November 15, 2013
Health writer Heather Boerner now knows that a couple that includes one HIV-positive partner can successfully conceive an HIV-negative baby and keep the negative partner HIV free -- even if the couple has unprotected sex. However, like many others who may not have been following the news on HIV treatment as prevention, just a few years ago she believed not using a condom during sex with an HIV-positive partner meant you'd get HIV, period.
After meeting a serodiscordant couple who had an HIV-negative child via condomless sex and effective HIV treatment and care, she knew this was a story that needed to be told to people outside the HIV community.
Now, Boerner wants to create an interactive Kindle Single to share this and other stories and facts with a wider audience, so that others can learn from these couples' modern version of "having it all": a loving spouse, a healthy baby and HIV.
How did you come to be a health journalist, and to write this story?
I wrote this story a little while ago, so I just reread it. I just feel like, "Oh, I love this story." It's probably my favorite thing I've ever written.
I had been a newspaper reporter for seven years already at that point. I'd been on newspapers since I was in high school. I'm one of those rare people who knew what they wanted to do when they were 15. I had covered all sorts of things. Then I decided I was tired of working at newspapers, and I wanted to do longer form stories.
I'd never really done a lot of health journalism before. What happened is kind of a combination of circumstance and my own personal experience -- which is that I was something like 29, and I realized I really needed to get a hold of my own health.
I stopped eating sugar. I lost a bunch of weight. I really started putting my health first, and it made me interested in health as a journalist. I became interested in my own health, and in the health of other people and what it means to take care of yourself.
I wrote for Planned Parenthood's website. I wrote a lot about sexual health. I mostly write about chronic illnesses. I'd written a lot about lupus, hemophilia, diabetes and multiple sclerosis. That's actually how I came across this whole issue. It was through writing about hemophilia. I'd written for a hemophilia magazine called HemAware; it's the magazine of the National Hemophilia Foundation. They assigned me a story on HIV discordant couples and parenthood -- because, as you probably know, a lot of guys living with hemophilia contracted HIV in the 1980s when there were tainted blood products, before they were able to figure out how to screen the blood for HIV -- before they even knew that HIV was out there.
So I came across all these couples, and they talked about the variety of ways that you can become a parent. I talked to a couple that adopted; I talked to a couple that did IVF (in vitro fertilization) and ICSI (intracytoplasmic sperm injection), which is the safest possible way: You wash the sperm. You inject the single sperm into a single egg. It's extremely high-tech. And they were able to have a baby.
And then I talked to this couple, the Hartmanns, and they told me that they had unprotected sex. I'm a child of the '80s, and my understanding of HIV didn't advance a whole lot past that. I mean, I understood as a health writer that HIV had changed, that there were effective treatments now.
But I think in the popular consciousness -- and my consciousness -- unprotected sex was a death sentence. You know: Always use a condom. Always use a condom. That's the public health message that we all get.
So when they told me this, I was completely stunned, and excited. It really caught my imagination, and so I wrote that article. This was, I don't know, like four or five years ago now. And I stayed in touch with the Hartmanns. I kept wanting to go back and write the story about: How is it possible to have unprotected sex? I would tell people about this; I would say, "Did you know this was possible?" And people would stare at me with their mouths open. I realized I really wanted to do the story.
That's how I ended up talking to other researchers, talking to doctors, finding other couples. And that's how I ended up doing this story.
I think that there are a lot of myths out there around pregnancy and HIV.
Absolutely. What was interesting in writing this story is, I talked to these couples. In the story, I follow two couples, basically, from the moment they fall in love to their first children. And first of all, what struck me: In this particular story, the person with HIV is the man in these heterosexual couples. Dan Hartmann told me, "I never thought I would have a child." He was diagnosed when he was 12. At the time, no one expected anyone with HIV to live very long. So, to be in this world, and be able to have a child, and then talk to these women who are HIV negative -- they're going to their doctors and their doctors know nothing about HIV. They know about pregnancy, but they don't know about pregnancy for people with HIV.
What I found was that doctor after doctor refused to talk to them about it -- or there wasn't enough information, because the research just hadn't been completed yet. That was one of the compelling things to me about this: There was a disconnect between the research that was being done and the information that was available for couples.
There often seems to be a sluggish uptake for primary care doctors -- or even specialist physicians like obstetrician/gynecologists -- to absorb some of the research that's out there.
Absolutely. I think it's really a sign of how HIV has changed that now we need to talk about it; now, OB/GYNs really need to know about HIV to help their HIV-negative patients who are with HIV-positive people. And the whole pregnancy counseling thing that happens in the normal course of a heterosexual woman's doctor's appointment is interrupted by this. Because doctors just have limited knowledge; they just don't know.
What they know is the public health message, which is, "Don't have sex without a condom."
Can you tell us a little bit about the two couples that you interviewed for HIV and Baby Makes Three? Can you tell us how you came to meet the two couples, and how old their children are now?
Sure. The first couple is the Hartmanns, as I mentioned. I came across them in writing this previous article that I did about HIV-discordant couples and parenthood. They're just this amazing couple. They had lived in the Bay Area; they now have moved to the Washington, D.C., area. I believe Dan is a graphic designer.
They just had this story that's a very rare story -- which is that they met in high school. Susan was in the audience when Dan got up in front of his entire high school and told them that he had HIV. They had an assembly around it.
They didn't date in high school, but then they reconnected in their 20s. They were living across the country from each other, and they reconnected and they fell in love. She got pregnant in 2009. I believe she had Ryan in 2009, and they're doing really well, really healthy. They just seem like a really happy couple, and a happy family.
The other couple that I interviewed, I call them in the story Poppy and Ted Morgan. Those are actually pseudonyms. Because of the stigma around HIV, Ted isn't out to everyone about having HIV. So he asked that we use a pseudonym.
They are an interesting couple. In some ways, I feel like they're a little bit more representative of both the struggles that couples face in having a child, and of what people think about HIV. Poppy grew up in this family in the suburbs of Chicago where she described it as being very sheltered. When her parents found out that she was dating someone with HIV, they were extremely unpleased. And when she married him, they didn't talk to her for five years.
She's had to deal with a lot of stigma. But they also have this story that's sort of remarkable, where Poppy moved to San Francisco in 1999 -- they live in San Francisco, still. And she worked at a school. She showed up at the school the first day, and who opens the door, but Ted. He holds out his hand to shake her hand and says, "Hi, I'm Ted. Welcome." She said she looked into his eyes, and she thought, "Oh, my God, this is the guy. This is my guy."
This was not necessarily a welcome thought. She was in a relationship already. It was her second day in San Francisco. And she worked with him. So she was like, "I dont know. This might not be a great idea."
So they didn't date right away, because she was in a relationship. But a year and a half later, they started dating. Poppy's also, I think, typical of a lot of women -- not all women, of course. Women vary just like men vary. But she always wanted to have a child. You know, you ask some people and they just think, "Eh, maybe I'll have a child and maybe I won't." But she always wanted to have a child.
She told me this story about how she would put the cutlery away when she was growing up. She would put the forks and spoons and knives away in the drawer, and she would pretend they were babies that she was putting to bed. So she always wanted to have a child.
So she met Ted and she started imagining a baby with pink cheeks like Ted's. They started dating, and they dealt with this kind of stigma. There's something that happens when you're afraid -- and I'm not talking about Ted specifically here. I'm just talking in general, when people are worried about how other people will perceive them when they're keeping something to themselves. And we know as queer people that if you keep that to yourself, it becomes a secret and it becomes this painful spot in your life. That's sort of what happened for him.
So then they go through the process of trying to get pregnant. And it's a long journey for them. They met in 1999, and Poppy got pregnant in 2012. They had their daughter (who I call in the story Pom-Pom, because that's her actual nickname: Pom-Pom and Poppy) -- they had Pom-Pom in April of this year. She's adorable, and she looks like her dad. After Poppy wanting a baby that looks like her husband for all these years, she looks like her dad, and has strawberry blond hair and his big toes, his stunning toes.
The day that Pom-Pom was born, Ted apparently picked her up and said, "Oh, man, I'm sorry. You're going to put holes in all of your shoes." You know, with these toes, because he has the same toes.
That's where they're at now. And they're still living happily in San Francisco.
One of the big news stories this year was about that baby who was born in Mississippi and was subsequently "cured" of HIV. One of the ways that we've talked about the story on the site is that it's not just a story about carrying a baby; it's more a story about a woman who fell through the cracks of the medical system.
Yeah, because she disappeared for several months.
Right. And I think the stories you're presenting are showing the benefits of being engaged in your health.
Absolutely. And being engaged in treatment. That's one of the primary messages in this story. The story follows these two couples, but then I would also speak to researchers. I spoke to Dr. Pietro Vernazza in Switzerland. I spoke to Dr. Myron Cohen in North Carolina. I spoke to Seth Kalichman in Connecticut. And they all have different perspectives, obviously.
One of the primary studies that we follow is HPTN 052 -- people who are familiar with HIV are familiar with the big study on treatment as prevention. I followed his research through the process, and one of the things that's really true about his study is that the couples are in really good care. They're regularly seen. They're seen way more regularly than most people are seen today. They're counseled about extramarital sexual relationships. They're counseled about other STDs [sexually transmitted diseases] they have. They're checked regularly. There's a level of care that these couples receive that's not typical.
Who do you think will be the audience for your Kindle Single? What will the interactive format be like?
I think there are a couple of different audiences for this. The audience that I really hope will find this are HIV-discordant couples who will relate to what the couples that I feature in the story experience. Because what I found in talking to people is that there's just not a lot of information out there. I mean, there's information, but people have to hunt it down. I think it's a little different now than it was when I started working on this, but people feel really isolated and alone.
So I really hope that those people find it. I hope people who are interested in HIV find it. But I really hope that anyone interested in science stories will read it. And I really hope people with an interest in having a baby will read it. One of the things that attracted me to it as a human being is I'm 39 and I'm at that age where I either have to have a child or not.
There's a whole world of this issue of fertility, and this relationship women have with their bodies and with their fertility. If you're a straight woman, you spend your entire life trying to keep yourself from getting pregnant. And then, when you decide to get pregnant, it's not always easy. It's a shock. It's a shock to the system. You think, "One wrong thing, and I can get pregnant." And then you find out, "Oh, gosh, this is actually work."
What I really want is for people to see that the experiences of these couples are the same as most couples trying to get pregnant and having some sort of challenge. So there are several audiences, essentially.
In terms of the interactive features, how I hope it will look: My goal is trying to raise $6,500, which is quite a lot for an article. I mean, if I get to $2,500, I will be able to publish it just as an e-book, with no photos, no interactive features.
But as I was thinking of this, I thought what we really need to do is take advantage of this medium. It's now possible for people to not just read, but interact with the story. And so what I'm hoping to do if we can reach $6,500 -- and beyond, honestly -- it's like the number of animations and things I'll be able to do will be based on how much we raise. I have all sorts of ideas of what I'd like to do. I'd like to do an interactive map, where you can click on it and look at the different states, and see what the regulations are in that state, in terms of pregnancy and HIV, in terms of reproductive technology.
I'd like to do a timeline where you can scroll at any point in the timeline, from 1999 to the present day, and see where the couples are at, and where the research is at.
Ideally, I'd like to do photos of the couples, maybe some audio slideshows within the book, as well as videos of the couples. What I really hope is that couples will share this with other couples that are trying to do the same thing. I would love to start seeing videos of couples and their children, so we break this silence about what it looks like to have HIV today, and what it looks like to live with HIV, and to have a whole life with HIV, and to have a wife and a child.
Those are all the things that I'd like to do. I really think it's an exciting time, in terms of publishing, to be able to do all these things, to be able to bring people into the story.
The other thing is animation. It's really hard to explain in words what your likelihood is of getting HIV from a single incidence of unprotected sex. But to do an animation that shows the likelihood, that shows how HIV replicates itself in your system -- these are all things that, for people in the HIV community, it's probably obvious, but I'm hoping that there will be people who read this story who aren't familiar with HIV, and aren't familiar with the science today. I really want to share that, kind of make it easy for people to understand and feel like they can relate.
An interesting timeline that's kind of contemporaneous with the progression of what you're describing in terms of research into treatment as prevention is the timeline of the publishing industry: The kind of publication you're describing wouldn't have been possible 10 years ago.
No. Absolutely not. One of the things I think is interesting about this idea of a Kindle Single -- and, for people who don't know what a Kindle Single is: It's a certain branding within Amazon of stories and articles, fiction and nonfiction pieces, that are between 5,000 and 30,000 words. So it is that novella length. And I've read several articles about how, when we were doing print books, it's not financially feasible to publish a novella by itself. That's why books are 200 pages or more.
So we're in this moment now where it's possible to take a 9,000-word article and publish it stand-alone, and get it out to people all over the world. In fact, someone suggested to me that part of the funds go toward translating it to other languages. I laughed and said, "Well, let's get this out in English first, and then do that." But I think that that's a really good point. Because this is happening in the developing world. It's happening in China, in Eastern Europe, and Africa. It would be really great to be able to disseminate it more widely. And that's the option we have now, with the Internet.
Can you talk about how you chose to do crowdsourcing?
I pitched this story to a number of places, and it was never quite the right fit. I kept going back to: I should just publish this myself. And that's a daunting task, right? I started thinking, "Oh, I don't know if I can afford to do that."
Then I realized, as I was looking on Facebook at another one of these crowdsourcing campaigns, that I don't have to go into debt to publish this thing. Because of crowdfunding, it's allowed the project to be bigger than it would be if I published it myself. If I were funding it myself, I wouldn't be thinking about the interactive features; I would be thinking about, let's get the words out, and that's it.
Today, I can go out and I can say, "Let's do graphics. Let's do animations. Let's do photography. Let's bring this story alive." And people are getting on board, which is really exciting.
It must be great to see people invested in your work in a way that's not just about reading it, but actually saying, "I want to make this come alive."
And to get to do things like offer the perks. My particular project is on Indiegogo, but there's obviously Kickstarter, as well. And in both of those, for each donation level you offer perks. Obviously, I offer the book, but then I also offer a bonus chapter on what the children's lives are like now. One of the perks is a podcast that I'm going to put together with some folks at the Bay Area Perinatal AIDS Center at the University of California - San Francisco. They're heavily involved in this. They have a perinatal HIV hotline that is designed for clinicians, but ends up being used by couples because they're desperate for information. And so they're going to talk about the state of the science, and what the options are, and all of that.
So it's creating a community. Just putting together the project creates a community; and then funding the project creates a different community of people who are invested enough to put in $5, $10, $100, whatever it is. It's a lot of work, obviously, but it's really exciting, and it's really fun.
Do you have any final words before we wrap up?
Obviously, I would love it if people would come to the page, read it, watch the video, contribute, share it with people.
The thing that I really want to leave people with, and the thing that I left this project with, is an understanding of HIV as being a different world than it was. It's understood within the HIV community, but it's really not understood in the "lay world." In the rest of the world, in the rest of the culture, people still think of HIV as this death sentence.
And to me, this story is about one of the things that it means to have treatment as prevention. Treatment as prevention is a good, in and of itself, but it makes stuff like this possible. This is one of the meanings of treatment as prevention to me -- this ability to have children.
I would love it if people would come to the Facebook page -- the Facebook page is HIV and Baby Makes Three -- and be part of the community. It's really been an exciting project.
This transcript has been edited for clarity.
Mathew Rodriguez is the editorial project manager for TheBody.com and TheBodyPRO.com.
Follow Mathew on Twitter: @mathewrodriguez.