and welcome to Listen Up People, a podcast of
the USC Suzanne Devorak-Peck School of Social
Work. I'm Dr. Holly Priebe -Sotelo, Associate
Teaching Professor of practicum education and
your host for the second season of the podcast.
In today's episode, we're exploring aging with
HIV and AIDS. An HIV diagnosis was once considered
a death sentence, but with modern treatment,
that has changed. People living with HIV and
AIDS today are becoming first generations to
age with this disease and pioneer a new path
for what that means. My guests today both focus
much of their work on aging with HIV AIDS and
how our systems can best support them. Dr. Sara
Schwartz, associate teaching professor and my
colleague at the USC School of Social Work is
an expert in the area of aging with bleeding
disorders, HIV AIDS, historical trauma in diverse
communities, and visual social work. Sara serves
on the board of directors of the National AIDS
Memorial and is a co -producer of the annual
surviving Voices documentary films. Her colleague
Dr. Paul Nash is an instructional professor of
gerontology at the USC Leonard Davis School of
Gerontology whose research focuses on ageism,
discrimination, and prejudice with a particular
focus on aging with HIV and AIDS. Sarah and Paul
have collaborated extensively in the field and
I am pleased to welcome them here today. to discuss
this important topic. Great to have you both
here today. you became interested in this work.
So let's start with you, Sara. How did you become
involved in advocacy for people living with HIV
and AIDS? Thank you for having me, Holly. I grew
up in the Washington, D .C. area and was a latchkey
kid in the 80s and watched all of this unfold
on my television set, The AIDS Crisis, and was
very aware of the social action organizing going
on with ACT UP. and then the AIDS quilt when
it came to Washington DC in 1987 and began volunteering
with this community when I graduated from college
and moved back to the DC area. I think it was
1995 I began volunteering at the food bank for
people living with HIV AIDS receiving services
from the Whitman -Walker Clinic. and have been
actively engaged as a volunteer ever since. My
research pivoted about eight or nine years ago
towards this area. Excellent. Thank you so much.
I didn't know that about you, Paul, and for you.
So I started off as a psychologist and I was
interested in prejudice and that quickly pivoted
towards ageism as an area that was largely underrepresented
and under -researched and once working in that
field I became exposed to different researchers
around intersectionality and some of the work
by Stephen Karpiak who is recently deceased but
he introduced me to the work around aging with
HIV and asked me to look at ageism. in the world
of HIV. And as we started to explore that area,
we found an underserved and an under -researched
community that was far more diverse than any
of the existing knowledge bases was really reflecting.
So my area of research has really blossomed over
the last five years or so within that area. And
as with Sarah, my advocacy has followed with
that becoming a commissioner for the Los Angeles
County Commission on HIV and leading the HIV
interest groups for national organizations like
the genealogical societies of America. Excellent.
Oh my gosh, that's great news to hear. And then
we can all agree then, and I'll pose this question
to Sara, that aging can be challenging to navigate,
obviously, under the best of circumstances. Can
you talk a bit about how that is complicated
if someone has a bleeding disorder and they also
have HIV rates? First, I think it makes sense
to share how I became involved with the bleeding
disorder community in the first place, as I'm
not a member of that community. currently sit
on the board of directors of the National AIDS
Memorial. But prior to that, the HIV Story Project
built a partnership with the National AIDS Memorial
to begin making short films each year called
the Surviving Voices Project that document the
stories and histories of communities who were
impacted by HIV and AIDS, whose stories have
not often been told. Our second in that series
was on AIDS in the hemophilia community. And
that's how I actually first learned about the
history of the contaminated blood supply and
how that impacted people who were using the national
blood supply for treatment for their bleeding
disorders, including hemophilia. Of course, I
knew about Ryan White, but I was really shocked
that I didn't know this history prior to that
and began a pro bono research project to collect
the voices of this community and how the contaminated
blood supply impacts. So I've built a data set
of over 80 interviews over the past seven or
eight years from multiple perspectives, from
mothers who lost children to HIV and AIDS, from
the contaminated blood supply or siblings. But
about six years ago, I started a project looking
at people who are aging, who survived the contaminated
blood supply and are now aging with a bleeding
disorder as the first cohort to actually age
with a bleeding disorder. For many of them, that
includes an HIV diagnosis. And for most of them,
that includes a diagnosis of hepatitis that most
of them cleared in the 1990s with treatment.
So it's very complicated. Aging is complicated
anyway, but when you've been on the antiretroviral
medications for 30 years, plus you have joint
pain, arthritis, injuries from your bleeding
disorder, it really complicates the process.
Emotionally, there's a lot of trauma in this
community. There's trauma in the bleeding disorder
community, trauma from physical pain, emotional
pain, being othered, stigmatized, socially isolated.
And then there's the trauma from also having
a diagnosis of HIV and AIDS, which was also stigmatized
and not ever expecting to live this long. So
this is a population who never really anticipated
growing into older age. And for many of them,
they did not prepare themselves for it. and are
trying to navigate a health system and a medical
system and a social system that is also not prepared
to help them age. Thank you for your work. And
Paul, would you care to answer to that question
as well about the complications of the bleeding
disorders? With regards to a bleeding disorder
specifically, I am definitely going to defer
to Sarah's expertise in that. But the only thing
I will say is a bit of a counter. Yes, there
are challenges that we associate with aging.
but it is a huge age of opportunity as well.
And we often undersell the contributions of older
adults, but the contributions they make both
economically, socially, and through a community
cohesion is phenomenal. So we should think of
it as a time of opportunity rather than just
as a time of challenge. Excellent. And Paul,
which leads me to my next question really is
that we know that your area of research expertise
is marginalized communities, such as those aging
with HIV AIDS that also face additional challenges
due to sexual orientation, race, gender, or socioeconomic
status. How do you explain a little bit more
about the intersectionalities and how they're
impacted with the experience of aging? Yeah,
no problem at all. Especially in this day and
age, intersectionality is a word that many shy
away from, but it really matters when it comes
to people aging with HIV and AIDS because HIV
doesn't exist in a vacuum. It's layered onto
other identities and life circumstances that
help us shape access to care and overall well
-being. So when we consider HIV stigma and other
stigmas like homophobia, racism, sexism, ageism,
classism, etc., they stack rather than simply
add. Therefore, older adults with HIV might face
discrimination in healthcare, housing, long -term
care facilities, and social services, which makes
them reluctant often to seek help. So for LGBTQ
plus individuals specifically, Ageing can mean
returning to environments like nursing homes
where they feel pressure to re -closet themselves
for safety reasons. And these challenges can
lead to increased isolation, delayed care access,
stress and poor mental health. Linked to this,
health disparities are also a concern because
people who are ageing with HIV already have higher
risks of things like cardiovascular disease,
cognitive decline, frailty and multi -morbidities.
These risks are often worse for racial and ethnic
minorities because of standing inequalities with
regards to healthcare access, healthcare quality,
and treatment bias, which result in earlier onset
of age -related conditions and more complex health
management. And we talked a little bit about
economic security, and that's a problem for older
people who are living with HIV, especially women
and people of colour, as well as those as part
of the LGBTQ plus population, because they're
more likely to have experienced interrupted careers,
employment discrimination, and lower lifetime
earnings which result in lower savings and stable
housing and reliance on underfunded safety net
programs. And all of this means that they have
difficulty affording medications, food and transportation,
which causes more troubles as they age through
the end of part of their years. And linked to
this, women with HIV, for example, they often
face unique challenges like later diagnosis or
they're more likely to have caregiver burden.
And they're also massively underrepresented when
it comes to HIV research. And specifically, when
we look at transgender communities, these individuals
may encounter barriers to gender affirming care.
which is compounded by them HIV -related stigma.
So, gender -related stigma results in these gaps
in appropriate, culturally competent healthcare,
as well as putting up higher mental health burdens.
One of the big ones that we don't talk about
is social isolation, because that can cause huge
problems, where many long -term survivors may
have lost partners, friends and community during
the earlier waves of the early epidemic, and
they might face family rejection, which is also
more common for LGBT people, as they may have
fewer additional caregiving networks, which increases
the risk of loneliness, depression, and also
a greater risk of cognitive decline. But despite
those challenges, what we see is many older adults
with HIV demonstrate stronger coping skills,
activism in the community, and they have deep
health literacy. So to answer your question,
some intersectional identities really shape.
HIV by amplifying the inequalities across health,
social and economic domains, but they also shape
resilience and they increase community bonds.
So addressing these realities requires integrated,
culturally responsive and anti -discriminatory
practices across healthcare services and social
policy. This is really eye -opening for me as
a professor that is trying to work with young
students and helping them to really examine all
the the complexity behind working with clients
that it's never just one matter. It's never as
simple as this one solution. So thank you so
much. Would you care to add anything, Sara?
Well, I was thinking that it might be interesting,
since this is a social work oriented podcast,
to talk about the amazing activism that happened
in the 80s and 90s in the communities impacted
by HIV and AIDS. My short film, Gert's Boys,
that's free to the public now, just Google Gert's
Boys, which is about one of the founders of the
AIDS quilt. I do try to weave stories about the
social action organizing that happened in the
80s and 90s. up the quilt, shanty, support groups,
community supports, food kitchens to care for
each other, right? The community that was impacted
built these supports too. advocate for the government
to provide funds to discover treatment for AIDS,
but also to come together and support each other.
As Paul had mentioned, many people were abandoned
by family members and had lost friends. That's
an important time for social workers to understand
historically. I do think we need to understand
our past to understand our present and have a
pathway towards the future. Yeah, so I wanted
to include that. I also wanted to share that
my working on a second film right now which is
on one of these support groups. that has existed
for 39 years. It's called the Mothers of Bleeders
Support Group. And this was a group of women
whose children or partners or siblings were infected
with HIV from the contaminated blood supply.
And they built a support group that continues
to meet every few months for 40 years. And they
are aging together and losing members of the
group, which is interesting to experience alongside
them. Wow. Thank you so much. Again, so informative.
Paul, I'd like to ask for your perspective. You
know, I know that the HIV was technically the
first pandemic in our modern scientific era.
And I know that you and Sarah have presented
research around how the COVID pandemic impacted
those still living with the legacy of HIV pandemic.
Can you share some of your research findings
about this topic? Yeah, I think COVID was a real
eye -opener for many, but it often unlocked a
lot of packed away trauma for many of those people
that had been through that initial HIV pandemic.
So many people with HIV experienced interruptions
to their routine care during the pandemic. when
we experienced lockdowns, clinic closures, and
shifted healthcare system priorities meant that
there was disruption in antiretroviral therapy
access, viral load monitoring, and HIV prevention
services. So in some regions of the US, HIV testing
and prevention programs were scaled back or paused,
which slowed the progress towards early diagnosis
and treatment goals. And in response, many programs
implemented multi -medication dispensing. or
home delivery or telehealth to try and maintain
some community continuity of care. Multiple studies
during that pandemic have studied and worked
with people who are living with HIV and they've
noted many mental health impacts. So for example,
I talked about stress and isolation before. Where
people experience these pandemic stresses, including
fears around co -infection, social distancing
and service disruptions, this exacerbated anxiety
disruption. and psychological distress for people
who are living with HIV. And that linked to a
reduction in mental health care utilization.
And when we look at large scale data in the US,
it shows that mental health care visits decreased
amongst people who are living with HIV during
the pandemic, even as their needs were growing.
And disparities were again larger by race and
insurance status. And many people living with
HIV already carried those histories of trauma,
stigma and loss. And the pandemic pandemic's
isolation. as likely to have re -triggered memories
and stress linked to the early HIV years, compounding
those mental health challenges. Interestingly,
the dual pandemics also magnified existing disparities.
So people who were living with HIV, who were
also part of marginalised groups like racial
and ethnic minorities, often experienced greater
service disruption, greater mental health stress,
and lower healthcare utilisation. And these structural
inequalities shape not only HIV outcomes, but
also the vulnerability to COVID -19 exposure,
as well as severe illness, which again echoed
the patterns that we've seen in the earlier HIV
pandemic. So when we come to sum all this up,
when you look at our research, the Covid pandemic
impacted people who are living with HIV in multiple
ways. It disrupted their healthcare systems,
which revealed both vulnerabilities as well as
innovations when it comes to service delivery.
It exacerbated mental health challenges, especially
where social support and care access were limited.
But it also highlighted and deepened health inequalities,
particularly for those marginalised communities
we talked about. And it reinforced public health
lessons that we learned from that HIV pandemic
about the importance of community led approaches,
equity focused responses, and also resilient
healthcare systems. So where are we now versus
where we were with HIV AIDS and where are we
going under the current federal healthcare changes?
I don't know, Sara, if you'd like to answer
that and maybe Paul. I think Paul is more versed
in the statistics, but I will say I am very frightened
about what is happening politically right now.
In order for someone's HIV diagnosis not to become
an AIDS diagnosis, they have to have the medication
to treat it. And in order to have the medication
to treat it, they have to have health insurance
and access to the medication. So I'm very concerned
about what this is going to look like in the
coming years. But Paul, I think you have more
information on projections of that. Yeah, to
say it's a scary time is a little bit of an understatement,
to be honest with you. We're looking at reductions
in HIV funding. That's not just research in service
delivery as well as service prevention. As part
of the Los Angeles County Commission on HIV,
we're responsible for allocations of those funds
and we're really struggling to meet the needs.
We know that, for example, the Department of
Health has cut the budgets for service delivery
and as well as any of these interventions that
help keep people well. As Sarah said, what's
really important is trying to not just get people
into care, but keep them in care. It's that continuum
of care that we're really, really interested
in and that can be linked. to people's insurance.
It can also be linked to people's willingness
to engage with services, the targeting of certain
groups by immigration services, for example,
regardless of immigration or migration or citizenship
status. People are afraid to go and collect what
they need. They're afraid to go to screenings,
they're afraid to go to support groups. So we
know people are dropping off. When we see Medicare,
Medicaid cuts, when we see the reduction in Affordable
Care Act subsidies, we know that is going to
impact people who rely on those medications.
And yeah, we're starting to look now, not that
ending the HIV epidemic, but modelling how many
people are going to die from HIV AIDS. That just
wasn't in the narrative even 12, 24 months ago.
Well, this is such important information and
I do encourage our listeners to continue to learn
about the topics, get involved. I know sometimes
people are feeling very discouraged at this time,
but this is not a time to be paralyzed in our
fear. We need to continue to educate ourselves
and what we can do to get involved. So as we
begin to wrap up our discussion here today, is
there anything else that we haven't talked about
that maybe our listeners would like to know about
this topic of aging with HIV and AIDS. I'll start
with Sara and then Paul, please. I do believe
that we are living in a historical time where
history is being rewritten and erased and our
younger generations really don't know their history.
Very well. So I encourage our audience to travel
back in time, learn about HIV and AIDS in our
country and internationally, learn about how
our government responded to or did not respond
to the crisis and learn from those lessons and
have hope. This was an amazingly powerful movement.
There are long -term survivors. We can learn
from them. And you're right. We have to have
hope as we look forward. Excellent, thank you
Sarah. Paul, any final thoughts? Yeah, I really
want to echo what Sarah said is we've talked
about intersectionality and each one of these
communities is massively resilient. This is not
the first time and it is unlikely to be the last
time. that they are targeted by people in power.
These communities do not fall. These communities
stand together. They build in strength. What
we need to make sure as people that are coming
from a position of privilege is that we look
towards inclusivity. We look towards representation,
but it's not tokenistic. We need to have meaningful
engagement. It's not just about. having people's
voices around a table, it's about putting people
with those voices in positions of power to make
real change. We need to meet people where they're
at, but we also need to make sure that we've
got the resources to enable people to get ahead
of the growing need that we're facing. We are
heading rapidly towards 70 % of the people who
are living with HIV being older adults. That
is a success story. But we still have much we
don't know about aging with HIV, whether that
is long -term survivors or people who are acquiring
HIV in later life. We need to get our heads around
the fact that people over the age of 60 have
sex. We need to talk about sexual health at all
ages. And we need to remove this stigma of ageism.
when it comes to engaging people in health care
and make it less about dollars and make it more
about person -centered meaningful care. Love
that. I mean, I'm taking notes here and thinking
about, you know, there's much to be celebrated
in the work that you've done and it has taken
place so far, but there's still much more to
go. Yes, please, Paul. Yeah, the only thing I
was going to say is I'm going to hold Sarah up
as opposed to child here is. there is huge amounts
that gerontology and social work can do together.
And Sarah and I, we show this, and I've worked
with several colleagues in the School of Social
Work, and we are a powerhouse together. Very
rarely do we actually work together. A USC is
a powerhouse of silos, but we are, again, like
these communities, these intersectional communities,
we are stronger together. And I would really
encourage people who are listening to this, if
they're social workers. Go and bug the School
of Gerontology. Go and speak to people that work
in Aging Services. And similarly, people that
work with older adults. Get that social work
perspective. These are unique. but really complementary
approaches. Yes, beautifully said. We are stronger
together as a society. We must continue to educate
ourselves, to work collaboratively with our partners
within the university and outside. And really,
again, this is no time to give up, right, to
maintain that hope. So incredible, incredible.
I wish we had more time. I'd like to thank you,
Sara and Paul, for joining us for this very
important and critical discussion. If you would
like more information about the USC School of
Social Work, please visit dworakpeck.usc.edu.
And if you're interested in learning more about
aging and gerontology, please visit gero.usc.edu.
And if you'd like to network with our guests
regarding their work or want to support our transformative
research and programs, please email us at listenuppeople@usc.edu.
Thank you.