Interview with Cascade AIDS Project
We began our blog series for Pride month with an exploration of the overlapping histories of Pride, HIV activism, and medical marijuana programs. In this installment I interview Owen O'Neill, a peer support lead at Cascade AIDS Project. Cascade AIDS Project has been operating since 1983, and is the Pacific Northwest's oldest and largest provider of services such as housing, advocacy, support, and education to those impacted by HIV.
The mission of The Client Corner blog is to spread empathy and education amongst the cannabis, patient, and healthcare provider communities. I thought Cascade AIDS Project could provide a valuable perspective on what it's like to serve those who live with a chronic condition, survived one epidemic, and now live in a pandemic. Owen's interview hit this out of the park, and I am so thankful for his generosity in sharing his experience and work. He also provides information on other resources in Oregon and southern Washington that may be helpful to our readers.
Thank you to Owen and all those at Cascade AIDS project for being part of our blog!
CCN: Tell us a little bit about yourself, how you got involved with Cascade AIDS project, and what you do at Cascade. Owen: So I came out in 1980, I was at the beginnings of the AIDS epidemic, even before it was given the HIV/AIDS name, we called it the gay cancer in the early years. In the late 80s to the mid-90s, half of my friends had died from AIDS including a boyfriend. At the time, we were a serodiscordant couple. Throughout this time, I was working in various corporations and excelling. In 2006, I was diagnosed with HIV. The doctor told me, handed me a card to a specialist and left the room, I got up and went back to work. I never forgot how the information was delivered or how I felt. I didn’t realize how I was suddenly viewing things so differently, work felt cold, harsh and impersonal but I was also in the trap of a great job and income. I did plan however, to leave the corporate world and do something that gave back when I turned 55, I did it at 54. I walked away from a job I loved in Boston and moved to Portland to be near my closest friends who started moving to Portland over the last 8 years. Before I moved to Portland, I called Cascade AIDS Project to help me navigate getting health insurance. The navigator did it all, made getting health insurance outside of a private company for the first time in my life so easy and understandable. A few weeks later, I saw a peer support posting at CAP and applied.
CCN: In your work with peer groups, what the most common challenges newly diagnosed people face? How might being part of a peer group help navigate those challenges? Owen: Biggest challenges are the mental health issues that arise (depression, anxieties) and having no one to talk to. People understand cancer and such, but HIV comes with so many societal shaming viewpoints that often people won’t tell family or friends. It’s really common, they are isolated and alone with their HIV. Navigating services, treatments, understanding HIV (removing our learned personal biases and understandings to a fact base approach) . Who are the best doctors, clinics, do I have the right health insurance, can I afford the meds, what are copays, what are the side effects, will I ever date again, will I lose my job of someone finds out - I have often found there are multiple worries all at the same time.
Peers have been through this - systemic navigation becomes the easier part, we know the services and the experts to help remove those worries. The personal, mental challenges are more difficult but the Peers understand where they are, we are the sounding board, we share our experiences and normalize the feelings they may have. It’s a very nonjudgmental interaction. Being present for them is sometimes the best mental health care they need, they know they aren’t alone.
CCN: There are now people who have been living with HIV for decades who are survivors of the initial HIV epidemic in the US. In the midst of the current COVID-19 pandemic, how has Cascade AIDS project adapted services to support this group and others continue to live and age well? Owen: CAP has continued almost all services with the adjustment to phone calls and a lot of Zoom meetings. We have people who are in their 30s who have been HIV positive for 20 plus years, so the length of time with HIV varies within ages. What we are learning is that when HIV is under control (undetectable and 200+ T-cells) COVID-19 doesn’t have any difference of an impact to a non HIV counterpart. For our older HIV participants and those with comorbidities it has presented a challenge. Our Aging Well program continues to serve the community with the same meetings / contacts but all online and Zoom meetings. CAP has put a lot of homeless participants with health issues in hotels, on Wednesdays there is a large number of food boxes that get delivered to peoples' doors by the staff, we have signed a lot of people up for food deliveries from the Sunshine Division and we have mailed PPE to many participants. We have helped a lot of people with rental assistance for those who’ve lost jobs and we are still connecting our participants to mental health providers, doctors, insurance, addiction services and housing. I’ve been impressed at how quickly CAP adapted.
CCN: Across the entire healthcare continuum - from physicians, to herbalists, to dispensaries - what do you wish all providers better understood about serving people living with HIV? Owen: Great question. Really depends on where a person’s HIV journey is. Newly diagnosed people will not only be dealing with HIV but also guilt, shame and fear of people finding out that often comes with this disease. Providers in our health system are often too clinical, time strapped and lacking knowledge of resources for people. For providers, being patient and explaining HIV in laymen terms people speak and understand, the various types of treatments available and allowing the person to pick what treatment they want gives back some power over their health. Normally, the provider writes a prescription (too often at the direction of a drug company) rather than talk about the dozens of effective meds that are available. For all people living with HIV, it's treating the whole person, all health, including mental health rather than just the HIV. Community partners is a harder one to define. I don’t think most people with HIV tell their dispensaries. About a 3rd of participants in the program I work with use cannabis to varying degrees and varying reasons. Educating oneself when engaging someone with HIV, being fact based rather than pop culture knowledge is primary. You can't catch HIV from shaking someone’s hand, it’s not airborne and won’t live on your counters. Never ask a person things like “how did you get it” or “do you know who gave it to you” or sadly “how long do you have to live”. People with HIV are now living the same length as others, that’s not widely known still. Know the difference between when it’s HIV and when it becomes AIDS.
CCN: Are there other local resources you'd recommend our readers check out to learn more about how to get involved and learn more about living with HIV? If someone is newly diagnosed, are there any resources (at Cascade or elsewhere) you'd recommend getting in touch with for support? Owen: Below are links to the primary resources I utilize, some are not just for HIV but all are highly engaged around HIV and safe places for the HIV population to go.
HIV Day Center - Drop-in center with food and other support resources Esther’s Pantry / Tod’s Corner – Food and Clothing OHSU Partnership Project CAREAssit – Helps with medical bills Prism Health (part of CAP) Outside in – Youth oriented services Multnomah County HIV Clinic Quest Center – Mental health and addiction services Oregon Health Authority - HIV care, treatment and housing services Q Center - Drop-in center, support groups