+TALK: HEATHER ELLIS

Heather Ellis is making huge strides for breastfeeding & HIV

Watch this all new episode of +Talk hosted by Karl Schmid right now!

Transcript below.

HEATHER
So I couldn’t breastfeed, like it was not on the table. And I was even told, like, if you breastfeed, you will have your children taken from you.

KARL
Welcome to “Plus Talk” on Plus Life. We’re all about turning positive into a plus. And my guest today, Heather Ellis, has certainly done that over the years. Today, we’re talking breasts, actually breastfeeding. Heather, good to see you.

HEATHER
Hi, hi Karl.

KARL
Heather has written a couple of books and I just do want to plug “Timeless on the Silk Road”. It is all about your journey, traveling from the UK, trying to get to Australia, living with HIV and AIDS by the time you got to it. So, bravo, I love that book. I told you that at the time. It was such an impressive read.

HEATHER
Oh, thank you. Thank you so much. Yeah, that was before the discovery of the antiretrovirals. So it was a very, very scary time for me.

KARL
Not just as a scary time as someone living with HIV but I imagine also being a single woman on a motorbike basically riding across the world.

HEATHER
The people through Central Asia are very, very hospitable. I didn’t have any problems at all. It was just this like, you know, doom and gloom sitting on my shoulder constantly, you know, you are going to die. Fortunately, the beautiful scenery I was seeing, the kindness of the people dull that after a while. So, I kind of wasn’t so kind of in my head and so loud and I was able to just enjoy the journey. But as I slowly traveled on, by the time I got to Hanoi in Vietnam, I was very, very ill and managed to get home to Australia and when I got there got to hospital and they said, “Oh, by the way, they’ve discovered these “fantastic medicines that, you know you’ll live “for a long, happy, healthy life.”

KARL
Obviously you are well and you are healthy now. You’re the mother to three boys. And as I said in the intro there, you’ve been the lead writer on breastfeeding for women living with HIV. So that’s kind of what I wanted to talk about on “Plus Talk” today is, and I should preface, neither you or I, we’re not scientists, we’re not doctors, but we are both have a lived in experience of living with HIV, specifically you as a woman, as a mother. And I know you just spoke at the World AIDS Conference in Montreal, tell us where the world is kind of at with the thinking behind women living with HIV who want to breastfeed because in this country in the US, the CDC is still saying, “Don’t do it.”

HEATHER
In Australia, we have changed the guidelines. So previously the guidelines were, do not breastfeed. It’s not, you know, formula feed only. Now, women living with HIV can be supported to breastfeed. And that is the case in the UK, in several European countries, and in Canada. But, and that comes with a big but, a lot of the doctors, the clinicians still aren’t on board. So even though the risk is 0.3%, they’re sort of saying, well, that’s in Africa. It’s a different situation here. In the high income countries, women can get formula while in African countries, there might be times where they can’t get formula or they can’t get clean water. So therefore the best thing for the baby is to breastfeed. And this is when the mother is on taking antiretrovirals and has an undetectable viral load. So what they’ve discovered now with these studies that they’ve done has been that women have been on treatment, have a sustained undetectable viral load and there’s been many studies where there’s been no transmissions at all. Those few studies where there has been transmissions, there’s other factors that are involved like possibly the mother was diagnosed with HIV when she was pregnant so she didn’t have a long term sustained viral load. Maybe she wasn’t constantly adherent to the medications. Maybe the medications weren’t always being absorbed. As we know, in some of these African countries, people can get stomach upset so they’ve got diarrhea and then you don’t have the absorption. So there’s other factors involved but what they’ve found now and there’s more and more studies coming on board where there’s been no transmission and these are time and time again. And this is where we’re at now. We need to gather together and keep collecting it like we did with U=U. You know, we did that for 20 years. Get that data together where there’s, you know, time and time again, there’s no transmission. And then we’ll have the healthcare providers, the clinicians, doctors, and so on. We’ll have them all on board. They will be confident and they will share that confidence with the woman living with HIV when they have that discussion about breastfeeding.

KARL
Very reminiscent of those early days of the U=U messaging, especially trying and look, we know, certainly here in the United States, that there is still trouble getting people in the medical in profession and doctors to sign onto U=U even though the science is clear but it sounds like what you’re saying is that based on the science, it certainly is pointing in the direction that if one, another example of if you are undetectable, then really it’s next to no likelihood of transmission through breastfeeding.

HEATHER
Yeah, that’s right. There’s other factors that are involved like with, because breast milk is immune boosting liquid that’s being fed to the baby, that’s what it is. So you got like a higher level of virus in the breast milk than you have in any, in say in your blood. But that is when you’re not on treatment. You know, that’s the case when you’re not on treatment. When you’re undetectable, again, there’s very like next to no virus in that breast milk and it’s only, they’re sort of saying it comes into the breast milk when there’s factors like you have say, low absorption of your antiretroviral. So you might get a bit of rebound. You’ve got, say if a woman gets mastitis in a breast, so there’s a high level of infection and so it’s about having a healthy breast, healthy tummy and be really adherent to medications.

KARL
And much like the U=U was, is incredibly a liberating message for those of us living with HIV in the sense that it allows us to love and have sex without fear. And all of that, how liberating is this concept that it, you know, that a woman can, an HIV positive person, woman can give birth or an HIV positive trans male could give birth and then actually be able to breastfeed.

HEATHER
I’m a mother of three, I’ve got three boys. So my first child was born in 2004 and I had twins in 2007. So I couldn’t breastfeed, like was not on the table. And I was even told, like, if you breastfeed, you will have your children taken from you. So no woman is going to even like try and breastfeed, but not, it’s not also just about having your children taken from you. It’s like, you believe that there is a risk of HIV transmission to that baby. So you’re not gonna breastfeed. And that, and like, we’re still dealing with that now. Like, I know women now who have recently given birth and we’ve got the, we’ve got these guidelines, the new guidelines, but the women are still not making that decision to breastfeed because they don’t quite, they’re not quite there yet with the confidence because the doctors are like, oh, well, yeah if you wanna breastfeed, you can. But you know, I really, I think you should really formula feed. So, if a doctor says that to a woman, they’re gonna do, they’re gonna trust the doctor. They’re gonna go with what the doctor says. I really wanted to breastfeed. You know you’ve got your breasts are so engorged with milk and it’s such a natural urge to do like every cell in your body, you know, wants to breastfeed that baby but you can’t, and that’s an awful thing to go through. And today, women don’t need to do it. They don’t need to like deny that urge and deny their baby what is good for them.

KARL
I think, you know, what’s great is that the U=U and this whole concept of being undetectable, getting undetectable, the messaging behind this just continues to evolve and get better and show with the science back that you know, more reason why we should get tested, get on treatment, and get undetectable because and more opportunities are opening up as the science comes through for us to lead a quote unquote, normal life and do all the things that our HIV negative you know, brothers and sisters can do. Heather, I wish we could talk longer. This is all the time we’ve got, I will say again check out her book, “Timeless on the Silk Road”. It’s our fantastic read. And Heather, lovely to see you. And I can’t wait to give you a hug next time I’m down there in Australia.

HEATHER
Yeah, great. I have to get over to the US. That would be fantastic, yeah.

KARL
Thanks, Heather, that’s gonna do it for this episode of “Plus Talk”. If you want more information, check out our website pluslifemedia.com. And remember you can follow us across social media. We are @pluslifemedia. Until next time, be nice to one another Go get tested. We’ll see you soon.