Terri Wilder: Can you talk about your first memory of hearing about this disease called AIDS?
Maggie Snyder: Well, my first memory was when I was working at Holy Cross Hospital as a registered nurse and it was a new disease, and people were talking about it, and a lot of nurses didn’t know what it was.
TW: And Kristen, what’s your memory?
Kristen Ries: Well, as you mentioned, I read about it in MMWR first, and then in other journals, and, actually, I met the first person that was going to have HIV in 1981 soon after I started working. At that time, that person did not have HIV, but got it in 1982.
TW: Do you remember what your first reaction was the first time you took care of a person with HIV?
KR: I was so excited about this disease the first time I ever heard about it, because of my infectious disease background. I think it was the most fascinating illness and epidemic and I’ve always been interested in pandemics and epidemics. And so that’s what really dragged me into it, is it was also what I was trained to do.
TW: And Maggie, what about you?
MS: Yeah, I don’t remember the first person I cared for with HIV. But I remember working in the hospital, and nurses wouldn’t go into patients’ rooms. And I’m a person that always thinks everybody should get care. And so I wasn’t fearful. I didn’t understand why the nurses didn’t go in. As nurses, we took an oath to take care of people. And to me, that meant you took care of—of everybody.
TW: So can you tell me a little bit more about what was happening in the early years of the epidemic in Salt Lake City? What was happening? Was there general fear about the disease? Was there not much known about it, or were people rallying around to help? Or were just you and I guess the nuns the only ones really responding?
MS: You know, Salt Lake City is a conservative area and has a predominant religion. And there were not many people who stepped up at the time, because people were really afraid. And I remember nurses saying, “Well, I can’t take care of that patient, because my husband doesn’t want me to spread it to him and our children.” And it was a time when gay people were in the closet and had a lot to lose in terms of jobs, insurance, or livelihood. And also the other people that got HIV—people with blood transfusions, surgeries, hemophilia—they lost their care providers, and they all ended up in Dr. Ries’ private practice. And so we learned a lot of different kinds of medicine, how to take care of people with hemophilia. We learned about drug addiction. We learned about sex workers. And we took care of everyone. It wasn’t just the gay people, although that was the predominant group that was affected.
KR: And still is. It’s still primarily a man’s disease here in Utah to this day.
TW: So what was your relationship to gay men prior to taking care of gay men with HIV? Did you have relationships with gay men?
KR: I didn’t have relationship with anybody. I was just new to Salt Lake, and I’m working, taking care of people. And when I first learned about this disease, I was so excited about it, and I knew that it was going to be here. And so I studied up on that, and I also didn’t know that much about gay health, to tell you the truth. And so I started up on that, and actually at FHP, I gave a lecture on gay health so that everybody could be a little bit educated. It was medical, so I didn’t think that much of it. I’m sure that looking back, in retrospect, people thought I was whacked.
TW: So what were some of the challenges during the early years of taking care of gay men with AIDS?
KR: One was, it was medically very challenging because of all the new diseases that you hadn’t seen much of. And then also financially, because the patients, if they hadn’t lost their job, they did and they lost their insurance. And so if it wouldn’t have been that the hospital was being supportive, we would have drowned. We never made a lot of money in that practice at all. But the hospital really helped. We were able to set up a group with the Sisters of the Holy Cross in our private practice, in which they actually, you know, got the priest involved, and the nuns and everybody were doing all kinds of social work and things to help the patients. I mean, they were just unbelievably fantastic to work with.
MS: There was a couple of gay guys and Dr. Ries who started AIDS Project Utah. They developed a buddy system, because in those days, there was not home health that would go see people with HIV. They developed a buddy system that would go and sit with people, would do grocery shopping for them. However, they did help prepare meals. And then AIDS Project Utah evolved into Utah AIDS Foundation, which is still active today. There was a woman named Patty Reagan who was a Ph.D. at the University of Utah at the College of Health, and she did a lot of community education. Back in those days, she talked about the “C word,” which made the editorial in the Salt Lake Tribune—and the C word is condoms. We weren’t allowed to talk about condoms publicly. At least the conservative culture didn’t appreciate it.
KR: Yeah, we were really busy. And in those early years, like the first 10 years, well even now, I still do a lot of lecturing on HIV/AIDS to physicians. Back then, it was just trying to convince them that they could do HIV. People were truly afraid. I didn’t realize that at first, because I just wasn’t afraid. We did hundreds of talks for free all around the state and neighboring states to try and educate health care workers, PAs [physician assistants], nurses, everybody. And we went to the funeral homes and educated the funeral directors. The university had chosen not to do or have anything to do with it. If somebody showed up on their step, they would care for them. They, then, oftentimes, would send them to us.
MS: Everything was done on a shoestring, and people would donate money, and we would help develop programs for people to get their medicines from the donations. And then in 1990, I think it was a Ryan White Title III—Ryan White was passed by Sen. Edward Kennedy and Orrin Hatch. Orrin Hatch was a senator from Utah. And that’s when the money started coming in. Patients could get their medical appointments paid for. It helped get people some mental health therapy. The lawyers came in. We were able to get some dentists and some specialty care in that program, and it evolved into what it is today.
TW: I wanted to ask about, you know, you both have kind of talked to this real fear, and then the fact that the two of you and your practice were kind of the only game in town that would really openly take care of people. Was your practice ever a target for hate, or did you ever get threatening phone calls or mail or anything?
KR: No. Yeah, the people here, they’re fearful, they’re anti different groups and everything, but they don’t do things like that very often. I would say that in retrospect, I found out that a lot of people were sure I would be dead. They were very convinced that Ries wasn’t going to last long. And that none of the health care workers actually admired what we were doing, but didn’t want anything to do with it. And also in retrospect, I think that particularly when AZT and lots of things came out, it was financial, you know. People don’t want poor patients, they don’t want Medicare, Medicaid patients—they want wealthy ones that pay.
TW: So when you say they thought you would be dead, does that mean they thought that you would get HIV?
KR: Yes. Yes. They were sure that I did. Yeah.
TW: You mentioned that you went around and did talks, and I guess I’m curious, you said that in particular you went to funeral directors. Was there a problem burying your patients when they died?
MS: Well, what Sister Linda would do—we would find there was one mortuary that had a special deal on cremation, and we would get the money up to pay for the cremation, and then she would take the ashes. And there was a place in the Catholic cemetery where the ashes could be interned if the family did not want them. And so a lot of people’s remains ended up in the Catholic cemetery. A lot of these people were local people from Salt Lake. And so, they were Mormons. And I don’t know how that rests with them, but I always saw that as a very kind thing to intern those ashes.
KR: Very early on in the epidemic, some of the local bishops of the churches encouraged the parents and families of people with HIV—or even gay [people]—to disown their children. And as I’ve mentioned before, some of them did. But that didn’t last too long. Finally, some of the mothers stood up, and now they have Mama Dragons [a community of Mormon mothers with LGBTQ children] and all these things. It’s come really almost 360 degrees around in the last whatever number of years. But back then, many of these patients died almost alone. Some of ’em, they didn’t have friends. In retrospect, I think there was many gay women that helped some of these men, but we didn’t know at the time.
TW: So you work together in the practice, but you are also life partners. And you talk about earlier that you were both in the closet. When did you come out, and how did that impact your relationships with the community and the care that you provided?
MS: Well, we still think she’s in the closet, but we all know she’s not.
KR: Everybody knows. Yeah. And we didn’t get together until the ’90s.
MS: Yeah. Early ’90s. I mean, we were working—you know, you’d go to work at 7 o’clock in the morning, you’d work till 7, 8, 9, 10 at night.
KR: Because we had to do all our house calls, ’cause there was nobody, there was no home health service or anything like that. So we worked a lot of hours, and we didn’t have a lot of friends at the time, because it was—yeah, we were working, it was inconvenient. People would say, “Well, let’s go have dinner.” We’d say, “OK, my calendar’s out six weeks.” Well, that didn’t last very long. You know, people don’t do that. So it wasn’t until we both retired that we pretty much rejuvenated those friendships.
TW: Do you think when you did come out as gay, do you think that that helped your relationship with the community that you were providing services to? Do you think it made a difference?
MS: Yeah, we never really came out as gay, people just figured it out. I mean, we were born in the ’40s and ’50s, and it was a different era about coming out. The kids nowadays, they come out when they’re very young.
KR: Any time there was a gay person that would come around looking for a job or interviewing, they always sent them to see me. So they just assumed.
MS: Yeah, we weren’t flag wavers or anything, and we just did it. It didn’t matter whether you’re a gay or straight, as long as you do your job, that’s what mattered.
TW: Right. But I think in this period of time, I think it does matter. It’s comforting to know, if you were a gay man that has AIDS, it’s comforting to know somebody in my community is going to take care of me. So that’s less stressful for me to go to that provider, versus maybe somebody that I’m not sure if they are supportive of my identity and my community, to try to go and get care from that person at a very scary time.
MS: Sure. I think that that’s true. I think, too, that if any patients ever asked us if we were gay, we said yes, but you know, we grew up, you just figured out who was gay, and the community here is very small, and just one person that had HIV, they would go back and learn other people that had HIV and they would say, well, “You have to go see Dr. Ries. She’s family.” I mean, that’s how we talked about it in those days.
KR: People would send patients—you know, infectious disease people are known to be the last one to see the patients before the undertaker anyway. And so, you know, we take all commerce. Wouldn’t matter what everybody, if you treat people right, I don’t think they care if you’re straight or gay. And now it’s so obvious that everybody knows, and nobody cares, including the university.
MS: I don’t think we had to say we were gay. No, we never did.
TW: Can you tell me a specific story about a person, a gay man with AIDS that you helped that really sticks out to you?
KR: I think one of the first ones that I’ll ever remember, and I still never forget him. There was a guy, he was from New York, he was a Jewish guy. He was one of the first people to go on local television and said he had AIDS. And we went on Take Two with Rob Dicker and he came to me in the office one day. He says, “Dr. Ries, I’ve agreed to go on this TV program, and you’re going to come pick me up at my house, ’cause I don’t ride my motorcycle too well anymore, and you’re going to drive me to the TV station, and we’re going to be on the show.” And so I said, “OK.” So we did, we did it together. And that was the first time anybody, patient or anybody, went on TV here, and I forget what year that was, but it was early, like mid- or early ’80s or something.
And I’ll never forget. We always took care of him, and he actually was pretty alone. He didn’t live too far from our office. And when he was dying, his partner had to work and everything. He had to earn the money. And so sometimes, either I or somebody from the office would go by his house at lunchtime just to make sure he had water and everything available. And I’ll never forget him when he died, his partner wasn’t sure. We were losing three people a week, just the two of us taking care of them in those early days. And so we couldn’t always be gone to see if somebody was dying or dead. And so I remember his roommate caller, he thought he was dead. He was pretty sure he was dead, and he had fixed him all up. But he wanted us to come and make sure, which we did. So we got up in the night, we went over there, and there he was, dead with the cat sitting on his chest. I’ll never forget that. I can still picture that, ’cause it was so sweet that his partner had fixed him all nice and everything in the bed.
I think he just wanted us to come and support him, which we did. We would go, we learned how to really—everybody, if they were dying, got our phone number, and we would talk them through their partner dying. Because there was no place to go. A nursing home wouldn’t take them, I mean, there was nobody for a lot of these people back in the mid- early ’80s, and I’ll never forget that one, because he was dead as could be with the cat sitting on him. Such a nice cat.
MS: That reminds me of kind of an awful story. One of the ones where we had this patient and he was very cachectic, just, it looked like somebody that came out of the concentration camp. It was maybe in the early ’90s, and home health nursing just started going into the home, and the nurse was coming to take care of ’em. The mother was there, and the guy, he died. And after the mortuary came and took his body, the nurse was telling the mother what she needed to do to clean up, and she said, “The sheets are soiled, so burn the sheets, and the mattress is also soiled. Do you have a way to burn the mattress?” And she said, “The cat, you have to cremate the cat.” And the mother called us and said, “Is this true?” And if it wasn’t so sad it would have been funny. But we just said, “No, you don’t have to burn any of that, just clean it, and certainly don’t get rid of the cat.”
And in those years, people were saying get rid of your pets, because you might catch some kind of disease from them. And we always advocated for people to keep their pets, because they were so important to them, some form of unconditional love. And as long as we knew what kind of pets they had, if they got an infection, then we could put that in the diagnosis differential.
KR: And I’m actually speaking of all the talks—I must have given hundreds of talks—that was one of my talks, zoonosis and how to recognize it in AIDS patients. I went to a pet store, took pictures of all the animals, and had this nice talk for health care workers: Don’t have them get rid of the pets.
TW: I also remember people being concerned about, I think it was cryptosporidium from like the animal feces, and it was just a matter of, you know, get your roommate to clean the litter box for the cat, or wear a mask or something like that. But yeah, don’t get rid of your animals. They’re a source of support and comfort.
So, what are you most proud of from that time?
MS: I guess what I’m most proud of is that we did a job, and it happened to be taking care of people in a compassionate way.
TW: During this time, you two were considered experts in your community. Did you ever get called to testify on behalf of a piece of policy or correct a policy that was going to hurt people or anything like that happening in your community?
KR: I ended up going to court on several occasions. I’ve always went as an expert witness for the patient. For various cases. One was an adoption. And I’m very proud to say early on that the courts ruled in favor of our patient who had HIV, and this was in the mid-’80s, and they’re still alive. And they have adopted two children who are totally grown people, one is an actress, and one is a stage person in big-time things now.
The other one was a big case related to viaticals [when someone with a terminal disease sells their life insurance policy for cash], where they cheated a lot of old folks and sold them bad viaticals, ’cause they knew that the new drug had come out, and the [HIV] patients weren’t all going to die. And they cheated these old people, showing them all these viaticals from AIDS patients, and they won that case.
TW: So now that you both are retired, who takes care of people with HIV in the community?
MS: Everybody. It’s really mainstream. It’s come a long way. The place to go, though, I think is still the University of Utah if your insurance will pay for that. And they have case management. They have HIV physicians, PAs. It’s a designated infectious disease unit that sees HIV and other infectious diseases. But there are several other places where people can go to get HIV treatment. It’s really come a long way. It’s mainstream.
KR: And for the first time, the LDS Hospital is actually going to start an AIDS clinic now. They’ve never had one. We’ve had some people that we’ve trained over there over the years that see more and more patients, and they’re going to do that. And I think that’s a good thing. People aren’t afraid of it anymore.
MS: I think the issues are different now. Just like other issues in the medical system in terms of people getting their medicines, getting the right insurance so that their copays are affordable. You know, all those issues.
KR: I was just talking to one of the med people that sees a fair amount, who is dedicated, who is really trying to move things along, and they’re getting so many new patients now, with young teenagers. And apparently in speaking with her, there’s a huge problem with sex trafficking. I’ve heard about it here. It wasn’t big in our day as much that we knew of, but nowadays it’s a lot of sex trafficking and young teen gay men.
TW: Are you saying that specifically in Salt Lake City?
KR: No, I think it’s everywhere. I think that’s how it’s changed here.
TW: Dr. Ries, you retired in 2011, and PrEP [pre-exposure prophylaxis] came out in July of 2012, and then, Maggie, you retired in 2013. Did you get to see how PrEP helped?
KR: We always did PrEP, from the very beginning, underground. So it wasn’t anything new to us, but I think it’s a good thing.
TW: So, are you saying you were using Truvada before it was approved for PrEP?
KR: Yeah. And in the beginning we used AZT, and you know, we even really thought it out, took the chance, and the patient had to agree. And we used mother-to-child transmission PrEP before it was approved. Actually, the patient took the chance, ’cause they wanted that.
TW: How were you able to get a person who was HIV negative PrEP before it was approved?
KR: Well, somebody died and they had medicine.
TW: But I would think eventually that would run out. So how did they keep taking it?
KR: We actually had a pretty good stream of medications. We were known, and people brought it from afar.
TW: So you kind of had an underground?
MS: Yeah, patients found their own, too. Or they all found it on their own, some just ordered them from overseas.
TW: What do you think would have happened if PrEP had been available in the ’80s? Do you think there would have been resistance to it? Do you think people would’ve taken it?
MS: I think people were afraid—they would have done anything, and they did do anything. There was all kinds of remedies and stuff that they did.
KR: An “AIDS machine” guy, I had to go to court ’cause he was using my name to sell it.
TW: Wait, what does that mean, an AIDS machine?
KR: This guy had this machine, and I don’t know what it was, but he was in the news and everything, and he would have patients come in, and he did something with this machine or whatever, and then it was supposed to cure AIDS. And he used to use my name, I had to actually spend my [time to] go to court to get him to cease and desist. I still have the newspaper article though.
Yeah, I think people would have done anything. They grew those mushrooms in the refrigerator, and there was all kinds of AIDS cures that people tried. So I think people would have done anything. But I think in the ’80s, it was the one time people really changed their behavior. No question about it. The behavior changed. And when I talk to some of the older gay men now that survived the epidemic without AIDS, they just can’t believe the behaviors now. They’re so upset with their younger counterparts. The thought is, there’s good treatment. And so what if I get HIV? There’s treatment, but now there’s PrEP, so you just take PrEP. And then you just get all the STDs, which is not good for you either.
TW: Is there anything that you can think of from that time that sticks out to you, in terms of a story or an experience that you think would be important to share, as we close?
MS: You know, the Sisters of the Holy Cross, if it was not for them in the ’80s, I’m not sure what people would’ve done. There was no other place to go, and no other hospital would admit them. They all got sent to Holy Cross Hospital. And the sisters had their own problems with people, too. I mean, they told stories just recently about how their own staff didn’t want people with HIV in their hospital because they thought it would end up closing the hospital down. People wouldn’t come because of the fear, but they were courageous and they took a risk and they believed that part of their mission was to take care of people.
KR: You know, the hospital did end up closing. That’s why we went to the university. And they say that we didn’t have anything to do with it, but they gave so much free care to all these patients. We had a 10-bed unit, and it was always full. They didn’t have insurance, though some could get Medicaid even if they don’t.
TW: Well, I love your story, and I love that you worked together to help a community and worked professionally together and now are life partners. I just think that’s such a great story.
KR: When people say, “How did you meet?” I say, “Well, we met over HIV/AIDS!”
TW: Do you ever run into any of your patients that lived through those darker years?
KR: Constantly. They’re everywhere. We see them all the time. And it’s so great. Like last night, the Utah AIDS Foundation has a designated Oscar night party, which isn’t one of the official ones from the Oscars. And so we went to that last night. Of course, we see them all the time, and they’re doing fantastic. It’s just like some of them have never recouped, and others have just totally went on with their lives and become all kinds of artists again and different things. So yeah, we love seeing them.
TW: It must be really gratifying to know that you saved lives.
MS: We didn’t save their lives. The medicine came.
TW: Right. But had you not been there?
MS: Well, I don’t think of it that way. And it seems funny to me, strange to hear you say that. Because we shared part of each other’s journeys, and, just like anything else in life, you do what you can when you can, and you move on.
KR: Almost every town has somebody that steps up, and I don’t know who it would have been, but somebody would’ve stepped up.
TW: I bet there are a lot of people in Salt Lake City that are grateful that the two of you stepped up.
KR: Yeah. We’re very fortunate that they think that. We were just doing what everybody should be doing. You know, if everybody did the right thing at the right time, we wouldn’t be in this awful mess we are with our country right now.