Taken from the May/June 2014 issue of the Women's Health Activist Newsletter.
Clinical trials have shown that PrEP reduces the risk of HIV infection by 75 percent in heterosexual couples where one member of the couple is HIV positive and the other is not.
The U.S. Women and PrEP Working Group (a group of leading women’s health advocates from across the country) has been holding a series of webinars about the possibilities and challenges associated with sero-discordant couples’ use of PrEP to help them safely achieve pregnancy. This article is based on part of a webinar held by the U.S. Women and PrEP Working Group to explore the potential of PrEP to improve women’s health. It is a conversation between Shannon Weber, MSW, (Director, Special Projects, National HIV/AIDS Clinicians' Consultation Center, Bay Area Perinatal AIDS Center Coordinator), and Poppy, a mom sharing her story about using PrEP.
Shannon: We are going to have a treat and the distinct pleasure of having a conversation with Poppy, who will share her story about having a baby with her HIV-positive husband. I would like to briefly say that Poppy is a shining light — she has advocated well and hard for herself. Beyond that, Poppy has done so much to help other couples expand the options available to them. She has talked with other HIV-negative women with an HIV-positive partner who want to conceive. She has started a blog, has written letters, and published her story on MyPREPExperience — it really is a pleasure for me to know her. With that, I’ll start by asking Poppy to introduce herself and her partner.
Poppy: I met my husband in 1999 and the moment I met him, I knew he was going to be my husband; we got married in 2002. Before we got married, I knew about his HIV status and my decision to marry him was highly controversial among my family and friends — the idea that there is a HIV-related stigma is very real. I learned from that experience that you have to just give people room to react. That people can be uneducated about an issue, and they react not out of bitterness but out of not knowing the whole story or being able to put themselves in your situation. I am grateful for that lesson, which has helped me to kind of step back and just let people come to terms with their own feelings about the issue and not to personalize it for myself.
Shannon: When did you guys decide to have a baby and what was that process like for you individually, or as a couple?
Poppy: It was a very long process. Before we got married, I had an appointment with my husband’s doctor and talked to her about whether I could make sure to remain HIV-negative and whether we could ever have children. This was in 2000, and she told me that sperm washing was an option for us, as well as in vitrofertilization (IVF), using a sperm donor, or adopting. We looked into all of those options, but sperm washing and IVF were both very cost-prohibitive. It was very frustrating because I felt like, if I had money, these options would be open to me; but, because I didn’t, I had to potentially risk getting HIV. We looked at adoption, but it was just as cost-prohibitive. Then, we finally settled on getting a sperm donor, and got furthest down that track. We had gotten to the point of picking a donor when I heard about PrEP, and I just decided we should give this one last try. That was in 2010, and we were able to get pregnant using PrEP a few years after that.
Shannon: Tell me a little bit about what it was like for you to try and find a provider who was willing to prescribe PrEP for you.
Poppy: That was difficult, and probably the most frustrating part of this whole journey. You feel isolated enough, and you have friends and family who are not supportive or who feel you’re making an immoral decision. I did talk to my primary care doctor about this; I told her “You know I have an HIV-positive husband” and she said, “Would you like me to prescribe Xanax, because I’m sure that must be so stressful.” I felt like it was more ignorance on her behalf, and I was frustrated that she projected her own feelings about what it must be like to be in my situation. I told her, “I am actually fine with it. We are very safe and I’m not stressed out about it,” Later, when I asked her to prescribe Truvada for me, she told me that she could not ethically do that and she wasn’t sure she could treat me as a patient if I was going to take those risks.
I ended up finding another doctor who was a lot more compassionate and educated and who was very helpful. We were scared enough and had little enough support as it was — so I felt it was important to have a doctor who was a professional supporting us and educating us. I was on Truvada for a year and a half, off and on. We didn’t try to conceive every month. My husband was getting monthly blood work and if his viral load was ever detectable we did not have unprotected sex that month. But, about 18 months after starting with Truvada, we got pregnant.
Shannon: And what was your experience like using PrEP — both physically, in terms of working that into your routine, and also in terms of sharing that with friends or family?
Poppy: You know, I had no side effects at all. I just took a pill every day. It was very uneventful. I didn’t feel anything. As far as friends and family, we didn’t tell them. We actually only told one friend we were trying to get pregnant this way. We didn’t tell anyone else because we knew they would say, “You’re crazy. How can you do that? Why would you purposely have unprotected sex?” Then, when we did get pregnant and wanted to announce the pregnancy, it was very tricky to do that. We decided in advance to just very generally say, “We worked with a very close team of doctors who monitored our process.”
Then, when it was time to actually announce the pregnancy, we decided to come forward and tell the truth. We felt that it was such a miracle that we were even pregnant, and that this child and this process deserved our honesty. So, we told everybody, “I took Truvada. We had been trying for a year and a half. It finally worked. I am still HIV-negative.” My parents had a very difficult time coming to terms with that. For the first eight months of my pregnancy, they were very standoffish and had a hard time coming around to the idea. Once my child was born, you know, of course they came around and everything was forgotten. They are very grateful that we pursued getting pregnant. But, again, just more stigma, more ignorance, and more lack of education. We felt strongly, however, because we were so well-supported by our medical staff around us, that we were fine. We were doing the right thing. This option worked for us — we understand that this option will not work for everybody, but it worked for us after a 12-year journey of figuring out how we could get pregnant in our situation. We were successful, which is all we wanted in the first place.
Shannon: What advice and words of wisdom do you have for clinicians and for an HIV-negative woman who wants to get pregnant with an HIV-positive man?
Poppy: My advice for a doctor or medical worker is to listen to your patients — really listen to what risks they are willing to take and try to keep your own opinions, or your own feelings, or your own thoughts about the situation out of their decision. For me, I felt like this was the risk I wanted to take. I understood the risks; I’ve been living with an HIV-positive partner. I just needed someone to help me reduce the risks. The other option was for us to have unprotected sex in this isolated place without medical or social support. So, helping us to get pregnant with the least amount of risk was the best support we could have. To me, it’s just really important that clinicians listen to the risks that your patient is willing to take and try to be as supportive as possible to mitigate those risks.
For other HIV-negative women, I would say to make sure you have explored all of the options and discussed with your partner what decision you want to make together about how to proceed. As I said, this option isn’t for everybody, but it was the option for us. If you are under a doctor’s care and you’re both healthy, this could be an option to consider because it was successful for us. But, of course, do it under a doctor’s care, stay mindful of the risks, and don’t engage in reckless behavior — continue to have timed, unprotected sex when you are ovulating, and at all other times be safe and use a condom.
Shannon: Is there anything else that you want to share with this group?
Poppy: It’s just been a miracle; I’m still HIV-negative, my husband is still HIV-positive, and we have a beautiful baby daughter. Every time we look at her, I’m just so amazed and so thankful we were able to be tenacious in this journey and to not give up. It’s just wonderful to look at her face and see characteristics of both my husband and myself. There was a time when I thought I was going to have to give up seeing his features in my child. So, when I look at her and she has his eyes, or his fingers, or his toes, that’s just a miracle to me because we thought that wasn’t going to be possible. For everybody out there, this is a decision that is very personal to your patients and friends and family — they don’t take it lightly. Anything we can do to give somebody the opportunity to look at their child and see this is a child we both created…it’s really amazing and something that I hope everybody is supportive of doing and striving to do.
Shannon: Thank you so much. Thank you for joining us today. Thank you for sharing your story. It is really a pleasure to still be in touch with you and have you share this experience for other people.
Based on a transcript of the webinar interview: “PrEP-ception: Sero-discordant couples using PrEP to reduce HIV transmission risk during pregnancy,” October 28, 2013, by Julia Newman, NWHN intern. The recording of the complete webinar and accompanying slides is available athttp://www.avac.org/ht/display/EventDetails/i/52104/TPL/MatDetails/pid/351. For more information, visit www.avac.org and www.prepwatch.org. See the May/June 2013 issue of the WHA for more information about PrEP.