All Poppy Morgan of San Francisco wanted was to see her husband, Ted, reflected in their child's face. Unfortunately, for many years, this could not be a reality. Ted was HIV positive, and Poppy could not find a way to conceive safely. After many disappointments, including a brief hope for sperm washing that was quickly dashed, Poppy found pre-exposure prophylaxis (PrEP).
Poppy's story was captured by journalist Heather Boerner, who I interviewed last year when she was raising money for her new book Positively Negative: Love, Pregnancy, and Science's Surprising Victory Over HIV. I sat down with Boerner and Morgan to discuss why Boerner wanted to tell the story, whether Morgan will pursue PrEP again for a second child, and why you should always remember doctors are people.
[Editor's note: Both Poppy and Ted Morgan are pseudonyms that Heather Boerner used to tell their story.]
Mathew Rodriguez: Poppy, can you walk us through how you met your husband? Because it's a great story.
Poppy Morgan: I met him on my second day in San Francisco. I moved there straight after college. We both worked at the same place. I was going to this luncheon, and he was one of the greeters. He had like the bluest of blue eyes. He told me his name and I was like, "Wow. You look like a Ted."
I just knew immediately when I met him, this is the one. He's the guy.
I was dating somebody else at the time, so it was kind of weird. But, yeah. So, that's how we met.
Heather Boerner: I'll add to that, if you don't mind. I spoke to Ted [recently]. We had a nice, long conversation and I asked him about when he met her. He said, "I saw her and my first thought was, I'm going to marry her." I was like, "Are you kidding?"
He was like, "No. I am serious." He said he didn't say anything to her at the time, but he said he knew. He said it wasn't anything specifically physical about her; it was just something about her energy, or something.
Has he told you that, Poppy?
Poppy Morgan: Yeah. We didn't talk about that till years later. But I really knew. I knew he knew. And we kind of avoided each other for the first year and a half that we knew each other, just because. It was chemistry that we had.
Mathew Rodriguez: So you're still in San Francisco now?
Poppy Morgan: Yes.
Mathew Rodriguez: In one part of the book there's that moment of hope when California lifts the sperm donation ban for HIV-positive people.
Can you talk about the emotions that you went through -- hearing about the lifting of the ban, and then realizing that that wasn't an option?
Poppy Morgan: When I found out that the legislation had passed, I was so excited. We had already been looking at options for, I think it was, seven to eight years at the time. So I was really excited because I felt like this was the first real option that we have that's affordable, that would be a viable option for us.
I had talked to my doctors about it, and they were like, "Sure, yeah. We'll do the sperm washing." I thought that they knew. I thought that they were on the same page as me. And then we had this consultation with the doctor.
He's like, "This is the consultation. This is how it's going to work. Your husband will give us the sperm sample, and we'll send it off to New York."
I was like, "Wait. What? Why are we sending it New York if it's legal to do it here?" And then he told me that the CDC [U.S. Centers for Disease Control and Prevention] still hadn't established guidelines, and that it would be three to five years. So that was blow number one.
I was like, "OK, well, we can't wait three to five years, so let's continue with this plan." Initially, the plan was that they would send the sperm off to get sperm washed, and then they would inseminate me in the clinic.
Then he told me, "His sperm probably won't be viable because of all the thawing, and freezing, and thawing." He said it could have an impact on the mobility of the sperm. I had gotten my hopes up so high, because it felt like every other door had been shut, and then, finally, the gods who decide the legislation worked in my favor -- and then it was still beyond my control. The fact that his sperm wouldn't be viable -- it was like it didn't matter if I had money, or time, or anything.
Mathew Rodriguez: One of the most powerful moments in the piece was the moment you tell your doctor, "Let me take a risk. I know myself. Let me take a risk."
I just want you to talk really quickly about what it meant to talk to your medical provider -- and this was before PrEP was approved -- and ask to use PrEP.
Poppy Morgan: I have to tell you that every time I talk about this, or read it in the book, I get emotional. It makes me angry and sad, all at once.
I had taken this article on PrEP with me to the doctor. I had emailed it to her, too -- I can't remember if I emailed it before, or after. She knew my husband was HIV positive. My first appointment with her, I talked to her about that. And at that first appointment, she actually asked me if I wanted her to prescribe me Xanax [alprazolam], because she imagined that it would be a really stressful situation to live with a husband who was HIV positive.
I asked her, "There's Truvada [tenofovir/FTC] that I can take to try to get pregnant. Here's this article that talks about how safe it is." She told me absolutely not, "that's unethical, for me to ... " Basically, she felt it was condoning risky behavior.
Again, it was one of those things where it didn't matter. I could have all the money in the world, all the time in the world, and the door was closed, because it was her opinion. How can you change someone's mind?
It was frustrating because, at that point, we were going on 10 years of trying. And the only thing that stood in my way was her prejudice about whether or not, or how I should be, having sex with my husband. That was the lowest point for me of the whole journey. Because now it was like the road was paved for us to do this and then it was just one person's opinion standing in my way -- and it happened to be my doctor. She has to prescribe the medication for me to take the medicine. So it was another door slammed in our face.
I did talk to Shannon at Bay Area Perinatal AIDS Center (BAPAC). She found a doctor for me that would take my insurance, and that would prescribe it. Within 30 days, I was on it, after Shannon set it up. But that was the most heartbreaking and lowest point of the journey, for sure. Because, again, it's like stigma and prejudice. What can you do? You can't buy that away. So it was frustrating, because it was just totally out of my control.
What made it worse was that she had just come back from maternity leave. And so, it was really upsetting to me. I wanted to say to her, "It's really easy for you to just say no and decide this is unethical. But you get to go home to your 3-month-old baby girl." So it was upsetting, yes. Lowest point.
Mathew Rodriguez: When you were considering taking PrEP, did you know any other women who were on it at all? What, if any, kind of network was there to hear about other women who had used PrEP, or wanted to use PrEP?
Poppy Morgan: I didn't know any existed. I thought I was the first one. I had no idea. I had never even met a woman who was married to an HIV-positive man. So I felt very alone. Shannon at BAPAC was telling me that people, couples like us, were contacting her all the time. But I wasn't talking to them.
I was getting a lot of messages on my blog for women in our situation, but the FDA [U.S. Food and Drug Administration] had not approved it. I honestly thought we were like pioneers. I didn't have any knowledge at all that anybody was doing it. So I was excited.
Heather Boerner: You were pioneers. You were one of like 150 people who took PrEP in 2011. That's what struck me. That's part of what was so compelling about your story for me, in writing it. It was happening, but it was only happening in these little discrete pockets, and there was no discussion of it. I think it's really remarkable that it took two years after the FDA approved Truvada for PrEP for people to really start talking about it. And it's really because the CDC [U.S. Centers for Disease Control and Prevention] finally came out with the guidelines. So people feel free to talk about it now.
Poppy Morgan: I stopped taking it in 2012, when I got pregnant. And I think that was the year it was approved. We're trying to get pregnant again -- or, I mean, we will. And so I'm going to try to get on PrEP again.
Honestly, I'm having a really, really hard time making an appointment to talk to my doctor about it.
I'm just afraid that it's going to be a repeat, all over again. We almost thought about, "Well, let's just have unprotected sex, instead of dealing with that." Because he's undetectable.
We decided against it. But we'd like to try to have another child. I'm not comfortable asking my doctor yet about it. So we're holding off until I can get up the nerve.
So what's different is that I know it works. It worked for me. It's a lot more popular, and people are more open to it. But I have way more fear. I was a lot more fearless the first time. But now I have more fear, because I'm just so much more aware of the stigma and the prejudice that I experienced. I'm just afraid it would just really crush me, I think. I don't know that I would be able to keep fighting.
Heather Boerner: That's so interesting that you say that, Poppy, because you strike me as such a determined person. I can totally imagine it being devastating for you; I'm not doubting that. But somehow I just have a hard time believing that it would make you give up.
Poppy Morgan: I think that's my fear. I don't know that it would, but I just haven't broached the subject yet with my doctor, my GM [general medicine].
Heather Boerner: And is this the same doctor?
Poppy Morgan: No, it's a totally new doctor. When I took it last time, I was actually taking it through an AIDS clinic. I was seeing an HIV specialist. So I could do that again. But I have a primary care doctor. And I don't want to do that. I want to try to go through this primary care doctor.
So, Plan B, I think, would be to go back to the HIV clinic. But I just haven't worked up the nerve to do it.
Heather Boerner: What's ironic is that the health care center that Poppy goes to is the biggest prescriber of PrEP in the Bay Area now.
And they're actually looked at as a pioneer! It's just this weird thing. I have a feeling it will be very different this time. But I can completely understand your reticence to broach the topic, because I think it's fair to say that you were really mistreated the first time.
Poppy Morgan: Yeah. But HIV is treated in a silo and I'm not a person that has HIV. So I don't know how much knowledge, or how much perspective, my primary care doctor has on HIV, AIDS or PrEP. And so I feel like until they're comfortable, until they have a good base of knowledge, they're not going to prescribe it -- because they don't understand it. That's what I think happened with the first doctor.
When you look at it -- Truvada, that's the medication, my husband takes that for HIV treatment -- it's this really weird middle ground. I need HIV meds. I need access to PrEP, but I don't have HIV and the normal doctor doesn't know about it. So in the past, I had to get it at an HIV clinic, where they didn't even have on their lab forms to prescribe an HIV blood test because it was just assumed everybody in the clinic had it. So I was always like shuttling these two medical genres.
I still don't think they've worked it out. I still don't think it's that merged yet.
Mathew Rodriguez: Heather, can you talk about what you learned about the medical profession while you were doing this book? Because I think one of the great things about this book is that you do these side-by-side stories of, here are these couples who are trying to conceive, and then here are these researchers who really want to help these couples. And then you also have the medical establishment. That's not something that gets covered a lot, actually, in journalism -- is just what doctors think about things. It's really not.
Heather Boerner: Yeah. That's why I structured the stories the way I did -- because I was so struck by the fact that, on the one hand, you had Poppy and her husband's experience, and you had the other couple, Dan and Susan's, experience. They were knocking down doors trying to get information, desperate for this information. And you have a few providers who know what they're doing with this. And there's all this research happening, but it's not translating from clinical trials to the clinic. I was just so struck by that.
And I'm still struck by it. The CDC changed its policy, and it uses the term "condomless sex" now, instead of "unprotected sex," because there are ways to be protected that don't involve condoms. But they still don't acknowledge treatment-as-prevention as a real, legitimate option. And I think that that's a big reason.
I can't speak for Poppy, but I suspect that that's part of the reason that Poppy and Ted are scared to have unprotected sex -- even though her husband has an undetectable viral load, and has for years and years. We put the fear of God into people -- and, sometimes, literally.
Researching this book showed me what a disservice we've done to people by terrorizing them about HIV. And it's clear to me that that terror exists within the medical community.
The fact that Poppy's doctor -- I mean, the way Poppy describes it in the book, and as she described it just now, it's like a wall came down. As soon as she mentioned HIV -- as soon as she mentioned unprotected sex -- a wall came down. And there's not a good reason for that. That was purely based on emotion.
What I really learned -- because I wrote this book, and I've also written a couple of articles for newspapers on HIV prevention for women -- and, as Poppy said, there's such a silo. And I really believe that that silo exists, at least in part, because of bias in the medical community about HIV, terror of HIV.
Doctors haven't had to look at that. Non-HIV providers have not had to look at their assumptions, and their bias, around it. Every time I write an article some yahoo writes a comment about how unethical it is -- and just based on this bias stuff from, like, 1990. If we think that the general public hasn't picked up on this, well, general practitioners haven't picked up on it, either.
Yeah. So, I felt really confident about it. That was the thing that really struck me in writing this -- the answers existed, but no one would tell us.
I'll just say one more thing, and then I'll stop -- which is that when I spoke to Pietro Vernazza in Switzerland -- and I put this in the story -- he said that he believed this was punishment. We have a different attitude toward HIV than we have toward anything else; for example, compared to hep C. We don't say, "You're never allowed to have sex without a condom again," with anything else. It's just HIV. We are very weird about HIV. And it's really doing a disservice, not only to people with HIV, but to the people who love them.
Mathew Rodriguez: Heather, you touched on it a little bit, but can you just say what attracted you to want to tell this story in the first place?
Heather Boerner: I'm always interested in human stories more than science or policy, or any of that. And with this story there's kind of a more general reason that I was attracted to it and then there's a more personal reason. The more personal reason was that when I started working on this in earnest I was 38 years old, and I was trying to decide for myself whether I would have a child.
I really understand that urge to have a child, in the face of barriers. I think that that is an experience that almost every woman can understand.
I just felt like this was a story about something that's so universal. And most people don't think of HIV as a universal experience. We have all this stigma and preconceptions about what it means to have HIV. And I felt like this story broke down those barriers. This story is about people with HIV. It's about the science, it certainly is. And it's certainly about policy. It's about all those things.
But the heart of it is two people. I always joke around and say it's the proverbial man and woman who love each other very much and want to have a baby. That's what this story is. It is like such a basic urge. And it's such a beautiful urge, to create a family. I just felt like, by telling these couples' stories, it really illustrates how HIV has changed. It really illustrates this amazing moment that we are at in HIV prevention. And I think it illustrates really how far we have to go with translating the research to the clinic, and what benefits there are to family, and people with HIV, and HIV-affected couples if we can make that leap. If we can make the leap from the research to the clinic, couples like Poppy and Ted should not have to spend 14 years trying to get pregnant.
Both of these couples were just at this interesting moment -- now, just about every publication has written a story about PrEP. And that's really opened this conversation about what it means to live with HIV today -- and to avoid HIV today. But when they were doing this, there was not that understanding. And I was so compelled by their bravery, and by how thoughtful they were about it.
I think that the stereotype that people have -- and I'm sure Poppy can give examples from comments on her blog, but -- the stereotype is that this is careless, reckless behavior -- to have unprotected sex with someone with HIV.
But these are not reckless people and I think that's really important for people to see. These are thoughtful, loving people, and they just want to have a family.
Poppy Morgan: Yeah, I do get comments like that all the time. Really mean. Really, really mean. Even after I got pregnant, my parents felt that way. They were kind of angry with me, and they were really standoffish, and not excited about the pregnancy. So I provided some HIV test results to them. They wanted to make sure that I was negative before they could get excited.
So it's definitely still an uphill battle. And I think it will be, for my lifetime. I think for my daughter's lifetime it will be different. For my generation it's just really ingrained. It's going to be hard to change, I think, that prejudice and stereotype perspective.
Mathew Rodriguez: Both of what you just said reminds me of that phrase: The more things change, the more things stay the same. Because there's been so much progress, but there is still so much stigma and controversy when it comes to how people choose to have sex with their partners, what people are comfortable doing, and really what it takes to assure people that it's OK to be intimate with people living with HIV. It's just all very similar conversations.
Poppy Morgan: Yes.
Heather Boerner: Yeah. And I really think that the core of this is a fear of sex. At a really basic level. Poppy wrote this really articulately on her blog -- about this fear of sex and this fear that doctors, in particular, have of talking about sex, and about a woman's right to decide when and how she's going to have a baby with her partner.
Mathew Rodriguez: Poppy, what made you want to work with Heather? And were you scared of telling your story?
Poppy Morgan: I wasn't scared of telling my story, as long as I could remain anonymous -- which is not very brave on my part. I appreciated that she would allow me to remain anonymous.
I didn't know that you [Heather] were kind of going through your own questions around having a child. But I could feel that you connected with the story. And it's so funny. Because, like I said, when I read the book, I cry every time. There's a different part of it that makes me cry -- just to see it in writing, the story. Because I was living it, and it didn't seem like a story to me. I had no idea it was going to turn into such a work of art. But I just really trusted her. And she let me remain anonymous, first of all. And then she just listened. She let me talk, and talk, and talk. She was patient with me because I didn't always answer right away. She was great. But not pushy.
This transcript has been edited for clarity.
Mathew Rodriguez is the community editor for TheBody.com and TheBodyPRO.com.
Follow Mathew on Twitter: @mathewrodriguez.