HIV: The Undeserved Stigma

March 15, 2018 Family Stories, HIV, Infectious 3 Comments

Adopting a child with HIV was never on our family radar. In fact, it was so far “off” our radar when I first approached the subject with my very open-minded husband the reaction was an immediate absolutely not.

Like so many other people that grew up in the 80s and 90s and learned about HIV in their middle and high school sex ed classes, our understanding of HIV stopped there. Back in those classrooms, HIV was AIDS. HIV could be easily passed through bodily fluids. HIV was a death sentence. HIV was terrifying.

We were ignorant, and ignorance could have easily stopped us from having the privilege of parenting the most amazing little girl on the planet.

Thankfully, we chose to become educated.

…..

Let’s start with the facts.

1. HIV (Human Immunodeficiency Virus) is a virus that attacks the body’s immune system.

The HIV virus attacks a certain type of white blood cell (the blood cells that attack diseases and foreign invaders) called CD4 cells and replicates itself within those cells, breaking down the body’s immune system making it harder for the body to fight off infections. If left untreated, HIV will eventually progress into AIDS (Acquired Immune Deficiency Syndrome) when the body’s immune system is too weak to fight off infections. HIV does not equal AIDS.

…..

2. HIV is not easily spread.

In fact, unless you’re having sex, being birthed/breastfed, having shady blood transfusions or sharing needles with a HIV positive person, you won’t get HIV. Period. Full stop.

What if my kids share cups? Nope.
What about toothbrushes and one of them has bloody gums? Nope.
What if my child has a cold sore and then kisses me? Nope.
What if… what if…. what if… Nope, nope and, hhhmmmm…. nope.

…..

3. Treatment for HIV is straight forward and uncomplicated.

When we arrived home from China we went straight in for blood work to determine the current “viral loads” (the quantified amount of virus that is present) in her blood, which gave our doctor the baseline in which to start treatment. Many children come home “undetectable” (meaning the viral load is so low, it is not able to be quantified) due to consistent treatment in their orphanage or foster home.

Our daughter’s viral loads were not undetectable, therefore the goal was to get her to that stage as quickly as possible. Our Pediatric Infectious Disease doctor put together her best guess of a cocktail of three medicines, taken twice a day in pill form and, luckily, her first guess was a success and our daughter’s viral loads became undetectable in four months.



Why is undetectable so exciting? Because undetectable means untransmittable.

U=U.

Remember those risky “do not do” behaviors we talked about earlier? Sex, needles, birth? Even if a person is HIV+, if their viral loads are undetectable, there is no risk of transmission. In October 2017, the Center for Disease Control and Prevention released a statement confirming this fact. Again, undetectable = untransmittable.

Not so scary right?

Currently, we take our daughter every four months for a visit with her wonderful Pediatric Infectious Disease specialist for a quick check up and blood draw to confirm she is still undetectable. Viral loads increase slowly so if, for whatever reason, she starts to become medically resistant to her current medications we can catch it early and switch things up.

Right now current med regimens consist of three pills in the morning, and three at night, which is standard for her age/weight. As she grows older treatment options get even easier with single pills once a day being available and clinical trials are underway for an injectable treatment once every six weeks which is combating viral loads just as well as daily pills.

We have chosen to selectively disclose our daughter’s HIV status, a topic that brings much debate within the HIV adoption community. We have found ignorance abounds, but ignorance combatted with a willingness to be educated. Ignorance in and of itself is not the problem, we are all ignorant on topics until we make the choice to become knowledgeable.

When ignorance becomes willful, facts are ignored, and people perpetuate fear regardless of information learned, many HIV+ people will continue to hide in the shadows of society.

We are blessed that our daughter is surrounded by a tribe of family and friends who love her, advocate for factual HIV information, and kick stigma in the face.



HIV is not scary, she is not scary (unless you count that high pitched scream she does when her brothers annoy her, that.is.terrifying), and the only way we can further combat the undeserved stigma surrounding HIV is if more people become educated in truth, and join the movement to kick that stigma in the face.

For more information regarding HIV you can visit the following websites:

Positively Orphaned
REDefine Positive
PKids Online

For information and advocacy specific to China feel free to join the Facebook group here.

– guest post by Erin



3 responses to “HIV: The Undeserved Stigma”

  1. Sierra says:

    I understand that hiv files don’t get completed very often/ not at the same rate of other needs. What can we do to help get more children paperwork ready for adoption?

    • Jenn says:

      Hi Sierra, My understanding is that we just need to request those files more. That way, countries will grow to believe that kids with HIV are adoptable!

  2. Karen says:

    Really great post. Thank you for sharing and sharing so simply.

Leave a Reply

Your email address will not be published. Required fields are marked *

© 2019 No Hands But Ours

The content found on the No Hands But Ours website is not approved, endorsed, curated or edited by medical professionals. Consult a doctor with expertise in the special needs of interest to you.