Dean Jackson: HIV Program Manager

Hello, this is Nick Vargas from the source LGBT plus center. And you're listening to queer goggles.

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On this episode we're going to be talking with Dean Jackson HIV program manager for the source. Oh , my name is Dean Jackson. I use he him his pronouns. I'm the HIV program manager here at the source. And so how long have you been doing this? Um, I've been, I started volunteering with the source the day we opened and I've been involved ever since. Uh, and the HIV program probably came six to eight months after we opened. So it sounded like the HIV program has evolved as time has gone on. What, tell us about that program. What do you do currently? So I run a HIV peer support and social group called HIV. I p . And in the beginning it was literally just me sitting in a room by myself waiting and hoping for people to show up. And that lasted a couple months and eventually now I have 20 people on the text remind list and an average of anywhere between for four to 10 show up twice a month. That's great. And what happens in these , uh, HIV IP support groups. So we talk , uh , first we check in to see how everyone's doing. If anyone has any, you know, issues that they need help with and you know, relating to their HIV status, whether that be looking for a doctor pharmacies and just, we bounce ideas and resources off each other cause a lot of like we all know something that another person doesn't know. So that's why it's important that we all come together and discuss these things. Cause what I liked the resources I have someone else may not be aware of and they may be aware of a completely something completely new that I didn't even know existed. So that sounds great. Can you share with us maybe some success stories or things that stick out in your mind that you've shared with each other? Uh , it was probably two years ago. I got a phone call from someone saying that , uh , they had just tested positive for HIV. They didn't know what to do, where to go, what doctors, they were completely lost. I didn't know this person. Um, I met up with them the next day , um , gave him a list of doctors. At that time there was only one in Tillery county and he was spread so thin that it often took three to six months just to see the doctor. So I gave him a list of other doctors outside of our area. Um , he was able to get in next week. He did have to drive an hour away, but he was put on medication immediately. He became undetectable within I think four to six weeks. And now he lives up in Sacramento and he's involved , um , with the LGBT center up there and HIV groups up there and he's doing great. Wow, that's , that's great work. I imagine getting a diagnosis, like being positive with HIV is a big deal and part of your work is supporting people through that. And then also running the HIV peers support group. What else is part of your HIV program here at the source? So I do a lot of outreach. I will talk to honestly anyone who will listen to me. Um , about HIV, about testing, about prep and pep cause a lot of people, especially in our area still don't know what prep and pep is. So I'll go to high schools, I will go to no board meetings. I will, any group of people I will talk to cause they will tell their friends, they will tell the family and the word will just spread anybody's listening and they want dean to come out and talk to them. He'll come talk to you. I will. And for our audience we have a large audience and some of them don't know what prep and pep are . Can you explain those? Yes . So prep is a once a day pill that someone who is negative can take everyday . It stands for pre exposure prophylaxis and the medication is called Truvada. And it is FDA approved for anyone who weighs at least 77 pounds or more. So there's no age restriction. It is completely safe. Um , someone, they do have to see a doctor every three months to be tested to make sure they're still negative and pep, which stands for postexposure prophylaxis is a pill that someone can take if they were exposed to HIV and, but that pill has to be taken within 72 hours within three days of the exposure and it's a 28 day regimen. Someone would have to go to either an emergency room or an urgent care. You need to be seen quickly. If you make an appointment with your doctor, they may not be able to see you for a week and by then you've missed that window. Can you tell us how effective prep is and also talk about what are some of the barriers living here in a rural community. So prep is up to 99% effective in preventing an exposure to leading to an infection when taken as prescribed and taken as prescribed is taken every day with or without a meal, morning or night, and barriers to getting prep, unfortunately in our area are high. A lot of providers don't know about it. They don't know it exists. They think that a specialist must prescribe it and so they'll make a referral to a specialist. This specialist says you don't have HIV, you need to go back to your doctor. And he sent them back to their doctor and it ends up being a constant roller coaster merry-go-round. So another part of my job is talking to providers, giving them education about prep and pep and showing them how to prescribe it. I know when I was in San Francisco, prep was easy to find, just went down to the community clinic and they would prescribe it to you. Uh, how do people find that here? I'll, unfortunately that's not the case here. Uh , what I do is tell people if they're looking for prep to call me and I will find a provider that will prescribe it current. You can go to , um, please prep me.org prep locator.org and if you would've searched six months ago in our area, nothing came up for, I want to say maybe 30 to 50 miles. But now , uh, planned parenthood has been listed and it's free. You just fill out a form online and it gets reviewed and they get listed on resource sites. Um , also Omni family health, I believe it was just listed on there. So we're slowly getting people listed on there so that people don't have to call me and people can just jump online, find a provider and get what they need. So if a provider wants to sign up on that list, how can they do that on those websites? Please prep me.org and prep locator.org . There is a link somewhere on the main page saying if you would like to be listed as a provider and you click that and fill it out. And it's very easy. Dean, can you walk us through your HIV program here at the source from sort of start to finish, if you will? Yeah , so we just recently started HIV testing. We use the oral quick rapid HIV one two antibody test and that has had a great response. People are making appointments, people are coming in. We the two days that we tested, we tested 14 people altogether , seven on each day. That's great. Um, if someone does come back HIV negative nonreactive, then I'll counsel them on other prevention methods, give them free information on prep and pep and they can also sign up with us through eight app, which is Aids drug assistance program for prep assistance , which helps cover the cost of prep because a lot of people don't know about prep is very, very expensive. How expensive? About $2,500 if you are paying out of pocket. Wow. A month. A month. That's crazy. So okay, so they can get assistant to buy this by prep. So even if someone has insurance, good insurance and their insurance covers 80% of the prescription, 20% of $2,500 is still a lot of money. Yes. So they can, I can sign them up for these programs, which will cover the cost that their insurance doesn't cover. If you have medical, it's covered at 100%. So if someone does come back and test preliminary positive, they need to go get a confirmatory test either at one of our partner labs or with their primary care physician. If they come back positive from that confirmatory test, they could , um , meet with me, join the group, and I could also sign them up for AIDAP, which again is aids drug assistance program. AIDAP does the same thing that prep assistance program does, but for HIV medications, HIV medications can run up to $4,500 if you're paying out of pocket with no insurance a month. So eight app covers the costs that insurance doesn't, or if the person doesn't have insurance, it will cover the cost of the medication completely. It will also pay for health insurance. So if somebody has health insurance insurance through their employer, if the employer is willing to accept the money from California Department of Public Health, that employee will not have to pay for their health insurance. That's great. And it will also, if someone doesn't get offered health insurance through their employer, they sign up for a covered California through the affordable care act and AIDAP will pay their monthly premium as well. Living with HIV, people probably need support like eight app. Are there other resources that help people living with HIV? So there's um , other groups. There are uh , other Ryan White programs that help cover like rent assistance, utilities help cover the cost of food. Um , and a lot of people don't know that these programs exist and unfortunately it still happens where people pass away because they don't have access to their medication. Just recently, like two weeks ago, I got a call from a friend and her friend had passed away because his doctor switched him to the most recent medication, one that I do recommend a lot [inaudible] Harvey and it was too expensive. The insurance wouldn't, well the insurance did cover it, but only covered it at a percentage. So he was expected to pay I think like 30 or 40% of that $4,500 a medication. And so he didn't have access to his medication and he passed away. And would a program like AIDAP have helped him? Yes, it would have covered that cost 100% and he just didn't know about it. Right. And he died. Correct. So something I want to start doing is outreaching to pharmacies, outreaching to pharmacists and medical staff so that they know that aid app exists so that they know that these programs exist so that people have access to them because this death could have been prevented. That's really sad. I didn't know that. So a sounds like HIV is still an issue in our community. Uh , we had the chance on our last episode of Queer Goggles to listen to Ruth coker Berks talk to the source and you were able to participate in that. Can you share what that was like for you and , and some takeaways? It was very eyeopening because I live in a generation , um, you know, when I was diagnosed and I'll back up a little bit. Um, I was diagnosed with HIV in January of 2015 and I've known nothing but easy access, access to my medications, being undetectable, not having any health issues, not watching any of my friends pass away. HIV to me in this day and age is manageable, more manageable than a lot of other health issues. So my take on HIV is much different than someone else's take on HIV. You know, those who watch their friends and family die of AIDS who didn't have access, there was no medications, there was nothing. Um , so hearing her speak, you know, and sharing what she's seen and sharing what she did, it was really eye opening and helped me to better understand and to be more sensitive about it because I unknowingly was not offending people. But a close friend pulled me aside one day and said, cause I was talking about HIV and how manageable it is. And my intent was to help people understand more and not be so afraid if they do test positive. But what was being interpreted was the , Oh, it's no big deal now. And that's not what I meant. But he pulled me aside, thankfully and told me and said, you know, you didn't watch your friends die, you didn't see what I saw. Like it is a big deal and I'm thankful for that because the last thing I want to do is offend someone. At the same time I want to educate people so that they know how treatable it is and they know that someone like myself is gonna live a very, very long time and I'm going to die of old age. I'm gonna die of something completely unrelated to my status is so long that I have access to my medication. Right. So it sounds like balancing that fine line of honoring those people who died of aids and the people who took care of them and also reducing stigma around living with HIV. I'm very, very open about my status. I will tell a stranger on the street not for any other reason other than helping to remove the stigma. I'm pretty healthy. I'm the healthiest I've been in my entire life because I take care of myself now. So I'm very open about my status to help remove that stigma that's attached to HIV. Dean , I want to thank you for coming and talking to our youth leadership academy about HIV and that movie we watched how to survive a plague. Can you tell us a little bit about their reactions to to that movie? Yeah, of course. Um, so first you're welcome. I , like I said, I will talk to anyone who will listen, especially youth. Um, so we did watch how to survive a plague and if the audience is unfamiliar with HIV, with what it was like in the eighties and nineties, you can go to youtube and search how to survive a plague and it's , I believe like a 90 minute documentary and it covers everything from start to finish. So I would highly recommend viewing that to get a better insight. How it was back then. Yeah. When that , when I watched that movie, I was shocked at the lengths activists had to go through to get the medical community to take HIV seriously. The government didn't want to look at it. National Institutes of health didn't want to look at it. And they had to do drastic measures. They had to chain themselves to buildings march in the streets just to get people to pay attention to what was viewed then as a gay disease. So looking at videos like that, like I'm , I'm so grateful for those people who have come before us because without those people, people might still be dying high , might not be here today. Earlier you mentioned undetectable. What does that mean? Someone like myself who is HIV positive and takes their medication as prescribed every day they can become virally suppressed. And what that means is that the medication is working and the virus cannot be detected in my blood with modern day labs. So typically it's 200 copies of the virus per microliter of blood and someone who is virally suppressed, it cannot be detected. And in turn, I cannot transmit the virus to anybody. In October, November, 2017 the CDC came out with u equalsU , which stands for undetectable equals transmittable. So again, someone like myself who's virally suppressed, I posed no risk to anyone so long that I take my medication and remain virally suppressed treatment as prevention. So what you're saying is if that somebody takes their medication as prescribed and their viral loads reached an undetectable status, which is 200 copies or less, then they can't transmit HIV to anybody else? That is correct. Yeah. My partner used to take prep, but since the CDC came out with the u equals u campaign, he no longer does because he doesn't have to. But if everyone who was negative was on prep, if everyone who was exposed received pep, and if everyone who was HIV positive had access to medications and achieved an undetectable viral load, we would have no more HIV by 2030 so we can end HIV in our lifetime. Yes, it's very possible. But access is a huge barrier for most people. So people want to learn more if they want to know what's available for them. If they're negative or they're positive, how do they get in contact with the how or how do they learn more? So if they're local in the central valley , um, they can reach out to the source. They can call us. You can email me, you can go to the source lgbt.org and find my email address or if you're outside of the area, contact your local LGBT center and they should have all the information for you and if not I'll find someone who does. Wonderful. Well Dean, thank you so much for joining us. I've learned a great deal. Your work is so important especially when you put in that perspective that people are still dying of aids and they don't have to. It's just about getting the access and getting the knowledge. Yes, and we're working on expanding this knowledge and access. I'm going to be starting a another HIV peer support and social group in August and it's going to be monthly, the first Thursday of every month from five 30 to six 30 at kings county behavioral health. I just love the work that you're doing with this important topic here in rural central California. Thank you for joining us today on the queer goggles. We appreciate you so much. Thank you for having me.

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If you like what you heard, please consider supporting us with the tax deductible donation at www, the source lgbt.org/donate until next time, this is Nick Vargas with the source LGBT plus center, and thank you for listening to queer goggles.

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