Heather Boerner is an award-winning journalist and author of Positively Negative: Love, Pregnancy, and Science’s Surprising Victory Over HIV. In her generous interview with me, Heather goes into detail about HIV and parenthood and the advances in medicine that have given hope to couples in which one partner is HIV positive, as well as adoption. Heather’s work can be found in The Washington Post, The Daily Beast, The Atlantic, The San Francisco Chronicle and elsewhere. Contact her and learn more about her work at www.heatherboerner.com.
Meredith: What should the general public understand about HIV and parenthood? How about HIV and pregnancy?
Heather Boerner: The first thing that people need to understand about HIV and parenthood is that it’s a safe and responsible option. It used to be, before the advent of HIV medications (called highly active antiretroviral treatment or HAART), people with HIV progressed to AIDS quickly, and I think people still think that someone with HIV having a child means they will die early and abandon that child. That used to be the sad truth. I spoke to a doctor who has worked with women with HIV for decades, and she remembers women tearfully making the decision to terminate pregnancies because they knew the child would be born with HIV, and probably not live long—and they knew that they probably wouldn’t live long enough to parent that child. But that’s not the way it is today. Far from it.
Today, it’s really possible for people with HIV to live to a normal life span, fall in love, and create a family. It’s safe and responsible.
For years, the primary option, and a good one, was adoption. But there were others, if the woman in the couple was HIV negative. They could use donor sperm so the woman could carry the child. They could take the sperm of an HIV-infected man and submit it to a process called sperm washing, which separates the sperm from the seminal fluid (which is where the HIV lives), and then use the HIV-free sperm to do any manner of reproductive technology, such as in vitro fertilization (IVF) or intrauterine insemination (IUI). Or they could go one step further and do a process called IVF with ICSI, in which a doctor would inject a single sperm into a single egg. HIV-affected couples have been adopting for years, and been doing sperm washing and IVF or IUI since the 1990s. But today, some HIV-affected couples can also have unprotected sex to have a healthy, HIV free baby. That’s what my book is about.
Here’s why this is now possible: HAART can reduce the amount of virus in the body to vanishing—literally. Doctors call this an undetectable viral load. One doctor has described it this way: You put a drop of blood from an HIV-uninfected person next to the drop of blood of someone with HIV but with a suppressed viral load, and they will look the same. You won’t be able to find the virus anywhere in there. The same, roughly, goes for genital fluids. And that means that both HIV-positive women can have babies without passing the virus on to their babies, and HIV-positive men can have sex with their wives without condoms, conceive a child and not pass on the virus to mother or child. They call this treatment as prevention. There’s an additional level of protection, though, for the HIV-negative partner if they plan to have unprotected sex with their HIV-positive partner for conception. The Food and Drug Administration in 2012 approved the HIV drug Truvada for HIV prevention. The idea is that the HIV-negative partner takes the pill every day and it actually prevents any HIV she is exposed to from replicating and spreading in her system, essentially protecting her from infection.
The important thing is that both partners need to have good health insurance and the HIV-positive partner needs to be getting good treatment, adherent to medication, and watch for things like stomach flus that can interfere with the ability of HAART to work. Only about a quarter of people with HIV have suppressed viral loads, but what’s exciting to me is that science shows this is possible.
Meredith: How about for adoption—both for the adoptive parent and the individual placing the child for adoption?
Heather Boerner: I have talked to an HIV-affected couple that’s adopted and their personal experience was positive and relatively simple—meaning that the husband’s HIV status had little to do with the process. Of course, we know that adoption is a very individualized process, so others experiences may vary. I do know that the 1990 Americans with Disabilities Act makes discrimination against HIV-affected couples in adoption illegal. That doesn’t mean that it doesn’t happen though. The best bet is to talk to a network of HIV-affected couples to see what agencies are adoption-friendly. The best place to find such networks is on a site like TheBody.com, which is a well respected clearinghouse of HIV information.
From the other side, it’s also possible to adopt a child with HIV. I’m afraid I can’t provide a lot of detail about what that process is like from the perspective of the person placing the child for adoption, however.
Meredith: Is their own HIV status something the adoptive parents disclose on adoption applications? Does it fall under HIPAA?
Heather Boerner: HIPAA, the Health Insurance Portability and Accountability Act, is really an act that pertains to doctors, not patients. The doctors aren’t allowed to give out your information without your permission. So you’d have to permit your doctor to release your information to an adoption agency. However, an adoption agency is likely to ask about your health history and may ask for a medical exam. The ACLU recommends being honest about your status on your application, and clarifying what having HIV means for you—are you in treatment? Do you have an undetectable viral load? Has it been undetectable for six months, nine months, a year or more? Because HIV stigma is still a very real thing, people may not understand how much HIV has changed. Go through the adoption process anyway. There’s no reason to hold back on your dreams just because some agencies (agencies you will not work with) won’t understand. Seek out the ones that do.
Meredith: Where should HIV-affected couples start if they would like to adopt? Can you list some resources?
Heather Boerner: Absolutely. I’ve peppered a few recommendations throughout this discussion, but I’ll add a few more. By far, TheBody.com is the best resource for HIV-related information. The message boards are helpful, and often, the site will have doctors and researchers answer questions. The Bay Area Perinatal AIDS Center at UC San Francisco is an excellent source for information about parenthood for HIV-affected couples. Their emphasis is on biological children, but I know the staff there and they are helpful, knowledgeable and, if they don’t know, they will help you find someone who does. The Positive Women’s Network is filled with HIV-positive women who can share information and resources. And finally, I feel like I have to give a shout out to both the HIV-Negative Spouses Blog and my book Positively Negative: Love, Pregnancy, and Science’s Surprising Victory Over HIV. Both will help you understand what it’s like to have HIV today, and what it’s like to be an HIV-positive parent.