March 29, 2023 – TheBodyPro.
by Myles Helfand
The following is a lightly edited transcript of Episode 15 of The Future of HIV Care, a monthly podcast from TheBodyPro about the issues and initiatives that are changing the way we approach HIV prevention, treatment, patient care, and services in the U.S. You can listen to this episode using the player below, by following The Future of HIV Care on Spotify, or by searching for it and subscribing within your podcast app of choice.
Myles Helfand: This month, we're going to explore a significant set of recent changes to U.S. HIV clinical guidelines. These changes are momentous in and of themselves, but they also reveal an important ongoing shift in how we fundamentally approach the clinician-patient relationship, especially when it comes to pregnant and infant-feeding people who are living with HIV.
Joining us for this conversation are two people who have been deeply involved in these guideline changes: Lealah Pollock, M.D., and Ciarra (Ci Ci) Covin. Dr. Pollock is an associate professor of Family Community Medicine at the University of California-San Francisco School of Medicine, and she's a member of the expert panel that recently updated the guidelines we'll be talking about today. Ci Ci Covin is an HIV advocate and mother of two who has been living with HIV since 2008, and she's a program manager at The Well Project, a nonprofit organization devoted to informing and supporting women who are living with, or vulnerable to, HIV. Both Ci Ci and The Well Project writ large have been a critical part of efforts to update and improve these guidelines.
Ci Ci, Lealah, thank you both very much for being here today.
Lealah Pollock, M.D.: Thank you so much for having us for this important conversation.
Updated U.S. Perinatal HIV Guidelines Put Breastfeeding/Chestfeeding on Equal Footing With Formula Feeding
Helfand: Let's start with the brass tacks. Perinatal HIV clinical guidelines: They're typically updated once or twice a year, and those updates tend to include mostly a lot of relatively minor—sometimes major—adjustments to antiretroviral recommendations and dosing and testing. The latest guideline changes, which were implemented at the end of January of this year, were much more significant, qualitatively and quantitatively.
Lealah, would you be able to provide us with a quick sense of the most important adjustments to the guidelines?
Pollock: I think that, really, the biggest update in this year's guidelines is the focus on individual choice when it comes to infant feeding for women and other birthing people living with HIV.
The guidelines, for many years—for decades, really—said people living with HIV should not breastfeed their babies; you should give your baby formula or, if you can find it, banked human-donor milk.
Now, in recognition of the very low risk of HIV transmission via breastfeeding when the person living with HIV is consistently taking their antiretroviral medications and has a suppressed viral load—given the known benefits of breastfeeding and given the advocacy from people living with HIV, who have been saying for many years, "We want to have choice over how we raise our babies, how we use our bodies, and the choice to decide how I want to weigh those risks and benefits of breast- or chestfeeding for my baby"—this has been a huge watershed shift in the guidelines to say: If you are taking your antiretroviral medication, if you are undetectable, your health care provider should have a conversation with you about what we know—and what we don't know—about the risks and benefits of feeding your baby from your body. And you should be allowed to make that choice for yourself.
Helfand: Could we dig in for a moment to just how big a change this is?
Pollock: From the initiation of the guidelines until, I think it was 2015, the guidelines only contained one short sentence about infant feeding. And that sentence said [that] people with HIV shouldn't, or [that] it is recommended that people with HIV not breastfeed their babies. That was also what the CDC [Centers for Disease Control and Prevention] said, and [it] was what, if you did an internet search for HIV and breastfeeding, was the top headline that would come up.
So, it was really not even a conversation; just a very stark, black-and-white, "This is our recommendation." And even that language—"recommendation"—I think is softer than how it was interpreted. It was interpreted as a very clear restriction, a very clear mandate against breastfeeding—by clinicians, by public health personnel, [and] in some cases by people living with HIV.
I think people living with HIV, like Ci Ci, were the ones who raised questions about why: Why is this restriction there? Especially when the WHO [World Health Organization] guidelines were actually very different. In low- and middle-income countries, the WHO has, for many years, said: We recommend exclusive breastfeeding for babies born to women living with HIV.
A few years ago, the [U.S.] guidelines expanded a little bit to say: We recognize that there may be reasons why someone living with HIV may want to breastfeed their baby. We recommend exploring those reasons.
Then in 2018, there was a new section of the guidelines that really talked more about infant feeding for people living with HIV; talked more about: Here are reasons why somebody may want to breastfeed; and I think had the language of: If, despite counseling, someone with HIV still chooses to breastfeed, you should support them. And here's how you can support them.
And so, while the language has been moving in this direction of increased support for people who want to breastfeed, still the topline recommendation was: Do not breastfeed.
This year, to really have language that supports choice; that supports saying: It's not just if they choose to breastfeed despite your counseling. It's: If they—given the information—choose to breastfeed, support them; if they—given the information—choose to formula feed, support them. Those two options are really given equal weight and equal legitimacy in the guidelines.
And I think—we'll hopefully talk about this a little bit more, but—it's also a huge shift that this iteration of the guidelines and this update focuses on equity and autonomy. Whereas I think for so many years—the guidelines panel is tasked with interpreting scientific evidence into clinical guidelines, and I think for a long time that was sort of translated as this objective stance of: What does the evidence say? What is the most objective recommendation?
And so, to really take a shift to think about: What is an equitable recommendation? What takes into account the other considerations in someone's life beyond just a very, very narrow—but important—focus on reducing or eliminating the risk of HIV transmission? That health, and wellbeing, and family wellness, incorporates much more than that; and that equity—that thinking about what are equitable health and birth outcomes—also incorporates much more than that, I think is another really major change in the guidelines this year.
And again, just to give so much credit to the community advocates like Ci Ci who have pushed, and advocated, and spoken out for this, and really made this change possible.
Helfand: It's remarkable, the extent to which these changes aren't just about the guts of what it is that you're trying to achieve to result in better health and life outcomes for birth parents and their children—or even for caregivers of newborn children who are living with HIV—but also the efforts that these changes appear to have made to try to get the words right. Words really matter.
To one of the points that you made a few minutes ago, Lealah: The 2018 guidelines did allow for a little bit of conversation, with those caveats that you mentioned. But the topline was still, in boldface and underlined, "breastfeeding is not recommended." Which is going to carry so much more weight than the more nuanced, "OK, but," conversation that follows it.
Why These Breastfeeding/Chestfeeding Guidelines Are So Meaningful for Patients
Helfand: The point that you just noted about the involvement of advocates—Ci Ci, you are one of them. You, as a person who has been living with HIV for 15 years, who has had two children at very different moments in the epidemic and in your own journey with HIV, and who has been involved in the efforts for years to get these guidelines changed: What is the significance of these changes for you? How does this impact you? And how does this also impact the people that you advocate on behalf of?
Ciarra Covin: Oh, my goodness; how doesn't it? How are we not impacted by this? Whoa.
As you just said: As a woman living with HIV for the past 15 years—my first child being born in 2010—breastfeeding never entered that conversation. I never—breastfeeding was one of those things I would no longer be able to do because of my HIV status. I knew that. The doctors knew that. They all knew: Don't even talk to me about it. It was just this assumption, and this unsaid thing. Like, "OK, you're positive. You had the baby. You could carry the baby. The baby's negative. Be happy with that."
And I was happy with that. But I also wanted the other things, you know? I wanted my breasts to not be swollen in the shower after giving birth because I couldn't feed it to my baby. I wanted to not be experiencing postpartum depression because the baby no longer needed me; because of my HIV status. I wanted more.
So these guidelines—yes, words are very important; you've just said that, Myles. And now the words are written down for other folks to read. They've been written intentionally by providers with the input of community—me and so many others. You have Heather O'Connor and Antoinette Jones that have gotten out there, and lived their truths, and spoken out loud and boldly behind those truths. To see all of this come together, it's inspiring. Like, what else can we change? What else can we get somebody to listen to?
Because women and their needs matter. People living with HIV, our needs matter. And just to be able to see that come to fruition is, like, wow! Good job, y'all.
Helfand: It's taking these guidelines beyond the data and [acknowledging] that people who have children—whether they're living with HIV or not—are autonomous human beings with their own capacity for choice. And that it's not the provider's job to make the decision for them.
The Many Harms of Calling Child Protective Services (CPS) on Breastfeeding/Chestfeeding People Who Are Living With HIV
Helfand: There is a bullet point—it's embedded within these new guidelines—that could easily be missed, but that I want to be sure that we draw a line under, because I know the two of you want to be sure to draw a line under it. Which is: Hey, maybe stop calling Child Protective Services if the parent says that they want to breast- or chestfeed, if they announce that intent. Is this act—or the threat of the act, of calling CPS—is this something that you're aware of that has happened to a significant amount within the HIV community in the United States?
Covin: Of course. We get reached out to by people all the time that are really backed against the wall because that is the threat that is being made. Back in 2021, at the beginning of the year when I got pregnant [for the second time], I had been with this provider for 10 years. And I'd been doing work, learning about breastfeeding and HIV, and seeing that it was happening across the world and sometimes even within this country. I was six weeks pregnant. And I brought up breastfeeding. And CPS was brought into the conversation there.
Six weeks pregnant! You don't even know if this baby is going to stick. You just got pregnant. And you're already telling me that Child Protective Services could be called if I chose to breastfeed this baby. Even though I have a 10-year-old at home that is doing fine and is flourishing—so, clearly, I know what I'm doing when it comes to parenting. But now my HIV status—I mean, do any of us know what we're doing, really, when it comes to parenting? But this child is still alive. And he uses his manners. And, we're doing great.
But because of my HIV status, now you all are questioning my ability to parent? No. Now I'm taking it personally. Now: No. I absolutely should have rights over my body.
Providers, when they find out your desire to want to breastfeed, I've heard from the community—because Heather O'Connor, she does this a lot; she'll call and be like, "Yeah, I'm the cousin of Such-and-Such. Can we get her to a provider that will support this?" They—the caseworkers, nurses—are being very rude to her when she's trying to advocate on the behalf of other parents.
Or people are having to sneak [their breastfeeding] until they get out of the hospital, because the hospital would be the one to initiate that call [to CPS]—even though pediatrics is already OK with it. We've got people being followed home from the hospital: "Now I have an inkling that you wanted to feed. And I think that you're going to wait until you get home. So now I'm going to just put in the computer that a nurse needs to come and see you every couple weeks," or whatever. And: "Hey, nurse. If you find out that this person is feeding, let me know."
It's been down to that; that micromanaged and focus from—you know, they're getting too much into it. And these parents are scared. This is at the most vulnerable time of your life. You just came home with a baby. And because I'm wanting to feed my baby from my body, I'm having to worry about how much vegetables, broccoli, and sweet peas I have in my freezer, just in case somebody pops up one day.
Helfand: Lealah, what is the clinical mindset that causes that to happen?
Pollock: It's a very good question. I—and I don't know that it's the same for every provider or everyone involved—I think that it comes from a place of fear. I think that it comes from a place of HIV stigma, a feeling like the worst thing in the world is having a baby born with HIV.
I am a white doctor who does not have HIV. Who knows more about what it's like to be a person living with HIV and the impact of that than the person living with HIV who is making this decision about themselves and their family?
And to impose this assumption [on the part of the health care provider] of: You don't care about your baby, you want to harm your baby. On that decision that's made with a lot of thoughtfulness [by the parent]; a lot of thought about: What are the benefits of breastfeeding? What is this going to give my baby? How well am I doing at taking my medications? I know I never miss a dose. I know my viral load has been undetectable for years. I know I have control of this virus.
To overlay that with an assumption [by the provider] that you don't know what you're doing and you're wanting to harm your baby is—I think [it] comes from a place of wanting to control. I think it's often done from hoping to coerce the person into making a different decision. And also often a place of racism.
We know that in general—outside of the context of HIV—the people who are most impacted by the family policing, the family welfare agencies, are Black and indigenous women, families, and children. And we also know that—again, because of the outcome of structural racism in our country—those are also the populations that are most impacted by HIV. And so I think that, also, racism—structural and individual racism—come together to further disempower people living with HIV, and particularly Black and African American women living with HIV, from being able to make their own health care decisions.
Updated Guidelines Aren't Just About Clinical Recommendations; They're Also About How to Have Better Conversations
Helfand: It struck me that you started your answer by talking about how the clinician might be coming from a place of fear, particularly given the reality of the doctor-patient relationship, almost by definition. What came into my head was actually a conversation that we had on this podcast—with one of your colleagues, Lealah: Deb Cohan at UCSF—last year.
The context for that was talking about medical racism and what we can do about it. One of the things that she had noted was that, for her, before she goes into that room to meet with a patient, she reminds herself of her privilege. She reminds herself that she is a—number one, a white, straight, cisgender person, but also a doctor who is in a position of power, and who has been trained to be the expert on everything and to know what's best for everyone, but who needs to acknowledge the expertise—the life expertise—of the patient that they're about to go see, and to be humble in the face of that. And that it's especially true when you have racial, or gender, or sex dynamics at play. Which is very often the case in this scenario, because the vast majority of health care providers are white, and the majority of patients are not.
Stop me if I'm wrong, but this feels like the guidelines are meant to not just change the on-the-page definition of what to do and how to approach decisions, but also how to approach those conversations.
Covin: Yes. Because those conversations definitely aren't easy. And I can't speak for the provider, but I can tell you from a patient's side, the patient's—my—experience, that I'm scared. I'm scared to come into the office and tell you too much. Because if I tell you too much, then you're going to be looking at me a certain type of way, or you'll start probing more.
And if I say the wrong thing, then it's going to always—that's the fear, is: Are the folks showing up? Are the folks coming to my house? Are you going to initiate something? Are you going to tell somebody about what I just said because you're scared? And that fear from the providers is felt by the patient in there.
Because then—now you told me I can't breastfeed, but I really want to. And I found somebody that would support it. But now if a transmission was to occur, I would have taken all of that [burden] on to myself, because I went against what you told me to do in the first place. That was such a heavy feeling.
Helfand: It's also probably really worth noting at this particular point that HIV is still criminalized in most of this country, and that exposure or transmission, between two people, of HIV can potentially send a person to jail in a lot of states in this country.
Pollock: Deb Cohan is a personal hero and guide to me in my journey as an HIV provider. I've learned a lot from her, this point of recognizing the power dynamics in the room. And I hope that one outcome of the guidelines will be some attention to a shift in this power dynamic.
I think there's been a lot of attention and anxiety around some of the details in the guidelines of, you know, what prophylaxis do we give to a breast- or chest-fed newborn? And I think one thing that I am trying to bring attention back to is that, really, we also need a lot of attention and guidance to helping health care providers have just the initial conversation in a way that is patient-centered, equitable, and really does allow for choice—and is non-coercive.
I had a preceptor when I was in residency who would say, "The point of your first visit with a patient is a second visit with a patient." I think about that all the time, in that I think the point of every conversation and every visit is to try to earn my way into somebody's trust and life. I think that we as health care providers should not assume that somebody should trust us. Because why should they trust us? Especially people with HIV, and especially people of color, have had very negative, harmful interactions with health care.
And so, as a baseline, I think our role as health care providers is to do no harm, but in a way that I think is not often the interpretation of that, which is to create a health care system that is, as a very baseline, not harmful to patients.
Covin's Challenging Journey Through Pregnancy Care as a Person Living With HIV
Helfand: Ci Ci, you've already given us some of the details of your experiences having a child, both in 2010 and then, with your daughter, more recently. If you're comfortable, would you be willing to go into more detail about what each of those experiences were like, and who it was within the health care environment that you interacted with? What you were told or not told?
Covin: Yes. I was diagnosed in 2008—so, I was 20. And I got pregnant with my son in 2010, two years into my diagnosis.
The first question I asked when I got diagnosed was: Could I have children? And the provider seemed very skeptical. I got a kind of a look that didn't look promising. And: OK; that's at 20, I'm questioning.
So, I get pregnant in 2010, and I—thank God—had a provider who was abreast on the knowledge. He knew that I could have a baby, and he knew that it was possible that I could not transmit HIV to this baby even after having a vaginal delivery. That was awesome. This was also very cutting edge down in rural [U.S.] South, where navigating medical services aren't really the easiest sometimes. So, I was grateful for that.
But like I said, I experienced a lot of postpartum depression behind that. Baby was born early, so baby ended up in NICU, and I ended up in NICU feeding the baby formula. So that's how that went.
I cried, because anybody could feed a baby formula. Like: Baby doesn't need me; y'all take him. But our relationship is so great now. That was hard. That was mentally challenging.
So, fast-forward to 2021, when I did get pregnant with my daughter. I had been doing this advocacy work; I got to present with The Well Project, where I'm employed now as program manager. But at the time, I presented at the U.S. Conference on HIV and AIDS on a panel, alongside another [person] who had breastfed, and our executive director, and another provider. This was the first time that I ever heard anyone talk about the benefits of breastfeeding for people, despite their HIV status. And it's like: What? Whoa! There are benefits? Like, it could lessen my chance of cancer. Black kids and Black parents are already high in infant and parent mortality, and breastfeeding could help with that. And it's cheaper. And we don't always actually have access to clean water here in the United States.
That's when the wheels started turning in my head: Maybe, one day, it will be possible for parents living with HIV to breastfeed.
Now, my son is 9 [at the time]. [I thought,] Who's going to have any more kids after that? But I did it! I did it. And it was a surprise. So I'm like: Oh, shoot. Now I have to figure out how I'm going to feed this baby. Crap. I've been talking all of this stuff; now I really have to be the one to make a decision on how I'm going to feed my baby.
It was discouraging: I go to a provider who I trust and who I've had this relationship with. She says that "There will be no provider in America who will work with you if this is what you wanted to do."
[She said:] "What about a milk bank? You know, you getting someone else's milk and feeding it to your baby." I don't want to feed my baby nobody else's milk! We could just go the formula route. And where am I even going to get this milk from? Who pays for it? I can't afford that. So that seemed like an option that wasn't one that I could attain.
And then the last thing was: "If you do it then you'll need to be quiet about it, because our pediatrician that we work with is going to call Child Protective Services on parents that breastfeed their children." Like: whoa, whoa, whoa, whoa, whoa. No. This is not what I'm looking for.
It was my proximity to resources and that sense of privilege that I had in that moment [that helped me]. Because I could call up Heather, who had been an advocate for breastfeeding and HIV. I found her through one of The Well Project's blogs. I said, "Heather"–who is this white woman living in Virginia, OK? That's very important. I said, "Heather, how did you evade the conversation about Child Protective Services?"
She said, "Honestly, that wasn't my experience. My doctor came in and asked me, 'How do you plan on feeding your child?'"
I said, "Whoa! That's such a different question. That is so different. How do I get my hands on that?"
So that's when Heather called–white girl Heather calls–up to a doctor here in Philadelphia. She called and said, "My cousin"—that's why it was important—"my cousin, she wants to breastfeed. She's living with HIV. Will you support this?" So, cool: Found an ID doctor that would support my decision. Then I got linked with an OB-GYN who would support my decision. Yes! Getting in there. Then I got linked with a pediatrician who would support it.
But these were all changes to my health care, all at the beginning of my pregnancy. Changed medication because no one had questioned whether or not I wanted to have more children; they just assumed. So the medication I ended up on was one that wasn't recommended for pregnancy. So, bam! Medication changes. Provider changes. My health care–still, to this day–is not where it was pre-pregnancy. Pre-pregnancy, everything was in one building: labs; dental; case management; all of that. I had my HIV figured out.
Now? Labs are over there. Then doctor's over there. Doctor switches up; I don't have any relationship. And this is all due to my decision to want to breastfeed while living with HIV.
But when that [first] doctor told me that no provider would support me in America, I knew that they weren't telling the truth. I knew that a girl down in Florida, she breastfed her child a couple years ago. But that was something that you had to be quiet about, because then you're shaking [things] up too much. So, no. The experiences have not been the best. But I've learned a lot. And I'm so grateful that I can continue to help inspire providers to just listen a little bit more, and help other parents advocate for themselves in these spaces. Continue reading on TheBodyPro...
