The Epidemiology and Care of Children, Youth and Families Living with HIV in Canada Stanley Read, MD, PhD, FRCPC Division of Infectious Diseases, HIV Family Centered Care Program The Hospital for Sick Children THE HOSPITAL FOR SICK CHILDREN

Families living with HIV in Canada Many are immigrant and refugee families and those without status People from Africa and the Caribbean disproportionately represented Minority and marginalized groups  Aboriginals  Drug users  Mentally challenged Data collected systematically on all known HIV+ pregnant women and their babies (Canadian Perinatal HIV Surveillance Project)

Vancouver Edmonton Calgary Saskatoon Winnipeg Toronto Ottawa Hamilton London Windsor Kingston Sudbury Montreal Quebec City Fredericton Charlottetown Halifax St John’s Iqualuit Whitehorse Yellowknife

Maternal Ethnicity Total cohort

Can I(we) have a healthy baby?

one of the great achievements in the management of HIV/AIDS optimal ARVs to HIV+ pregnant woman – treat mother and prevent transmission PREVENTION OF MOTHER-TO- CHILD TRANSMISSION

Hospital for Sick Children Clinic: Babies born to HIV+ mothers on ART

Prospective cohort

Renewed efforts should be made to avoid “missed opportunities” of prevention, such as: - universal implementation of HIV testing in pregnancy, 3 rd trimester testing - improved access to antenatal care in situations of addictions, mental health, recent immigration, poverty - efficient communication of test results - partner testing for pregnant women - emphasize avoidance of breastfeeding, pre-chewed feeding Issues:

Monitoring Program for Babies Exposed to ARVs Evaluation of HIV status and evidence of mitochondrial dysfunction at 1, 2, 3, 6 and 18 months and then annually Developmental assessments at 6 and 18 months and then annually

Challenges to Developmental Assessments Many of the children live in an ethnocultural environment reflecting the origin of their parents until they are old enough to go to kindergarten Lack of a control group of children raised in similar situations

Raising a child with HIV

HSC CLINIC POPULATION Approx. 89 HIV+ children and families 67% African and Caribbean 60% - parent(s) born in Africa 15% - parent(s) born in Caribbean 13% - parents born in Canada 1% - Eastern Europe 9% - Asian/South Asian 2% - South and Central America

Caregivers of HIV+ Children Living with parent(s) Extended Family Adopted/ Fostered Total SickKids Toronto 70(79%)8(9%)11(12%)89 Oak Tree Vancouver 24(50%)49(8%)20(42%)48 St. Justine Montreal 65 CHEO Ottawa 28(88%)1(3%)3(9%)32

Challenges of daily living Many families living at or below poverty line, stigma and discrimination Taking antiretrovirals is a difficult, lifetime commitment Many factors involved: -complex psychosocial and ethnocultural issues, stigma/secrecy, access to health care, lack of education, trust, drug use, mental illness Support systems – very important -Hospital – multidisciplinary team -Community – Teresa Group, AIDS Committees, Voices of Positive Women, Women’s Health in Women’s Hands, etc

5-year survival: Pre-1996: 70% 1996 and after: 98% Log-rank p-value =

What to tell and when to tell

Disclosure of HIV to Children How can I tell my children about my HIV? How can I tell my infected child about his or her HIV? Parent’s major concerns: - Child’s well-being and emotional reaction - Family’s well-being, fear that children will tell other people about the HIV -Mothers often fear children will blame them

Process of Disclosing to Children -Consider cognitive development and ability to keep a secret -Start with partial disclosure, emphasizing ‘living well’ with their ‘blood infection’ -Use the words “HIV” (full disclosure) -provide on-going information, hope and support as children grow in understanding

Adolescents and transition

Adolescents: Challenges and Rewards Adolescents with HIV similar to those with any chronic health problem Most have ‘grown up’ with their HIV and the health care team Follow the same patterns: ‘raging hormones’, fluctuations in maturity, attempts at ‘independence’

Difficult to convince an otherwise well teen that they need to take medication to prevent serious opportunistic infections Group support – sessions facilitated by Teresa Group team

Sexual Maturation Prepare for sexual exploration – discussions (Adolescent Medicine) around safer sex Encourage openness – non-critical, non- judgmental approach Disclosure to partner before sex Keep an open door for discussions/problems

Transition – Good-to-Go Program Preparing the adolescent for transition to adult care New responsibilities for self care