February 9, 2024 • 25 mins
Episode 2 focuses on HIV rates among black women in America. Host Vanessa Tyler talks to Masonia Traylor, who has been living with HIV for 10 years. Masonia explains that many black women are unaware of the risks of contracting HIV and don't understand safe sex negotiation. She says HIV is stigmatized in the black community, making it difficult for people to get tested or treated. Masonia shares her personal story of contracting HIV from a partner she trusted.
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Episode Transcript
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Speaker 1 (00:00):
I'm Vanessa Tyler. Now on Blackland, we're still getting HIV.
I was shocked to learn black women are still oblivious
to the risks. Why don't we especially get it?
Speaker 2 (00:12):
Well, you know, we don't talk about or use language
like sex negotiation, condom negotiation. It's more so like, you know,
I like this person, and if I like them enough,
I then spend time with them. I trust them.
Speaker 1 (00:28):
But many Black women are finding that trust comes back
to bite them in the you know where. I had
the chance to speak with Massanya Trailer. She's smart, witty
and on a mission for you to see all of
her and the growing number of other Black women, in
particular in the rural self contracting HIV. Yes still, and
(00:49):
there are things to prevent this, not just condoms but medication.
But we're not getting it. We'll talk about it on
black Land.
Speaker 2 (00:57):
And now as a brown person, you just feel so invisible.
Speaker 1 (01:00):
It's not where we're from.
Speaker 3 (01:04):
Brothers and sisters. I welcome you to this joint from day.
Speaker 4 (01:07):
We celebrate freedom.
Speaker 3 (01:09):
Where we are, I know someone's heard something and where
we're going.
Speaker 1 (01:15):
We the people means all the people.
Speaker 5 (01:17):
The black information that work presents Blackland with your host
Vanessa Tyler.
Speaker 2 (01:24):
My name is Massania Trailer and I've been little with
HIV for ten years.
Speaker 1 (01:28):
But Sonya Trailer has a mission and she won't stop,
can't stop. She is obsessed with educating young black girls
about HIV.
Speaker 2 (01:38):
Masanya, welcome, Hi, Alessa. How are you?
Speaker 1 (01:41):
Why are people thinking, almost like they do about COVID,
that HIV is not an issue anymore?
Speaker 3 (01:48):
Oh?
Speaker 2 (01:48):
Well, the human brain, as we as we know, if
you can't see it, it's hard to believe it.
Speaker 1 (01:55):
I was shocked to learn black women are still oblivious
to the risks. Why don't we especially get it?
Speaker 2 (02:02):
I think the information doesn't come to us as quickly,
and once again, if we can't see it, then it's
hard to believe that it is an issue for our
community as black women. I also think that we aren't
equipped and within our values and our morals in a
way that we approach the reasons why we get HIV.
Speaker 1 (02:28):
What do you mean by that?
Speaker 2 (02:31):
Well, you know, we don't talk about or use language
like sex negotiation, condom negotiation. It's more so like, you know,
I like this person, and if I like them enough,
I then spend time with them. I trust them, and
depending on where I feel that the integrity lies I
(02:53):
will trust them with my whole being. And sometimes also
it's the language in which we use around HIV that
stigmatizes others that are living with HIV in our immediate
circles that we're unaware of, and that language causes so
much harm. It makes it really difficult for our Black
men to even go to the doctor and seek out
(03:17):
health care support around taking care of themselves, including a
diagnosis and managing an HIV diagnosis so that they can
get to an undetectable viral load and not transmit HIV
to us. We're still not talking about it as much,
and there's such a heavy shame and fear that's spoken
(03:40):
on when we talk about HIV that makes it really
difficult for people to lean in and support people living
with HIV so that they can take care of themselves
in such a way, or we can take care of
ourselves in such a way that we understand the education
(04:03):
and believe in the science and not the myths that
we can give birth to an HIV negative baby. We
deserve to breastfeed while living with HIV as long as
we're taking care of our health and achieving that undetectable
viral load. We do deserve to still have healthy, long term,
(04:24):
lifelong relationships. Is that if that's what we desire, we
still deserve to have multiple partners over time, if that's
what we so choose to desire. It's the quality of
life in which we navigate with an HIV diagnosis that
can make the difference. Really looking at the reasons not
only why are we contracting HIV, but also the reasons
(04:46):
why we are still dying from complications of AIDS when
we now have the know how in navigating an HIV diagnosis,
But most people don't and they don't believe it. They
choose to be oblivious and ignorant to it and continue
a lot of old narratives that don't serve a healthier
(05:09):
community as black people.
Speaker 1 (05:11):
And when it's all said and done, the burden falls
on her, as it does on most Black women carrying
the disease.
Speaker 2 (05:17):
There's a humongous amount of responsibility that comes with an
HIV diagnosis that our society puts on us, rather than
those who don't know their status and are not getting
in care at all, rather than those of us who
are choosing to know our status and getting in care
and owning how we want to stop HIV together.
Speaker 1 (05:40):
It must be stopped because now black women's numbers are
going up.
Speaker 6 (05:44):
One in five new infections in the US are in women,
and of those, half of those are in black women.
So definitely we still have a lot of work to do.
Speaker 1 (05:55):
Doctor toyn norfor is the senior medical director HIV Prevents
for VIV Healthcare.
Speaker 6 (06:01):
And there are you know, we think a variety of
reasons why that's happening, all the way from awareness of
people thinking on whether they could acquire HIV, to access
to care, access to prevention, access to healthcare providers who
can talk to them about HIV, HIV testing and prevention options,
(06:25):
other barriers to be able to engage and stay in care.
And then we can't forget all the other environmental and
social things that happen where increasing the risk of somebody
possibly acquiring HIV. And some of that has to do
simply with the geography and how much HIV is in
(06:45):
the communities in which they live in. So things around
for some women, challenges around with unstable housing, poverty, systemic racism,
access to care, all of those things do factor into
why we're still seeing a signific number of infections in
Black women.
Speaker 1 (07:02):
For Massnya, she contracted it by opening up to someone
she trusted.
Speaker 2 (07:07):
The way that I look at it is I loved
the person who had an HIV diagnosis, and I trusted
that person because of that love, and I loved the
person so much so that they did not love themselves
enough to know their HIV status to not pass it
on to me.
Speaker 1 (07:27):
She doesn't get into how he got it. Many Black
women become infected by men who could be sleeping with
other men.
Speaker 2 (07:34):
But my issue wasn't their sexuality. My issue wasn't there
promiscuity as well. My issue was that I love someone
who was not taking care of their health. I loved
a man, a Black man, that was not taking care
of his health, and that in turn put me in
(07:54):
a position to not only have to be responsible for
my own health in a different way, but also an
unborn child in a different way.
Speaker 1 (08:05):
What a time to find out that you're HIV positive.
You have the high of finding out that you're having
a baby, and then the low of finding out that
you have this disease.
Speaker 2 (08:18):
Most women find out that they have an HIV diagnosis
when they're pregnant because you're required to get an HIV
test at that time. We're not being accountable behind the
prevalence of HIV in the black community. You see, if
(08:38):
I was to go to a place like Seattle, Washington
or Salt Lake City, Utah, the likeliness of me contracting
HIV from someone white in those areas is quite low
because a prevalence rate is very low. But I guarantee
you the way that they have some HIV aware is
(09:01):
much higher than I would see it and hear about
it in the black community.
Speaker 1 (09:06):
You have also been speaking with black young black women
in role communities where people may be surprised to hear
the numbers are really increasing.
Speaker 2 (09:19):
And I think as a community, we don't do a
strong job of taking that information and getting it to
our grandmothers and our aunts and uncles as quickly, or
our nieces and nephews via text message, or our godchildren.
It takes maybe about seven to ten years, it seems,
(09:41):
for that same three to four year information that rolls
out to really be gossip enough or spoken enough to
really get to the individuals that needed the most.
Speaker 1 (09:52):
I remember how shocked the world was when Magic Johnson
made that announcement in nineteen ninety one.
Speaker 3 (09:57):
First of all, let me say get after late afternoon.
Because of the HIV virus that I.
Speaker 4 (10:07):
Have attained, I will have to retire from the Lakers today.
I just want to make clear first of all that
I do not have the age disease.
Speaker 3 (10:21):
Because I know a lot of you I can want
to know all that, but HIV virus. My wife is fine.
Speaker 4 (10:30):
She's negative, so it's no problem with her.
Speaker 3 (10:35):
I plan on going on living for a long time.
Speaker 1 (10:38):
Back then, being HIV positive was like a death sentence.
Speaker 2 (10:42):
Well, living with HIV is a choice, but dying from
complications of HIV and a's is also a choice. At
least you have a choice now, as opposed to then,
you didn't really have much of a choice. You just
had hope.
Speaker 1 (10:56):
Doctor Toyan says, in addition to hope, their science, the
medical technology has advanced far from when Magic made that announcement,
from a cocktail of multiple pills to often just one
pill a day.
Speaker 6 (11:07):
But I've been in HIV now for over twenty a
half decades, and it's been just to see the phenomenal
advances in therapy that we have for treatment, where if
people are diagnosed with HIV and started on highly active
antiter viral therapy. They can suppress their virus and have
(11:27):
undetectable virus, which means actually, when people are suppressed, they
can no longer transmit the vierosexually, which is what we
call you equals you. Undetectable is equaled to untransmittable, so
that is a huge thing of anti to viral therapy.
But by also suppressing their viral load, their immune system
is no longer damaged by this virus. So people can
(11:50):
have long, healthy, productive lives by medications. And we've gone
from where people had to take medications three to four
times a day when I first started practice in the
the nineties, to single tablet regimens to injectibles that people
can beyond. So there are lots of options now for people,
but it all starts with being able to get that
(12:11):
HIV test. Because that HIV test, if it's positive, people
can be linked to care, started on treatment and do
very well, and if they are HIV negative, they can
have a discussion about what are the options available to
keep them negative and prevent them from getting HIV.
Speaker 1 (12:30):
Yes, there are drugs to prevent getting HIV in the
first place. But here's the kick many wrongly assume those
prevention drugs are only for gay men. Are you finding
that that is especially the case with black women so
called not being told that there are options like something
called the PREP where they can avoid it all together.
Speaker 6 (12:52):
Absolutely, And I can't tell you, Vanessa where optil a
conversation last week or programs that are involved with wheenen.
Then literally in twenty twenty three are saying I did
not know that PREP was for women, Like, so one
is being even aware of PREP or pre exposure prophylaxis,
one is been aware of it, another is been aware
(13:13):
that it's available for you, and that so we're really
talking about PREP is for all genders, all genders if
you're sexually active, and a lot of our guidelines have
really emphasized that. And so we find out that women
are not aware of it. A lot of the material
or marketing things they've seen or conversations have been around
(13:35):
other populations, so they really haven't thought about it for themselves.
And then for those who actually have heard about it,
when they go into the healthcare setting, their healthcare providers
aren't talking about it, so it's not brought up to them.
Well they're thinking, well, maybe I don't need it, or
maybe it's not relevant. And then even in some cases,
(13:56):
we've heard women talk to their health care provider and say, hey,
what about this PREP option and they're told, why do
you need PREP? And when we do that, all of
a sudden, the woman feels like, do I have to
start explaining myself? You know what? Never mind? So there
are lots of there are lots of steps along the
way where we can do better and absolutely have to
(14:18):
do better making people aware of this option, that PREP
pre Exposure profilexis for everyone and anyone who is sexually active.
Second is that they're aware of it and aware of
it and where to access it, and that when they
do get into healthcare spaces, that the healthcare providers are
also ready and aware of these options and able to
(14:41):
have these conversations. And also that we have tools in
place to support people to be able to stay in
treatment or in prevention, because all of these therapies do
require some level of support, and making sure that we
have clinics that are available after hours or we weekends,
that we help with transportation and access to all of
(15:04):
those things that make it sometimes challenging for women to stay.
Speaker 1 (15:08):
In care and I understand that even some black women
are told that PREP would be ineffective for them, that
it wouldn't work for them, which.
Speaker 6 (15:19):
Is absolutely, absolutely incorrect.
Speaker 1 (15:22):
Doctor Toyne is working on the VIV healthcare campaign Risk
to Reason to stomp out AIDS period.
Speaker 6 (15:30):
So the goal of the end in the HIV epidemic
is to get to zero new HIV infections by twenty
thirty and the goal is to then also improve the
quality of life of people living with HIV.
Speaker 1 (15:45):
That's the trip Masnia's on, going to rural areas of
the South to visit these women to find out what
they need, and.
Speaker 2 (15:52):
Usually really basic just the need to know they're not
by themselves in their journey, that when they're ready, they
have access, direct access where they don't have to jump
through hoops and hurdles to get to someone that is
not going to judge them but also understand and support
them and nurture them through their walk. Some of their
(16:15):
needs are if I could just have a moment to
myself to just breathe, you know, where I'm not necessarily
catering to and doing so much for others. Some of
their needs are, you know, within the care packages that
we give their individually curated based off of just feeling
(16:38):
seen and heard, their favorite color, favorite four favorite fragrance,
favorite place to eat, just doing something for themselves that
they may have never had the opportunity to do. And
it's so interesting because one of the questions I asked
them about, like you know, what is their faceabor flower
(17:01):
or what is their favorite colors? Like they're eager to
share it in a way or they're scared to share.
There's hesitancy there because no one ever asked, no one
cared enough to ask. So now you add HIV on
top of that. Now I'm really, you know, less than
valuable than I ever thought I was before, and I
(17:23):
got a fight to have that value back. So it's
really the need of restoration around just feeling supported. Where
they are is not the end all be off or
where they're about to go.
Speaker 1 (17:35):
Her visits will be part of a documentary executive produced
by Extraordinary actress activists Cheryl Lee Roth. Who are some
of the places that you've been going? What are some
of the small towns.
Speaker 2 (17:47):
Well, Athens, Georgia's one like Athens and winder are some
of the places in which we have started as far
as piloting, but Savannah, Georgia's on the list, Sparks, Georgia's
on the list. A lot of places here in Georgia
(18:09):
have been on the list, and we're hopeful that we
can reach other spaces within the Southeast as we begin
to gain more resources and support around the needs of
these women, because it's really frustrating and disheartening and it
really angers me to learn that there have been more
babies being born with an HIV diagnosis lately.
Speaker 1 (18:32):
Well, we've certainly been talking about the whole maternal health
with black women issue. That's the hot topic right now.
How many Black women of all incomes are dying in
childbirth and so now this is the other topic that
needs to be discussed.
Speaker 2 (18:52):
Yeah, I think that there are more women living with
HIV that are dying from complications of HIV. They're just
not to share their stories or they're afraid to. There
are so many moments where I'm in spaces where people
don't know that I'm living with HIV no matter how
public I am, right and I listen to them talk
(19:15):
and then every now and then I have to say,
you know what, I'll disclose and then they're apologizing and
It's like, no, your character was already met when you
open your mouth and spoke about it in the way
you did. There are moments where I've done marketing or
(19:37):
outreach and I say, hey, you know, I'm working on
a campaign, and one of the things I'm doing is
for every two black women I reach, I know I'll
find my one that's living with HIV right. And I
have one woman one time say to me why I'm
definitely not living with HIV. She had an attitude and everything,
and I just said back to her, well, I definitely am.
(20:00):
She didn't know what to say. She was stuck because
she doesn't think that she's HIV positive possible, but she
was standing there with her her boyfriend or the guy
that she was dating, and I just simply said, you know,
I hope you all continuously get tested, and we'll start
to hear and see about more women who are pregnant
(20:22):
and living with HIV and more women who are birth
in HIV positive babies. Because we don't have the enough
specialty providers to do the work, and all of the
different social determinants of health are really impacting how we
show up in our community with our family and our friends,
(20:46):
how we date, who we choose to date, and what
supports men aren't receiving as well. So we're going to
these rural areas because we know that there's more assessed
ability within the city, but we don't want to miss
out on being able to connect with some of the
women in the rural areas that deserve the same type
(21:09):
of access that we get in urban areas.
Speaker 1 (21:12):
Daily life from Masnya raising her two children, one almost
twenty the other twelve. They're educated about the virus. She
has her good days and her bad.
Speaker 2 (21:21):
I feel like I'm aging a lot faster than most
with an HIV diagnosis. There can be a tendency, and
there have been finding scientific findings that people with an
HIV diagnosis tend to show progressive aging by about ten years.
So although I'm thirty six years old, I don't treat
(21:44):
my body like a thirty six year old as much
as I want to. I may have to look at
my body as a forty six year old. So where
a woman may experience pre menopause in her late forties
early I may be experiencing some of that in my
thirties in the early forties. When it comes to HIV
(22:11):
because of the way that it can cause inflammation in
the body, and scientifically and reservoirs in the body, you
might experience a little more maybe just a lot more
fatigue in ways, so you're not sometimes not sure is
it in my head or is it the body.
Speaker 1 (22:30):
She did tell the partner she was with when she
found out she was HIV pregnant. She's not sure what
he did with the knowledge, and wishes all men stand up.
Speaker 2 (22:38):
We're putting so much emphasis on women, heterosexual women. We
put a lot of responsibility on the women, and yet
still when it comes to men, we only look at
sexuality right love for the narrative to shift to say,
(23:02):
how do we get our black men to take care
of their health to the point where women don't have
to worry about this as much when it comes to sex.
When it comes to STIs and STDs, we don't put
any responsibility in conversations on the men because these women,
(23:26):
just like in the documentary, the women didn't get pregnant
by themselves.
Speaker 1 (23:29):
She can only hope her exits getting treatment, hope he's
protecting his partners, and praise his partners. Understand it is
their responsibility to protect themselves. Follow her on Lady Burgundy
dot org. But before we go, Masanya wants to leave
you with this about black women with HIV.
Speaker 2 (23:49):
She's a woman first, and then she's a woman living
with HIV. HIV is not her character. It's not her personality.
HIV is cruel, mean, destructive, It is evil spirited, it
(24:10):
is violent. But that's not who she is. That's just
how the virus can either choose to be in her
body if she doesn't choose to take care of her health.
And it's also how other people can end up treating
her if they remain uneducated and lack empathy towards themselves
(24:31):
being HIV possible.
Speaker 1 (24:33):
Next time on black Land during this Black History Month,
some Black history. You've likely never heard the story of
Adolphus Stroud in nineteen twenty eight. His goal was to
run for the Olympics, but he had to get to
the trials. No money, but plenty of determination. He would
walk if he had to, and he did from his
(24:53):
home in Colorado to the trials taking place at Harvard
University in Massachusetts, a two thousand journey Stroud, a black man,
did on foot in nineteen twenty eight.
Speaker 5 (25:05):
And so he set out on foot A few days later,
on June twenty fifth, at four a m. With a
forty pounds backpack, a golf club, and ten dollars in
his pocket.
Speaker 1 (25:15):
That's Frank Shines. He tells the fascinating story about his family,
real Black history by the way Stroud made it.
Speaker 5 (25:22):
But the last two hours he spent just trying to
stay awake, warming up and being ready for the race.
The gun went off.
Speaker 1 (25:30):
She got to hear what happens next on black Land
on the iHeartRadio app, Apple podcasts, or wherever you get
your podcasts.
I'm Vanessa Tyler. Now on Blackland, we're still getting HIV.
I was shocked to learn black women are still oblivious
to the risks. Why don't we especially get it?
Speaker 2 (00:12):
Well, you know, we don't talk about or use language
like sex negotiation, condom negotiation. It's more so like, you know,
I like this person, and if I like them enough,
I then spend time with them. I trust them.
Speaker 1 (00:28):
But many Black women are finding that trust comes back
to bite them in the you know where. I had
the chance to speak with Massanya Trailer. She's smart, witty
and on a mission for you to see all of
her and the growing number of other Black women, in
particular in the rural self contracting HIV. Yes still, and
(00:49):
there are things to prevent this, not just condoms but medication.
But we're not getting it. We'll talk about it on
black Land.
Speaker 2 (00:57):
And now as a brown person, you just feel so invisible.
Speaker 1 (01:00):
It's not where we're from.
Speaker 3 (01:04):
Brothers and sisters. I welcome you to this joint from day.
Speaker 4 (01:07):
We celebrate freedom.
Speaker 3 (01:09):
Where we are, I know someone's heard something and where
we're going.
Speaker 1 (01:15):
We the people means all the people.
Speaker 5 (01:17):
The black information that work presents Blackland with your host
Vanessa Tyler.
Speaker 2 (01:24):
My name is Massania Trailer and I've been little with
HIV for ten years.
Speaker 1 (01:28):
But Sonya Trailer has a mission and she won't stop,
can't stop. She is obsessed with educating young black girls
about HIV.
Speaker 2 (01:38):
Masanya, welcome, Hi, Alessa. How are you?
Speaker 1 (01:41):
Why are people thinking, almost like they do about COVID,
that HIV is not an issue anymore?
Speaker 3 (01:48):
Oh?
Speaker 2 (01:48):
Well, the human brain, as we as we know, if
you can't see it, it's hard to believe it.
Speaker 1 (01:55):
I was shocked to learn black women are still oblivious
to the risks. Why don't we especially get it?
Speaker 2 (02:02):
I think the information doesn't come to us as quickly,
and once again, if we can't see it, then it's
hard to believe that it is an issue for our
community as black women. I also think that we aren't
equipped and within our values and our morals in a
way that we approach the reasons why we get HIV.
Speaker 1 (02:28):
What do you mean by that?
Speaker 2 (02:31):
Well, you know, we don't talk about or use language
like sex negotiation, condom negotiation. It's more so like, you know,
I like this person, and if I like them enough,
I then spend time with them. I trust them, and
depending on where I feel that the integrity lies I
(02:53):
will trust them with my whole being. And sometimes also
it's the language in which we use around HIV that
stigmatizes others that are living with HIV in our immediate
circles that we're unaware of, and that language causes so
much harm. It makes it really difficult for our Black
men to even go to the doctor and seek out
(03:17):
health care support around taking care of themselves, including a
diagnosis and managing an HIV diagnosis so that they can
get to an undetectable viral load and not transmit HIV
to us. We're still not talking about it as much,
and there's such a heavy shame and fear that's spoken
(03:40):
on when we talk about HIV that makes it really
difficult for people to lean in and support people living
with HIV so that they can take care of themselves
in such a way, or we can take care of
ourselves in such a way that we understand the education
(04:03):
and believe in the science and not the myths that
we can give birth to an HIV negative baby. We
deserve to breastfeed while living with HIV as long as
we're taking care of our health and achieving that undetectable
viral load. We do deserve to still have healthy, long term,
(04:24):
lifelong relationships. Is that if that's what we desire, we
still deserve to have multiple partners over time, if that's
what we so choose to desire. It's the quality of
life in which we navigate with an HIV diagnosis that
can make the difference. Really looking at the reasons not
only why are we contracting HIV, but also the reasons
(04:46):
why we are still dying from complications of AIDS when
we now have the know how in navigating an HIV diagnosis,
But most people don't and they don't believe it. They
choose to be oblivious and ignorant to it and continue
a lot of old narratives that don't serve a healthier
(05:09):
community as black people.
Speaker 1 (05:11):
And when it's all said and done, the burden falls
on her, as it does on most Black women carrying
the disease.
Speaker 2 (05:17):
There's a humongous amount of responsibility that comes with an
HIV diagnosis that our society puts on us, rather than
those who don't know their status and are not getting
in care at all, rather than those of us who
are choosing to know our status and getting in care
and owning how we want to stop HIV together.
Speaker 1 (05:40):
It must be stopped because now black women's numbers are
going up.
Speaker 6 (05:44):
One in five new infections in the US are in women,
and of those, half of those are in black women.
So definitely we still have a lot of work to do.
Speaker 1 (05:55):
Doctor toyn norfor is the senior medical director HIV Prevents
for VIV Healthcare.
Speaker 6 (06:01):
And there are you know, we think a variety of
reasons why that's happening, all the way from awareness of
people thinking on whether they could acquire HIV, to access
to care, access to prevention, access to healthcare providers who
can talk to them about HIV, HIV testing and prevention options,
(06:25):
other barriers to be able to engage and stay in care.
And then we can't forget all the other environmental and
social things that happen where increasing the risk of somebody
possibly acquiring HIV. And some of that has to do
simply with the geography and how much HIV is in
(06:45):
the communities in which they live in. So things around
for some women, challenges around with unstable housing, poverty, systemic racism,
access to care, all of those things do factor into
why we're still seeing a signific number of infections in
Black women.
Speaker 1 (07:02):
For Massnya, she contracted it by opening up to someone
she trusted.
Speaker 2 (07:07):
The way that I look at it is I loved
the person who had an HIV diagnosis, and I trusted
that person because of that love, and I loved the
person so much so that they did not love themselves
enough to know their HIV status to not pass it
on to me.
Speaker 1 (07:27):
She doesn't get into how he got it. Many Black
women become infected by men who could be sleeping with
other men.
Speaker 2 (07:34):
But my issue wasn't their sexuality. My issue wasn't there
promiscuity as well. My issue was that I love someone
who was not taking care of their health. I loved
a man, a Black man, that was not taking care
of his health, and that in turn put me in
(07:54):
a position to not only have to be responsible for
my own health in a different way, but also an
unborn child in a different way.
Speaker 1 (08:05):
What a time to find out that you're HIV positive.
You have the high of finding out that you're having
a baby, and then the low of finding out that
you have this disease.
Speaker 2 (08:18):
Most women find out that they have an HIV diagnosis
when they're pregnant because you're required to get an HIV
test at that time. We're not being accountable behind the
prevalence of HIV in the black community. You see, if
(08:38):
I was to go to a place like Seattle, Washington
or Salt Lake City, Utah, the likeliness of me contracting
HIV from someone white in those areas is quite low
because a prevalence rate is very low. But I guarantee
you the way that they have some HIV aware is
(09:01):
much higher than I would see it and hear about
it in the black community.
Speaker 1 (09:06):
You have also been speaking with black young black women
in role communities where people may be surprised to hear
the numbers are really increasing.
Speaker 2 (09:19):
And I think as a community, we don't do a
strong job of taking that information and getting it to
our grandmothers and our aunts and uncles as quickly, or
our nieces and nephews via text message, or our godchildren.
It takes maybe about seven to ten years, it seems,
(09:41):
for that same three to four year information that rolls
out to really be gossip enough or spoken enough to
really get to the individuals that needed the most.
Speaker 1 (09:52):
I remember how shocked the world was when Magic Johnson
made that announcement in nineteen ninety one.
Speaker 3 (09:57):
First of all, let me say get after late afternoon.
Because of the HIV virus that I.
Speaker 4 (10:07):
Have attained, I will have to retire from the Lakers today.
I just want to make clear first of all that
I do not have the age disease.
Speaker 3 (10:21):
Because I know a lot of you I can want
to know all that, but HIV virus. My wife is fine.
Speaker 4 (10:30):
She's negative, so it's no problem with her.
Speaker 3 (10:35):
I plan on going on living for a long time.
Speaker 1 (10:38):
Back then, being HIV positive was like a death sentence.
Speaker 2 (10:42):
Well, living with HIV is a choice, but dying from
complications of HIV and a's is also a choice. At
least you have a choice now, as opposed to then,
you didn't really have much of a choice. You just
had hope.
Speaker 1 (10:56):
Doctor Toyan says, in addition to hope, their science, the
medical technology has advanced far from when Magic made that announcement,
from a cocktail of multiple pills to often just one
pill a day.
Speaker 6 (11:07):
But I've been in HIV now for over twenty a
half decades, and it's been just to see the phenomenal
advances in therapy that we have for treatment, where if
people are diagnosed with HIV and started on highly active
antiter viral therapy. They can suppress their virus and have
(11:27):
undetectable virus, which means actually, when people are suppressed, they
can no longer transmit the vierosexually, which is what we
call you equals you. Undetectable is equaled to untransmittable, so
that is a huge thing of anti to viral therapy.
But by also suppressing their viral load, their immune system
is no longer damaged by this virus. So people can
(11:50):
have long, healthy, productive lives by medications. And we've gone
from where people had to take medications three to four
times a day when I first started practice in the
the nineties, to single tablet regimens to injectibles that people
can beyond. So there are lots of options now for people,
but it all starts with being able to get that
(12:11):
HIV test. Because that HIV test, if it's positive, people
can be linked to care, started on treatment and do
very well, and if they are HIV negative, they can
have a discussion about what are the options available to
keep them negative and prevent them from getting HIV.
Speaker 1 (12:30):
Yes, there are drugs to prevent getting HIV in the
first place. But here's the kick many wrongly assume those
prevention drugs are only for gay men. Are you finding
that that is especially the case with black women so
called not being told that there are options like something
called the PREP where they can avoid it all together.
Speaker 6 (12:52):
Absolutely, And I can't tell you, Vanessa where optil a
conversation last week or programs that are involved with wheenen.
Then literally in twenty twenty three are saying I did
not know that PREP was for women, Like, so one
is being even aware of PREP or pre exposure prophylaxis,
one is been aware of it, another is been aware
(13:13):
that it's available for you, and that so we're really
talking about PREP is for all genders, all genders if
you're sexually active, and a lot of our guidelines have
really emphasized that. And so we find out that women
are not aware of it. A lot of the material
or marketing things they've seen or conversations have been around
(13:35):
other populations, so they really haven't thought about it for themselves.
And then for those who actually have heard about it,
when they go into the healthcare setting, their healthcare providers
aren't talking about it, so it's not brought up to them.
Well they're thinking, well, maybe I don't need it, or
maybe it's not relevant. And then even in some cases,
(13:56):
we've heard women talk to their health care provider and say, hey,
what about this PREP option and they're told, why do
you need PREP? And when we do that, all of
a sudden, the woman feels like, do I have to
start explaining myself? You know what? Never mind? So there
are lots of there are lots of steps along the
way where we can do better and absolutely have to
(14:18):
do better making people aware of this option, that PREP
pre Exposure profilexis for everyone and anyone who is sexually active.
Second is that they're aware of it and aware of
it and where to access it, and that when they
do get into healthcare spaces, that the healthcare providers are
also ready and aware of these options and able to
(14:41):
have these conversations. And also that we have tools in
place to support people to be able to stay in
treatment or in prevention, because all of these therapies do
require some level of support, and making sure that we
have clinics that are available after hours or we weekends,
that we help with transportation and access to all of
(15:04):
those things that make it sometimes challenging for women to stay.
Speaker 1 (15:08):
In care and I understand that even some black women
are told that PREP would be ineffective for them, that
it wouldn't work for them, which.
Speaker 6 (15:19):
Is absolutely, absolutely incorrect.
Speaker 1 (15:22):
Doctor Toyne is working on the VIV healthcare campaign Risk
to Reason to stomp out AIDS period.
Speaker 6 (15:30):
So the goal of the end in the HIV epidemic
is to get to zero new HIV infections by twenty
thirty and the goal is to then also improve the
quality of life of people living with HIV.
Speaker 1 (15:45):
That's the trip Masnia's on, going to rural areas of
the South to visit these women to find out what
they need, and.
Speaker 2 (15:52):
Usually really basic just the need to know they're not
by themselves in their journey, that when they're ready, they
have access, direct access where they don't have to jump
through hoops and hurdles to get to someone that is
not going to judge them but also understand and support
them and nurture them through their walk. Some of their
(16:15):
needs are if I could just have a moment to
myself to just breathe, you know, where I'm not necessarily
catering to and doing so much for others. Some of
their needs are, you know, within the care packages that
we give their individually curated based off of just feeling
(16:38):
seen and heard, their favorite color, favorite four favorite fragrance,
favorite place to eat, just doing something for themselves that
they may have never had the opportunity to do. And
it's so interesting because one of the questions I asked
them about, like you know, what is their faceabor flower
(17:01):
or what is their favorite colors? Like they're eager to
share it in a way or they're scared to share.
There's hesitancy there because no one ever asked, no one
cared enough to ask. So now you add HIV on
top of that. Now I'm really, you know, less than
valuable than I ever thought I was before, and I
(17:23):
got a fight to have that value back. So it's
really the need of restoration around just feeling supported. Where
they are is not the end all be off or
where they're about to go.
Speaker 1 (17:35):
Her visits will be part of a documentary executive produced
by Extraordinary actress activists Cheryl Lee Roth. Who are some
of the places that you've been going? What are some
of the small towns.
Speaker 2 (17:47):
Well, Athens, Georgia's one like Athens and winder are some
of the places in which we have started as far
as piloting, but Savannah, Georgia's on the list, Sparks, Georgia's
on the list. A lot of places here in Georgia
(18:09):
have been on the list, and we're hopeful that we
can reach other spaces within the Southeast as we begin
to gain more resources and support around the needs of
these women, because it's really frustrating and disheartening and it
really angers me to learn that there have been more
babies being born with an HIV diagnosis lately.
Speaker 1 (18:32):
Well, we've certainly been talking about the whole maternal health
with black women issue. That's the hot topic right now.
How many Black women of all incomes are dying in
childbirth and so now this is the other topic that
needs to be discussed.
Speaker 2 (18:52):
Yeah, I think that there are more women living with
HIV that are dying from complications of HIV. They're just
not to share their stories or they're afraid to. There
are so many moments where I'm in spaces where people
don't know that I'm living with HIV no matter how
public I am, right and I listen to them talk
(19:15):
and then every now and then I have to say,
you know what, I'll disclose and then they're apologizing and
It's like, no, your character was already met when you
open your mouth and spoke about it in the way
you did. There are moments where I've done marketing or
(19:37):
outreach and I say, hey, you know, I'm working on
a campaign, and one of the things I'm doing is
for every two black women I reach, I know I'll
find my one that's living with HIV right. And I
have one woman one time say to me why I'm
definitely not living with HIV. She had an attitude and everything,
and I just said back to her, well, I definitely am.
(20:00):
She didn't know what to say. She was stuck because
she doesn't think that she's HIV positive possible, but she
was standing there with her her boyfriend or the guy
that she was dating, and I just simply said, you know,
I hope you all continuously get tested, and we'll start
to hear and see about more women who are pregnant
(20:22):
and living with HIV and more women who are birth
in HIV positive babies. Because we don't have the enough
specialty providers to do the work, and all of the
different social determinants of health are really impacting how we
show up in our community with our family and our friends,
(20:46):
how we date, who we choose to date, and what
supports men aren't receiving as well. So we're going to
these rural areas because we know that there's more assessed
ability within the city, but we don't want to miss
out on being able to connect with some of the
women in the rural areas that deserve the same type
(21:09):
of access that we get in urban areas.
Speaker 1 (21:12):
Daily life from Masnya raising her two children, one almost
twenty the other twelve. They're educated about the virus. She
has her good days and her bad.
Speaker 2 (21:21):
I feel like I'm aging a lot faster than most
with an HIV diagnosis. There can be a tendency, and
there have been finding scientific findings that people with an
HIV diagnosis tend to show progressive aging by about ten years.
So although I'm thirty six years old, I don't treat
(21:44):
my body like a thirty six year old as much
as I want to. I may have to look at
my body as a forty six year old. So where
a woman may experience pre menopause in her late forties
early I may be experiencing some of that in my
thirties in the early forties. When it comes to HIV
(22:11):
because of the way that it can cause inflammation in
the body, and scientifically and reservoirs in the body, you
might experience a little more maybe just a lot more
fatigue in ways, so you're not sometimes not sure is
it in my head or is it the body.
Speaker 1 (22:30):
She did tell the partner she was with when she
found out she was HIV pregnant. She's not sure what
he did with the knowledge, and wishes all men stand up.
Speaker 2 (22:38):
We're putting so much emphasis on women, heterosexual women. We
put a lot of responsibility on the women, and yet
still when it comes to men, we only look at
sexuality right love for the narrative to shift to say,
(23:02):
how do we get our black men to take care
of their health to the point where women don't have
to worry about this as much when it comes to sex.
When it comes to STIs and STDs, we don't put
any responsibility in conversations on the men because these women,
(23:26):
just like in the documentary, the women didn't get pregnant
by themselves.
Speaker 1 (23:29):
She can only hope her exits getting treatment, hope he's
protecting his partners, and praise his partners. Understand it is
their responsibility to protect themselves. Follow her on Lady Burgundy
dot org. But before we go, Masanya wants to leave
you with this about black women with HIV.
Speaker 2 (23:49):
She's a woman first, and then she's a woman living
with HIV. HIV is not her character. It's not her personality.
HIV is cruel, mean, destructive, It is evil spirited, it
(24:10):
is violent. But that's not who she is. That's just
how the virus can either choose to be in her
body if she doesn't choose to take care of her health.
And it's also how other people can end up treating
her if they remain uneducated and lack empathy towards themselves
(24:31):
being HIV possible.
Speaker 1 (24:33):
Next time on black Land during this Black History Month,
some Black history. You've likely never heard the story of
Adolphus Stroud in nineteen twenty eight. His goal was to
run for the Olympics, but he had to get to
the trials. No money, but plenty of determination. He would
walk if he had to, and he did from his
(24:53):
home in Colorado to the trials taking place at Harvard
University in Massachusetts, a two thousand journey Stroud, a black man,
did on foot in nineteen twenty eight.
Speaker 5 (25:05):
And so he set out on foot A few days later,
on June twenty fifth, at four a m. With a
forty pounds backpack, a golf club, and ten dollars in
his pocket.
Speaker 1 (25:15):
That's Frank Shines. He tells the fascinating story about his family,
real Black history by the way Stroud made it.
Speaker 5 (25:22):
But the last two hours he spent just trying to
stay awake, warming up and being ready for the race.
The gun went off.
Speaker 1 (25:30):
She got to hear what happens next on black Land
on the iHeartRadio app, Apple podcasts, or wherever you get
your podcasts.
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