Many adoptive families are surprised to find that HIV is a very manageable medical condition. While HIV is a chronic illness that currently doesn’t have a cure, children who are HIV+ can have long, full lives with virtually zero risk of spreading HIV to family, friends, or one day, their spouse or child.
Unfortunately, misinformation and stigma often prevent adoptive families from considering adopting a child that is HIV+. Adopting a child who has HIV is not right for everyone, but it may be right for some families!
Thanks to improvements in medical management and an increase in therapeutic treatment options, the outlook for individuals living with HIV has drastically improved in recent years. HIV is no longer a death sentence. Under the care of a Pediatric Infectious Disease team, children living with HIV are expected to have long, happy, and fulfilling lives. However, there continue to be misconceptions about HIV which drives stigma. This stigma leads to children languishing in institutions with the virus unchecked. Orphanages often struggle with accessing appropriate treatment for kids who have HIV. Without the treatment they need, the virus will compromise a child’s immune system such that their condition progresses to Acquired Immunodeficiency Syndrome (AIDS). This condition leaves children susceptible and every day colds can lead to hospitalization and even death.
The contrast is stark. According to research by the World Health Organization, in resource-poor settings, one-third of babies living with HIV will die before age one, and almost all will die before the age of five. In resource-rich settings (where children have access to consistent medical care), children live normal life spans with unaffected quality of life. Thus, the need for adoptive parents who are willing to love and care for children who have HIV is great.
The Basics: What is HIV?
Human Immunodeficiency Virus (HIV) is a virus carried in the bloodstream that attacks the body’s immune system. HIV is not the same as AIDS. HIV is a virus that if left untreated, can progress into AIDS. While there is no cure for HIV, symptoms and transmission can be controlled through treatment which consists of daily medication and quarterly blood tests. HIV is now considered a chronic yet manageable condition in the United States and in other countries where treatment is readily available. In fact, HIV has become easier to manage than diabetes, with fewer complications.
The Facts: How is HIV spread?
HIV is spread through IV drug use, sexual contact, pregnancy/childbirth, and breast milk. HIV is not spread through casual contact. Hugging, kissing, shaking hands, sharing toys, sneezing, coughing, sharing food, sharing drinks, bathing, or swimming do not pose any risk of transmission. People do not contract HIV from a toilet seat, drinking fountain, doorknob, or pet. HIV is not transmitted through urine, stool, snot, tears, or sweat. There have been no documented cases of household transmission between siblings or family members when an adopted child living with HIV has entered a family. With proper medical management, the amount of virus in the blood of an HIV positive person can decrease to levels that are no longer detectable. With proper treatment, mothers can give birth to a child with only a less than 1% probability of transmission according to HIV.gov.
Medical Management and Treatment*
Medical management of HIV includes lab draws up to 4 times a year to monitor the viral loads (amount of virus in the blood) and monitor the body’s immune system. HIV treatment includes daily or twice daily administration of anti-retroviral medications (ARVs). Compliance with the prescribed regimen of ARVs is the most important factor in keeping the virus at bay.
The Day to Day: What does HIV look like?
Children living with HIV do not pose a risk to people around them. They do not need to be isolated or treated differently. They do however need to take antiretroviral medications every day and visit a pediatric infectious disease specialist up to four times a year. Parents of children who have HIV have described it as the biggest no-big-deal. Managing HIV is mostly about limiting sleep-over situations where children might forget to take their medication and making sure their supply of medication is always sufficient.
In the United States, the main challenge to managing life with HIV is the fear and stigma that surrounds it. While HIV is an easily managed chronic condition, those parenting children who are HIV + report stigma and disclosure as the biggest day-to-day considerations. It’s important to note that your child’s HIV+ status is legally protected. You do not need to disclose your child’s HIV status to anyone—this includes your child’s school, sports team, dentist, and more.
The Good News
HIV is an easily managed chronic condition that many families may be equipped to handle! If you’ve made it this far, it means you’re already doing important work, understanding the realities of parenting a child living with HIV.
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*Please consult your medical provider for more information and specific local resources in your area.