HIV and Baby Makes Three Busts Pregnancy Myths With True Life Stories
November 15, 2013
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.
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