WEBVTT 00:00:14.509 --> 00:00:17.969 and welcome to Listen Up People, a podcast of 00:00:17.969 --> 00:00:20.710 the USC Suzanne Devorak-Peck School of Social 00:00:20.710 --> 00:00:23.690 Work. I'm Dr. Holly Priebe -Sotelo, Associate 00:00:23.690 --> 00:00:26.589 Teaching Professor of practicum education and 00:00:26.589 --> 00:00:29.149 your host for the second season of the podcast. 00:00:29.750 --> 00:00:32.890 In today's episode, we're exploring aging with 00:00:32.890 --> 00:00:36.770 HIV and AIDS. An HIV diagnosis was once considered 00:00:36.770 --> 00:00:39.390 a death sentence, but with modern treatment, 00:00:39.490 --> 00:00:42.640 that has changed. People living with HIV and 00:00:42.640 --> 00:00:45.619 AIDS today are becoming first generations to 00:00:45.619 --> 00:00:48.420 age with this disease and pioneer a new path 00:00:48.420 --> 00:00:51.780 for what that means. My guests today both focus 00:00:51.780 --> 00:00:55.479 much of their work on aging with HIV AIDS and 00:00:55.479 --> 00:00:59.000 how our systems can best support them. Dr. Sara 00:00:59.000 --> 00:01:01.880 Schwartz, associate teaching professor and my 00:01:01.880 --> 00:01:04.719 colleague at the USC School of Social Work is 00:01:04.719 --> 00:01:07.680 an expert in the area of aging with bleeding 00:01:07.680 --> 00:01:12.000 disorders, HIV AIDS, historical trauma in diverse 00:01:12.000 --> 00:01:15.239 communities, and visual social work. Sara serves 00:01:15.239 --> 00:01:17.700 on the board of directors of the National AIDS 00:01:17.700 --> 00:01:20.819 Memorial and is a co -producer of the annual 00:01:20.819 --> 00:01:24.890 surviving Voices documentary films. Her colleague 00:01:24.890 --> 00:01:27.989 Dr. Paul Nash is an instructional professor of 00:01:27.989 --> 00:01:31.890 gerontology at the USC Leonard Davis School of 00:01:31.890 --> 00:01:35.489 Gerontology whose research focuses on ageism, 00:01:35.870 --> 00:01:39.049 discrimination, and prejudice with a particular 00:01:39.049 --> 00:01:42.930 focus on aging with HIV and AIDS. Sarah and Paul 00:01:42.930 --> 00:01:45.849 have collaborated extensively in the field and 00:01:45.849 --> 00:01:49.140 I am pleased to welcome them here today. to discuss 00:01:49.140 --> 00:01:51.420 this important topic. Great to have you both 00:01:51.420 --> 00:02:00.209 here today. you became interested in this work. 00:02:00.329 --> 00:02:02.650 So let's start with you, Sara. How did you become 00:02:02.650 --> 00:02:06.469 involved in advocacy for people living with HIV 00:02:06.469 --> 00:02:10.229 and AIDS? Thank you for having me, Holly. I grew 00:02:10.229 --> 00:02:15.610 up in the Washington, D .C. area and was a latchkey 00:02:15.610 --> 00:02:19.389 kid in the 80s and watched all of this unfold 00:02:19.389 --> 00:02:23.310 on my television set, The AIDS Crisis, and was 00:02:23.310 --> 00:02:26.030 very aware of the social action organizing going 00:02:26.030 --> 00:02:29.460 on with ACT UP. and then the AIDS quilt when 00:02:29.460 --> 00:02:34.439 it came to Washington DC in 1987 and began volunteering 00:02:34.439 --> 00:02:37.800 with this community when I graduated from college 00:02:37.800 --> 00:02:40.620 and moved back to the DC area. I think it was 00:02:40.620 --> 00:02:44.659 1995 I began volunteering at the food bank for 00:02:44.659 --> 00:02:47.500 people living with HIV AIDS receiving services 00:02:47.500 --> 00:02:50.289 from the Whitman -Walker Clinic. and have been 00:02:50.289 --> 00:02:53.770 actively engaged as a volunteer ever since. My 00:02:53.770 --> 00:02:56.430 research pivoted about eight or nine years ago 00:02:56.430 --> 00:02:59.270 towards this area. Excellent. Thank you so much. 00:02:59.449 --> 00:03:01.889 I didn't know that about you, Paul, and for you. 00:03:02.090 --> 00:03:05.030 So I started off as a psychologist and I was 00:03:05.030 --> 00:03:07.909 interested in prejudice and that quickly pivoted 00:03:07.909 --> 00:03:12.009 towards ageism as an area that was largely underrepresented 00:03:12.009 --> 00:03:14.509 and under -researched and once working in that 00:03:14.509 --> 00:03:17.729 field I became exposed to different researchers 00:03:17.729 --> 00:03:20.509 around intersectionality and some of the work 00:03:20.509 --> 00:03:24.610 by Stephen Karpiak who is recently deceased but 00:03:24.610 --> 00:03:28.030 he introduced me to the work around aging with 00:03:28.030 --> 00:03:31.340 HIV and asked me to look at ageism. in the world 00:03:31.340 --> 00:03:34.620 of HIV. And as we started to explore that area, 00:03:34.719 --> 00:03:38.199 we found an underserved and an under -researched 00:03:38.199 --> 00:03:41.020 community that was far more diverse than any 00:03:41.020 --> 00:03:44.180 of the existing knowledge bases was really reflecting. 00:03:44.539 --> 00:03:47.280 So my area of research has really blossomed over 00:03:47.280 --> 00:03:50.319 the last five years or so within that area. And 00:03:50.319 --> 00:03:52.479 as with Sarah, my advocacy has followed with 00:03:52.479 --> 00:03:54.560 that becoming a commissioner for the Los Angeles 00:03:54.560 --> 00:03:57.439 County Commission on HIV and leading the HIV 00:03:57.439 --> 00:03:59.860 interest groups for national organizations like 00:03:59.860 --> 00:04:02.520 the genealogical societies of America. Excellent. 00:04:02.740 --> 00:04:05.560 Oh my gosh, that's great news to hear. And then 00:04:05.560 --> 00:04:07.900 we can all agree then, and I'll pose this question 00:04:07.900 --> 00:04:11.479 to Sara, that aging can be challenging to navigate, 00:04:11.479 --> 00:04:14.419 obviously, under the best of circumstances. Can 00:04:14.419 --> 00:04:17.839 you talk a bit about how that is complicated 00:04:17.839 --> 00:04:20.759 if someone has a bleeding disorder and they also 00:04:20.759 --> 00:04:23.819 have HIV rates? First, I think it makes sense 00:04:23.819 --> 00:04:26.540 to share how I became involved with the bleeding 00:04:26.540 --> 00:04:28.860 disorder community in the first place, as I'm 00:04:28.860 --> 00:04:31.860 not a member of that community. currently sit 00:04:31.860 --> 00:04:33.680 on the board of directors of the National AIDS 00:04:33.680 --> 00:04:37.079 Memorial. But prior to that, the HIV Story Project 00:04:37.079 --> 00:04:39.959 built a partnership with the National AIDS Memorial 00:04:39.959 --> 00:04:44.360 to begin making short films each year called 00:04:44.360 --> 00:04:47.839 the Surviving Voices Project that document the 00:04:47.839 --> 00:04:50.459 stories and histories of communities who were 00:04:50.459 --> 00:04:53.620 impacted by HIV and AIDS, whose stories have 00:04:53.620 --> 00:04:56.560 not often been told. Our second in that series 00:04:56.560 --> 00:04:59.779 was on AIDS in the hemophilia community. And 00:04:59.779 --> 00:05:02.600 that's how I actually first learned about the 00:05:02.600 --> 00:05:05.660 history of the contaminated blood supply and 00:05:05.660 --> 00:05:09.019 how that impacted people who were using the national 00:05:09.019 --> 00:05:10.939 blood supply for treatment for their bleeding 00:05:10.939 --> 00:05:14.160 disorders, including hemophilia. Of course, I 00:05:14.160 --> 00:05:17.500 knew about Ryan White, but I was really shocked 00:05:17.500 --> 00:05:21.079 that I didn't know this history prior to that 00:05:21.079 --> 00:05:24.920 and began a pro bono research project to collect 00:05:24.920 --> 00:05:28.620 the voices of this community and how the contaminated 00:05:28.620 --> 00:05:32.439 blood supply impacts. So I've built a data set 00:05:32.439 --> 00:05:35.160 of over 80 interviews over the past seven or 00:05:35.160 --> 00:05:38.060 eight years from multiple perspectives, from 00:05:38.060 --> 00:05:41.519 mothers who lost children to HIV and AIDS, from 00:05:41.519 --> 00:05:44.379 the contaminated blood supply or siblings. But 00:05:44.379 --> 00:05:47.279 about six years ago, I started a project looking 00:05:47.279 --> 00:05:51.100 at people who are aging, who survived the contaminated 00:05:51.100 --> 00:05:54.980 blood supply and are now aging with a bleeding 00:05:54.980 --> 00:05:57.740 disorder as the first cohort to actually age 00:05:57.740 --> 00:06:00.050 with a bleeding disorder. For many of them, that 00:06:00.050 --> 00:06:03.709 includes an HIV diagnosis. And for most of them, 00:06:03.709 --> 00:06:07.129 that includes a diagnosis of hepatitis that most 00:06:07.129 --> 00:06:10.110 of them cleared in the 1990s with treatment. 00:06:10.370 --> 00:06:12.949 So it's very complicated. Aging is complicated 00:06:12.949 --> 00:06:16.990 anyway, but when you've been on the antiretroviral 00:06:16.990 --> 00:06:21.129 medications for 30 years, plus you have joint 00:06:21.129 --> 00:06:24.670 pain, arthritis, injuries from your bleeding 00:06:24.670 --> 00:06:27.149 disorder, it really complicates the process. 00:06:27.949 --> 00:06:29.829 Emotionally, there's a lot of trauma in this 00:06:29.829 --> 00:06:32.230 community. There's trauma in the bleeding disorder 00:06:32.230 --> 00:06:35.250 community, trauma from physical pain, emotional 00:06:35.250 --> 00:06:38.990 pain, being othered, stigmatized, socially isolated. 00:06:39.170 --> 00:06:41.810 And then there's the trauma from also having 00:06:41.810 --> 00:06:46.870 a diagnosis of HIV and AIDS, which was also stigmatized 00:06:46.870 --> 00:06:50.050 and not ever expecting to live this long. So 00:06:50.050 --> 00:06:53.029 this is a population who never really anticipated 00:06:53.029 --> 00:06:55.410 growing into older age. And for many of them, 00:06:55.410 --> 00:06:57.939 they did not prepare themselves for it. and are 00:06:57.939 --> 00:07:00.600 trying to navigate a health system and a medical 00:07:00.600 --> 00:07:03.959 system and a social system that is also not prepared 00:07:03.959 --> 00:07:06.959 to help them age. Thank you for your work. And 00:07:06.959 --> 00:07:09.139 Paul, would you care to answer to that question 00:07:09.139 --> 00:07:11.740 as well about the complications of the bleeding 00:07:11.740 --> 00:07:14.839 disorders? With regards to a bleeding disorder 00:07:14.839 --> 00:07:17.699 specifically, I am definitely going to defer 00:07:17.699 --> 00:07:20.540 to Sarah's expertise in that. But the only thing 00:07:20.540 --> 00:07:23.120 I will say is a bit of a counter. Yes, there 00:07:23.120 --> 00:07:25.639 are challenges that we associate with aging. 00:07:25.930 --> 00:07:29.189 but it is a huge age of opportunity as well. 00:07:29.189 --> 00:07:31.290 And we often undersell the contributions of older 00:07:31.290 --> 00:07:33.449 adults, but the contributions they make both 00:07:33.449 --> 00:07:36.490 economically, socially, and through a community 00:07:36.490 --> 00:07:39.449 cohesion is phenomenal. So we should think of 00:07:39.449 --> 00:07:41.250 it as a time of opportunity rather than just 00:07:41.250 --> 00:07:43.810 as a time of challenge. Excellent. And Paul, 00:07:43.810 --> 00:07:46.569 which leads me to my next question really is 00:07:46.569 --> 00:07:49.449 that we know that your area of research expertise 00:07:49.449 --> 00:07:52.649 is marginalized communities, such as those aging 00:07:52.649 --> 00:07:56.120 with HIV AIDS that also face additional challenges 00:07:56.120 --> 00:08:00.639 due to sexual orientation, race, gender, or socioeconomic 00:08:00.639 --> 00:08:03.199 status. How do you explain a little bit more 00:08:03.199 --> 00:08:05.439 about the intersectionalities and how they're 00:08:05.439 --> 00:08:08.639 impacted with the experience of aging? Yeah, 00:08:08.660 --> 00:08:10.540 no problem at all. Especially in this day and 00:08:10.540 --> 00:08:12.959 age, intersectionality is a word that many shy 00:08:12.959 --> 00:08:15.740 away from, but it really matters when it comes 00:08:15.740 --> 00:08:18.839 to people aging with HIV and AIDS because HIV 00:08:18.839 --> 00:08:21.759 doesn't exist in a vacuum. It's layered onto 00:08:21.759 --> 00:08:24.319 other identities and life circumstances that 00:08:24.319 --> 00:08:27.579 help us shape access to care and overall well 00:08:27.579 --> 00:08:30.240 -being. So when we consider HIV stigma and other 00:08:30.240 --> 00:08:33.320 stigmas like homophobia, racism, sexism, ageism, 00:08:33.519 --> 00:08:36.659 classism, etc., they stack rather than simply 00:08:36.659 --> 00:08:39.820 add. Therefore, older adults with HIV might face 00:08:39.820 --> 00:08:42.620 discrimination in healthcare, housing, long -term 00:08:42.620 --> 00:08:45.759 care facilities, and social services, which makes 00:08:45.759 --> 00:08:49.580 them reluctant often to seek help. So for LGBTQ 00:08:49.580 --> 00:08:52.809 plus individuals specifically, Ageing can mean 00:08:52.809 --> 00:08:54.870 returning to environments like nursing homes 00:08:54.870 --> 00:08:57.389 where they feel pressure to re -closet themselves 00:08:57.389 --> 00:09:00.070 for safety reasons. And these challenges can 00:09:00.070 --> 00:09:03.129 lead to increased isolation, delayed care access, 00:09:03.470 --> 00:09:06.049 stress and poor mental health. Linked to this, 00:09:06.190 --> 00:09:08.389 health disparities are also a concern because 00:09:08.389 --> 00:09:11.350 people who are ageing with HIV already have higher 00:09:11.350 --> 00:09:13.490 risks of things like cardiovascular disease, 00:09:13.970 --> 00:09:16.509 cognitive decline, frailty and multi -morbidities. 00:09:16.730 --> 00:09:19.730 These risks are often worse for racial and ethnic 00:09:19.730 --> 00:09:23.409 minorities because of standing inequalities with 00:09:23.409 --> 00:09:26.309 regards to healthcare access, healthcare quality, 00:09:26.730 --> 00:09:29.690 and treatment bias, which result in earlier onset 00:09:29.690 --> 00:09:32.769 of age -related conditions and more complex health 00:09:32.769 --> 00:09:34.649 management. And we talked a little bit about 00:09:34.649 --> 00:09:36.710 economic security, and that's a problem for older 00:09:36.710 --> 00:09:39.470 people who are living with HIV, especially women 00:09:39.470 --> 00:09:41.690 and people of colour, as well as those as part 00:09:41.690 --> 00:09:44.389 of the LGBTQ plus population, because they're 00:09:44.389 --> 00:09:47.210 more likely to have experienced interrupted careers, 00:09:47.830 --> 00:09:50.450 employment discrimination, and lower lifetime 00:09:50.440 --> 00:09:53.659 earnings which result in lower savings and stable 00:09:53.659 --> 00:09:57.500 housing and reliance on underfunded safety net 00:09:57.500 --> 00:09:59.970 programs. And all of this means that they have 00:09:59.970 --> 00:10:03.129 difficulty affording medications, food and transportation, 00:10:03.370 --> 00:10:07.350 which causes more troubles as they age through 00:10:07.350 --> 00:10:09.269 the end of part of their years. And linked to 00:10:09.269 --> 00:10:12.009 this, women with HIV, for example, they often 00:10:12.009 --> 00:10:15.049 face unique challenges like later diagnosis or 00:10:15.049 --> 00:10:16.850 they're more likely to have caregiver burden. 00:10:16.990 --> 00:10:19.370 And they're also massively underrepresented when 00:10:19.370 --> 00:10:22.470 it comes to HIV research. And specifically, when 00:10:22.470 --> 00:10:24.889 we look at transgender communities, these individuals 00:10:24.889 --> 00:10:27.690 may encounter barriers to gender affirming care. 00:10:27.879 --> 00:10:30.980 which is compounded by them HIV -related stigma. 00:10:31.620 --> 00:10:34.179 So, gender -related stigma results in these gaps 00:10:34.179 --> 00:10:36.759 in appropriate, culturally competent healthcare, 00:10:37.000 --> 00:10:39.480 as well as putting up higher mental health burdens. 00:10:39.740 --> 00:10:41.259 One of the big ones that we don't talk about 00:10:41.259 --> 00:10:44.360 is social isolation, because that can cause huge 00:10:44.360 --> 00:10:46.820 problems, where many long -term survivors may 00:10:46.820 --> 00:10:49.159 have lost partners, friends and community during 00:10:49.159 --> 00:10:51.679 the earlier waves of the early epidemic, and 00:10:51.679 --> 00:10:54.179 they might face family rejection, which is also 00:10:54.179 --> 00:10:56.799 more common for LGBT people, as they may have 00:10:56.799 --> 00:10:59.509 fewer additional caregiving networks, which increases 00:10:59.509 --> 00:11:02.009 the risk of loneliness, depression, and also 00:11:02.009 --> 00:11:04.190 a greater risk of cognitive decline. But despite 00:11:04.190 --> 00:11:06.769 those challenges, what we see is many older adults 00:11:06.769 --> 00:11:09.570 with HIV demonstrate stronger coping skills, 00:11:09.950 --> 00:11:12.529 activism in the community, and they have deep 00:11:12.529 --> 00:11:14.649 health literacy. So to answer your question, 00:11:14.830 --> 00:11:17.730 some intersectional identities really shape. 00:11:17.840 --> 00:11:21.860 HIV by amplifying the inequalities across health, 00:11:21.919 --> 00:11:24.480 social and economic domains, but they also shape 00:11:24.480 --> 00:11:27.600 resilience and they increase community bonds. 00:11:28.159 --> 00:11:31.179 So addressing these realities requires integrated, 00:11:31.399 --> 00:11:33.960 culturally responsive and anti -discriminatory 00:11:33.960 --> 00:11:36.480 practices across healthcare services and social 00:11:36.480 --> 00:11:40.059 policy. This is really eye -opening for me as 00:11:40.059 --> 00:11:43.019 a professor that is trying to work with young 00:11:43.019 --> 00:11:47.080 students and helping them to really examine all 00:11:47.080 --> 00:11:49.620 the the complexity behind working with clients 00:11:49.620 --> 00:11:54.279 that it's never just one matter. It's never as 00:11:54.279 --> 00:11:57.139 simple as this one solution. So thank you so 00:11:57.139 --> 00:11:59.559 much. Would you care to add anything, Sara? 00:11:59.960 --> 00:12:03.220 Well, I was thinking that it might be interesting, 00:12:03.480 --> 00:12:06.240 since this is a social work oriented podcast, 00:12:06.460 --> 00:12:10.360 to talk about the amazing activism that happened 00:12:10.360 --> 00:12:13.480 in the 80s and 90s in the communities impacted 00:12:13.480 --> 00:12:16.659 by HIV and AIDS. My short film, Gert's Boys, 00:12:16.759 --> 00:12:19.539 that's free to the public now, just Google Gert's 00:12:19.539 --> 00:12:22.240 Boys, which is about one of the founders of the 00:12:22.240 --> 00:12:26.100 AIDS quilt. I do try to weave stories about the 00:12:26.100 --> 00:12:28.139 social action organizing that happened in the 00:12:28.139 --> 00:12:33.019 80s and 90s. up the quilt, shanty, support groups, 00:12:33.559 --> 00:12:36.639 community supports, food kitchens to care for 00:12:36.639 --> 00:12:39.120 each other, right? The community that was impacted 00:12:39.120 --> 00:12:42.490 built these supports too. advocate for the government 00:12:42.490 --> 00:12:47.009 to provide funds to discover treatment for AIDS, 00:12:47.090 --> 00:12:49.509 but also to come together and support each other. 00:12:49.529 --> 00:12:52.409 As Paul had mentioned, many people were abandoned 00:12:52.409 --> 00:12:54.929 by family members and had lost friends. That's 00:12:54.929 --> 00:12:57.470 an important time for social workers to understand 00:12:57.470 --> 00:13:00.350 historically. I do think we need to understand 00:13:00.350 --> 00:13:04.309 our past to understand our present and have a 00:13:04.309 --> 00:13:06.929 pathway towards the future. Yeah, so I wanted 00:13:06.929 --> 00:13:09.610 to include that. I also wanted to share that 00:13:09.610 --> 00:13:12.559 my working on a second film right now which is 00:13:12.559 --> 00:13:16.720 on one of these support groups. that has existed 00:13:16.720 --> 00:13:19.620 for 39 years. It's called the Mothers of Bleeders 00:13:19.620 --> 00:13:22.500 Support Group. And this was a group of women 00:13:22.500 --> 00:13:27.120 whose children or partners or siblings were infected 00:13:27.120 --> 00:13:29.480 with HIV from the contaminated blood supply. 00:13:29.500 --> 00:13:32.700 And they built a support group that continues 00:13:32.700 --> 00:13:35.659 to meet every few months for 40 years. And they 00:13:35.659 --> 00:13:38.799 are aging together and losing members of the 00:13:38.799 --> 00:13:42.320 group, which is interesting to experience alongside 00:13:42.320 --> 00:13:45.980 them. Wow. Thank you so much. Again, so informative. 00:13:46.539 --> 00:13:49.340 Paul, I'd like to ask for your perspective. You 00:13:49.340 --> 00:13:52.299 know, I know that the HIV was technically the 00:13:52.299 --> 00:13:55.159 first pandemic in our modern scientific era. 00:13:55.320 --> 00:13:58.019 And I know that you and Sarah have presented 00:13:58.019 --> 00:14:01.980 research around how the COVID pandemic impacted 00:14:01.980 --> 00:14:05.039 those still living with the legacy of HIV pandemic. 00:14:05.440 --> 00:14:07.960 Can you share some of your research findings 00:14:07.960 --> 00:14:12.440 about this topic? Yeah, I think COVID was a real 00:14:12.440 --> 00:14:15.980 eye -opener for many, but it often unlocked a 00:14:15.980 --> 00:14:18.460 lot of packed away trauma for many of those people 00:14:18.460 --> 00:14:20.740 that had been through that initial HIV pandemic. 00:14:21.340 --> 00:14:24.559 So many people with HIV experienced interruptions 00:14:24.559 --> 00:14:27.059 to their routine care during the pandemic. when 00:14:27.059 --> 00:14:30.100 we experienced lockdowns, clinic closures, and 00:14:30.100 --> 00:14:32.460 shifted healthcare system priorities meant that 00:14:32.460 --> 00:14:35.000 there was disruption in antiretroviral therapy 00:14:35.000 --> 00:14:39.279 access, viral load monitoring, and HIV prevention 00:14:39.279 --> 00:14:42.639 services. So in some regions of the US, HIV testing 00:14:42.639 --> 00:14:45.779 and prevention programs were scaled back or paused, 00:14:46.320 --> 00:14:48.779 which slowed the progress towards early diagnosis 00:14:48.779 --> 00:14:51.600 and treatment goals. And in response, many programs 00:14:51.600 --> 00:14:54.840 implemented multi -medication dispensing. or 00:14:54.840 --> 00:14:57.340 home delivery or telehealth to try and maintain 00:14:57.340 --> 00:15:00.259 some community continuity of care. Multiple studies 00:15:00.259 --> 00:15:03.720 during that pandemic have studied and worked 00:15:03.720 --> 00:15:06.659 with people who are living with HIV and they've 00:15:06.659 --> 00:15:09.360 noted many mental health impacts. So for example, 00:15:09.419 --> 00:15:12.179 I talked about stress and isolation before. Where 00:15:12.179 --> 00:15:14.659 people experience these pandemic stresses, including 00:15:14.659 --> 00:15:17.600 fears around co -infection, social distancing 00:15:17.600 --> 00:15:21.659 and service disruptions, this exacerbated anxiety 00:15:21.659 --> 00:15:24.970 disruption. and psychological distress for people 00:15:24.970 --> 00:15:28.570 who are living with HIV. And that linked to a 00:15:28.570 --> 00:15:31.090 reduction in mental health care utilization. 00:15:31.269 --> 00:15:33.529 And when we look at large scale data in the US, 00:15:33.590 --> 00:15:36.690 it shows that mental health care visits decreased 00:15:36.690 --> 00:15:38.769 amongst people who are living with HIV during 00:15:38.769 --> 00:15:41.610 the pandemic, even as their needs were growing. 00:15:42.009 --> 00:15:44.769 And disparities were again larger by race and 00:15:44.769 --> 00:15:46.990 insurance status. And many people living with 00:15:46.990 --> 00:15:49.870 HIV already carried those histories of trauma, 00:15:50.009 --> 00:15:52.870 stigma and loss. And the pandemic pandemic's 00:15:52.870 --> 00:15:55.899 isolation. as likely to have re -triggered memories 00:15:55.899 --> 00:15:59.600 and stress linked to the early HIV years, compounding 00:15:59.600 --> 00:16:02.100 those mental health challenges. Interestingly, 00:16:02.580 --> 00:16:05.899 the dual pandemics also magnified existing disparities. 00:16:06.120 --> 00:16:08.559 So people who were living with HIV, who were 00:16:08.559 --> 00:16:10.820 also part of marginalised groups like racial 00:16:10.820 --> 00:16:13.620 and ethnic minorities, often experienced greater 00:16:13.620 --> 00:16:16.139 service disruption, greater mental health stress, 00:16:16.500 --> 00:16:19.519 and lower healthcare utilisation. And these structural 00:16:19.519 --> 00:16:22.299 inequalities shape not only HIV outcomes, but 00:16:22.299 --> 00:16:25.259 also the vulnerability to COVID -19 exposure, 00:16:25.700 --> 00:16:28.940 as well as severe illness, which again echoed 00:16:28.940 --> 00:16:31.399 the patterns that we've seen in the earlier HIV 00:16:31.399 --> 00:16:34.049 pandemic. So when we come to sum all this up, 00:16:34.090 --> 00:16:36.710 when you look at our research, the Covid pandemic 00:16:36.710 --> 00:16:39.490 impacted people who are living with HIV in multiple 00:16:39.490 --> 00:16:41.669 ways. It disrupted their healthcare systems, 00:16:42.110 --> 00:16:44.629 which revealed both vulnerabilities as well as 00:16:44.629 --> 00:16:46.730 innovations when it comes to service delivery. 00:16:47.110 --> 00:16:49.769 It exacerbated mental health challenges, especially 00:16:49.769 --> 00:16:52.730 where social support and care access were limited. 00:16:53.110 --> 00:16:55.990 But it also highlighted and deepened health inequalities, 00:16:56.450 --> 00:16:58.190 particularly for those marginalised communities 00:16:58.190 --> 00:17:01.100 we talked about. And it reinforced public health 00:17:01.100 --> 00:17:03.679 lessons that we learned from that HIV pandemic 00:17:03.679 --> 00:17:06.460 about the importance of community led approaches, 00:17:07.039 --> 00:17:09.980 equity focused responses, and also resilient 00:17:09.980 --> 00:17:13.819 healthcare systems. So where are we now versus 00:17:13.819 --> 00:17:17.000 where we were with HIV AIDS and where are we 00:17:17.000 --> 00:17:20.240 going under the current federal healthcare changes? 00:17:20.539 --> 00:17:22.680 I don't know, Sara, if you'd like to answer 00:17:22.680 --> 00:17:26.359 that and maybe Paul. I think Paul is more versed 00:17:26.359 --> 00:17:29.880 in the statistics, but I will say I am very frightened 00:17:29.880 --> 00:17:32.500 about what is happening politically right now. 00:17:32.799 --> 00:17:37.799 In order for someone's HIV diagnosis not to become 00:17:37.799 --> 00:17:40.480 an AIDS diagnosis, they have to have the medication 00:17:40.480 --> 00:17:42.960 to treat it. And in order to have the medication 00:17:42.960 --> 00:17:45.099 to treat it, they have to have health insurance 00:17:45.099 --> 00:17:49.839 and access to the medication. So I'm very concerned 00:17:49.839 --> 00:17:53.059 about what this is going to look like in the 00:17:53.059 --> 00:17:55.380 coming years. But Paul, I think you have more 00:17:55.380 --> 00:17:58.819 information on projections of that. Yeah, to 00:17:58.819 --> 00:18:01.759 say it's a scary time is a little bit of an understatement, 00:18:01.799 --> 00:18:04.400 to be honest with you. We're looking at reductions 00:18:04.400 --> 00:18:08.279 in HIV funding. That's not just research in service 00:18:08.279 --> 00:18:11.450 delivery as well as service prevention. As part 00:18:11.450 --> 00:18:13.650 of the Los Angeles County Commission on HIV, 00:18:14.049 --> 00:18:16.930 we're responsible for allocations of those funds 00:18:16.930 --> 00:18:19.589 and we're really struggling to meet the needs. 00:18:19.630 --> 00:18:21.829 We know that, for example, the Department of 00:18:21.829 --> 00:18:24.710 Health has cut the budgets for service delivery 00:18:24.710 --> 00:18:27.130 and as well as any of these interventions that 00:18:27.130 --> 00:18:30.029 help keep people well. As Sarah said, what's 00:18:30.029 --> 00:18:32.450 really important is trying to not just get people 00:18:32.450 --> 00:18:36.029 into care, but keep them in care. It's that continuum 00:18:36.029 --> 00:18:37.950 of care that we're really, really interested 00:18:37.950 --> 00:18:40.670 in and that can be linked. to people's insurance. 00:18:41.009 --> 00:18:43.130 It can also be linked to people's willingness 00:18:43.130 --> 00:18:46.490 to engage with services, the targeting of certain 00:18:46.490 --> 00:18:49.190 groups by immigration services, for example, 00:18:49.650 --> 00:18:52.769 regardless of immigration or migration or citizenship 00:18:52.769 --> 00:18:56.460 status. People are afraid to go and collect what 00:18:56.460 --> 00:18:59.279 they need. They're afraid to go to screenings, 00:18:59.380 --> 00:19:02.480 they're afraid to go to support groups. So we 00:19:02.480 --> 00:19:05.440 know people are dropping off. When we see Medicare, 00:19:05.519 --> 00:19:09.680 Medicaid cuts, when we see the reduction in Affordable 00:19:09.680 --> 00:19:12.859 Care Act subsidies, we know that is going to 00:19:12.859 --> 00:19:15.220 impact people who rely on those medications. 00:19:15.539 --> 00:19:18.380 And yeah, we're starting to look now, not that 00:19:18.380 --> 00:19:21.660 ending the HIV epidemic, but modelling how many 00:19:21.660 --> 00:19:24.569 people are going to die from HIV AIDS. That just 00:19:24.569 --> 00:19:27.549 wasn't in the narrative even 12, 24 months ago. 00:19:27.660 --> 00:19:30.240 Well, this is such important information and 00:19:30.240 --> 00:19:33.980 I do encourage our listeners to continue to learn 00:19:33.980 --> 00:19:37.440 about the topics, get involved. I know sometimes 00:19:37.440 --> 00:19:40.059 people are feeling very discouraged at this time, 00:19:40.059 --> 00:19:43.019 but this is not a time to be paralyzed in our 00:19:43.019 --> 00:19:45.460 fear. We need to continue to educate ourselves 00:19:45.460 --> 00:19:49.619 and what we can do to get involved. So as we 00:19:49.619 --> 00:19:54.240 begin to wrap up our discussion here today, is 00:19:54.240 --> 00:19:58.039 there anything else that we haven't talked about 00:19:58.039 --> 00:20:00.619 that maybe our listeners would like to know about 00:20:00.619 --> 00:20:04.160 this topic of aging with HIV and AIDS. I'll start 00:20:04.160 --> 00:20:08.319 with Sara and then Paul, please. I do believe 00:20:08.319 --> 00:20:11.480 that we are living in a historical time where 00:20:11.480 --> 00:20:16.000 history is being rewritten and erased and our 00:20:16.000 --> 00:20:18.920 younger generations really don't know their history. 00:20:19.339 --> 00:20:23.619 Very well. So I encourage our audience to travel 00:20:23.619 --> 00:20:27.299 back in time, learn about HIV and AIDS in our 00:20:27.299 --> 00:20:30.759 country and internationally, learn about how 00:20:30.759 --> 00:20:34.059 our government responded to or did not respond 00:20:34.059 --> 00:20:38.099 to the crisis and learn from those lessons and 00:20:38.099 --> 00:20:41.420 have hope. This was an amazingly powerful movement. 00:20:41.680 --> 00:20:43.900 There are long -term survivors. We can learn 00:20:43.900 --> 00:20:46.839 from them. And you're right. We have to have 00:20:46.839 --> 00:20:49.990 hope as we look forward. Excellent, thank you 00:20:49.990 --> 00:20:52.950 Sarah. Paul, any final thoughts? Yeah, I really 00:20:52.950 --> 00:20:55.210 want to echo what Sarah said is we've talked 00:20:55.210 --> 00:20:58.390 about intersectionality and each one of these 00:20:58.390 --> 00:21:01.230 communities is massively resilient. This is not 00:21:01.230 --> 00:21:03.809 the first time and it is unlikely to be the last 00:21:03.809 --> 00:21:06.720 time. that they are targeted by people in power. 00:21:06.960 --> 00:21:09.359 These communities do not fall. These communities 00:21:09.359 --> 00:21:12.160 stand together. They build in strength. What 00:21:12.160 --> 00:21:14.059 we need to make sure as people that are coming 00:21:14.059 --> 00:21:18.259 from a position of privilege is that we look 00:21:18.259 --> 00:21:22.319 towards inclusivity. We look towards representation, 00:21:22.480 --> 00:21:26.640 but it's not tokenistic. We need to have meaningful 00:21:26.640 --> 00:21:30.450 engagement. It's not just about. having people's 00:21:30.450 --> 00:21:33.289 voices around a table, it's about putting people 00:21:33.289 --> 00:21:36.910 with those voices in positions of power to make 00:21:36.910 --> 00:21:39.809 real change. We need to meet people where they're 00:21:39.809 --> 00:21:41.930 at, but we also need to make sure that we've 00:21:41.930 --> 00:21:45.109 got the resources to enable people to get ahead 00:21:45.109 --> 00:21:47.450 of the growing need that we're facing. We are 00:21:47.450 --> 00:21:50.630 heading rapidly towards 70 % of the people who 00:21:50.630 --> 00:21:53.369 are living with HIV being older adults. That 00:21:53.369 --> 00:21:57.430 is a success story. But we still have much we 00:21:57.430 --> 00:21:59.750 don't know about aging with HIV, whether that 00:21:59.750 --> 00:22:03.009 is long -term survivors or people who are acquiring 00:22:03.009 --> 00:22:06.130 HIV in later life. We need to get our heads around 00:22:06.130 --> 00:22:09.009 the fact that people over the age of 60 have 00:22:09.009 --> 00:22:12.609 sex. We need to talk about sexual health at all 00:22:12.609 --> 00:22:16.589 ages. And we need to remove this stigma of ageism. 00:22:16.799 --> 00:22:19.720 when it comes to engaging people in health care 00:22:19.720 --> 00:22:22.619 and make it less about dollars and make it more 00:22:22.619 --> 00:22:24.960 about person -centered meaningful care. Love 00:22:24.960 --> 00:22:27.859 that. I mean, I'm taking notes here and thinking 00:22:27.859 --> 00:22:30.859 about, you know, there's much to be celebrated 00:22:30.859 --> 00:22:34.240 in the work that you've done and it has taken 00:22:34.240 --> 00:22:36.839 place so far, but there's still much more to 00:22:36.839 --> 00:22:38.880 go. Yes, please, Paul. Yeah, the only thing I 00:22:38.880 --> 00:22:40.519 was going to say is I'm going to hold Sarah up 00:22:40.519 --> 00:22:43.690 as opposed to child here is. there is huge amounts 00:22:43.690 --> 00:22:46.789 that gerontology and social work can do together. 00:22:47.029 --> 00:22:49.289 And Sarah and I, we show this, and I've worked 00:22:49.289 --> 00:22:51.069 with several colleagues in the School of Social 00:22:51.069 --> 00:22:54.849 Work, and we are a powerhouse together. Very 00:22:54.849 --> 00:22:58.470 rarely do we actually work together. A USC is 00:22:58.470 --> 00:23:02.349 a powerhouse of silos, but we are, again, like 00:23:02.349 --> 00:23:04.190 these communities, these intersectional communities, 00:23:04.369 --> 00:23:06.269 we are stronger together. And I would really 00:23:06.269 --> 00:23:08.410 encourage people who are listening to this, if 00:23:08.410 --> 00:23:10.680 they're social workers. Go and bug the School 00:23:10.680 --> 00:23:12.759 of Gerontology. Go and speak to people that work 00:23:12.759 --> 00:23:15.099 in Aging Services. And similarly, people that 00:23:15.099 --> 00:23:17.559 work with older adults. Get that social work 00:23:17.559 --> 00:23:20.450 perspective. These are unique. but really complementary 00:23:20.450 --> 00:23:24.210 approaches. Yes, beautifully said. We are stronger 00:23:24.210 --> 00:23:27.670 together as a society. We must continue to educate 00:23:27.670 --> 00:23:31.349 ourselves, to work collaboratively with our partners 00:23:31.349 --> 00:23:35.250 within the university and outside. And really, 00:23:35.529 --> 00:23:38.670 again, this is no time to give up, right, to 00:23:38.670 --> 00:23:41.410 maintain that hope. So incredible, incredible. 00:23:41.549 --> 00:23:44.589 I wish we had more time. I'd like to thank you, 00:23:44.630 --> 00:23:47.390 Sara and Paul, for joining us for this very 00:23:47.390 --> 00:23:50.640 important and critical discussion. If you would 00:23:50.640 --> 00:23:53.619 like more information about the USC School of 00:23:53.619 --> 00:23:58.079 Social Work, please visit dworakpeck.usc.edu. 00:23:58.660 --> 00:24:00.619 And if you're interested in learning more about 00:24:00.619 --> 00:24:05.119 aging and gerontology, please visit gero.usc.edu. 00:24:05.119 --> 00:24:09.539 And if you'd like to network with our guests 00:24:09.539 --> 00:24:12.799 regarding their work or want to support our transformative 00:24:12.799 --> 00:24:17.180 research and programs, please email us at listenuppeople@usc.edu. 00:24:17.180 --> 00:24:20.779 Thank you.