NEAL CONAN, host:
This is TALK OF THE NATION. I'm Neal Conan in Washington.
When AIDS first emerged in the United States 25 years ago, the face of this horrible new disease was young, gay, and male. That changed as HIV spread around the world, except for the young part. For too long, patients didn't live long enough to worry how their disease would affect arthritis or Alzheimer's.
But now the success of antiretroviral drugs allows many with HIV/AIDS to live longer, and, of course, older people get the disease too. The CDC estimates that about a quarter of those with AIDS in 2004 were over 50. There's been little work on how HIV might affect problems like osteoporosis, high blood pressure, prostrate cancer or diabetes. And few, if any, studies on how antiretrovirals might interact with drugs for heart disease or a host of other conditions.
Later in the program, our summer movie series continues as we consider the best and worst performances by a child actor. If you have a nominee, send us an e-mail: firstname.lastname@example.org.
But first, if you're older and living with HIV/AIDS or work with people who do, join the conversation. Our number, 800-989-8255, 800-989-TALK. The e-mail address is email@example.com.
Joining us now to - is Jane Fowler, the director of the national program HIV Wisdom for Older Women, which is based in Kansas City. And she joins us from the 16th International AIDS Conference in Toronto, Canada. And it's good of you to take the time to join us today.
Ms. JANE FOWLER (Director, HIV Wisdom for Older Women): I'm delighted. Hello there.
CONAN: Hi. How did you find out you were HIV positive?
Ms. FOWLER: I attempted to get new health insurance and I flunked the test. I was told in a kind of routine letter that I could not be insured because of a, quote, significant blood abnormality. And the insurance company refused to tell me what it was. I had to have that information transmitted on to my physician.
CONAN: And what was his or her reaction?
Ms. FOWLER: Her reaction I think was as much of a surprise as mine was. We were both flabbergasted that this insurance company claimed my blood had tested positive for HIV.
CONAN: And I assume you had another test done.
Ms. FOWLER: I certainly did, two days later, after I got the letter, the surprise letter.
CONAN: And as it turned out, what do you think had happened?
Ms. FOWLER: Oh, I know what now. I quickly thought back about things and -well, the first thing I did was to read up on the disease because I didn't know anyone with it.
Ms. FOWLER: And I was not - I didn't fit the stereotype certainly. The stereotype...
CONAN: What age were you then?
Ms. FOWLER: In 1991, I was 56.
Ms. FOWLER: And I was able to trace my infection back five years over New Year's of 1985/86.
CONAN: And what had happened then?
Ms. FOWLER: Well, I...
(Soundbite of laughter)
Ms. FOWLER...I'd been celebrating with a very good friend of mine. I had been married 23 years, virgin on my wedding night, monogamous, married 23 years, divorced. In 1983, started dating...
Ms. FOWLER: ...for the first time in 25 years. One of the men that I saw occasionally was a long-time friend, a friend my entire adult life, and occasionally we were intimate. I didn't find out until later that he actually had a double life.
CONAN: And did the idea of, you know, protection or contraceptives, a condom...
Ms. FOWLER: Of course not. No, of course not. Not in 1985 when I was infected. I knew I couldn't become pregnant, so why would I need protection?
CONAN: Mm-hmm. And that's I assume a big part of the story that you're trying to tell a lot of people today.
Ms. FOWLER: Absolutely. Think about safe sex. Think about this before passion affects good judgment. Remember that you do not know the sexual or drug history of anybody but yourself.
CONAN: Mm-hmm. And the other part of it was in a way your doctor's reaction. She had never thought to test you for HIV.
Ms. FOWLER: In fact, two years earlier, I said to her during my annual physical - because I had heard the disease was beginning to move into the heterosexual population and because I had had a few intimacies after my divorce - I said do you suppose I need to be tested for that HIV? And she said, oh, no, Jane Fowler, not you.
Ms. FOWLER: And she'd been my physician a dozen years. She knew me well.
CONAN: Mm-hmm. Nice people get HIV.
Ms. FOWLER: Yes.
CONAN: Let's see if we can get some callers in on this conversation. If you'd like to join us, our number is 800-989-8255, 800-989-TALK. E-mail us, firstname.lastname@example.org. And we'll begin with Adrian(ph). Adrian's calling us from Wisconsin.
ADRIAN (Caller): Hello.
CONAN: Hi there.
ADRIAN: I've had some strange experiences. Been positive and with AIDS for 22 years, and now I find that when something happens the doctors' say, well, it's possibly a side effect of your drugs. We don't know what the long-term effect of taking them is, or it could be from the disease. And you just sort of never know what's going to happen and what's causing it.
CONAN: And because this is, as far as you know, uncharted territory I assume, Adrian, and your doctor, too.
ADRIAN: Oh, yeah. In my area, I'm one of the long-term survivors. My partner at the time is also a long-term survivor - but we aren't partners anymore - and there are a couple of others. But other than that, you know, it's all uncharted territory just like you said.
CONAN: Jane Fowler, any advice for Adrian?
(Soundbite of laughter)
Ms. FOWLER: I guess just what I hear and what I say, we never know. Is it HIV or is it aging? And even our physicians tell us they don't know the answer.
ADRIAN: All right. (unintelligible)
Ms. FOWLER: There hasn't been enough research, as you mentioned earlier in show.
CONAN: Hmm. Adrian, good luck.
ADRIAN: Well, thank you.
CONAN: Thanks very much. And, Jane Fowler, I know you're busy. We thank you for taking the time to speak with us today.
Ms. FOWLER: Of course.
CONAN: Jane Fowler...
Ms. FOWLER: Goodbye.
CONAN: Goodbye. Jane Fowler is director of the program HIV Wisdom for Older Women, which is based in Kansas City, Kansas. And she joins us from the International AIDS Conference currently underway in Toronto, Canada.
With us now is Steve Karpiak, the associate director for research at the AIDS Community Research Initiative of America in New York City, who's been conducting research on what effects AIDS has on older populations. He's with us from our bureau in New York City. Nice to have you on the program.
Mr. STEVE KARPIAK (Associate Director for Research, AIDS Community Research Initiative of America): Greetings from New York.
CONAN: And as we just heard from Adrian and from Jane, there's very little research in this area.
Mr. KARPIAK: Absolutely. That's why the release of our fairly large study about a thousand-person cohort is kind of significant not only in its size but it's the first serious effort to look at this population, which is growing.
Mr. KARPIAK: In New York City, over 30 percent of the people living with HIV/AIDS are over the age of 50; and, in fact, 70 percent are over the age of 40. And this is like a point of information, a fact that is often - is not seen very clearly, or epidemiologist even overlook their own numbers.
Mr. KARPIAK: And there tends to be an emphasis on youth, which there well should be, but the aging population is a large and substantial population that, as your two prior guests just indicated, is not being well studied.
CONAN: And is there any breakdown of which percentage has now got HIV/AIDS as a result of long-term survival and what percentage of people got it as Jane Fowler did, after she was 50?
Mr. KARPIAK: The vast majority - if we use New York as a crystal ball, if you will - because what's happening in New York is happening across the USA and, in fact, will happen in countries across the world where antiretrovirals are introduced - we have a population that's aging, and most of these folks are aging because of the success of the antiretrovirals.
Mr. KARPIAK: There are some - it's about 15 percent at max - who are newly infected over the age of 50. CDC reports this. And that's been pretty steady over the last six years. But this growing aging population is a function of success. The glass is half full of the success of antiretrovirals.
CONAN: And in that respect, I guess we can only, other than that 15 percent, only root for more and more people to be older with HIV and AIDS.
Mr. KARPIAK: Absolutely.
CONAN: What do we get in terms of a demographic breakdown?
Mr. KARPIAK: In New York City right now, the population living with HIV over 50 are 80 percent people of color and one-third women. About 20 percent are gay white males, identified gay white males, and as was - as you had mentioned, the disease has now transformed itself and has found, if you will, a perfect host. It's found the poor ethnic groups, particularly African-American and Latino populations, who have gained this infection at higher rates than the gay white population.
CONAN: And what about that problem that both Adrian and Jane were mentioning, that who knows whether it's the AIDS or whether it's the aging? Is research underway?
Mr. KARPIAK: That's true. There actually is very little research that's trying to discern which might be contributing to what might be a comorbidity of aging or whatever ailments might be occurring, whether they're related to the virus, whether they're related to the long-term use of antiretrovirals, or whether they're related to maybe an accelerated aging process because of the assault of the virus on the immune system and the drugs being taken. The antiretrovirals are very, very powerful.
Mr. KARPIAK: And they, too, have their side effects.
CONAN: Sure, and - but the - I guess the real worry is, you know, we always see those advertisements on TV, you know, worry about the interaction between your heart medication and your medication for something else. Has research been done to show what the interactions are?
Mr. KARPIAK: No. There's really been none at all, and I think that's part of why our agency, ACRIA, and my colleagues who mounted this very large effort -and I must mention without any support from government or private foundations. When they were approached, they were like look the other way. We've begun to look at this process and to perhaps begin to understand what is contributing to the illnesses that this population - which is aging - are showing and how to best manage them.
I think part of the issue here is that this population is largely being taken care of by ID, infectious disease physicians. These are people trained to manage this very difficult disease, HIV.
Mr. KARPIAK: And they are specialists, and they are not attuned to the comorbidities of aging. And many will tell you that there's not - it's barely on their radar screen. So they barely even know that what's going on right now and let alone know what interactions might occur between the whole panoply of drugs used in the aging population versus the antiretrovirals.
CONAN: And I guess the flip side of that was Jane Fowler's physician who didn't even think to test her for HIV.
Mr. KARPIAK: Absolutely, absolutely. As there are more and more older adults living with the virus, there are more and more older adults out there in the population who have the virus and therefore a greater possibility of infection because we tend to seek our peers out in having sexual relations.
CONAN: And do you think that people turned away on the idea that, you know, it's embarrassing to think that your father or your grandmother's having sex?
Mr. KARPIAK: A stigma is a powerful element in this population. It's kind of scary sometimes when we talk to these individuals to see how much stigma causes them to be alone and to be isolated because they are painted still as bad people. The - when I lecture about this work, one of the things I encourage people to do, particularly in communities of color, is to bare witness, to talk about it, and they don't.
CONAN: We'll be back after a short break. We're talking about AIDS and aging. I'm Neal Conan. It's TALK OF THE NATION from NPR News.
(Soundbite of music)
CONAN: This is TALK OF THE NATION. I'm Neal Conan in Washington. We're talking today about HIV/AIDS and aging. Our guest is Steve Karpiak, the associate director for research at the AIDS Community Research Initiative of America in New York.
If you have questions about the complications of HIV/AIDS and aging, give us a call, 800-989-8255, 800-989-TALK. E-mail is email@example.com. And let's turn to Jay(ph). Jay's calling us from Jacksonville, Florida.
JAY (Caller): Hi there. Neal and Steve, how are you?
Mr. KARPIAK: Fine. How are you?
CONAN: Well, thank you. Good.
JAY: Steve, I just wanted to say that I think that your point on the fact that the lower socioeconomic community definitely need to be included in extensive research and not just those Americans who can afford healthcare and very good healthcare.
JAY: The fact that research has not been done on older patients is significant, and I think it's something that we really need to focus on. And this coming from a healthcare provider in Florida.
JAY: I have three patients now. Two of them are over the age of 55...
(Soundbite of truck horn)
JAY: ...and none of them have even been exposed to research other than these antiretrovirals that you've been talking about.
CONAN: Jay, are you a safe distance away from that truck?
CONAN: Okay, go ahead.
JAY: And I really would like to see the community, and especially the government, the Department of Health, look at ways to include a broad spectrum of people in research, in actually finding out the answers to these questions that we don't have answers to.
CONAN: Well, Steve Karpiak, how come?
Mr. KARPIAK: Once again, I think there's a little bit of ageism operating here, that older folks are generally off the radar screen. And whereas I agree that the government should support more research, this is also incumbent upon the pharmaceutical firms to do what are known as phase IV studies to examine the effects of, say, anti-arthritics or anti-osteoporosis drugs in this population, to look at persons who are on antiretrovirals who are older and look if there are any interactions. These are not difficult studies to do.
In fact, ACRIA has done clinical trials all along since the early '90s, and we have been encouraging pharmaceutical firms whom we have a great relationship with to begin to do these trials.
Mr. KARPIAK: I think it was necessary to show that this is a large and growing population. No one seems to have been aware of this until now, how large this group is.
CONAN: You mentioned ACRIA. That's of course the acronym for your AIDS Community Research Initiative of America, so anyway. Jay, thanks very much for the call.
JAY: Thank you.
CONAN: All right, bye-bye.
CONAN: Let's go to - this'll be Antonia(ph). Antonia is calling us from Napa in California.
ANTONIA: Hi, how's it going?
CONAN: All right.
ANTONIA: I'm just interested if there's any information on older populations, specifically lower economic or even incarcerated people, who are HIV positive and also are positive for hepatitis C and how the drugs are interacting with hep C and HIV?
CONAN: Did you say hep C, hepatitis C?
ANTONIA: Yes, hepatitis C.
CONAN: Okay. Steve Karpiak?
Mr. KARPIAK: Well, you point out another significant problem. This population -in fact, in the study that we've done almost one-third of these folks also have - are co-infected with hep C, and this presents another problem. And the treatments for hep C are very powerful and very difficult to keep on - to maintain them. And how they interact with the antiretrovirals is really not known. So you, again, point to a research issue that's not been well studied but needs to be.
CONAN: Antonia, why do you ask?
ANTONIA: I deal - I'm a health educator, and I go into a lot of incarcerated places where there is so much co-infection. And because in the State of the California, they don't do a lot for drugs, you know, for the prisoners. So it's just interesting to see how these men are aging.
CONAN: (unintelligible) Let's talk now with Jeff. And Jeff is with us from San Antonio in Texas.
JEFF (Caller): My question had to deal with HIV medications and depression. There have been a large number of me and my friends who, you know, suffer from depression and also the suspicion that the drugs are pretty taxing on the antidepressants and stuff in the system.
Mr. KARPIAK: Well, I think that you point to one of the findings of our study -and others have found this as well - is that the rates of depression are extremely high. In fact, in our study they're 10 times higher than one might find in a comparative population.
And what's interesting is that here's a group of people who are in care, they are in medical care, and yet they have huge and high rates of depression. Why aren't they being managed? And no one has ever answered the question whether this depression is a function of HIV or the antiretrovirals or some social condition. And nonetheless, here are folks in care, and yet they have a disease entity, depression, which is manageable, but it's not being managed. This is an issue that needs to be addressed.
JEFF: Well, and, you know, I don't want us to sound like we're too whiny or anything, because most of us actually feel like, you know, the dealing with the problems of aging and listening to your doctor tell you, you know, you're going to have to worry about your cholesterol and get some exercise is a hell of a lot...
(Soundbite of laughter)
JEFF:...than we used to hear from our doctors.
Mr. KARPIAK: Right.
CONAN: It's - in a way it's a relief I suppose, Jeff, yes.
JEFF: So - okay, thank you very much.
CONAN: Good luck to you.
JEFF: Thanks, bye.
CONAN: Bye-bye. Many doctors, as we mentioned, don't regularly test older patients for HIV, meaning the virus can progress to full-blown AIDS before it's detected. Florida's Broward County started its Seniors HIV Intervention Program, or SHIP, in 1997. Jolene Mullins is the early intervention consultant for the AIDS program at the Broward County Health Department. She joins us now from her office there. Nice of you to be with us today.
Ms. JOLENE MULLINS (Early Intervention Consultant, Seniors HIV Intervention Program): Thank you so much for asking us to join you.
CONAN: What's the best way to reach the over-50 set with information about HIV/AIDS?
Ms. MULLINS: We do it in many different ways. We go to health fairs. We go to community events. We go one-on-one. We have special programs with seniors who have social activities at their senior-living facilities. We'll go anywhere.
CONAN: And are these - is this a community that thinks, this is about me?
Ms. MULLINS: You know, it's very mixed because you've got an age span from 50 to 90-plus. And some of the individuals, the baby boomers who are coming of senior age, are a little more aware of HIV and perhaps a little bit more conscious of their risk.
Ms. MULLINS: But you have individuals who are 70, 80 years old who never thought about it, thought about it as someone else's problem and basically are kind of shocked that we're talking about it.
CONAN: And, again, once you present them with the statistics, which are a little scary, do they suddenly - do they pay attention?
Ms. MULLINS: They actually are quite surprised and do start to pay attention. Many times they'll say that they're taking the information or the condoms for their children and grandchildren.
(Soundbite of laughter)
Ms. MULLINS: They're using them, too.
CONAN: Oh, that old saw. I'm taking it for my grandchildren.
(Soundbite of laughter)
Ms. MULLINS: Yes.
CONAN: I wonder what special considerations do you take when trying to talk to them about HIV/AIDS? Do you try to be a little bit more sensitive?
Ms. MULLINS: Well, we definitely try to be sensitive because, as I said, we're dealing with a group of individuals who are from many different generations and come from different backgrounds. You know, south Florida's a very international community.
Ms. MULLINS: And we need to be sensitive to the needs and the kind of beliefs of our senior population. But the reality is that we're very honest about HIV. We know that seniors are sexually active. We know that many people are, you know, they're widowed or divorced. And they are engaging in physical relationships, and we really want them to be aware that HIV and other STDs are out there.
CONAN: Let's get another caller on the line. This is Sally. Sally's calling us from Oregon. Hello, Sally, you there? Thanks. I think she may have hung up. Let's go now to Julianne, Julianne calling from Talkeetna in Alaska.
JULIANNE (Caller): Hi there.
CONAN: Hi there.
JULIANNE: Hi. I wanted to make the comment about trying to receive support from your community or any sort of organization if you live in such a place that offers that. My stepfather was diagnosed - he's 59 - he was diagnosed about four years ago with AIDS. And they live in San Diego, that happens to have an organization that is really supportive. It's been remarkable in terms of helping them. Of course he has health insurance. So for them, you know, life is a little better than for some. But I know that a lot of organizations really offer support, whether it's early intervention or helping financially with medications, you know.
CONAN: Any advice, Jolene Mullins?
Ms. MULLINS: You know, it's really important that you have an organization that can focus on or have programs that really meet the needs of seniors, because they are different from, you know, younger individuals. Their needs are different. Their health situations are different. Their beliefs are different. And that your family member was able to find a group that was supportive is great.
JULIANNE: Yeah. That's right.
Ms. MULLINS: It really helps.
CONAN: Steve Karpiak, any advice for -
Mr. KARPIAK: Well, it's great to hear that he was able to find support. What's happening is that as this population ages, it's finding barriers to access in care, particularly in AIDS service organizations, which are largely attune to a younger population.
So they find themselves isolated and they find themselves, you know, greater and greater stigmatized. So this is an issue of delivery of services that also has to be constantly addressed.
CONAN: Julianne, we wish you and your stepfather good luck.
JULIANNE: Thank you very much.
CONAN: Ok. Bye-bye. Jolene, let me ask you. In some cases, the symptoms of HIV and aging can be similar. You could easily mistake one for the other. What do you tell people who you reach out to? What do you tell them to look for?
Ms. MULLINS: Well, you know, we definitely tell them that some of the natural aging process, like the doctor was saying earlier, are very similar to some of the earlier symptoms of HIV infection. And we try to not only raise awareness among our senior population, but also among our medial providers. We've had individuals come to us, you know, who said, I begged my physician to test me and he wouldn't or she wouldn't because they just did not think I could possibly be at risk for HIV.
You know, I was tired, I had rashes, I had fevers, you know, I just was lethargic or whatever, and they felt that it was just natural aging. So we really try to raise that awareness among our seniors that it may be nothing, but it's really good to know your status. It's good for everyone to know their status. And one thing that's very important, too, is that a lot of our seniors, because they go for medical care more often than other age groups, they think they're being screened automatically when blood is drawn. And we need to make them aware of the fact that they're not. HIV testing is a very specific test.
CONAN: Steve Karpiak, does that ring true to you, that the doctor's saying, no, I'm not going to test you for HIV?
Mr. KARPIAK: Right. Yeah, we've heard the story over and over again where the medical profession itself seems to have turned a blind eye to the fact that this is a population at risk. And it's hard to believe, you know, older adults having sex and catching STDs, as well as HIV. But this is an education process that needs to focus not just on the population but also on the medical care providers.
CONAN: Thanks very much. Let's - we're talking with Jolene Mullins, Early Intervention Consultant for the AIDS program office at the Broward County, Florida Health Department. And with Steve Karpiak, associate director for research at ACRIA, the AIDS Community Research Initiative of America. You're listening to TALK OF THE NATION from NPR News.
And let's get Lynn on the line. And Lynn's calling from Hartford, Connecticut.
LYNN (Caller): Hi, my name is Lynn. And I was infected in '87. I'm 50 now. I've been an HIV counselor for the state of Connecticut for the last 18 years, and I've run - my colleague and I have run a women's group for older women for the last 10 years. And one of the things that happens is that our numbers reflect what's going on in New York City.
Our numbers for women are very high. Our numbers for older people are very high. And what we're finding is when the federal government keeps cutting back support, than the state government keeps cutting back support. And what happens is - I work with older women, they're grandmothers, they're sick to the point of dying, they're raising their children, their grandchildren.
And when their children are out of work, the limited resources that they have, you know, they share so that their children will not be out on the street. And it's really a bad situation. And I'm very concerned about the social structure and keeping the infrastructure in place for the whole community. Because many of these people, you know, there's a lack of resources, the very basic resources. If you don't have a house over your head, you can't take your meds right.
And that's what I wanted to say. The other things is I expect to live to 90, in my 90s, and I'm doing all right right now.
CONAN: Well, that's good to hear, Lynn. But let me ask Steve Karpiak if what she's saying tracks with your experience in New York.
Mr. KARPIAK: Well, absolutely, and I have to mention Lynn I was also born in Hartford, so I hail from the same place. Greetings.
Mr. KARPIAK: You mentioned really, I think, another problem that our research has uncovered. This population is isolated. In New York City, this population, 70 percent live alone, which is the opposite of what you'd expect. And they are isolated from their community. And they are far from services. And this isolation occurs because of stigma and the barriers to care.
And not just medical care, but the kind of care, the care giving that one needs as one ages. You know, from changing a light bulb to shopping, to the emotional support. You know, we always think of care giving as the extremes, you know, breaking a hip or Alzheimer's in a parent or partner. But these folks need care giving and they don't have access to it. And I think that's what you're talking about. They've been largely isolated and they haven't been mainstreamed, you know, stigma keeps them isolated even more.
LYNN: And we can't look at things compartmentally. Like you mentioned the depression, someone mentioned the depression, and the HIV, we need to look at things holistically.
Mr. KARPIAK: Exactly.
LYNN: The other thing is, the other lady hit the nail on the head. Everybody should be offering testing to everybody who is of sexual age.
Mr. KARPIAK: Hear, hear. Absolutely.
CONAN: Lynn, good luck.
LYNN: Thank you. You take care. Okay?
CONAN: All right.
Mr. KARPIAK: Thank you.
CONAN: And one quick final question. And this I guess to you, Steve Karpiak, is what can we do to educate doctors more? I mean what about you guys up in Toronto.
Mr. KARPIAK: Well, I think, it's also the client, you know, that has to go and be, if you will, in the face of the physician and say I need to be tested. And I think if they hear that message over and over again that routine testing, as was just mentioned by your last call in, must be part of all medical care.
CONAN: Steve Karpiak, thanks very much. We appreciate your time today.
Mr. KARPIAK: Thank you.
CONAN: Steve Karpiak, associate director for research at the AIDS Community Research Initiative of America in New York City, with us from our bureau in New York. And our thanks too to Jolene Mullins. Appreciate your time.
Ms. MULLINS: Thank you so much.
CONAN: Jolene Mullins is the Early Intervention Consultant for the AIDS program office at the Broward County Health Department, and she joined us from her office there.
When we come back from a short break, our summer movie series returns, our next installment. Murray Horwitz will join us to talk about his picks for best and worst performances by a child actor. If you've got a nomination send it to us. E-mail is firstname.lastname@example.org. Or give us a call, 800-989-8255, 800-989-TALK.