Program Details
On the 25th anniversary of the first diagnosed cases of AIDS, Utah NOW, in conjunction with FRONTLINE, examines one of the worst pandemics the world has ever known. After a quarter-century of political denial and social stigma, of stunning scientific breakthroughs, bitter policy battles and inadequate prevention campaigns, HIV/AIDS continues to spread rapidly throughout much of the world-and steadily throughout Utah. According to the Utah Department of Health, HIV/AIDS has infected more than 3,000 Utahns, including more than 1,000 who have already died. In Utah, what myths permeate this epidemic and what realities encompass the disease?
This week Utah NOW features guest editorialist, Mayor Rocky Anderson.
View or Post CommentsThe show includes a profile on AIDS through the eyes of Dr. Kristin Ries, whose name is synonymous with HIV care in Utah. Guests are Toni Johnson, Director of the People with AIDS Coalition of Utah, Stan Penfold, Executive Director of the Utah AIDS Foundation and Edwin Espinel, the Ethnic Health Coordinator for the Utah Department of Health.
Learn More
Learn more about 'The Age of AIDS' from KUED
The Utah AIDS Foundation strives to help people and communities as the struggle with the complex issues surrounding HIV. They believe no on should have to confront this disease alone. This website also provides services and information on HIV/AIDS.
The Centers for Disease Control and Prevention’s HIV mission is to prevent HIV infection and reduce the incidence of HIV-related illness and death, in collaboration with community, state, national, and international partners. CDC’s programs work to improve treatment, care, and support for persons living with HIV and to help build capacity and infrastructure to address the HIV/AIDS pandemic.
Comunidades Unidas focuses on the under-served population of Latino immigrants in Utah, who are not reached by traditional health and social services due to language barriers, lack of understating of the healthcare system, and lack of financial resources.
The Harm Reduction Project (HRP) provides HIV prevention, education and response to illicit and licit drug users. They provide individual and group harm reduction counseling driven by the needs and desires of their participants.
The People With AIDS Coalition of Utah is dedicated to providing educational and support services that enhance the quality of life for all people impacted by HIV/AIDS.
Show Transcript
[Doug Fabrizio, Host]:
When it was first diagnosed 25 years ago – AIDS was an obscure and mysterious disease – it seemed to literally blaze through a society that was either panicked or detached. The response to AIDS has been transformed over time – with better science and greater awareness – but it’s also taken the edge off the urgency. It may be on a slower burn – but the virus continues to kill. Today on Utah NOW – 25 years in the age of AIDS.
[Fabrizio]:
Hello, and welcome to Utah NOW. I’m Doug Fabrizio. Some of the impacts of AIDS are hard to measure – take its effect on the culture of this country - since it emerged out of obscurity in the 1980s – AIDS has left an indelible mark on American life… it animated a sweeping sense of social awareness – it set off a wave of activism about health care issues – it inspired a new generation of medical advances.
Of course there are impacts you can quantify – 25 million people have died from AIDS-related illnesses in the last quarter century – over that time more than 70 million have become infected. But here’s an even more pressing number – today – right now – more than 40 million people carry the AIDS virus. While society has become acclimated to the disease - the virus itself is adapting and despite the progress with medical treatment - the urgency of AIDS is not a thing of the past.
Of course – Utah is not removed from the story of AIDS – and throughout its experience - one doctor in particular has been there. Those who work to combat the disease in Utah or those who are touched by it - call her simply – the AIDS doctor..
[Kristen Ries, M.D., Professor of Medicine, University of Utah]:
It’s an epidemic that’s growing right now because of some of the stigma that still goes on related to different groups
My name’s Kristen Ries, and right now I would consider myself an AIDS doctor, I started doing it at the beginning, because it just came about when I was an ID specialist, and Infectious Disease Specialist, and one patient led to the next patient, led to the next patient
I really got drawn into HIV AIDS, from the very beginning because it sounded like it was an infectious disease, although there was a lot of fear because we didn’t know for sure. And it was interesting intellectually and medically, and then after you start to see the patients, and there was so much prejudice, and people were treated poorly and people wouldn’t take them in their homes, and all the doctors wouldn’t treat them and all, I kind of got what my mother taught me to do is take care of the less fortunate, and it became an absolute must to take care of the people that nobody else wanted to, and it went on and on like that and it was pretty taught in the years in they years where there was no treatment and everybody was dying, but it’s been so rewarding, been to burnout three times and back at least, but right now things are so much better because we have medications, so it’s kinda been a long journey from really bad places and back again.
I think the epidemic is growing again, and it should have been gone with all the new treatments and everything, but we’re seeing a lot of new people getting the infection because they don’t remember the old days. The older people that have HIV are absolutely in shock that the younger people are taking chances, and even getting infected now days, because they lived through the dying and loss of all their friends. I think the other thing right now that’s going on is that the treatments really great, but then some people think, well there’s a pill now, I can just take a pill and it will all be better, and they don’t realize how complex it is, how expensive it is, how many side effects there are to all that treatment. So I think that we need to somehow figure out a new way for prevention, it has to be honest, it has to get to the point of all the risk factors and we have to be willing to talk about sex, drugs and all of those things that allow people to get at risk.
Everybody’s so interested right now in going over to Africa and the other third world countries and help people, but I think what we’re seeing right now in America is the AIDS epidemic is in the throwaways of society, of the people that are homeless, the people that don’t have all the advantages of other people, and there’s a lot of people that actually can’t get medications because they can’t afford their co pays and everything because of the insurance system they have. So I kinda call it the fourth world, which is one step behind the third world, in that we really need to do something about our society as a whole.
I think we need to support all of our population no matter who they are, and try and make sure that everybody’s needs are met and we try to meet it at their level, and not make people feel like their worthless, or not good as other people in the society. Because I think when people have no self-esteem and feel bad, that’s when they put themselves at risk, because they don’t have respect for themselves.
The last 25 or 20 years, or whatever it’s been of taking care of people with HIV/AIDS has been a gift. The patients have given me much more than I’ve ever given them. Most of what I know about life, if it wasn’t from my mother, it’s from my patients, and I have learned and it’s made me such a better person to know those people, so it’s selfish, but I’ve gotten more out of it than they have, but hopefully we’ve done a little help along the way. I’m kind of a chip off my old mother who was always somebody that wanted to help people, and I think I just grew up in that kind of family.
[Fabrizio]:
Joining us to give a Utah perspective to this global issue is Stan Penfold – he’s the executive director of the Utah AIDS Foundation.
[Stan Penfold, Executive Director, Utah AIDS Foundation]:
Thank you.
[Fabrizio]:
And Toni Johnson is with us – she’s the director of the People With AIDS Coalition of Utah…and we should mention that Toni was diagnosed with HIV in 1993.
[Toni Johnson, Director, People With AIDS Coalition of Utah]:
Thank you for having me.
[Fabrizio]:
So I wanted to ask you, Stan, you first. How has AIDS, do you think, changed the American landscape, the American culture?
[Penfold]:
Well, I think there's a couple of perspectives. One's a kind of a narrow focus, I think. And if you start with the population that was most immediately impacted in the United States in the early '80's, the gay community, I think you can see some really significant changes in the way that community mobilized and came together. It really sort of became a rallying point for people who were already pretty disenfranchised but were really feeling neglected because of the lack of attention given to the disease because of the people it was infecting. I think that expands even now, today, to what you see happening to new underprivileged populations who are getting infected, when you start looking at the infection moving into minority populations, how communities have an opportunity to rally around it, or an opportunity to ignore it. And I think you see both of those examples even today, 25 years into this disease. Some incredible things have happened around health care. I think aids has been the model for how to communicate with your doctor, how to get information in the medical system. I think that's changed medicine very dramatically. But I also think there's amazing amount of stigma still associated with the disease, even after all these years.
[Fabrizio]:
So these groups, we as a community and the particular groups, different than groups they have a choice Tony they can rally around each other or sort of detach from it and pretend if doesn't exist?
[Johnson]:
Help or ignore. Those are your options. I think HIV has given us one more reason to disassociate with ourselves. This group doesn't like this group and it's just one more reason not to have compassion.
[Fabrizio]:
You know Stan mentioned stigma, and I think the best way to really tell this is through a story, because I imagine there are a number of them, but this didn't happen to you that long ago.
It was at a business expo.
[Johnson]:
We had a booth at the Salt Lake chamber's business to business expo and I was handing out flyers and I got some comments I haven't had for a while and one that really struck me was, oh I think we should just quarantine them on an island. And I says you know I haven't heard that one for a while, you can go away now. It had really been? ? I'd heard it before but it had really been a long time. And people don't see me as someone having HIV, they think I'm just the director of this organization. And so when they say that they have no clue they're saying it to someone who has HIV myself. And so they don't know the impact of it.
[Fabrizio]:
It may have meant it to be tongue in cheek but didn't it reveal something?
[Penfold]:
I think it reveals a couple of things. How people compartmentalize this disease. They don't think of it as a disease that impacts women so they don't think of Toni as being impacted or infected with the disease. Especially in our community. It's still this gay male, white male disease. And so people can kind of compartmentalize that. So it doesn't impact me because it's those people. We see that in new emerging infected communities. It's not us, it's them. And it's fascinating and saddening to me about how much energy people put into distancing themselves from an infected population. They just don't want to deal with it.
[Fabrizio]:
Is that about fear?
[Johnson]:
It's definitely about fear. When I do a talk and I say I have HIV, I always get asked how I got it. Now if a man does a talk on HIV and says he has HIV he never gets asked.
[Fabrizio]:
Because it's assumed he's gay.
[Johnson]:
Exactly they just assume he's gay, whether he is or not they just assume he is. And me they ask because they want to put me in a category that doesn't affect them. Oh, how did you get it? I want to be safe from that.
[Penfold]:
Many times I think with Tony it hits a little too close to home. They can relate to her because they don't have this preconceived notion of who she is or what's put her at risk. So people actually spend energy trying to distance themselves from the person infected. How am I different so I'll be okay?
[Johnson]:
Exactly.
[Penfold]:
Because I don't have to worry about it because I'm different from that person.
[Fabrizio]:
Speaking of different I'm wondering is Utah different, do you think, that they experience in maybe other communities? I mean I'm thinking about the fact that it's a fairly conservative, religious society. Stan, you mentioned once that society's putting a moral spin on a health issue.
[Penfold]:
Yeah I think that's one of the biggest challenges to HIV, and to other STD's in general, is that there's this judgment associated with how people got the disease. Whether it's real or not. The examples we've given people sort of distance themselves from the infection because it's not me, it's them. And it's behavior?related. Early in the epidemic there was a lot of discussion about sort of the morality and God's curse, and that he was doing this on purpose, and that there had to be some reason for that. And it's fascinating in sort of these scientific times, that people revert to that cause and effect for a virus, a very natural?occurring virus. So I think we still see a lot of that morality associated with how it's infected, and again I think it's fear. I'm not like that, so it won't? ? I have no risk. It won't impact me. It doesn't cause me any worry at night that I might get infected because I'm not like that person who is.
[Fabrizio]:
Do you think that those who are, do have sort of a greater awareness of these, are issues are becoming common place. You couldn't of course say medical advancements has been a bad thing but I wonder if you think the sense of urgency because of the medical technology has kind of slipped a bit.
[Johnson]:
Definitely. People today think it's no big deal if I get HIV because I can take a couple of pills a day and be fine. That's not the case. People are still dying from this disease. And yes, you may start taking a couple of pills a day to begin with but eventually more and more pills, and more and more symptoms of HIV. And it's not a pretty disease to have.
[Fabrizio]:
Do you see complacency?
[Penfold]:
I think some of it's related to how long we've been living with the disease. You talk to young people who are 20, even 25 now, they know no other life. They don't know a world without HIV in. And many times related to driving in your car. Cars are very dangerous, and we have learned to live with the risk associated with a car. And you would never imagine saying someone don't drive home because lots of people are killed in cars ever day. But I like to relate it to that sort of abstinence only message. We say that to kids you might get HIV so don't have sex, ever, or make it a really bad thing. You'd never imagine doing that in a car because we've accustomed, we've become accustomed to the risk involved. I think people are sort of accustomed to the risk involved with HIV. It's not nearly as visible as it was when people were clearly dying from this very ravaging disease.
[Fabrizio]:
It put a face on it.
[Penfold]:
Absolutely. And it was a horrendous face. It was very ugly face.
And very scary. But now, you know, you don't know if someone has HIV. If they're in good medical care they can manage their disease for quite some time. They can hide their side effects. You don't see the expense or the chronic diarrhea.
[Johnson]:
Or the wasting.
[Penfold]:
Or the wasting, you don't see that.
[Fabrizio]:
You mention kids, and I'm wondering about education. And I'm thinking about the Utah education system, for example. Do young people hear about aids in their school experience?
[Johnson]:
You know they really don't. The speakers bureau at the Utah AIDS Foundation I'm a volunteer with that and we used to get, oh my gosh more requests than we could fill. Now we get hardly any requests from teachers, because they've made the rules more vague so the teachers don't ask because they're afraid they might get in trouble from their higher?ups or their peers or something for bringing us in. So they don't ask us to come in at all. And then again the whole abstinence only. And if a teacher does ask us to come in, every student in that classroom has to get a permission slip signed from their parent, or they can't attend class that day. It's ridiculous.
[Fabrizio]:
So it's about that kind of uncertainty about being able to talk to kids about sex.
[Penfold]:
And ideally we want parents to talk about sex with their kids. I mean that's the ideal. And abstinence is a component of every message we talk about. But we know it's not the only experience that people have. And in many ways we've become more conservative.
Utah was one of the, really, the first states to say, let's man mandate HIV education in our school system. Let's get is it in there at the appropriate grade levels. We have really had a very good plan for getting HIV education into the schools. And over the years, like many other states, not just Utah, we've become more and more conservative about the messages that we feel comfortable communicating in the classroom.
[Johnson]:
More and more conservative.
[Johnson]:
More and more conservative.
[Penfold]:
If it wasn't bad enough to begin with.
[Johnson]:
We talk less now in the schools than we did in 1992.
[Fabrizio]:
Why?
[Penfold]:
I think it's partly the mood of, you know, the community and society maybe in general. If you look from our administration all the way down, we are having a more and more difficult time being comfortable talking about these things. I think it's challenged a lot more. We see a lot, a stronger push to abstinence messages, virginity pledges. Stuff that interestingly enough doesn't hold up scientifically.
[Johnson]:
Lovely sentiments but not realistic.
[Penfold]:
The best information we have says that the most effective way to talk to kids about HIV and other STD's is with parents talking to their kids, that the kids will listen and they will modify their behavior. That's the most effective thing we can do. And we don't equip either our parents or our students to do that.
[Fabrizio]:
You often hear of aids being described as a disease of poverty.
Is that the case?
[Johnson]:
You know it really is. I mean I have my own business, I'm self?employed, I try to support myself. But I'm on housing. Because of my illness I cannot sustain that kind of work level and that kind of stamina to work you know full time, 40?hour job at some big firm. I just can't sustain that. And that's where a lot of people are in. I have friends who were making $600,000 a year.
They're now in housing because of their illness. It's not that they're sick all the time, but they go through spouts and those spouts where they can't work, I just had to take a 4?month leave of absence myself last fall because I got ill. Rebounding from that and staying employed with that employer is almost impossible.
[Fabrizio]:
So it kind of a CASTE system develops; is that right?
[Penfold]:
People living in poverty already are at higher risk for HIV infection. But HIV also creates poverty in the people it infects because it's so incredibly expensive. And a significant number of people who have HIV end up on disability, on some sort of assistance programming, even if you have really good insurance you could easily pay five to $800 a month out of your own pocket just for your co pays on your medications and doctor visits. I mean any of us have that kind of impact it's significant. And that's what we're seeing more and more. Part of that invisible face of aids in sort of this century, I think, is that it's sort of gone away. It's, in many ways it's underground again like it was in the early stages. People don't talk about it, it's not very visible, you don't really see it. You can't identify someone who's living with the disease.
[Johnson]:
Exactly.
[Penfold]:
Because it really doesn't show.
[Johnson]:
And it's like our whole entire country. We don't want to see poor people, we don't want to see the homeless. We want to pretend that we don't have that problem here in America. But we do. And it's not just homeless people, it's diseases, it's all sorts of different thing that is can put you there.
[Fabrizio]:
It raises the question, funding. Where's the bush administration been on the funding of aids?related services? You're both sort of smiling.
[Penfold]:
Toni wants to say something.
[Johnson]:
Oh, do I? Well, for one example, here in Utah our Ryan white funding that helps people with HIV, that are uninsurable like myself, go to our doctor and get our lab tests, those programs have been level funded for the last six years. Level funded. But we have more? ? No increases at all. But we have more and more people that are infected needing the services. So they've had to cut certain services to continue to pay for the more important ones. And in several states we actually have wait lists on those programs now. So in essence, say I got sick today and started to need the medications, I would have to wait for someone on that list, that program to actually die before I could get those medications myself. And that's horrifying. I think it's criminal.
[Penfold]:
I think she's absolutely right. One of the challenges is that we're seeing more and more people accessing the services because people are living longer with the disease because of the meds, which is great. At the same time we're seeing flat funding which really isn't flat funding, it's a decrease in funding. Because you have more people accessing the system and you have greater need. We're starting to see infection rates go up for the first time about three years ago, about 40,000 new infections a year in the United States alone. And that's a lot. And that's starting to creep up again. And I think that's directly related to flat funding.
[Johnson]:
Abstinence only.
[Penfold]:
For programming. And an inability to really modify quickly to new emerging in infection populations.
[Fabrizio]:
Why does it have to be a federal issue? What's the state picture look like in terms of the amount of funds that the state kicks into the issue?
[Penfold]:
I think that's the great challenge. There are many states, Utah included, who give zero dollars to HIV prevention. The state of Utah provides nothing to HIV prevention. They kick in some money only in the last two years for treatment and care, and part of the Medicaid system but it's minimal. It's just barely enough to scrape by, or to meet the federal matching dollars with Medicaid.
[Johnson]:
The money that the state gives us that they have given us for the last two years is specifically for ADAP, which is AIDS Drug Assistance Program, it's for medications. But it's nowhere near matching the federal level and it's nowhere near what we need.
[Fabrizio]:
I wonder, is the virus itself changing? I mean is that something that you worry about? Is it adapting? You hear about? ? Is it mutating? Is that going to be a challenge on the horizon?
[Johnson]:
There are different strains of HIV, and we won't get into that it's very complicated and confusing. But the problem that people are thinking is that HIV is mutating, and people are going to get infected and won't be able to use the drugs. You never know what might happen in the future. But for right now it is people that are on medication, who aren't compliant with their medications. Their virus ends up mutating, or not really mutating but getting resistance to those medications so they can't take them any more. They have to switch to new medications, and eventually if they're not compliant with those they're going to run out of meds to try. And I think that a lot of people are thinking oh, there's resistant HIV out there. And that might happen in the future but right now it's just the people that they're getting resistance to the meds they're taking because they're no, ma'am they're not compliant to them.
[Penfold]:
HIV is amazing at reproducing. A billion copies a day in someone who's newly infected. And it's not really good at it. It's always throwing off some little mutation. That's always been the case. The concern is that when someone's not compliant with their medication, if they're not taking it as directed, if they take breaks, mutated versions will become resistant to that medication, and we are seeing that. We are seeing people who cannot access any of the medications available for HIV today.
[Fabrizio]:
Because they're resistant.
[Johnson]:
Because they're resistant. I think there's a fear that maybe that resistant strain might get transmitted to somebody.
We aren't seeing too much of about that. I think there was talk about a super strain. That's not feeling very real after some research. But certainly the availability of medications is limited.
[Fabrizio]:
Less than a minute, Stan let me put this question to you. You've said that what needs to happen is we need to normalize the discussion about HIV. What do you mean?
[Penfold]:
I think everybody should be talking about it. I mentioned earlier that the best way to talk to kids about HIV is to have parents do it. But everybody is so afraid. They're so afraid of the stigma associated with it, they're so afraid of the stereotype of who gets HIV and what they do in order to get it that it keeps us away from the discussion. And as long as we keep it in the closet, as long as we keep HIV in the closet, people will get infected because they just don't know any better.
[Johnson]:
Exactly.
[Fabrizio]:
Stan, Tony, thanks very much for joining us.
[Penfold]:
Thank you.
[Fabrizio]:
Salt Lake City Mayor Rocky Anderson is our guest commentator for this week's Speak Out Utah segment – the mayor – of course – is a long-time activist in the cause of awareness…
[Mayor Rocky Anderson , Salt Lake City ]:
In 1947, Malcolm Lowry wrote, “if our civilization were to sober up for a couple of days it'd die of remorse on the third.” This spoke to challenges ignored and opportunities lost.
Humanity faces a challenge it cannot ignore: HIV/AIDS. In less than 2 decades, tens of millions of people have been infected. Far too many have died. This has had enormous economic, societal, and personal consequences.
Political and community leaders and all of us must make HIV/AIDS a higher priority. We must do it now.
Leaders who talk about and encourage others to talk about HIV/aids help reduce the impact of the pandemic. Their communities and nations benefit socially and economically.
Leaders who avoid HIV/AIDS put their countries and communities at peril. Economies and societies suffer as people often in the prime of their productive lives succumb to HIV/AIDS.
Local organizations such as the Utah AIDS Foundation do amazing work to raise awareness and address the societal and individual challenges of HIV/AIDS. HIV/AIDS is a world wide pandemic. We must not turn away from suffering people and our collective challenge. The numbers are enormous, but they result from individual transmissions to individual human beings.
We can all do so much more to make a positive difference. Getting tested for HIV/aids is a great first step. I was tested, and it was easy, took just a few minutes, and it was confidential. Well in my case it wasn't very confidential, because I invited the media along. The headline the next day read "Mayor Gets Tested for AIDS." But that was okay for me because it helped get the word out.
We are all at some risk and we should all get tested. We have all been indirectly or directly affected by this huge tragedy. Many of us know people who have been infected, and many who have even died. This is tragic because of federal inaction to prevent, manage, and cure HIV/AIDS.
I'm Mayor Rocky Anderson . Let's take the opportunity to discuss openly and honestly HIV/AIDS, bring others into the discussion, each of us get tested, prod inactive officials to action, and develop a strategy to address our challenge to make this a better, healthier, more just world.
[Fabrizio]:
That's Utah NOW for this evening… Thanks for joining us …. Don't forget that on Tuesday, May 30th and Wednesday, may 31st – the PBS program FRONTLINE is going to be exploring the history of AIDS - one of the worst pandemics the world has seen – it's called the Age of Aids – that's Tuesday and Wednesday evening beginning at 8:00.
You can join the conversation with an e-mail… Send us your thoughts…. Our address is utahnow@kued.org In the meantime - we'll be back next Friday with another edition of Utah NOW… until then, I'm Doug Fabrizio…..
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