April 13, 2021 • 54 mins
When HIV was first identified in the early 1980s, it was a public health crisis mired in urgent scientific questions: How was it transmitted? What were the symptoms? Could it be treated? But alongside that, and equally challenging to public health, was the stigma attached to the virus. Homophobia, racism, and shame around sex combined with a woefully inadequate response from our government made the epidemic even more deadly. Today, we know how to treat HIV/AIDS and help prevent transmission. Still, thousands of Americans contract HIV every year, millions of people around the world do not receive treatment, and stigma remains dangerous, even deadly.
In this debut episode, you’ll hear from activist Peter Staley about his experience as a member of the group ACT UP back in the 1980s, and his work today to fight stigma, and help people get the education and care they deserve. Then Queer Eye’s Jonathan Van Ness shares his journey through fear and stigma after being diagnosed as HIV-positive to becoming a fierce advocate and inspiration for other. And finally, Dr. Oni Blackstock, an HIV physician and advocate working in New York City, shares her experience treating patients on the front-lines amid a pandemic and the ongoing fight for equity in healthcare access and quality for all.
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Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:00):
Hi, I'm Chelsea Clinton, and this is the very first
episode of my new podcast. In fact, in the midst
of COVID nineteen, more people than ever before are paying
attention to public health. But COVID nineteen isn't the only
public health issue that we're facing currently. Now before you say, oh,
I'm just sick of thinking about this. As someone who's
studied and works on these issues, they impact us all
(00:23):
and talking about them doesn't have to feel like health class.
So in this podcast, I'm talking to you and learning
from smart people, advocates, patients, experts, and more about other
public health issues, from climate change to reproductive rights to
HIV AIDS. Understand those crises, what we're doing about them,
and what they can teach us about COVID nineteen and
our response or lack there up at times. Today we're
(00:46):
talking about one of the very first public health issues
that ever captured my attention back when I was a
kid in lettar Rock, Arkansas, the HIV AIDS epidemic. When
HIV was first identified in the early nineteen eighties, it
was a public health crisis, mired and urgent scientific questions.
How was it transmitted, what were the short and long
term symptoms, could it be treated. And then there was
(01:07):
also stigma and bigotry, which claustrophobic and deadly homophobia, racism,
and shame around sex, to name only a few examples,
combined with a woefully inadequate response from our government, made
the epidemic even more deadly. Today, we know how to
help prevent new HIV infections, and we have medicines to
(01:28):
render aids of chronic disease and make HIV itself untransmittable. Still,
thousands of Americans acquire HIV every year, Millions of people
around the world don't have access to treatment, and stigma
remains dangerous, even deadly, across our country and around the globe.
That's part of what we'll be talking about today. We'll
hear from Queer Eyes Jonathan van Ness, who has been
(01:49):
a vocal advocate for people living with HIV AIDS since
publicly sharing his own HIV positive status in twenty nineteen,
and won't listen to dr Ony Blackstock, and HIV physician
and health equity advocate working here in New York City
talk about her experiences on the front line. But first
we'll hear from someone who got his start as an
activist and member of the group act UP back in
(02:11):
the nineteen eighties, Peter Staley. More than thirty years ago,
Peter and other LGBTQ activists demanded a response from our
government on AIDS, and they refused to be silenced, even
when confronted with disdain, disinterests, and arrests. Their rallying cry
with silence equals death. Peter and act ups work help
(02:32):
move attention, research, dollars, and urgency, and certainly help save lives.
In the decades since, he has continued his activism, working
to fight stigma, help people get the education and care
they deserve, and push for broader awareness of what still
needs to be done. Peter, thank you so much for
your time today. It's great to be with you, Chelsea,
(02:55):
and especially to talk about public health and all the
craziness we're going through right out and ways to make
a difference. And so, Peter, I really did first become
public health aware. Arguably I first became kind of citizen
aware reading about HIV and AIDS in my local newspapers
in Arkansas and then watching Magic Johnson courageously talk about
(03:18):
his HIV status as a middle school kid in Little Rock.
Could you just take us a little bit back to
those early days and what it was like, what the
barriers you really faced were, and why you had to
fight so hard to draw attention and resources to the
AIDS crisis. Well, I was a closeted bond trader on
Wall Street when the first cases of HIV AIDS were
(03:41):
reported in the summer, and like many I didn't know
what was going on and noticed right away that the
response that was occurring by politicians, etcetera was very wrapped
up in the homophobia I sent that was systemic in
America from my first sense of my own gayness in
(04:06):
my teens, and so I not only was actively suppressing
and hiding a big part of myself, I kind of
did everything I could suppress and ignore the early years
of the AIDS crisis until I myself got diagnosed in
but as we recall, in that year, there was no
(04:26):
way of ignoring it. The country finally woke up in
an actually very frightening and terrible way because Rock Hudson
was diagnosed and later died that fall, and the nation
went into this panic very much like a Bola, where
there was just extraordinary levels of stigma. Parents were pulling
their children out of schools if there were rumors of
(04:47):
another child having HIV, and the homophobia was only getting worse.
I mean, the backlash against US was getting extraordinarily frightening,
making our community kind of dumble out of the Gate
is to, you know, how do we respond to this
in this environment without a violent response being met against us?
(05:09):
And so it took the Gate community a long time
to respond to this. But we had an administration that
wanted nothing to do with this crisis, well, Peter, an
administration that also didn't even name the crisis. Reagan didn't
say the word AIDS until five, I think only because
he was asked by a member of the press, and
then he didn't actually speak to it formally until seven,
(05:32):
that is six years into an epidemic, just totally ignoring Well, Peter.
We have lived through though administration under Trump that certainly
did tell us repeatedly it was going to disappear to
kind of wilfully trying to hasten its end. And it
was very triggering watching COVID rollout in January and February
(05:54):
and the US the similarities to those early AIDS years
where you had two presidents both very anti science both
coming into office with a core constituency of the religious right.
In Reagan's situation, it was the moral majority. And because
of that, just not listening to the scientists, beginning to
(06:18):
take anti science political postures about the epidemic, and missing
the opportunity very early on to nip the new epidemic
in the bud. And the sad fact of this is
when epidemics hit anywhere in the world, of what a
leader needs to do has to happen in the first weeks, months,
(06:39):
definitely first year, even with a slow moving virus like HIV,
and if you miss that window, you allow an epidemic
to occur. If you do what Taiwan did and a
few other places of jumping right in right at the beginning,
you can stop it in its tracks and save yourself
all pain down the law. And all we witnessed in
(07:02):
January and February was a dismissiveness of the responsibility to
do that, and we watched the virus just flood America
because of that dismissive. I think what you have seen
is basically one of our two major parties begin during
the early eighties a long process of abanding basic facts
(07:25):
that both parties used to always accept and then debate
and take different sides on but those basic facts got
confronted and eventually abandoned by one of our major parties.
It's rejecting facts all over the place. Alongside the rejection
of facts, one of those anti democratic means and mechanisms
(07:47):
really is stigma. And certainly we saw how deadly stigma
very much was in the nineteen eighties and I think
arguably still true today as it relates to HIV. AIDS
were also ing. I think the real challenge of what
stigma is and means during COVID, how do we not
(08:08):
demonize people who are making not great choices around mask
wearing or social distancing is one example, while still trying
to persuade them to wear masks and social distance. Can
you just talk about reflect on how you both worked
against stigma but also tried to help people understand there
(08:28):
really is a difference between good and not good choices. Yeah,
it's a challenge. I mean, h stigma has probably been
the most persistent and severe disease related stigma that the
world has ever seen. It's been very hard to fight,
very depressing. I have been bullied in the last decade.
(08:50):
I guess at how we're making a little bit of
progress against aid stigma in the US and around the world,
mostly because of the big scientific victories we've had and
really driving home those tools and coupling it with the
message that stigma doesn't fit into this picture anymore. We're
(09:12):
slowly whittling away at it with science and a clear
public health message that you just delivered day after day
after day. We have the potential to do the same
with COVID by having from the very top, from the
president on down through all the public health officials staying
on the exact same message and just sticking with it
(09:35):
hour after hour, day after day. This is what works.
This is how we do this together. If we do that,
then we can let go of some of our less
helpful tools, which is finger wagging and people screaming at
each other. We know from decades of social science that
(09:56):
the social shaming side of public health is the least effective.
Doesn't work. It doesn't work. Part of your real early
work and Act Up New York's earlier work and so
many others, was both to hold the government accountable for
what they weren't doing and also to start to shift
(10:16):
public opinion that your lives how to value Can you
just talk about how you work to both hold the
government accountable and shift public opinion. It was a very
frightening job in front of act UP when we burst
on the scene. In the backlash against the queer community
(10:38):
in the US had only gotten worse because of AIDS.
And that's when act UP came on the scene and
we realized we weren't going to be able to get
anything out of the US government unless we changed hearts
and minds in America. How are we going to do that?
The way we did it was risking it all. We
decided to put our bodies on the line to make
(10:59):
ourselves was the number one target of attention in America.
They had never seen the queer community protest on Mass
week after week after week. Stonewall wasn't televised, it got
very little pressed. Nobody heard about it at the time,
and by the hundreds we got arrested and it was
(11:20):
the lead story on all three networks, and we became
at that moment America's movement to jour We were like
the Black Lives Matter or occupy of our time, and
we shattered the American myth of the homosexual as being
weak and timid and afraid and cowering in a corner.
(11:41):
What they saw instead was passion and determination, and they
saw community. The press wrapped our activism and used it
as b role for stories about all the groups we
had formed to take care of our dead and dying,
and told the American people that the reason we had
(12:02):
to do that was because the government had totally ignored it.
And within months, the American public, they may not have
loved the gay community that you know, it wasn't gonna happen,
that fast acceptance wasn't gonna happen overnight. But they felt
deep shame when they realized finally that they were letting
(12:22):
thousands of their own citizens die and just letting it
happen because they didn't care. And that guilt trip changed everything.
Holing almost overnight showed that eighty percent of Americans wanted
Reagan and then Bush to spend more on AIDS research.
You can't get of Americans to agree on anything. That
(12:44):
was that shift. And you also saw the gallop pole
the level of Americans who thought gays should be thrown
in jail. That number collapsed between two data points between
eighty eight and eighty nine and just don't see pole
shifts like that anymore. And within two years of that,
(13:05):
Congress was appropriating and Reagan and Bush were approving hundreds
of millions of dollars of increases in the AIDS research budget.
It reached one billion dollars a year. By and other
disease groups for complaining about a powerful AIDS lobby. And
then we got your father coming into office who fully
leveraged all those dollars and put them to work during
(13:26):
the nineties, aggressively spending that on research in the most
effective ways, to the point where by the end of
his first term we had this amazing breakthrough. And there's
the reason I'm on your show today, the reason all
of us are alive because of those tax dollars that
we loosened up. So that's how you do it. You've
(13:46):
been in this work for thirty five plus years. What
keeps you going? How do you keep going? Yeah? You know,
I got into Act up right after its first demonstration
because I had been died, knowest a year and a
half earlier, and I came to it with such selfish reason,
you know, very human. I just wanted I wanted to
(14:07):
see if I could save myself by myself a little time,
add a few months to my lifespan. But within six
months of being in that room on the first floor
of the Lesbian Gay Community Center West thirteenth Street in
New York City, with hundreds of other activists fighting for
their lives and the lives of their friends, I got
(14:29):
bitten by another bug. And that was this beautiful movement
empathy of fighting for the greater good, fighting for something
more than yourself. And I got to witness all that.
I got to witness actually victories and witness lives being
saved as a result of activism. Once you once you
(14:51):
feel that feeling, once you're part of that, being part
of a community that gets a kind of high out
of changing the world for the better, there's no turning back.
And it's wonderful to see today's younger generations because they,
you know, something got ingrained at them where they've got
the empathy right up front. It's their innate empathy and
(15:13):
their frustration with the world's problems that give me hope
that we can solve them. Because everybody's adding a little
activism into their lives now and realizing that they feel
better when they're able to help others and do work
that serves a greater good. Peter Staley, thank you so
much for your time today. Thank you, Chelsea. You can
(15:35):
keep up with Peter on Twitter. He's at Peter Staley.
We're taking a quick break, stay with us. A lot
has changed since Peter first got to start as an activist.
Today we know more about prevention and treatment is more
(15:57):
readily available to more people, including and retroviral therapy or
a r T, which keeps viral load an undetectable level
and makes the virus untransmittable. But we still have so
much more to do, including on fighting stigma, myths, and misinformation.
That's why I'm so thankful today's next guest. He's one
of the one point to million people in the US
(16:17):
living with HIV AIDS, and he has done so much
to shatter stigma, educate people about HIV and AIDS, and
honestly and joyfully tell his own story. I'm talking about
the one and the only Jonathan van Ness. Jonathan has
famously helped people to be their own best selves on
Netflix Queer Eye. He has his own podcast, which is
one of the best titles around, Getting Curious with Jonathan
(16:40):
van Ness, and he shared his story, including his HIV diagnosis,
in his autobiography, which is called Over the Top, A
Raw Journey to Self Love. Jonathan, thank you so much
for talking with me today. I've been really excited about
this conversation. Well, thanks so much for me, and you know,
(17:01):
wherever our conversation goes, I'm here for it. But I
just would be remissed if I did not mention at
the top. Big fan, love your dad, love your mom.
I'm really excited to meet you. I've been like obsessed
with you and your Harrison's the literally your curls have
always been giving me life and I just can't believe
that we're getting to like chat right now. And yeah,
(17:21):
so I love you to pieces. I'm so excited that
I'm like, my smile is like bursting off of my face,
well my my hair, like as many stories in and
of itself. But that's a different conversation. So I'm a
few years older than you, but we both grew up
like in the eighties and the nineties, and I remember
learning about hi V like as a kid in Arkansas,
(17:43):
and then I really remember when Magic Johnson so courageously
and heroically spoke about being HIV positive. Do you have
moments like I had when I was a kid watching
Magic Johnson that really stood out to you as people
who were living with this disease and in their own
way helping to stand up against the stigma of the disease. Yeah.
(18:06):
I remember very clearly the first time I ever heard
about it, and it was my oldest brother telling us
at the dinner table what he had learned about at school.
There's this thing and it's called HIV AIDS and it
kills men who have sex with men. That's what your
brother was learning in school. Yeah, men who have sex
(18:27):
with men and drug users. And so you know when
I heard that, I was like, oh God, Like I mean,
I think it was just a time where I was like,
could I be gay? What is gay? Am I different
than everyone else? So I think from a very early
age it was like, it's going to kill me. And
you know, as I got a little bit older, that
only became more solidified. And I think, you know one
(18:48):
thing that unfortunately happened in the nineties, and I think
for me another time when you know my Magic Johnson moment.
Obviously this may surprise you, but I'm not the biggest
basketball fan. While every one was talking about the Dream
Team in Barcelona, I was talking about Shannon Miller and
how she should have won the fucking gold but you know,
she got second, in a very close second. But that
(19:09):
was also the first time in the United States gymnastics
team I want a team medal was a gorgeous bronze
in Barcelona. Was very epic, and so that's what I
was glued too. In ninety two and then nineteen nineties six,
Rudy Galindo won the United States Men's figure skating competition
and he was living with HIV and he talked about that,
I remember in this like segment that year, and he
(19:32):
it was just very ahead of his time for someone
to you know, be an athlete who was winning nationals,
and at least for me, I mean, because it was
new to me. I you know, again, I didn't really
watch basketball, so it was like magic what it was
Rudy Glindo for me in nine and he was just incredible.
And I think that was, you know, again, years before
(19:53):
I was understanding what my sexual orientation meant. And I
do think that unfortunately, in the nineties you had this
like incredibly homophobic time, and there was just such a
pervasive idea that this was God's punishment, this was people
bringing in upon themselves, just a very heartless response. And
(20:14):
I think one thing that has been disappointing for me
is is that realizing how much ignorance and stigma there
still is, and how comfortable folks are to still share
that with me other people. There's just still a pervasive,
mean spirited ignorance that exists around HIV. And also, not
(20:35):
that you asked, I'm to say it. One thing that
I've noticed through this coronavirus epidemic is I get curious
about like, there were laws that were criminalizing potential spread
of HIV not long after the discovery of HIV. It
was less than a decade ago when the Obama administration
finally removed the prohibition of HIV positive people from entering
(20:58):
the United States if you weren't an American citizen, right,
which is a mind boggling I think data point, Well,
here's something that's mind boggling. I think that has given
me a lot of trauma. It's something that I think
about a lot. The day that I found out I
was positive in the state of Missouri, I had to
sign a piece of paper that said that I was
a bio terrorist if I ever knowingly spread the disease.
(21:22):
And there are laws on the books all over this
country that could be horribly used against someone who that's
living with HIV, despite if they disclosed. No one should
be out knowingly spreading HIV. That would be like a
horrible thing to do. But what we know about medication
and anti retroviral therapy that when someone who's living with
HIV achieves and maintains an undetectable viral load, you are
(21:46):
not passing your virus transisible. You're undetectable equals untransmittable. So
these draconian laws that are on all these state books
that and oftentimes are in you know, conservative constrolled legislatures
where homophobia and transphobia and racism are so rampant and
so commonplace, there's just no explanation and understanding. And I've
(22:06):
heard people say just such horrifically uneducated things. One of
my really close family friends once said to me, you know,
this is in California legal marijuana. And this family friend
like was, oh, I got my stomach hurts like my stomach,
And I was like, girl, take ahead of this joint, like,
you'll feel so much better to like calm your stomach
right down. You can go get yourself a little biscuit,
(22:28):
a little treat. Afterwards, you'll feel amazing and without skipping
a beat. This family friend, this person who I had
known my entire life before HIV. After HIV, crying on shoulders,
you know, learning to live with this disease, going through
all the things I had to go through. And this
was in fifteen. I remember because I went talked to
the person since it's like such a like it was
(22:50):
just such a hurtful thing, but looked at me, you know,
straight in the face, and was like, why can't I
can't get HIV from sharing this with you? Can? I
just not having a grass of what living with HIV
looks like. One of the first things I learned on
the day that I what was my first long form
doctor's appointment. I said to her, I talked about this
(23:10):
in my book. The doctor, I said, can I still
live to be seventy five? And she laughed to herself
and she was this really fierce Filipino doctor when she
had like a little accent, and she chuckled and she said, honey,
I'll keep you alive long enough to die of a
heart attack or cancer like everybody else. You know, I've
been on medication for like almost ten years, and I've
(23:31):
only gotten more fit, more gorgeous, like work all the time.
Like I mean when she said that all you know,
fifty to seventy five years, I mean that is a
normal life expectancy. Anyway, I was twenty five, fifty seventy
five more years, Honey signed me up. Other than taking
this pill every day and making sure I see my
doctor every three months, I feel amazing. I'm much healthier
now than I was literally when I was HIV negative
(23:54):
careening down the road of like addiction and self destructive behavior.
So it's just made out to be this gigantic deal,
and again I don't I wouldn't recommend it. It was
definitely cuter like not having to go to the doctor
every three months and take a pill every day in
the rigamaro of having to get it. But your life
isn't over. It doesn't make you this different person that
can't do anything. And as long as you have your
(24:16):
pill and your doctor, it's great. You're never better. What
do you think we can do to try to help
people who think they're on the side of ally ship
and the side of like really being in solidarity kind
of recognized that sometimes the posture of the language they're
using still stigmatizing and harmful and probably not the behavior
(24:41):
they want to be engaging in. What do you think
we do about that? Well, I obviously didn't get into
where I am now and get the recovery that I've
gotten because, like alone, I had a lot of support.
I had access through my family to actual capital and
also so shell capital to give me the wherewithal to
(25:02):
understand like how to navigate this very layered, intricate process
of attaining healthcare. I mean even from just like when
the Affordable Care at came out and I signed up
for it for the first time, Like I needed my
mom to help me with that. Like I'm not someone who,
you know, can't figure stuff out. I mean I could
do like ten heads of hair in a day. I'm
like pretty savvy, but like when that came out, just
(25:23):
like figuring out how to do that, like, well, what's
the silver mean, what's a bronzeing? And it is not
going to cover me HIV medication? Is it? Not? Like
will it? And that was after I had a couple
of years of recovery under my belt, and I just
think that you're not going to necessarily get JBN ten
years into their recovery journey. We really need to meet
(25:45):
people where they are and stop this like judgment and
morality idea of like, well, pull yourself up by the bootstrings.
And I just think that there is this knee jerk
reaction for people to say like, well, I can't tell
you how many times I've heard when I've said, you know,
when I and lobbying and working on expanding the HIV
social statya, that people are well, that's all great, but
I didn't go get you HIV. And so people just
(26:07):
don't want to take responsibility for something that they think
doesn't affect them, and then they want to take it
out on people that are already suffering. And I think
that when you look at something like HIV, it is
a result of coordinated neglect. I see such an over
emphasis on how do we keep HIV negative people negative?
(26:30):
But what about the one point two million people living
with HIV? What about the people who have to choose
between housing and their medication? When you tie it to
this idea of morality that it's been so inextricably tied
to I just I almost don't even know what we
need to do. I'm so frustrated and tired because I
(26:52):
thought that, you know, me coming out with my status
was going to be the hardest part, and I think
actually the hardest part has been frankly, how fucking heartly
people still are around what it is to live with
HIV AIDS. Have you had people now tell you that
you're sharing your status helped them share their's. Oh yes,
that gets to me and makes me cry so much.
(27:14):
The overwhelming support or where people will say, like whether
they encourage them to come out with their HIV status,
or someone read my book or encountered my story which
made them rethink a way that they've treated someone with HIV,
or wasn't open to someone or had an experience where
they could have done better. That's also been really special.
And actually this incredible woman she was starting her first
(27:35):
day at her local medical center and she like, she
took a training to take blood and test people and
she works at this lgbt Q clinic and she sent
me this cute picture of herself with her badge and
she was like, I started this training and got into
this because of your book, and I just want to
help people in my community. And I was like, oh god,
it's like the nicest thing, and he was ever said
to me, So there is so much support and there
(27:55):
is so much understanding. I cannot believe how great while
I am and like how my life has changed, and
like it's just so amazing. But then I think there's
just so many people who are still struggling. They just
do not see a way out. And I also think
that for myself another thing that makes me a little disappointed.
I mean, I think before Queer I I was doing good.
(28:18):
I was still you know, it's I still needed assistance.
I needed you know, I needed help, Like my world
wasn't falling apart. You know, I've been doing good for
a few years. But what do you do, Like you
shouldn't have to book a Netflix show and become like
a New York Times bestseller in order to have really
good insurance, Like I couldn't have like afforded to get
a three thousand dollar bottle of medication at the because
(28:40):
I lost one. I just that's where it's like, when
I think about how grateful I am and how much
my life is changing. Yes, I worked really hard, and yes,
like I didn't give up on myself. Nothing was really
given super easily. But there are people that have way
less than me and had nothing given to them in
terms of social capital or like the help that I
did have for my family. What are they supposed to
(29:02):
do because I did this with a lot of help.
What do you do when you just don't have any help?
I feel like any like patients training, because it's also
like unwinding people's negative held beliefs and stigmas, like people's
internalized stigmas. Yeah, because I mean people just have such
strong internalized homophobia around this. People who lived through this
(29:26):
pandemic in the early onsets of it. You know, we
think about how scary the last year was with the
onset of coronavirus and the end of twenty nineteen, but
like that was the case with HIV two, there was
a lot of fear. The people that were heterosexual sis
gender people in the and their twenties and their thirties
and their forties were just baked in this world where
(29:48):
people could be contracting an illness and dead in their twenties, teens, thirties,
dead families disowning them, don't ever come home dead. When
I was an eight grade and I told my dad
I was gay, he said, don't come home with AIDS.
And that's not my dad being a bad person. That's
what was on the news. We've all been front row
(30:11):
to this horrific pain and suffering that had homophobia all
ingrained in it, it had structural racism all ingrained in it.
And people still haven't really definitively taken the steps. So
it's like for me when I hear the casual ignorance
and the casual homophobia, I just go like from zero
to fifty. It's so hard because this is my lived
(30:34):
experience and I have fought against this, and people are
still fighting against this, And so when you have elected
leaders that are you know, the Margie Taylor Greens of
the world, and then their constituents really believe this like
highly radicalized religious propaganda rhetoric around like you know, things
such as HIV, AIDS and abortion and your healthcare stuff.
(30:57):
It really makes me lose my patience because there's such
a disregard for humanity and for for people and just
so much judgment. Like I don't know how to get
through that. And you know, we talk about like unity,
and we talk like how do we get forward and
what do we do? It's like we have to reach
people where they're at. It feels like it's a it's
a really difficult impast There is hope, there are good
(31:17):
people doing good things. But then I don't know, I
feel really stuck in some ways about it. The burden
shouldn't be on you to justify your humanity. I think
that's horrific framing that we too often have in our
discourse and conversations where kind of people get other eyes
and then somehow have to prove commonality and humanity and
(31:38):
like assertain dignity instead of it just being accorded to you,
because like that's the right place to begin. And I
hear you on the not finding unity with the people
who don't recognize our humanity, because I don't think you
can compromise with bigotry. There's no compromise with people who
(32:00):
don't think that you should have agency or freedom or
life or health because of who you are or what
your HIV status is. So I'm not going to argue
that point, but I am going to thank you for
your time today. Well, thank you for your time, Chelsea Clinton,
I can't ve got to meet you. What's so much?
(32:23):
Jonathan's memoir is titled Over the Top, A Raw Journey
to Self Love, and you can hear him on his
podcast Getting Curious with Jonathan van Ness and follow him
at j b N. We're taking a quick break, stay
with us. Over the last several decades, public perception of
(32:52):
who was affected by HIV and AIDS has played a
very real role in shaping the response, or lack thereof,
to the virus. From Ryan White, a child from Indiana
who was diagnosed with AIDS in the early nineteen eighties,
to fictional portrayals of people living with HIV and AIDS,
often white gay men in the nineteen nineties, It matters
whose story is told. The reality of HIV AIDS in
(33:13):
the US today is too often an untold story, and
that's what our next guest, someone who works directly with
communities and patients affected by HIV AIDS, is here to
talk about. Black Americans are disproportionately overrepresented in new HIV
diagnoses and among people living with HIV and AIDS. According
to the CDC, in black Americans accounted for forty two
(33:34):
percent of new HIV diagnoses. Even though Black Americans make
up only thirteen percent of our population, it is indisputable
the Black Americans face racism and public health and our
medical system. HIV is only one example of this. The
COVID nineteen vaccine rollout has been another someone working hard
to address these inequities, as Dr Only black Stock. Dr
black Stock is a primary care and HIV physician and
(33:57):
activist here in New York City. She's also the founder
and a executive director of Health Justice, an organization that
works to center anti racism and equity and healthcare practice.
Dr black Stock, thank you so much for joining us.
Thank you so much for having me. It's a pleasure
to be on Well. I know that you have quite
a few family ties to medicine. I wonder if you
(34:18):
could share why you became a doctor and also why
you decided to focus your work on HIV AIDS. You know,
my mother was born to a single mother. My mom really,
you know, struggled a lot. She talked often of like
having to put cardboard in the bottom of her shoes.
My mother's mother really emphasized the importance of education, and
(34:39):
my mom ended up going to Brooklyn College, where she
had a professor who really took an interest in black
and brown students and mentored them and encouraged them to
pursue medicine as a career. She ended up coming back
to New York City to do her residency at Harlem Hospital,
which you know has really a legacy of training like
(34:59):
gender rations of black doctors, and then spent the bulk
of her career in Central Brooklyn. Of a twin sister
who is also a physician, her name was Uch. You know,
we accompanied our mom to like many community healthfares, and
we saw the ways in which she married service and
advocacy with medicine, and so honestly didn't really consider anything else.
(35:21):
And while I was a medical student, ended up going
to Ghana and doing work at a clinic called the
Fever's Unit, which was his HIV clinic literally located outside
of the hospital campus, like literally marginalized in the way
that people who went to the clinic were marginalized. So I,
you know, I studied how people in this part of
(35:42):
Ghana we're doing with their experience and taking their medication,
what were their challenges and so you know, when I
came back from that experience, I actually did a rotation
with the George Stars Open Society where I rotated a
number of HIV clinics throughout New York City, in Harlem
and East New York and Washington High and basically just
realized that there's a lot going on. And I was
(36:03):
in other countries that are less resourced, but there was
a lot of work to be done here. In my
residency at Montifier Medical Center in the Bronx, I saw
patients with the same advanced AIDS opportunistic infections that I
saw when I wasn't gone in South Africa, and I said,
you know what, that compelled me to really focus on
the work that needs to be done here. I think
it can be very romantic and sexy to go to
(36:25):
other countries and try to do work and help people,
but I realized that the crisis here also merited my
attention as well. What from your perspective as a practitioner
has changed in the last thirty five years. You know,
HIV is one of those conditions that has like a
forty year lifespans, as you mentioned, and so much has
(36:48):
happened in those four decades. I think, probably most prominently
with respect to treatment, how treatment has become like much
more simplified. You know, we have once a day pills
that people can take that are very powerful, whereas back
in the beginning of the pandemic people took multiple pills
multiple times a day. So that has helped to streamline
things and I think helped to improve, for instance, adherents.
(37:11):
We also have another powerful tool in pre exposure profil
axis or PREP, which is the once a day daily
pill to prevent HIV infection. But even with those technological developments,
we still have really stark inequities and who is impacted
by HIV. And I think, at least for me, I
see HIV not just as a medical condition, but as
(37:33):
a social condition. It's really the lens through which I
can see all of these different systems of oppression, racism, sexism, transfombia, homophobia,
all really interacting. I don't think I can't think of
another condition that has such gross race ethnic disparity. So
when you look at, for instance, here in New York City,
when we look at new HIV diagnoses, we look at
(37:55):
diagnoses among women for instance, that includes cis gender and
transgender women. About nine of new diagnoses are among black
and Latino women, and then about are among black and
Latino men, and most of the men diagnosed with HIV
are men who have sex with men. So we just
see like the intersection of all these systems and the
ways in which they place people you know, at risk
(38:16):
for HIV. So I think that over these last few decades,
like there's been a greater understanding of intersectionality of the
way these systems play a role, and that there isn't
a one size fits all approach to addressing the HIV epidemic.
It's not just about popping a pill, whether it's HIV
treatment or prep. We need to address issues around the housing,
(38:36):
around you know, employment, food, insecurity, all of that. All
of those social determinants of health impact HIV risk. Another
I think real claustrophobic challenge here is the premnitious effects
of stigma. When I was listening to Peter Staley, I
thought like, wow, like, very similar, doctor Black actor, what
(38:57):
you're talking about. We've made so much proger us and
yet we still have so much work to do on
both the social vulnerabilities and social determinants that we know
are intimately connected to someone's health, but also this miasma
of stigma that still just seems so pervasive. Can you
can you talk about how you kind of see stigma
(39:21):
in your patient care and also if you've seen ways
to really push back against stigma that have worked. Stigma
around HIV specifically, I think it's somewhat unique. I think
if there's any medical condition that is associated what's such
tremendous sort of internalized shame as as well as anticipated
(39:41):
and enacted stigma, it's it's probably HIV. And I think
that has to do with who is most impacted by HIV.
You know the fact that men who have sex with
men are most impacted, transgender women, people who inject drugs,
and so those behaviors have been stigmatized by society and
thus HIV sort of like been pulled in to that um.
(40:01):
You know, it comes up, for instance, like I have
so in some of my patients who have not disclosed
or shared with any friends or family members their status
that they are HIV positive, and we know that just
holding in that information has impacts on people's health. You know,
it affects people's emotional well being, but it also impacts
their ability to take their medication every day and come
(40:23):
to appointments. It's really critical that we work to obviously
destigmatize HIV. And just to say that, when I was
I was Assistant Commissioner at the New York City Health
Department up until this past July, and in that role,
I led the Bureau of HIV and the city's response
to the HIV epidemic, and we launched a campaign called
Made Equal, which is about promoting the message of undetectable
(40:45):
equals untransmittable, which basically means, as I alluded to before,
if someone is HIV positive, if they're taking their medications,
if they're able to suppress that level of virus, not
only does that have impact on their own health, but
it prevents HIV from being passed on to any of
their sex partners. And so it was really important for
us to do that campaign because, you know, we wanted
(41:08):
people living with HIV, who have often been portrayed as
you know, disease vectors and have a lot of internalized stigma,
to know that there aren't disease vectors that they can
have you know, healthy, fulfilling relationships. And we also wanted
people in the public to know that people with HIV
who are on medication, who are suppressed, are very safe
sex partners, at least with respect to HIV. So really
(41:30):
spreading that message has helped, and I think also just
destigmatizing some of the behaviors associated with HIV. Right, So,
when we think about sexuality and how how it's important to,
at least as a health department when I was at
New York City Health Department, to be really sex positive
and non judgmental, because there are such great deal stigma
associated with just sex and we know that sexual health
(41:50):
is such an important part of overall health and well being.
I know that you've worked on all of these related
issues from your public service and the Department of Health
here in New York City, through your practice and also
through your organization, Health Justice. Did you talk a little
bit about its work and its goals? Sure? So my organization,
(42:11):
it's Health Equity Consulting Practice, and it's really focused on
centering anti racism and equity in the workplace and also
helping organizations, both public health and healthcare to reduce health
inequities in the communities that they serve. And a lot
of my work at the Health Department, you know, revolved
around advancing racial equity, gender equity, lgbt Q equity, and
(42:33):
I got just really inspired to do that work at
the health department on a citywide level, and decided that
my next step would be really focusing my career on
helping to advance equity in public health and healthcare organizations.
I think we've seen the impact of the pandemic in
terms of really revealing a lot of existing inequities and
(42:54):
also emerging inequities with respect to COVID. So there's a
lot of work that needs to be done, and I'm
really interested in engaging with organizations that are ready to
do that work. Dr Blacks, I do, though, I just
want to ask you what it has been like over
the last year, you know, as a h V medicine
practitioner caring for your patients during the COVID pandemic. How
has it been different for you as a healthcare provider
(43:16):
and how has your patients experience been different. What's been
interesting is, you know, healthcare providers are learning along with
the public about the novel coronavirus. So I have to say,
at the beginning of the pandemic, myself and my colleagues, we,
you know, we're very concerned about our safety and having
obviously adequate ppe for my patients, especially those who are
(43:36):
older who lived through the early days of the AIDS epidemic.
This has been for many very traumatizing experience. Many sort
of remember the fear and vulnerability that they felt at
that time, and many have drawn parallels to this current experience.
I think in the way that the pandemic has just
proportionally impacted marginalized communities, in the way that the government
(44:00):
response initially was inadequate and delayed. You know, They're just
so many parallels that people see. And I think also
the isolation. Many people living with HIV, especially people who
are older, experience a great deal of social isolation, in
part because so many of their loved ones have passed
away from HIV and they're kind of like the long
(44:21):
term survivors, and so this pandemic I think has sort
of heightened that sense of being alone having lost all
these other people. So for for me, my role has
really been to try to support to the extent that
I can my patients, providing emotional support, referrals to know
mental health providers, behavioral health providers. But this has been challenging.
I provide care in Central Harlem, you know, which has
(44:43):
a very high poverty rate by patients have really been
directly impacted by this pandemic and have tried to also
continue to take care of themselves at the same time.
Clearly this work is still vitally important today. How does
that work continue in COVID nineteen in we can't gather
and shared communal space. How has that sense of shared
(45:05):
community and continue trust able to persist while we're separate
and a part at least in a physical sense. It's
been very challenging. I think it's challenging for obviously people
living with HIV and those who may be at risk
to you know, figure out how they can engage and care.
The availability of appointments and other services are much more limited.
(45:26):
Now we've seen the ways in which we've kind of
had to be nimble. For instance, at the beginning of
the pandemic, you know, a lot of organizations stopped doing
community outreach work for fair obviously of exposing their employees.
When that happened, you know, HIV testing, for instance, became
a lot less available, and so what we ended up
doing when I was at the New York City Health
(45:46):
Department last year, we actually ended up creating a home
HIV test program where the community based organizations are partners
that we work with, we're able to give a home
HIV test sent to them, So I think it's really
these are new times, So it's really about innovating and
figuring out how we can leverage partnerships with community based
(46:06):
organizations and how they can also learn best practices from
one another so that we can continue to ensure we've
made a lot of progress towards any of the epidemic
that we don't reverse the progress that's been made so far.
You just spoke about the rise of at home testing,
I mean not only for COVID nineteen, but also for
at home HIV testing and other STI testing. As we
(46:30):
continue to hopefully move through and eventually move forward from
COVID nineteen. What shifts have happened do you hope stay?
What do you think still radically needs to change? From
a public health perspective, people are probably very familiar with this,
but just the increasing use of telehealth for instance, like
I don't know why before the pandemic you weren't leveraging
(46:51):
it and using it, But the pandemic obviously has accelerated telehealth,
and I think for many individuals who have access to
a telephone or um, you know, a smartphone or a
computer like this is incredibly has been super helpful and
has made things a lot easier both for patients as
well as for providers. But then again, obviously the challenges
(47:13):
that we know, there's a digital divide, there are you know,
inequities in terms of digital access, digital literacy. So that's
not the solution for everything, but I think it's a
positive step forward. What do you think, not just from
a kind of an HIV practitioner's perspective, you needs to
happen at the national level, like what do you want
to see at this new CDC leadership and and what
(47:35):
thoughts might you have from a global level too? Yeah, No,
it's it's super exciting. Seeing the CDC promote evidence based
public health interventions is incredibly important, and so I think
the work that they have done thus far has been really,
I think, really important in terms of gaining the confidence
of the public. I think what we've seen happen also
(47:57):
is I guess early on in the pandemic right the
sideline of the CDC, but really having President Biden and
his administration leverage and utilize the expertise that's there from
a global health perspective, just thinking about COVID nineteen, you know,
just ensuring that we understand the ways in which we
are interconnected. But we need to understand that many people
(48:19):
in low income and middle income countries have not seen
a vaccine rollout yet and are going to be neglected
or left at the sidelines as some of more wealthier
countries are rolling out with the vaccine. But the reality
is that we know COVID nineteen and the virus no
no boundaries, no no boarders, and so we need to
make sure that not just because we fear that we
could also be infective, but just out of humanity that
(48:42):
we want to make sure that everyone's taken care of.
So I think I would love to see that, and
I think I've seen the Biden administration. I read something
recently about an investment in like a Global of fund
to ensure access to the vaccine for lower income countries.
But I think that needs to also be a priority
for US. It has been surprising to me how many
people seem to think HIV AIDS was like twentieth century right, like, oh,
(49:06):
that's such old news. It was terrible, but it's not
really an issue. What more do you think those of
us who care about public health and you care about
health equity can do to try to ensure that more
people understand that HIV AIDS very much remains a public
health issue that very much kind of HIV positive people
(49:27):
deserve to be listened to, and we collectively deserve a
real response to both protect people in the future and
continuing to treat people today. You know, I think that obviously,
with this pandemic, a lot of the attention that had
previously been on HIV obviously has gone away. But I
think we need to understand the ways in which many
(49:49):
of the same structural drivers and social determinants health that
have placed communities at risk for COVID nineteen are some
of the very similar systems that have created these in
equities in terms of HIV and allow the HIV epidemic
to persist and to continue. I think we need to
understand the ways in which policy level, for instance, medicaid expansion,
(50:11):
how something like that is one way of actually helping
people living with HIV. You know, for instance, the South
has become the new epicenter for HIV in the United States,
and there are seven states in the South that have
not expanded Medicaid, but we know that Medicaid is one
of the main providers of healthcare to people living with HIV.
So to the extent possible people who care about public
(50:32):
health care about people living with HIV, that we realize
how these policy level issues can either reverse or perpetuate
the epidemic and really advocate to the extent that they
can on local, state, or federal level. What do you
think we need to help people understand that our history
is still very present with us, especially in public health.
(50:54):
I do think that because there's been aghastly this sort
of awakening that many people have had about an equity
ease and the drivers of health inequities, now is a
time where we need to really begin to really start
taking action. And I know at the New York City
Health Department, our former Health Commissioner Mary Bassett actually launched
initiative called Race to Justice, which was really about bringing
(51:14):
discussions of racism to the foreign really understanding how racism
impacts health outcomes and how we need to change the
way that we do our work at the Health Department.
So I think sort of broad initiatives like that can
be helpful. And then obviously in education, in schools wherever possible,
this communicate this information around structural drivers inequities can really
(51:37):
be shared in a way that is understandable by folks,
in a way that actually motivates them to want to
have changed. Is understandable in the sense of hopefully then
not only motivates them, Dr black Stock, but where they
feel responsible and where we feel responsible. Definitely, I think,
I think if we're not working to dismantle these systems,
(51:58):
we are complicit in them. Folks need to also understand
the ways in which they are responsible for enacting change.
Dr black Stock, thank you so much for your time today.
I'm incredibly grateful. You're very welcome. Thank you so much
for having me on. You can learn more about Dr
black stocks work and the organization she created, Health Justice
(52:18):
at Health Justice dot c O or follow her at
One black Stock. So much of the history of the
HIV AIDS crisis has been characterized by indifference, ignorance, and stigma.
We've lost millions of people around the world who would
be alive today if different decisions had been made at
different junctures, including by our own government. And yet, as
(52:40):
we heard from our guests today, when activists bravely set
out to change the public perception of the virus. They did,
though the work isn't done. We have so much more
to do to expand access to good HIV AIDS care
and build truly more equitable public health and health care systems.
Doing that will require more resources across science and medicine,
alongside political will. There's a saying in public health that
(53:02):
outbreaks are inevitable, but epidemics aren't. We are not passive
to germs, and I certainly hope that we can learn
from our mistakes and our successes in confronting HIV and
AIDS to help improve our ongoing response to COVID nineteen.
Stigma is deadly, racism is deadly, and equity is deadly.
(53:22):
But we can confront them and do better. As we've
heard from all of our guests today, they have done
that and so much more. I hope that you will
follow them, learn more about their work, and support them.
Thank you for joining in Fact. In Fact is brought
to you by I Heart Radio. We're produced by Erica Goodmanson,
(53:45):
Lauren Peterson, Kathy Russo, Julie Suprian, and Justin Wright, with
help from the Hidden Light team of Barry Lurry, Sarah Horowitz,
Nikki Huggett, Emily Young, and hum Abite, with additional support
from Lindsay Hoffman. Original music is by Justin Wright. If
you liked this episode of In Fact, please make sure
to subscribe so you never miss an episode, and tell
(54:06):
your family and friends to do the same. If you
really want to help us out, leave us a review
on Apple Podcasts. Thanks again for listening, and see you
next week.
Hi, I'm Chelsea Clinton, and this is the very first
episode of my new podcast. In fact, in the midst
of COVID nineteen, more people than ever before are paying
attention to public health. But COVID nineteen isn't the only
public health issue that we're facing currently. Now before you say, oh,
I'm just sick of thinking about this. As someone who's
studied and works on these issues, they impact us all
(00:23):
and talking about them doesn't have to feel like health class.
So in this podcast, I'm talking to you and learning
from smart people, advocates, patients, experts, and more about other
public health issues, from climate change to reproductive rights to
HIV AIDS. Understand those crises, what we're doing about them,
and what they can teach us about COVID nineteen and
our response or lack there up at times. Today we're
(00:46):
talking about one of the very first public health issues
that ever captured my attention back when I was a
kid in lettar Rock, Arkansas, the HIV AIDS epidemic. When
HIV was first identified in the early nineteen eighties, it
was a public health crisis, mired and urgent scientific questions.
How was it transmitted, what were the short and long
term symptoms, could it be treated. And then there was
(01:07):
also stigma and bigotry, which claustrophobic and deadly homophobia, racism,
and shame around sex, to name only a few examples,
combined with a woefully inadequate response from our government, made
the epidemic even more deadly. Today, we know how to
help prevent new HIV infections, and we have medicines to
(01:28):
render aids of chronic disease and make HIV itself untransmittable. Still,
thousands of Americans acquire HIV every year, Millions of people
around the world don't have access to treatment, and stigma
remains dangerous, even deadly, across our country and around the globe.
That's part of what we'll be talking about today. We'll
hear from Queer Eyes Jonathan van Ness, who has been
(01:49):
a vocal advocate for people living with HIV AIDS since
publicly sharing his own HIV positive status in twenty nineteen,
and won't listen to dr Ony Blackstock, and HIV physician
and health equity advocate working here in New York City
talk about her experiences on the front line. But first
we'll hear from someone who got his start as an
activist and member of the group act UP back in
(02:11):
the nineteen eighties, Peter Staley. More than thirty years ago,
Peter and other LGBTQ activists demanded a response from our
government on AIDS, and they refused to be silenced, even
when confronted with disdain, disinterests, and arrests. Their rallying cry
with silence equals death. Peter and act ups work help
(02:32):
move attention, research, dollars, and urgency, and certainly help save lives.
In the decades since, he has continued his activism, working
to fight stigma, help people get the education and care
they deserve, and push for broader awareness of what still
needs to be done. Peter, thank you so much for
your time today. It's great to be with you, Chelsea,
(02:55):
and especially to talk about public health and all the
craziness we're going through right out and ways to make
a difference. And so, Peter, I really did first become
public health aware. Arguably I first became kind of citizen
aware reading about HIV and AIDS in my local newspapers
in Arkansas and then watching Magic Johnson courageously talk about
(03:18):
his HIV status as a middle school kid in Little Rock.
Could you just take us a little bit back to
those early days and what it was like, what the
barriers you really faced were, and why you had to
fight so hard to draw attention and resources to the
AIDS crisis. Well, I was a closeted bond trader on
Wall Street when the first cases of HIV AIDS were
(03:41):
reported in the summer, and like many I didn't know
what was going on and noticed right away that the
response that was occurring by politicians, etcetera was very wrapped
up in the homophobia I sent that was systemic in
America from my first sense of my own gayness in
(04:06):
my teens, and so I not only was actively suppressing
and hiding a big part of myself, I kind of
did everything I could suppress and ignore the early years
of the AIDS crisis until I myself got diagnosed in
but as we recall, in that year, there was no
(04:26):
way of ignoring it. The country finally woke up in
an actually very frightening and terrible way because Rock Hudson
was diagnosed and later died that fall, and the nation
went into this panic very much like a Bola, where
there was just extraordinary levels of stigma. Parents were pulling
their children out of schools if there were rumors of
(04:47):
another child having HIV, and the homophobia was only getting worse.
I mean, the backlash against US was getting extraordinarily frightening,
making our community kind of dumble out of the Gate
is to, you know, how do we respond to this
in this environment without a violent response being met against us?
(05:09):
And so it took the Gate community a long time
to respond to this. But we had an administration that
wanted nothing to do with this crisis, well, Peter, an
administration that also didn't even name the crisis. Reagan didn't
say the word AIDS until five, I think only because
he was asked by a member of the press, and
then he didn't actually speak to it formally until seven,
(05:32):
that is six years into an epidemic, just totally ignoring Well, Peter.
We have lived through though administration under Trump that certainly
did tell us repeatedly it was going to disappear to
kind of wilfully trying to hasten its end. And it
was very triggering watching COVID rollout in January and February
(05:54):
and the US the similarities to those early AIDS years
where you had two presidents both very anti science both
coming into office with a core constituency of the religious right.
In Reagan's situation, it was the moral majority. And because
of that, just not listening to the scientists, beginning to
(06:18):
take anti science political postures about the epidemic, and missing
the opportunity very early on to nip the new epidemic
in the bud. And the sad fact of this is
when epidemics hit anywhere in the world, of what a
leader needs to do has to happen in the first weeks, months,
(06:39):
definitely first year, even with a slow moving virus like HIV,
and if you miss that window, you allow an epidemic
to occur. If you do what Taiwan did and a
few other places of jumping right in right at the beginning,
you can stop it in its tracks and save yourself
all pain down the law. And all we witnessed in
(07:02):
January and February was a dismissiveness of the responsibility to
do that, and we watched the virus just flood America
because of that dismissive. I think what you have seen
is basically one of our two major parties begin during
the early eighties a long process of abanding basic facts
(07:25):
that both parties used to always accept and then debate
and take different sides on but those basic facts got
confronted and eventually abandoned by one of our major parties.
It's rejecting facts all over the place. Alongside the rejection
of facts, one of those anti democratic means and mechanisms
(07:47):
really is stigma. And certainly we saw how deadly stigma
very much was in the nineteen eighties and I think
arguably still true today as it relates to HIV. AIDS
were also ing. I think the real challenge of what
stigma is and means during COVID, how do we not
(08:08):
demonize people who are making not great choices around mask
wearing or social distancing is one example, while still trying
to persuade them to wear masks and social distance. Can
you just talk about reflect on how you both worked
against stigma but also tried to help people understand there
(08:28):
really is a difference between good and not good choices. Yeah,
it's a challenge. I mean, h stigma has probably been
the most persistent and severe disease related stigma that the
world has ever seen. It's been very hard to fight,
very depressing. I have been bullied in the last decade.
(08:50):
I guess at how we're making a little bit of
progress against aid stigma in the US and around the world,
mostly because of the big scientific victories we've had and
really driving home those tools and coupling it with the
message that stigma doesn't fit into this picture anymore. We're
(09:12):
slowly whittling away at it with science and a clear
public health message that you just delivered day after day
after day. We have the potential to do the same
with COVID by having from the very top, from the
president on down through all the public health officials staying
on the exact same message and just sticking with it
(09:35):
hour after hour, day after day. This is what works.
This is how we do this together. If we do that,
then we can let go of some of our less
helpful tools, which is finger wagging and people screaming at
each other. We know from decades of social science that
(09:56):
the social shaming side of public health is the least effective.
Doesn't work. It doesn't work. Part of your real early
work and Act Up New York's earlier work and so
many others, was both to hold the government accountable for
what they weren't doing and also to start to shift
(10:16):
public opinion that your lives how to value Can you
just talk about how you work to both hold the
government accountable and shift public opinion. It was a very
frightening job in front of act UP when we burst
on the scene. In the backlash against the queer community
(10:38):
in the US had only gotten worse because of AIDS.
And that's when act UP came on the scene and
we realized we weren't going to be able to get
anything out of the US government unless we changed hearts
and minds in America. How are we going to do that?
The way we did it was risking it all. We
decided to put our bodies on the line to make
(10:59):
ourselves was the number one target of attention in America.
They had never seen the queer community protest on Mass
week after week after week. Stonewall wasn't televised, it got
very little pressed. Nobody heard about it at the time,
and by the hundreds we got arrested and it was
(11:20):
the lead story on all three networks, and we became
at that moment America's movement to jour We were like
the Black Lives Matter or occupy of our time, and
we shattered the American myth of the homosexual as being
weak and timid and afraid and cowering in a corner.
(11:41):
What they saw instead was passion and determination, and they
saw community. The press wrapped our activism and used it
as b role for stories about all the groups we
had formed to take care of our dead and dying,
and told the American people that the reason we had
(12:02):
to do that was because the government had totally ignored it.
And within months, the American public, they may not have
loved the gay community that you know, it wasn't gonna happen,
that fast acceptance wasn't gonna happen overnight. But they felt
deep shame when they realized finally that they were letting
(12:22):
thousands of their own citizens die and just letting it
happen because they didn't care. And that guilt trip changed everything.
Holing almost overnight showed that eighty percent of Americans wanted
Reagan and then Bush to spend more on AIDS research.
You can't get of Americans to agree on anything. That
(12:44):
was that shift. And you also saw the gallop pole
the level of Americans who thought gays should be thrown
in jail. That number collapsed between two data points between
eighty eight and eighty nine and just don't see pole
shifts like that anymore. And within two years of that,
(13:05):
Congress was appropriating and Reagan and Bush were approving hundreds
of millions of dollars of increases in the AIDS research budget.
It reached one billion dollars a year. By and other
disease groups for complaining about a powerful AIDS lobby. And
then we got your father coming into office who fully
leveraged all those dollars and put them to work during
(13:26):
the nineties, aggressively spending that on research in the most
effective ways, to the point where by the end of
his first term we had this amazing breakthrough. And there's
the reason I'm on your show today, the reason all
of us are alive because of those tax dollars that
we loosened up. So that's how you do it. You've
(13:46):
been in this work for thirty five plus years. What
keeps you going? How do you keep going? Yeah? You know,
I got into Act up right after its first demonstration
because I had been died, knowest a year and a
half earlier, and I came to it with such selfish reason,
you know, very human. I just wanted I wanted to
(14:07):
see if I could save myself by myself a little time,
add a few months to my lifespan. But within six
months of being in that room on the first floor
of the Lesbian Gay Community Center West thirteenth Street in
New York City, with hundreds of other activists fighting for
their lives and the lives of their friends, I got
(14:29):
bitten by another bug. And that was this beautiful movement
empathy of fighting for the greater good, fighting for something
more than yourself. And I got to witness all that.
I got to witness actually victories and witness lives being
saved as a result of activism. Once you once you
(14:51):
feel that feeling, once you're part of that, being part
of a community that gets a kind of high out
of changing the world for the better, there's no turning back.
And it's wonderful to see today's younger generations because they,
you know, something got ingrained at them where they've got
the empathy right up front. It's their innate empathy and
(15:13):
their frustration with the world's problems that give me hope
that we can solve them. Because everybody's adding a little
activism into their lives now and realizing that they feel
better when they're able to help others and do work
that serves a greater good. Peter Staley, thank you so
much for your time today. Thank you, Chelsea. You can
(15:35):
keep up with Peter on Twitter. He's at Peter Staley.
We're taking a quick break, stay with us. A lot
has changed since Peter first got to start as an activist.
Today we know more about prevention and treatment is more
(15:57):
readily available to more people, including and retroviral therapy or
a r T, which keeps viral load an undetectable level
and makes the virus untransmittable. But we still have so
much more to do, including on fighting stigma, myths, and misinformation.
That's why I'm so thankful today's next guest. He's one
of the one point to million people in the US
(16:17):
living with HIV AIDS, and he has done so much
to shatter stigma, educate people about HIV and AIDS, and
honestly and joyfully tell his own story. I'm talking about
the one and the only Jonathan van Ness. Jonathan has
famously helped people to be their own best selves on
Netflix Queer Eye. He has his own podcast, which is
one of the best titles around, Getting Curious with Jonathan
(16:40):
van Ness, and he shared his story, including his HIV diagnosis,
in his autobiography, which is called Over the Top, A
Raw Journey to Self Love. Jonathan, thank you so much
for talking with me today. I've been really excited about
this conversation. Well, thanks so much for me, and you know,
(17:01):
wherever our conversation goes, I'm here for it. But I
just would be remissed if I did not mention at
the top. Big fan, love your dad, love your mom.
I'm really excited to meet you. I've been like obsessed
with you and your Harrison's the literally your curls have
always been giving me life and I just can't believe
that we're getting to like chat right now. And yeah,
(17:21):
so I love you to pieces. I'm so excited that
I'm like, my smile is like bursting off of my face,
well my my hair, like as many stories in and
of itself. But that's a different conversation. So I'm a
few years older than you, but we both grew up
like in the eighties and the nineties, and I remember
learning about hi V like as a kid in Arkansas,
(17:43):
and then I really remember when Magic Johnson so courageously
and heroically spoke about being HIV positive. Do you have
moments like I had when I was a kid watching
Magic Johnson that really stood out to you as people
who were living with this disease and in their own
way helping to stand up against the stigma of the disease. Yeah.
(18:06):
I remember very clearly the first time I ever heard
about it, and it was my oldest brother telling us
at the dinner table what he had learned about at school.
There's this thing and it's called HIV AIDS and it
kills men who have sex with men. That's what your
brother was learning in school. Yeah, men who have sex
(18:27):
with men and drug users. And so you know when
I heard that, I was like, oh God, Like I mean,
I think it was just a time where I was like,
could I be gay? What is gay? Am I different
than everyone else? So I think from a very early
age it was like, it's going to kill me. And
you know, as I got a little bit older, that
only became more solidified. And I think, you know one
(18:48):
thing that unfortunately happened in the nineties, and I think
for me another time when you know my Magic Johnson moment.
Obviously this may surprise you, but I'm not the biggest
basketball fan. While every one was talking about the Dream
Team in Barcelona, I was talking about Shannon Miller and
how she should have won the fucking gold but you know,
she got second, in a very close second. But that
(19:09):
was also the first time in the United States gymnastics
team I want a team medal was a gorgeous bronze
in Barcelona. Was very epic, and so that's what I
was glued too. In ninety two and then nineteen nineties six,
Rudy Galindo won the United States Men's figure skating competition
and he was living with HIV and he talked about that,
I remember in this like segment that year, and he
(19:32):
it was just very ahead of his time for someone
to you know, be an athlete who was winning nationals,
and at least for me, I mean, because it was
new to me. I you know, again, I didn't really
watch basketball, so it was like magic what it was
Rudy Glindo for me in nine and he was just incredible.
And I think that was, you know, again, years before
(19:53):
I was understanding what my sexual orientation meant. And I
do think that unfortunately, in the nineties you had this
like incredibly homophobic time, and there was just such a
pervasive idea that this was God's punishment, this was people
bringing in upon themselves, just a very heartless response. And
(20:14):
I think one thing that has been disappointing for me
is is that realizing how much ignorance and stigma there
still is, and how comfortable folks are to still share
that with me other people. There's just still a pervasive,
mean spirited ignorance that exists around HIV. And also, not
(20:35):
that you asked, I'm to say it. One thing that
I've noticed through this coronavirus epidemic is I get curious
about like, there were laws that were criminalizing potential spread
of HIV not long after the discovery of HIV. It
was less than a decade ago when the Obama administration
finally removed the prohibition of HIV positive people from entering
(20:58):
the United States if you weren't an American citizen, right,
which is a mind boggling I think data point, Well,
here's something that's mind boggling. I think that has given
me a lot of trauma. It's something that I think
about a lot. The day that I found out I
was positive in the state of Missouri, I had to
sign a piece of paper that said that I was
a bio terrorist if I ever knowingly spread the disease.
(21:22):
And there are laws on the books all over this
country that could be horribly used against someone who that's
living with HIV, despite if they disclosed. No one should
be out knowingly spreading HIV. That would be like a
horrible thing to do. But what we know about medication
and anti retroviral therapy that when someone who's living with
HIV achieves and maintains an undetectable viral load, you are
(21:46):
not passing your virus transisible. You're undetectable equals untransmittable. So
these draconian laws that are on all these state books
that and oftentimes are in you know, conservative constrolled legislatures
where homophobia and transphobia and racism are so rampant and
so commonplace, there's just no explanation and understanding. And I've
(22:06):
heard people say just such horrifically uneducated things. One of
my really close family friends once said to me, you know,
this is in California legal marijuana. And this family friend
like was, oh, I got my stomach hurts like my stomach,
And I was like, girl, take ahead of this joint, like,
you'll feel so much better to like calm your stomach
right down. You can go get yourself a little biscuit,
(22:28):
a little treat. Afterwards, you'll feel amazing and without skipping
a beat. This family friend, this person who I had
known my entire life before HIV. After HIV, crying on shoulders,
you know, learning to live with this disease, going through
all the things I had to go through. And this
was in fifteen. I remember because I went talked to
the person since it's like such a like it was
(22:50):
just such a hurtful thing, but looked at me, you know,
straight in the face, and was like, why can't I
can't get HIV from sharing this with you? Can? I
just not having a grass of what living with HIV
looks like. One of the first things I learned on
the day that I what was my first long form
doctor's appointment. I said to her, I talked about this
(23:10):
in my book. The doctor, I said, can I still
live to be seventy five? And she laughed to herself
and she was this really fierce Filipino doctor when she
had like a little accent, and she chuckled and she said, honey,
I'll keep you alive long enough to die of a
heart attack or cancer like everybody else. You know, I've
been on medication for like almost ten years, and I've
(23:31):
only gotten more fit, more gorgeous, like work all the time.
Like I mean when she said that all you know,
fifty to seventy five years, I mean that is a
normal life expectancy. Anyway, I was twenty five, fifty seventy
five more years, Honey signed me up. Other than taking
this pill every day and making sure I see my
doctor every three months, I feel amazing. I'm much healthier
now than I was literally when I was HIV negative
(23:54):
careening down the road of like addiction and self destructive behavior.
So it's just made out to be this gigantic deal,
and again I don't I wouldn't recommend it. It was
definitely cuter like not having to go to the doctor
every three months and take a pill every day in
the rigamaro of having to get it. But your life
isn't over. It doesn't make you this different person that
can't do anything. And as long as you have your
(24:16):
pill and your doctor, it's great. You're never better. What
do you think we can do to try to help
people who think they're on the side of ally ship
and the side of like really being in solidarity kind
of recognized that sometimes the posture of the language they're
using still stigmatizing and harmful and probably not the behavior
(24:41):
they want to be engaging in. What do you think
we do about that? Well, I obviously didn't get into
where I am now and get the recovery that I've
gotten because, like alone, I had a lot of support.
I had access through my family to actual capital and
also so shell capital to give me the wherewithal to
(25:02):
understand like how to navigate this very layered, intricate process
of attaining healthcare. I mean even from just like when
the Affordable Care at came out and I signed up
for it for the first time, Like I needed my
mom to help me with that. Like I'm not someone who,
you know, can't figure stuff out. I mean I could
do like ten heads of hair in a day. I'm
like pretty savvy, but like when that came out, just
(25:23):
like figuring out how to do that, like, well, what's
the silver mean, what's a bronzeing? And it is not
going to cover me HIV medication? Is it? Not? Like
will it? And that was after I had a couple
of years of recovery under my belt, and I just
think that you're not going to necessarily get JBN ten
years into their recovery journey. We really need to meet
(25:45):
people where they are and stop this like judgment and
morality idea of like, well, pull yourself up by the bootstrings.
And I just think that there is this knee jerk
reaction for people to say like, well, I can't tell
you how many times I've heard when I've said, you know,
when I and lobbying and working on expanding the HIV
social statya, that people are well, that's all great, but
I didn't go get you HIV. And so people just
(26:07):
don't want to take responsibility for something that they think
doesn't affect them, and then they want to take it
out on people that are already suffering. And I think
that when you look at something like HIV, it is
a result of coordinated neglect. I see such an over
emphasis on how do we keep HIV negative people negative?
(26:30):
But what about the one point two million people living
with HIV? What about the people who have to choose
between housing and their medication? When you tie it to
this idea of morality that it's been so inextricably tied
to I just I almost don't even know what we
need to do. I'm so frustrated and tired because I
(26:52):
thought that, you know, me coming out with my status
was going to be the hardest part, and I think
actually the hardest part has been frankly, how fucking heartly
people still are around what it is to live with
HIV AIDS. Have you had people now tell you that
you're sharing your status helped them share their's. Oh yes,
that gets to me and makes me cry so much.
(27:14):
The overwhelming support or where people will say, like whether
they encourage them to come out with their HIV status,
or someone read my book or encountered my story which
made them rethink a way that they've treated someone with HIV,
or wasn't open to someone or had an experience where
they could have done better. That's also been really special.
And actually this incredible woman she was starting her first
(27:35):
day at her local medical center and she like, she
took a training to take blood and test people and
she works at this lgbt Q clinic and she sent
me this cute picture of herself with her badge and
she was like, I started this training and got into
this because of your book, and I just want to
help people in my community. And I was like, oh god,
it's like the nicest thing, and he was ever said
to me, So there is so much support and there
(27:55):
is so much understanding. I cannot believe how great while
I am and like how my life has changed, and
like it's just so amazing. But then I think there's
just so many people who are still struggling. They just
do not see a way out. And I also think
that for myself another thing that makes me a little disappointed.
I mean, I think before Queer I I was doing good.
(28:18):
I was still you know, it's I still needed assistance.
I needed you know, I needed help, Like my world
wasn't falling apart. You know, I've been doing good for
a few years. But what do you do, Like you
shouldn't have to book a Netflix show and become like
a New York Times bestseller in order to have really
good insurance, Like I couldn't have like afforded to get
a three thousand dollar bottle of medication at the because
(28:40):
I lost one. I just that's where it's like, when
I think about how grateful I am and how much
my life is changing. Yes, I worked really hard, and yes,
like I didn't give up on myself. Nothing was really
given super easily. But there are people that have way
less than me and had nothing given to them in
terms of social capital or like the help that I
did have for my family. What are they supposed to
(29:02):
do because I did this with a lot of help.
What do you do when you just don't have any help?
I feel like any like patients training, because it's also
like unwinding people's negative held beliefs and stigmas, like people's
internalized stigmas. Yeah, because I mean people just have such
strong internalized homophobia around this. People who lived through this
(29:26):
pandemic in the early onsets of it. You know, we
think about how scary the last year was with the
onset of coronavirus and the end of twenty nineteen, but
like that was the case with HIV two, there was
a lot of fear. The people that were heterosexual sis
gender people in the and their twenties and their thirties
and their forties were just baked in this world where
(29:48):
people could be contracting an illness and dead in their twenties, teens, thirties,
dead families disowning them, don't ever come home dead. When
I was an eight grade and I told my dad
I was gay, he said, don't come home with AIDS.
And that's not my dad being a bad person. That's
what was on the news. We've all been front row
(30:11):
to this horrific pain and suffering that had homophobia all
ingrained in it, it had structural racism all ingrained in it.
And people still haven't really definitively taken the steps. So
it's like for me when I hear the casual ignorance
and the casual homophobia, I just go like from zero
to fifty. It's so hard because this is my lived
(30:34):
experience and I have fought against this, and people are
still fighting against this, And so when you have elected
leaders that are you know, the Margie Taylor Greens of
the world, and then their constituents really believe this like
highly radicalized religious propaganda rhetoric around like you know, things
such as HIV, AIDS and abortion and your healthcare stuff.
(30:57):
It really makes me lose my patience because there's such
a disregard for humanity and for for people and just
so much judgment. Like I don't know how to get
through that. And you know, we talk about like unity,
and we talk like how do we get forward and
what do we do? It's like we have to reach
people where they're at. It feels like it's a it's
a really difficult impast There is hope, there are good
(31:17):
people doing good things. But then I don't know, I
feel really stuck in some ways about it. The burden
shouldn't be on you to justify your humanity. I think
that's horrific framing that we too often have in our
discourse and conversations where kind of people get other eyes
and then somehow have to prove commonality and humanity and
(31:38):
like assertain dignity instead of it just being accorded to you,
because like that's the right place to begin. And I
hear you on the not finding unity with the people
who don't recognize our humanity, because I don't think you
can compromise with bigotry. There's no compromise with people who
(32:00):
don't think that you should have agency or freedom or
life or health because of who you are or what
your HIV status is. So I'm not going to argue
that point, but I am going to thank you for
your time today. Well, thank you for your time, Chelsea Clinton,
I can't ve got to meet you. What's so much?
(32:23):
Jonathan's memoir is titled Over the Top, A Raw Journey
to Self Love, and you can hear him on his
podcast Getting Curious with Jonathan van Ness and follow him
at j b N. We're taking a quick break, stay
with us. Over the last several decades, public perception of
(32:52):
who was affected by HIV and AIDS has played a
very real role in shaping the response, or lack thereof,
to the virus. From Ryan White, a child from Indiana
who was diagnosed with AIDS in the early nineteen eighties,
to fictional portrayals of people living with HIV and AIDS,
often white gay men in the nineteen nineties, It matters
whose story is told. The reality of HIV AIDS in
(33:13):
the US today is too often an untold story, and
that's what our next guest, someone who works directly with
communities and patients affected by HIV AIDS, is here to
talk about. Black Americans are disproportionately overrepresented in new HIV
diagnoses and among people living with HIV and AIDS. According
to the CDC, in black Americans accounted for forty two
(33:34):
percent of new HIV diagnoses. Even though Black Americans make
up only thirteen percent of our population, it is indisputable
the Black Americans face racism and public health and our
medical system. HIV is only one example of this. The
COVID nineteen vaccine rollout has been another someone working hard
to address these inequities, as Dr Only black Stock. Dr
black Stock is a primary care and HIV physician and
(33:57):
activist here in New York City. She's also the founder
and a executive director of Health Justice, an organization that
works to center anti racism and equity and healthcare practice.
Dr black Stock, thank you so much for joining us.
Thank you so much for having me. It's a pleasure
to be on Well. I know that you have quite
a few family ties to medicine. I wonder if you
(34:18):
could share why you became a doctor and also why
you decided to focus your work on HIV AIDS. You know,
my mother was born to a single mother. My mom really,
you know, struggled a lot. She talked often of like
having to put cardboard in the bottom of her shoes.
My mother's mother really emphasized the importance of education, and
(34:39):
my mom ended up going to Brooklyn College, where she
had a professor who really took an interest in black
and brown students and mentored them and encouraged them to
pursue medicine as a career. She ended up coming back
to New York City to do her residency at Harlem Hospital,
which you know has really a legacy of training like
(34:59):
gender rations of black doctors, and then spent the bulk
of her career in Central Brooklyn. Of a twin sister
who is also a physician, her name was Uch. You know,
we accompanied our mom to like many community healthfares, and
we saw the ways in which she married service and
advocacy with medicine, and so honestly didn't really consider anything else.
(35:21):
And while I was a medical student, ended up going
to Ghana and doing work at a clinic called the
Fever's Unit, which was his HIV clinic literally located outside
of the hospital campus, like literally marginalized in the way
that people who went to the clinic were marginalized. So I,
you know, I studied how people in this part of
(35:42):
Ghana we're doing with their experience and taking their medication,
what were their challenges and so you know, when I
came back from that experience, I actually did a rotation
with the George Stars Open Society where I rotated a
number of HIV clinics throughout New York City, in Harlem
and East New York and Washington High and basically just
realized that there's a lot going on. And I was
(36:03):
in other countries that are less resourced, but there was
a lot of work to be done here. In my
residency at Montifier Medical Center in the Bronx, I saw
patients with the same advanced AIDS opportunistic infections that I
saw when I wasn't gone in South Africa, and I said,
you know what, that compelled me to really focus on
the work that needs to be done here. I think
it can be very romantic and sexy to go to
(36:25):
other countries and try to do work and help people,
but I realized that the crisis here also merited my
attention as well. What from your perspective as a practitioner
has changed in the last thirty five years. You know,
HIV is one of those conditions that has like a
forty year lifespans, as you mentioned, and so much has
(36:48):
happened in those four decades. I think, probably most prominently
with respect to treatment, how treatment has become like much
more simplified. You know, we have once a day pills
that people can take that are very powerful, whereas back
in the beginning of the pandemic people took multiple pills
multiple times a day. So that has helped to streamline
things and I think helped to improve, for instance, adherents.
(37:11):
We also have another powerful tool in pre exposure profil
axis or PREP, which is the once a day daily
pill to prevent HIV infection. But even with those technological developments,
we still have really stark inequities and who is impacted
by HIV. And I think, at least for me, I
see HIV not just as a medical condition, but as
(37:33):
a social condition. It's really the lens through which I
can see all of these different systems of oppression, racism, sexism, transfombia, homophobia,
all really interacting. I don't think I can't think of
another condition that has such gross race ethnic disparity. So
when you look at, for instance, here in New York City,
when we look at new HIV diagnoses, we look at
(37:55):
diagnoses among women for instance, that includes cis gender and
transgender women. About nine of new diagnoses are among black
and Latino women, and then about are among black and
Latino men, and most of the men diagnosed with HIV
are men who have sex with men. So we just
see like the intersection of all these systems and the
ways in which they place people you know, at risk
(38:16):
for HIV. So I think that over these last few decades,
like there's been a greater understanding of intersectionality of the
way these systems play a role, and that there isn't
a one size fits all approach to addressing the HIV epidemic.
It's not just about popping a pill, whether it's HIV
treatment or prep. We need to address issues around the housing,
(38:36):
around you know, employment, food, insecurity, all of that. All
of those social determinants of health impact HIV risk. Another
I think real claustrophobic challenge here is the premnitious effects
of stigma. When I was listening to Peter Staley, I
thought like, wow, like, very similar, doctor Black actor, what
(38:57):
you're talking about. We've made so much proger us and
yet we still have so much work to do on
both the social vulnerabilities and social determinants that we know
are intimately connected to someone's health, but also this miasma
of stigma that still just seems so pervasive. Can you
can you talk about how you kind of see stigma
(39:21):
in your patient care and also if you've seen ways
to really push back against stigma that have worked. Stigma
around HIV specifically, I think it's somewhat unique. I think
if there's any medical condition that is associated what's such
tremendous sort of internalized shame as as well as anticipated
(39:41):
and enacted stigma, it's it's probably HIV. And I think
that has to do with who is most impacted by HIV.
You know the fact that men who have sex with
men are most impacted, transgender women, people who inject drugs,
and so those behaviors have been stigmatized by society and
thus HIV sort of like been pulled in to that um.
(40:01):
You know, it comes up, for instance, like I have
so in some of my patients who have not disclosed
or shared with any friends or family members their status
that they are HIV positive, and we know that just
holding in that information has impacts on people's health. You know,
it affects people's emotional well being, but it also impacts
their ability to take their medication every day and come
(40:23):
to appointments. It's really critical that we work to obviously
destigmatize HIV. And just to say that, when I was
I was Assistant Commissioner at the New York City Health
Department up until this past July, and in that role,
I led the Bureau of HIV and the city's response
to the HIV epidemic, and we launched a campaign called
Made Equal, which is about promoting the message of undetectable
(40:45):
equals untransmittable, which basically means, as I alluded to before,
if someone is HIV positive, if they're taking their medications,
if they're able to suppress that level of virus, not
only does that have impact on their own health, but
it prevents HIV from being passed on to any of
their sex partners. And so it was really important for
us to do that campaign because, you know, we wanted
(41:08):
people living with HIV, who have often been portrayed as
you know, disease vectors and have a lot of internalized stigma,
to know that there aren't disease vectors that they can
have you know, healthy, fulfilling relationships. And we also wanted
people in the public to know that people with HIV
who are on medication, who are suppressed, are very safe
sex partners, at least with respect to HIV. So really
(41:30):
spreading that message has helped, and I think also just
destigmatizing some of the behaviors associated with HIV. Right, So,
when we think about sexuality and how how it's important to,
at least as a health department when I was at
New York City Health Department, to be really sex positive
and non judgmental, because there are such great deal stigma
associated with just sex and we know that sexual health
(41:50):
is such an important part of overall health and well being.
I know that you've worked on all of these related
issues from your public service and the Department of Health
here in New York City, through your practice and also
through your organization, Health Justice. Did you talk a little
bit about its work and its goals? Sure? So my organization,
(42:11):
it's Health Equity Consulting Practice, and it's really focused on
centering anti racism and equity in the workplace and also
helping organizations, both public health and healthcare to reduce health
inequities in the communities that they serve. And a lot
of my work at the Health Department, you know, revolved
around advancing racial equity, gender equity, lgbt Q equity, and
(42:33):
I got just really inspired to do that work at
the health department on a citywide level, and decided that
my next step would be really focusing my career on
helping to advance equity in public health and healthcare organizations.
I think we've seen the impact of the pandemic in
terms of really revealing a lot of existing inequities and
(42:54):
also emerging inequities with respect to COVID. So there's a
lot of work that needs to be done, and I'm
really interested in engaging with organizations that are ready to
do that work. Dr Blacks, I do, though, I just
want to ask you what it has been like over
the last year, you know, as a h V medicine
practitioner caring for your patients during the COVID pandemic. How
has it been different for you as a healthcare provider
(43:16):
and how has your patients experience been different. What's been
interesting is, you know, healthcare providers are learning along with
the public about the novel coronavirus. So I have to say,
at the beginning of the pandemic, myself and my colleagues, we,
you know, we're very concerned about our safety and having
obviously adequate ppe for my patients, especially those who are
(43:36):
older who lived through the early days of the AIDS epidemic.
This has been for many very traumatizing experience. Many sort
of remember the fear and vulnerability that they felt at
that time, and many have drawn parallels to this current experience.
I think in the way that the pandemic has just
proportionally impacted marginalized communities, in the way that the government
(44:00):
response initially was inadequate and delayed. You know, They're just
so many parallels that people see. And I think also
the isolation. Many people living with HIV, especially people who
are older, experience a great deal of social isolation, in
part because so many of their loved ones have passed
away from HIV and they're kind of like the long
(44:21):
term survivors, and so this pandemic I think has sort
of heightened that sense of being alone having lost all
these other people. So for for me, my role has
really been to try to support to the extent that
I can my patients, providing emotional support, referrals to know
mental health providers, behavioral health providers. But this has been challenging.
I provide care in Central Harlem, you know, which has
(44:43):
a very high poverty rate by patients have really been
directly impacted by this pandemic and have tried to also
continue to take care of themselves at the same time.
Clearly this work is still vitally important today. How does
that work continue in COVID nineteen in we can't gather
and shared communal space. How has that sense of shared
(45:05):
community and continue trust able to persist while we're separate
and a part at least in a physical sense. It's
been very challenging. I think it's challenging for obviously people
living with HIV and those who may be at risk
to you know, figure out how they can engage and care.
The availability of appointments and other services are much more limited.
(45:26):
Now we've seen the ways in which we've kind of
had to be nimble. For instance, at the beginning of
the pandemic, you know, a lot of organizations stopped doing
community outreach work for fair obviously of exposing their employees.
When that happened, you know, HIV testing, for instance, became
a lot less available, and so what we ended up
doing when I was at the New York City Health
(45:46):
Department last year, we actually ended up creating a home
HIV test program where the community based organizations are partners
that we work with, we're able to give a home
HIV test sent to them, So I think it's really
these are new times, So it's really about innovating and
figuring out how we can leverage partnerships with community based
(46:06):
organizations and how they can also learn best practices from
one another so that we can continue to ensure we've
made a lot of progress towards any of the epidemic
that we don't reverse the progress that's been made so far.
You just spoke about the rise of at home testing,
I mean not only for COVID nineteen, but also for
at home HIV testing and other STI testing. As we
(46:30):
continue to hopefully move through and eventually move forward from
COVID nineteen. What shifts have happened do you hope stay?
What do you think still radically needs to change? From
a public health perspective, people are probably very familiar with this,
but just the increasing use of telehealth for instance, like
I don't know why before the pandemic you weren't leveraging
(46:51):
it and using it, But the pandemic obviously has accelerated telehealth,
and I think for many individuals who have access to
a telephone or um, you know, a smartphone or a
computer like this is incredibly has been super helpful and
has made things a lot easier both for patients as
well as for providers. But then again, obviously the challenges
(47:13):
that we know, there's a digital divide, there are you know,
inequities in terms of digital access, digital literacy. So that's
not the solution for everything, but I think it's a
positive step forward. What do you think, not just from
a kind of an HIV practitioner's perspective, you needs to
happen at the national level, like what do you want
to see at this new CDC leadership and and what
(47:35):
thoughts might you have from a global level too? Yeah, No,
it's it's super exciting. Seeing the CDC promote evidence based
public health interventions is incredibly important, and so I think
the work that they have done thus far has been really,
I think, really important in terms of gaining the confidence
of the public. I think what we've seen happen also
(47:57):
is I guess early on in the pandemic right the
sideline of the CDC, but really having President Biden and
his administration leverage and utilize the expertise that's there from
a global health perspective, just thinking about COVID nineteen, you know,
just ensuring that we understand the ways in which we
are interconnected. But we need to understand that many people
(48:19):
in low income and middle income countries have not seen
a vaccine rollout yet and are going to be neglected
or left at the sidelines as some of more wealthier
countries are rolling out with the vaccine. But the reality
is that we know COVID nineteen and the virus no
no boundaries, no no boarders, and so we need to
make sure that not just because we fear that we
could also be infective, but just out of humanity that
(48:42):
we want to make sure that everyone's taken care of.
So I think I would love to see that, and
I think I've seen the Biden administration. I read something
recently about an investment in like a Global of fund
to ensure access to the vaccine for lower income countries.
But I think that needs to also be a priority
for US. It has been surprising to me how many
people seem to think HIV AIDS was like twentieth century right, like, oh,
(49:06):
that's such old news. It was terrible, but it's not
really an issue. What more do you think those of
us who care about public health and you care about
health equity can do to try to ensure that more
people understand that HIV AIDS very much remains a public
health issue that very much kind of HIV positive people
(49:27):
deserve to be listened to, and we collectively deserve a
real response to both protect people in the future and
continuing to treat people today. You know, I think that obviously,
with this pandemic, a lot of the attention that had
previously been on HIV obviously has gone away. But I
think we need to understand the ways in which many
(49:49):
of the same structural drivers and social determinants health that
have placed communities at risk for COVID nineteen are some
of the very similar systems that have created these in
equities in terms of HIV and allow the HIV epidemic
to persist and to continue. I think we need to
understand the ways in which policy level, for instance, medicaid expansion,
(50:11):
how something like that is one way of actually helping
people living with HIV. You know, for instance, the South
has become the new epicenter for HIV in the United States,
and there are seven states in the South that have
not expanded Medicaid, but we know that Medicaid is one
of the main providers of healthcare to people living with HIV.
So to the extent possible people who care about public
(50:32):
health care about people living with HIV, that we realize
how these policy level issues can either reverse or perpetuate
the epidemic and really advocate to the extent that they
can on local, state, or federal level. What do you
think we need to help people understand that our history
is still very present with us, especially in public health.
(50:54):
I do think that because there's been aghastly this sort
of awakening that many people have had about an equity
ease and the drivers of health inequities, now is a
time where we need to really begin to really start
taking action. And I know at the New York City
Health Department, our former Health Commissioner Mary Bassett actually launched
initiative called Race to Justice, which was really about bringing
(51:14):
discussions of racism to the foreign really understanding how racism
impacts health outcomes and how we need to change the
way that we do our work at the Health Department.
So I think sort of broad initiatives like that can
be helpful. And then obviously in education, in schools wherever possible,
this communicate this information around structural drivers inequities can really
(51:37):
be shared in a way that is understandable by folks,
in a way that actually motivates them to want to
have changed. Is understandable in the sense of hopefully then
not only motivates them, Dr black Stock, but where they
feel responsible and where we feel responsible. Definitely, I think,
I think if we're not working to dismantle these systems,
(51:58):
we are complicit in them. Folks need to also understand
the ways in which they are responsible for enacting change.
Dr black Stock, thank you so much for your time today.
I'm incredibly grateful. You're very welcome. Thank you so much
for having me on. You can learn more about Dr
black stocks work and the organization she created, Health Justice
(52:18):
at Health Justice dot c O or follow her at
One black Stock. So much of the history of the
HIV AIDS crisis has been characterized by indifference, ignorance, and stigma.
We've lost millions of people around the world who would
be alive today if different decisions had been made at
different junctures, including by our own government. And yet, as
(52:40):
we heard from our guests today, when activists bravely set
out to change the public perception of the virus. They did,
though the work isn't done. We have so much more
to do to expand access to good HIV AIDS care
and build truly more equitable public health and health care systems.
Doing that will require more resources across science and medicine,
alongside political will. There's a saying in public health that
(53:02):
outbreaks are inevitable, but epidemics aren't. We are not passive
to germs, and I certainly hope that we can learn
from our mistakes and our successes in confronting HIV and
AIDS to help improve our ongoing response to COVID nineteen.
Stigma is deadly, racism is deadly, and equity is deadly.
(53:22):
But we can confront them and do better. As we've
heard from all of our guests today, they have done
that and so much more. I hope that you will
follow them, learn more about their work, and support them.
Thank you for joining in Fact. In Fact is brought
to you by I Heart Radio. We're produced by Erica Goodmanson,
(53:45):
Lauren Peterson, Kathy Russo, Julie Suprian, and Justin Wright, with
help from the Hidden Light team of Barry Lurry, Sarah Horowitz,
Nikki Huggett, Emily Young, and hum Abite, with additional support
from Lindsay Hoffman. Original music is by Justin Wright. If
you liked this episode of In Fact, please make sure
to subscribe so you never miss an episode, and tell
(54:06):
your family and friends to do the same. If you
really want to help us out, leave us a review
on Apple Podcasts. Thanks again for listening, and see you
next week.
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