For women and girls who acquired HIV at birth (or who parents a child who acquired HIV at birth or infancy), their life course has uniquely different experiences and living with HIV since birth or infancy can present many new obstacles along the way. A Person who acquired HIV at birth or infancy has no life experience without HIV – they are lifetime survivors (those living with HIV since birth), and it is important to acknowledge the levels of impact this has for them. Acknowledging the impacts of compounded experiences of living past one’s own parents, grandparents, and caregivers; navigating life stages and growth without a ‘guide’, and the compounded experiences of grief, loss, and survivor’s guilt. Further, lifetime survivors often have to navigate their community being erased while trying to fight for existence.
Across all stages, it is important to consider disclosure, potential of facing stigma, and understanding your rights, protections, and opportunities, especially based on where you live. Knowing your rights and protections can provide a sense of safety against bullying and disclosure of personal health information. We encourage you to seek out peer and other support systems to learn more about living and thriving with HIV, access to quality medical services, and preparing to move beyond pediatric care, into adult care and specialty care as needed.
For women and girls who acquired HIV at birth or early childhood, key considerations include:
- Access to healthcare and treatment, including mental healthcare
- Lifelong management and adherence to treatment
- Transition to adult care
- Support groups
- Managing coexisting conditions
- Advocacy and advocacy networks
- Medical adherence
- Case management
- Sexual and Reproductive Health, Rights, Pleasure, and Justice
- HIV Stigma
- Youth mental and social wellbeing and exposure to stigma (internal and external)
- The 5 W’s of sharing your story (Disclosure)
- HIV Criminalization
- Survivor’s Guilt, Grief, and extensive/extended loss
- Dental care