Expert: Long-Awaited CDC HIV Report on Conception Options for Serodiscordant Couples Is Disappointing and Confusing
We're in the middle of a revolution in our efforts to fight HIV. However, you wouldn't know it from a new Centers for Disease Control and Prevention (CDC) report that advises providers about conception when one partner is living with HIV.
Two research-backed methods -- HIV treatment as prevention (TasP) and pre-exposure prophylaxis (PrEP) -- are strikingly effective in preventing HIV acquisition. Each on its own means virtually zero risk of HIV transmission.
Indeed, it's been said that the biggest hurdles to wiping out HIV incidence at this point are not scientific, but instead are rooted in a lack of information, deep stigma, ongoing criminalization, and barriers to treatment and care. People with HIV are speaking up about the power of scientific information to combat shame, stigma and isolation, and providers are learning the importance of sharing information about these methods with their patients.
In the midst of this, the CDC just released a report, "Strategies for Preventing HIV Infection Among HIV-Uninfected Women Attempting Conception With HIV-Infected Men -- United States," that is stunningly out of step with these developments.
Noting, "There is considerable new information about prevention of HIV transmission in HIV-discordant couples since 1990 when CDC recommended against insemination with semen from HIV-infected men," the report seeks to provide guidance for "HIV-discordant couples who desire to conceive."
This document is not niche or esoteric. People with HIV are often just as interested in having kids as those who happen not to have HIV, so it's vital to have clear information for individuals and providers on the happy news that it's totally possible to do so without risking transmission.
I've been working on issues around HIV, conception and pregnancy since 1993 -- when we first learned that the early HIV treatment zidovudine (AZT, Retrovir) could drastically reduce rates of HIV from birth parents to infants, so I was eager to read the CDC's new guidance when an embargoed synopsis was distributed to the press earlier this week.
I was shocked by what I saw.
I had to read and re-read this passage from the embargoed synopsis, hoping I would somehow realize I had misread it (emphasis added):
Based on available science, for discordant couples in which the male partner is HIV-infected and the female partner is uninfected, insemination with HIV-uninfected donor sperm remains an option for achieving conception. However, for couples who want to conceive a biologic child together, several risk-reduction strategies are available. One strategy is viral suppression with HIV medications for the male partner (highly-active antiretroviral therapy, or HAART), with condomless sex around the time of ovulation, while the female partner takes daily oral HIV medication to prevent infection (pre-exposure prophylaxis, or PrEP). Alternatively, combining HAART and PrEP use among the male and female partner, respectively, with "sperm washing" and subsequent intrauterine insemination or in vitro fertilization can further reduce risk.
With a heavy heart, I reached out to Shannon Weber, M.S.W., the indefatigable leader of HIVE at the University of California, San Francisco, where multidisciplinary teams support people with HIV -- and people with partners who have HIV -- in their reproductive and sexual health needs.
Via email, she affirmed that this report flies in the face of the powerful and conclusive evidence that treatment, PrEP and assisted reproductive strategies are each safe and effective approaches, and that the report misses opportunities to help providers fully support their patients' reproductive choices.
JD Davids: Is this level of multiple precautions warranted, giving the expected efficacy of each individual strategy?
Shannon Weber, M.S.W.: The fact is: Treatment as prevention alone is a highly effective form of safer conception. Daily dosing of PrEP alone is a highly effective form of safer conception. Intrauterine insemination (IUI) or in-vitro fertilization (IVF) alone is a highly effective form of safer conception.
Couples will choose different options based on their risk perception, individual fertility factors and access to care, including cost.
The guidance is missing a full discussion and citation of the valuable data from the Partners and HPTN 052 studies: There is scientific consensus that a person with an undetectable viral load does not transmit HIV.
Some HIV-affected couples may require assisted reproductive technologies based on sub-fertility (not HIV status alone) or choose assisted reproductive technologies based on their own risk perceptions or family make-up (same-sex couples, surrogacy or co-parenting couples) -- making intrauterine insemination and in-vitro fertilization important adjunct safer conception strategies.
I wish to reference a quote from Pietro L. Vernazza, M.D., and Edwin J. Bernard in their 2016 essay, "HIV is Not Transmitted Under Fully Suppressive Therapy: The Swiss Statement -- Eight Years Later." They write, "Is it ethical to withhold information from patients because of (unwarranted) fears that the epidemic might worsen as a result of informing them?"
JD: In what ways do these recommendations reflect or not reflect the practices of your providers/clinic network/patients?
SW: In addition to not always being an individual or couple's method of choice, assisted reproductive technologies are unfortunately not widely offered -- and quite expensive when they are. These two major barriers make assisted reproductive technologies essentially unavailable for many, if not most, HIV-affected couples.
HIVE began offering PrEP to women in and around pregnancy in 2010. Treatment as prevention/TasP is also a favored safer conception method among HIVE patients.
The HIVE blog highlights the stories of U.S. men and women affected by HIV telling their safer conception stories. Among the PrEP and TasP love stories, you'll also find stories about using donor sperm and co-parenting arrangements.
I'm seeing an empowering movement emerging from providers in the safer conception field -- utilizing a shared decision-making model to allow individuals or couples to select a method that is right for them for that time in life.
JD: Does this report advance existing recommendations?
SW: I'm thrilled to see the CDC update their 1990 policy affecting sperm washing and IUI.
This is huge for folks who are HIV affected and experience fertility issues, including same-sex couples, single parents by choice/surrogacy, co-parenting couples or people of trans experience. This shift will make the fertility treatments necessary to conceive more affordable.
The lack of information and clear guidance on TasP and PrEP as stand-alone options -- whether for HIV-positive female/HIV-negative male or HIV-positive male/HIV-negative female couples -- is disappointing.
The addition of PrEP to assisted reproductive technologies is confusing.
JD: What should providers know about the conception needs, desires and challenges of serodiscordant couples?
- HIV-affected couples desire pregnancy at about the same rate as the general population. If you are an HIV provider, ask ALL your patients, regardless of gender identity and sexual orientation, "Do you think about having a baby in the next year?"
- Fifty percent of the U.S. general population's pregnancies are unplanned; the rate is higher among people affected by HIV. Look at a safer conception conversation as a true gift: the chance to support someone planning their pregnancy while reducing HIV transmission risk.
- You don't have to know all the answers; just ask the question and open the door. You can make referrals to reproductive health providers or online resources such as PleasePrEPMe and HIVE for folks who desire pregnancy to get the support they need to fulfill their family-building dreams.
- With the advances in biomedical prevention (TasP and PrEP), the safer conception conversation has really shifted from one of permission-giving to possibility and hope.
This interview has been lightly edited for clarity. The author wishes to dedicate it to the memory of Amy Kutzbach.
JD Davids is the managing editor for TheBody.com and TheBodyPRO.com.