|Photo credit: Telegraph.org.uk|
You may not want to face it. Heck, I don't know if I want to face it. Because that means accepting kids grow up. But they do, and they will. Mine, yours, and theirs. They don't stay babies forever. They grow up. And one thing that happens to (most) people when they grow up is that they have sex.
Yes, I said sex. Sex. Sexsexsexsexsex. We need to talk about it. It's not an easy topic, which is even more reason why we need to talk about it. I get that it's uncomfortable; I'm a Christian woman living in the American South from an immigrant family. It's not exactly a topic of conversation for the dinner table. However, the taboo surrounding talking about matters of sexuality fuels a lot of problematic mindsets and behaviors. We need to, and can, do better.
Back to the topic.
Medical advances have dramatically reduced perinatal transmission of HIV over the last two decades. And as most people know, with adequate treatment, the likelihood of a baby born to an HIV+ mother has dropped from ~25% or higher to virtually zero. That's great news, and countless positive women have given birth to HIV- children since the 1990's as a result.
The people, including infants and children, who were HIV+ before these advances were widespread didn't vanish into oblivion. Furthermore, though positive births occur a lot less frequently, they still occur, particularly among pregnant women who are not aware of their status and/or are not in care.
(And though we have a lot of information about how to prevent it, HIV transmissions via intercourse and other means do still occur too.)
I am a married woman. I obviously have sex. And so do most people you encounter. Young and old. Male and female. Married or not. Heterosexual or not. Cisgender or transgender.
Focusing on prevention is very important. Dispelling stigma is also important.
When it comes to some of the more common forms of HIV advocacy I see originating from people involved with pediatric HIV, including parent and family advocates (whom I deeply admire and support), I'm seeing FAR too much emphasis on how HIV is not transmitted via casual contact. I read it over. And over. And over. (And over.) But from these same sources I'm NOT seeing enough focus on the fact that HIV is also not easily transmitted even during many forms of non-casual contact. ESPECIALLY if a person is engaged in care and their HIV viral load is suppressed via medication. The onus falls upon adult HIV advocates to carry that part of the message completely on their own.
And that's a problem. All contact is not casual. And if we focus all of our attention on the safety of casual contact, we miss opportunities to educate people about what science has taught us about intimate contact--that HIV transmissions are not the norm with proper treatment, awareness, adherence, and support in place. About treatment as prevention (TASP) and about pre-exposure prophylaxis (PrEP).
I personally do not want any person living with HIV to feel forever condemned to "the friend zone" because of transmission fears, or to feel forced into lifelong celibacy if that is not their desire. I don't want anyone living with HIV to feel that they are only able to date other positive people. There's NOTHING wrong with dating and falling in love with someone who shares the diagnosis, but that should be a CHOICE; if a person desires to date someone who is also HIV negative, they should feel open to doing so.
Nor do I want people living with HIV whose partner is not also positive to feel like they need to live for several decades from youth into their senior years using a condom EVERY TIME they lay down with their life partner. What is realistic about that? That simply isn't going to work for everyone. For many couples, yes. For many others, no.
With or without anyone's permission or approval, people living with HIV are, just like HIV negative people,,GOING to have sex, and they're going to have it THEIR way. Which for many doesn't include condoms. And if there are other prevention options out there, what is wrong with that? If an informed couple decides to meet with their doctor to have a discuss about their options, including PrEP, let's not unintentionally throw them under the "unprotected sex" bus (and that is an outdated term anyway; the CDC and many others now use "condomless sex" instead).
Same goes for the serodiscordant couple who is from a devoutly Catholic family and isn't having "protected sex." Maybe the wife living with HIV has decided to use PrEP because she wants to have loving, hot, passionate sex with her husband, but a condom isn't an option because of their religious beliefs. Ditto for the person with Sensory Processing Disorder and/or the person who is Autistic who uses PrEP because they cannot bear the constricting feeling of condoms due to their senses are more heightened than the average person. They might have to have "unprotected sex" because the sensation of wearing the condom is practically torturous, but that doesn't mean they aren't employing other ways to prevent transmission while having an active sex life.
Or even the person who isn't in a relationship wants to have random hook-ups with strangers but utilizes treatment as prevention and PrEP as options to prevent potential partners from possible HIV risk, who are we to condemn them with regard to transmission risk? I mean, you or I can judge their lifestyle choices all we want or don't want, but we shouldn't unintentionally conflate that with them being irresponsible about HIV merely because a condom may not have been used.
With regard to breastfeeding, I don't have as much information to justify a firm stance on universal breastfeeding among positive moms, but in some regions of the world where breastfeeding is the standard of care among mom living with HIV for various reasons, there is some research data about ways to reduce transmission risk with this too. It isn't necessarily always as huge a risk factor as it might seem either. But even if it is, women living HIV, especially those who are mothers, are stigmatized enough without flippantly and casually throwing breastfeeding references into blanket statements about HIV. In Western nations the population with the highest incidence of HIV is not exactly known for high breastfeeding rates anyway, so in many ways bringing up the risk of transmission via breastfeeding is generally a moot point.
Basically, our words about casual and non casual HIV transmission matter. We need to be conscientious in both what we say and what we don't say. Focusing just on the lack of transmission risk in casual transmission is incomplete - and in a sense, I believe it's responsible. It's not enough; it's a Band-Aid. If you have an HIV affected family, you already know you have to educate people and advocate for your family's needs. This is no different.
Don't just say "HIV is transmitted through unprotected sex with an HIV+ partner, breastfeeding, and childbirth" or things like that. If you're going to say that, you need to, while you are educating, also make sure that you explicitly state that even those things carry an extremely low transmission risk too if a person is engaged in care. And you need to be sure that you explain clearly about PrEP, and about treatment as prevention, about the less than 1% perinatal transmission rate for positive pregnant women, and about other related things.
Why am I saying this? Because it needs to be said. Because if you stop at casual contact and don't get to the "nitty gritty," while you may indeed convince ppl that HIV is nothing to fear in casual contact, you are unintentionally implying that it IS something to fear with non-casual contact. Because without saying this, you're just not saying enough. It's like trying to bathe yourself by rubbing body wash or soap all over your soiled body parts, but not running water to wash it off.
There's a debt associated with sticking with solely a "casual transmission" argument. In the short term, you might win the battle. Johnny might be welcomed with open arms onto the soccer team at age 8. But guess what? He might be unfairly shunned in the dating market at age 15. Because dating may result in contact that goes beyond casual. And by your omission you've helped people fear that (non casual contact) occurring.
That type of advocacy...the whole "it's just a child" defense feeds into the "innocent victim" persona. Intentionally or unintentionally. And that may work when your child is small. But I guarantee you that few uninformed people are going to find the fact that your child was "born that way" to be very reassuring if they are feeling bothered by the prospect of your HIV+ child (now older) having a sexual future with their HIV- son or daughter. They're not going to say," Oh, you have perinatal HIV? Oh, then it's okay then. Silly me, I thought you contracted it through having sex or something like that; I didn't realize that you were JUST born with HIV...I'm totally cool with everything now. Yay HIV!"
No. It's not going to be like that. Because no matter HOW someone "got" it (which, truthfully, isn't people's business anyway), the point is that they have it. HIV is HIV is HIV is HIV. They're going to behave the same way with your HIV+ child in the future that they behave with HIV+ adults today. With fear. With anger. With disdain. Unless WE change things.
We need to step out of our perinatal HIV bubble. Yes, perinatal HIV is important. And definitely not sufficiently addressed. But we need to keep in mind that kids with HIV grow up. And they become adults. And we have a responsibility to the adults that they will become to support the adults that are here right now.
People with HIV have as much a right to a fulfilling, multiple-orgasm inducing, non-stigmatized sex life as HIV negative people do. And we ALL need to help make that message as well-known as the other messages about HIV not being a death sentence. We need to position ourselves alongside HIV+ adults, not just HIV+ children. In fact, NOT alongside actually; BEHIND. They are the experts. We need to listen to them. Befriend them. Learn from them. Fight for and with, them.
One critical way to fight? Join in the fight against HIV criminalization. HIV is not a crime nor should it be treated as such - yet in 11 US states your HIV + child can be arrested for spitting on someone even though HIV can't be transmitted that way. In five states, transmission of HIV carries a harsher prison sentence than murder. The community-led Positive Justice project, for example, welcomes new members to its national working groups who are interested in helping address HIV criminalization; you could send them an email and inquire about joining them! (In addition to or in lieu of that, you could look into joining in with other great HIV advocacy organizations.)
If we do nothing, we risk our children facing the plight that Cicely Bolden faced. Or Elisha Hensen. Or any number of people who were discriminated against or killed because they dared to reveal their HIV status to someone.
I for one aren't going to let that plight become any part of my family's future. I choose to stand with the positive community. I am all for the needs and the rights of children. But I will signal boost and support the adults, who are paving the way, with every ounce of my being.
And we need you too! There's room at the table. You are welcome.
Please join us.