIDS, 2013; 2. UNAIDS, 2012a; 3. UNAIDS, 2012b 4. UNAIDS AIDS by the numbers, 2013; 5. Hogg, 2013

5. Two populations of young women live with HIV infection globally

6. Perinatally and non-perinatally acquired HIV Non-perinatally acquired HIV (N-PAH) Perinatally acquired HIV (PAH) • Globally, young people account for 39% of all new adult HIV infections1 • In Europe (2012), 11% of newly reported cases of HIV were among young people2 • Each day, >2,400 young people contract HIV3 • Women account for 47% of all new adult infections1 • Every hour, 50 young women are newly infected with HIV4 • The average age of children with PAH in many European cohorts is now over 13 years5 • In the UK, almost a third of children with PAH are ≥15 years old5 • In 2012, there were approximately 1.5 million pregnant women living with HIV6 • In developed-countries, MTCT of HIV is a rare event (<1% in Western/Central Europe)7 • Rates of >30% still seen in some developing countries, therefore children still being born with HIV8 • With effective treatment, many girls with PAH are surviving into young adulthood and beyond9 1. UNAIDS, 2013; 2. Janiec, 2013; 3. UNAIDS, 2012a; 4. UNAIDS AIDS by the numbers, 2013; 5. CHIPS Study, 2011; 6. UNICEF Stocktaking report, 2013; 7. ECDC, 2012; 8. UNAIDS, 2012b; 9. Mofenson and Cotton, 2013

7. Young women are more biologically susceptible to HIV • Cervical ectopy or an “immature cervix”1 • Increased mucosal surface area for mucosal HIV exposure compared with men2 • Increased likelihood of trauma to the immature genital tract during sex1 • More likely than males to experience asymptomatic STIs, and the presence of STIs may enhance transmission of HIV1 1. Canadian AIDS Society, 2012; 2. Yi et al, 2013

8. Risk factors and risk reduction strategies in younger women • Biological susceptibility • Early sexual debut • Cross-generational sex • Low perception of risk • Substance use • Transactional sex • Low socioeconomic status • Lack of empowerment within relationships • Fear of abandonment • Lack of access to health services • Intimate partner violence • Anal sex INTERVENTIONS • Gender-specific risk-reduction education • Improved access to sexual and reproductive health services • Delayed child marriage • Access to condoms • Economic support • Programmes to address cultural norm RISK FACTORS http://www.unicef.org/esaro/7310_Gender_HIV_prevention_among_youth.html; http://data.unaids.org/GCWA/GCWA_BG_prevention_en.pdf; Cluver, 2013

9. Transition of care

10. Transition of care is defined as . . . The ‘purposeful, planned process that addresses the medical, psychosocial and educational/vocational needs of adolescents and young adults with chronic physical and medical conditions as they move from child-centred to adult-orientated health care systems’ GOAL: To ensure the provision of uninterrupted, coordinated, developmentally- and age-appropriate, and comprehensive care before, during, and after the transition CHIVA Guidance on Transition for Adolescents living with HIV 2011

11. Increasing numbers of girls are transitioning towards adult services • In the CHIPS study (n=1,835 children living with HIV in the UK)1 • 37% of young people in paediatric care are ≥15 years of age and preparing for transition • >25% have already transitioned A similar pattern is seen in most well resourced countries with access to HAART1 Little evidence available on the experiences and outcomes for those who have transitioned It is suggested that MDT transition services can improve healthcare experiences for young people2,3 CHIPS=Collaborative HIV Paediatric Study MDT=Multidisciplinary team 1. CHIPS, 2013; 2. Campbell, 2010; 3. Bundock, 2011

12. Steps towards successful transition of care PHASES OF TRANSITION Last years in primary school • Starting the process in discussion with parents / carers • Starting discussions with the young woman • Full knowledge of HIV diagnosis • Increasing autonomy / privacy • Combined consultation with adult team • Fully integrated into adult clinic Late adolescence CHIVA Guidance on Transition for Adolescents living with HIV 2011

13. Successful transition of care requires partnership from all stakeholders • The child • Spend time with paediatric health professionals alone • Input into choice of adult care centre/transition plan • Meet with adult care providers • Agree which shared care health professionals are permitted to receive a copy of the discharge summary • Consider engaging with peer support • Families/Carers • Help to develop confidence and skills to negotiate relationships and to delay early sex and resist peer pressure • Help to develop independence • Support adherence • Provide guidance and encouragement and maintain openness and honesty • Health professionals • Build trust, respect and rapport • Develop comprehensive transition plan • Offer appropriate information and advice, which is easy to understand, to encourage safe choices around sexuality and health • Provide details of support groups/peer support • Introduce adult services and practitioners gradually • Address psychosocial needs as well as medical • Offer support to families/carers CHIVA, 2011

14. Young women entering transition experience myriad challenges • Stigma & disclosure • Impact of HIV in other family members • Diagnosis in adolescence • Migration and cultural aspects • Emotional wellbeing Psychological issues • Adherence • Drug resistance • Prolonged exposure to HAART • Neurocognitive impact of HIV Medical challenges • Safe sex and pregnancy prevention • Sexual health • Negotiating relationships and disclosure Relationships and sexual health CHIVA Guidance on Transition for Adolescents living with HIV 2011

15. Perinatal acquisition1 No previous knowledge of HIV status Loss of emotional support Obstacles in achievement of career milestones More complex clinical issues than those with N-PAH Specific challenges to successful transition by route of HIV acquisition Non-perinatal acquisition1 Non-disclosure to primary caregiver High rates of homelessness and incarceration Stigma of being a substance user or a teenage mother High rate of disengagement from services2 1. NY State Department of Health AIDS Institute, 2011; 2. Hughes, 2013 N-PAH, perinatally acquired HIV

16. Challenges faced by transition services Differences in expectations and clinic cultures Adolescent/family resistance to change Communication challenges Difficulty for paediatric care team in separating from long-term patients Inadequate time to offer comprehensive support Challenges to transition Identifying providers who are willing/able to offer transitional care Lack of knowledge of accessing adult services 1. Hamblin, 2011; 2. NY State Department of Health AIDS Institute, 2011

17. Transition as a positive experience Help young women to live a ‘normal’ life and not be treated differently Limited stigma Ensure young women are able to talk about HIV with family, friends and/or partners Develop strong relationships with individual healthcare professionals Ensure effective learning about HIV and treatment Help young women to manage HIV, taking treatment and accessing services independently Ensure positive perceptions of adult services Hamblin, 2011

18. What care needs to be provided? Diagnosis ART initiation Sexual and reproductive health Transition support Adherence advice Independence from family to individual Disclosure Protection, care & legal support Stigma & discrimination Psychosocial wellbeing Mental health 1. Hamblin, 2011; 2. AIDStar-One, 2012

19. Different models for transition The selected transition model is determined by the patient, available resources and geographical setting 1 3 Family Clinics: Integration Specialist Services: Separate youth clinic 2 Specialist Services: Handing over from paediatric to adult services CHIVA Guidance on Transition for Adolescents living with HIV 2011

20. Treatment considerations in younger women

21. Clinical considerations in young women with perinatally vs non-perinatally acquired HIV NY State Department of Health AIDS Institute, 2011 OI, opportunistic infections

22. Considerations for treatment choices in younger women with HIV Drug / alcohol use Pregnancy Drug-drug interactions Contraception / birth control Co-morbid conditions Maximise efficacy, safety and adherence Fertility Access and affordability Adherence Drug resistance Treatment experience Agwu, 2013

23. ART in younger women living with HIV • Most young women living with perinatally acquired HIV are on ART1 • Young women with non-perinatally acquired HIV may be initiating ART for the first time • Recommendations for ART initiation in adolescents >13 years old are often included in adult HIV management guidelines2,3 • Both adult and paediatric guidelines include remarks about adolescent patients: • dosing and management challenges • considering regimens with a higher barrier to resistance given adherence challenges in adolescents 1. Agwu, 2013; 2. DHHS, Panel on Antiretroviral Guidelines for Adults and Adolescents, 2013; 3. WHO, 2013

24. Treatment as prevention • ART can prevent transmission of HIV from a woman living with HIV to a HIV-negative partner, by suppressing viral replication1 • ART is recommended for HIV-positive partners in serodiscordant couples, regardless of CD4 count2 • In 2011, the HTPN 052 Study showed that early ART reduces the risk of women with HIV transmitting the disease by 96%3 1. Anglemyer, 2013; 2. WHO, 2013; 3. Cohen, 2011

25. Resistance to ART drugs is high in young women living with PAH Treatment failure in young people during ART is frequent, develops fast and with more extensive drug resistance than in adults Long exposure to older, less efficacious treatments Variable levels of adherence to treatment • Many regimen switches due to: • Therapeutic failure • New drugs becoming available de Mulder, 2012 PAH, perinatally acquired HIV

26. There are many barriers to adherence in young women with HIV Barriers to adherence are similar in young people with PAH and N-PAH, however, those with PAH report significantly more barriers1 1. MacDonell, 2013; 2. Nichols et al, 2012; 3. Agwu, 2013 Feeling well / complacency

27. Overcoming the challenges of adherence in younger women Important to make medication adherence as user friendly as possible for young women ART Strategies Adherence tools Education and counselling interventions • OD regimens for TN women • Switching TE patients receiving complex or poorly tolerated regimens to OD regimens • Fixed-dose combinations to decrease pill burden • Reminder devices with an interactive component e.g. mobile phone • 1:1 ART education • 1:1 adherence support through counselling • Group education • Multidisciplinary education • Peer support Thompson, 2012 OD, once daily; TN, treatment-naive; TE, treatment-experienced

28. Medical complications associated with long-term HIV and/or ART in young women Metabolic complications1 Cognitive deficits3 Decreased bone mass density5 Chronic lung disease7 Increased cardiovascular risk2 Psychiatric symptoms4 Kidney disease6 1. Barlow-Mosha, 2013; 2. Lipshultz, 2013; 3. Laughton, 2013; 4. Mellins, 2013; 5. Puthanakit, 2013; 6. Bhimma, 2013; 7. Webere, 2013

29. Strategies to help reduce risks of medical complications Bone health1-3 • Weight-bearing exercise • Adequate dietary calcium intake / vitamin D supplements • Avoidance of smoking and excess alcohol • Avoidance of ART related to increased BMD loss CV health1,4 • Smoking cessation • Control of hypertension • Diet and cholesterol management • Diabetes control • Physical activity / exercise • Management of depression 1. Lee, 2006; 2. National Osteoporosis Society; 3. Lima, 2011; 4. Lichtman, 2008

30. Strategies to help reduce risks of medical complications Renal health1 • Regular renal function monitoring • Treat diabetes, dyslipidaemia, hypertension Preserving cognitive function2,3 • Healthy diet • Vitamin D3 supplementation • Exercise • Stress management: meditation, yoga • Smoking cessation • Sufficient sleep • Group interventions • Cognitive rehabilitation4 • Home stimulation programmes (cognitive enrichment and mental activity)5 1. Maggi, 2012; 2. Atkinson, 2010; 3. Levy, 2007; 4.Laughton, 2013; 5. Potterton, 2010

31. Healthy lifestyle choices are important • As women with HIV live longer, they are at risk of premature ageing and its associated medical complications • Adoption of healthy lifestyle choices are essential if young women living with HIV are to be exposed to potential lifelong treatment toxicities that can compound this risk http://www.poz.com/pdfs/Focus_Long_Term.pdf

32. Emotional health

33. Young women with PAH are at high risk for emotional health problems >60% of adolescents with PAH show evidence of a clinical mental health disorder, including depression, anxiety, impulsivity and PTSD1 1. Mellins, 2009; 2. Mellins, 2013 PAH, perinatally acquired HIV; PTSD, post-traumatic stress disorder

34. Young women with PAH are at high risk for emotional health problems Data from major US cohort studies of young people with PAH have demonstrated high levels of mental health disorders Mellins, 2013 PAH, perinatally acquired HIV

35. Free access to appropriate HIV treatment and care may reduce risk of emotional health disorders • Although young women living with HIV may be at risk of emotional health problems, a recent large Spanish study reported that this risk is not dissimilar to that in uninfected young women when there is free access to HIV treatment and care • EVhA-1 Study • Epidemiological case-control, comparative, cross-sectional study • April-November 2011 • 14 national sites • Women aged ≥ 16 to ≤ 22 years • 46 matched-pairs • Women with HIV were clinically stable Galindo, 2013

36. Drug and alcohol use is common in young women living with HIV • Drug and alcohol use is more frequent among young people with N-PAH vs. PAH1 • Individuals with CD4 lymphocyte % <25% have a significantly increased risk of substance use2 PAH N-PAH 1. Conner, 2013; 2. Williams, 2010 PAH, perinatally acquired HIV; N-PAH, non-perinatally acquired HIV

37. Addressing challenges associated with alcohol/drug use in young women with HIV Address intimate partner violence Provide alternative adaptive coping strategies Manage depression Support through traumatic life-events Create environments that empower young people not to drink or use other drugs Provide targeted, gender-specific education about the risks of drug abuse and excessive drinking Wells, 2008

38. Stigma and disclosure

39. The challenges of disclosure in young women with perinatally acquired HIV • Family pressure to maintain diagnosis secrecy • Difficult decisions and conversations, such as explaining school absence, taking medication and coping with physical changes • May disclose to fewer friends than their counterparts with N-PAH • Skipping doses and hiding their medication for fear friends or family might discover their serostatus is frequently reported Calabrese, 2012 PAH, perinatally acquired HIV; N-PAH, non-perinatally acquired HIV

40. The pros and cons of disclosure for young women • Fears around disclosure • May also be a disclosure of sexual activity • Risk of isolation from peer groups • Fear of abandonment, loss of economic security and accusations of infidelity • Fear of violence • Desire to retain moral integrity and status • Discrimination • The benefits of disclosure • Improved emotional wellbeing and fewer symptoms of depression • Less anxiety • Increased social support, acceptance • No need to hide treatment • Easier to plan for the future, discuss prevention Rujumba, 2012

41. Initiatives to help support young women who decide to disclose their HIV status Policy and programme approaches Counselling approaches Community-based initiatives • Training healthcare workers in HIV management • Establishing VCT services • Reforming laws on discrimination and confidentiality • Ongoing counselling and HIV support groups • Mediated disclosure • Involving women in HIV testing and counselling • Promoting tolerance and compassion through • Public information campaigns • Community forums Peer Support WHO, 2004 VCT = Voluntary Counselling and Testing

42. Existing peer support initiatives for women living with HIV

43. Sexual and reproductive health issues

44. Sexually transmitted diseases in young women living with HIV • Leads to increased rates of HIV transmission1 STIs are frequent in young women living with HIV2,3 • Vaginal infections, including bacterial vaginosis and trichomonas vaginalis (TV), are particularly common4 • Uptake of screening is often low following HIV diagnosis in young women with N-PAH3 • Screening for STIs e.g. HSV2, should be conducted routinely • Safe sexual practices should be encouraged N-PAH, non-perinatally acquired HIV HSV-2, Herpes simplex virus-2 1. Ward, 2010; 2. Grant, 2006; 3. Hughes, 2013; 4. Gatski, 2011

45. Sexual health in young women living with HIV • Later onset of sexual debut compared to those living without HIV1 • High rate of unprotected sex (>60%)2 • Sexually active girls are less likely to be on ART than non-sexually active girls3 Perinatally acquired • More likely to be sexually active than those with PAH2 • More likely to have been diagnosed with an STI2 • At HIV diagnosis, >25% of those with N-PAH have concurrent STIs4,5 Non-perinatally acquired 1. Mellins, 2011; 2. Setse, 2011; 3. Brogly, 2007; 4. Grant, 2006; 5. Hughes, 2013 PAH, perinatally acquired HIV; N-PAH, non-perinatally acquired HIV

46. Sexual risk behaviour is high among perinatally infected young women As young women with PAH become sexually active, they may place their partners at risk for HIV • In a US study of young people with PAH aged 10-18 years: • 28% reported sexual intercourse (median initiation age, 14 years) • 62% reported unprotected sex • ART non-adherence was associated with sexual initiation • Only 33% disclosed their HIV status to their first sexual partner • 42% of sexually active young people had HIV RNA ≥5000 copies/mL after sexual initiation • Viral drug resistance was high Effective interventions to facilitate adherence, safe sex practices, and disclosure are urgently needed Tassiopoulos, 2013 PAH, perinatally acquired HIV

47. Cervical abnormalities are high in young women living with HIV PAH, perinatally acquired HIV; N-PAH, non-perinatally acquired HIV 1. Brogly, 2007; 2. Fruchter, 1996; 3. Wright, 1994

48. Human papillomavirus infection (HPV) in younger women with HIV Prevalence is 3-times higher in women living with HIV compared with women living without HIV2 • It is estimated that 12% of women with normal cervical cytology have HPV worldwide1 • Prevalence • Sub-Saharan Africa = 24% • Europe = 14% High-risk HPV can cause intraepithelial neoplasia or the anogenital region including cervical and anal cancers5,6 Low-risk HPV can cause cervix abnormalities and anogenital warts5,6 HIV can lead to cervical high-grade squamous intraepithelial lesions and cervical cancer3,4 Prevalence peaks before 25 years, then decreases progressively1 1. Bruni, 2010; 2. Konopnicki, 2013; 3. Ahdieh, 2001; 4. Palefsky, 2003; 5. Flowers L & Gattoc LP. Contemporary OB/GYN 2012 6. Hariri S et al. VPD Surveillance Manual, 5th Edition, 2011. Human Papillpmavirus: Chapter 5-1

49. Cervical screening guidelines Women living with HIV should receive regular cervical cancer screening, but in many countries uptake is low HIV guidelines recommend that providers: Include cervical cytology (Pap smear) with initial colposcopy as part of initial evaluation Repeat cervical smear annually thereafter Refer immediately to specialist colposcopy services following an initial abnormal smear Screen women with the same age range as HIV-negative women, i.e. 25–65 years old • Monitoring on a case-by-case basis is necessary for sexually active adolescents who may have been immunosuppressed for many years BHIVA, 2011

50. How can cervical cancer screening be improved? Dual approach Education System change Healthcare professionals: Screening all women with HIV, especially 1) of increasing age, 2) with low CD4 counts, and 3) who receive Pap tests elsewhere Integrate HIV care and gynaecologic care Primary care providersand gynaecologists: Difference in screening recommendations for WLWH Increased cervical cancer screening Women living with HIV: Recommendations for annual Pap testing