Growing Old with AIDS
ALISON STEWART, host:
In 1981, after the first identification of a disease that within a year would be called Acquired Immune Deficiency Syndrome, the concept of living with AIDS seemed unimaginable. But within six years, medicines were developed. A drug called AZT became available in '87.
So let's fast forward some 20 years. Several advancements in antiretroviral drugs, people with HIV and AIDS are living longer than ever before. But perhaps their quality of life, well, has very little quality.
And this was a subject of a recent enterprise piece in the New York Times titled "AIDS Patients Face Downside of Living Longer." It explored how the drugs used to treat the disease can lead to premature cases of cancer, kidney failure, diabetes and other severe ailments.
In our series of stories we wish we thought of first, Ripped Off…
(Soundbite of "Law and Order" transition sound)
…from the Headlines, we wanted to talk to someone who'd actually gone through this. Joining us now is Richard Kelso. At 65 years old, he's been living with AIDS for 20 years.
Good morning, Richard.
Mr. RICHARD KELSO: Good morning, Alison.
STEWART: So I'm going to ask you a whole bunch of questions, some of which are really, really personal. And if I get too close and you don't feel like answering something, please just say so. Okay?
Mr. KELSO: Okay.
STEWART: When you were diagnosed in 1987, did you think you'd make it to see 2008?
Mr. KELSO: No, absolutely not. At the time, people that I knew were infected and had actually died by 1987, and it was clearly, to me, a death sentence. I think it - as well to anybody else who was infected at the time.
STEWART: Well, at what point did you realize that, wow, maybe my life will continue on? Maybe there will be a next year and the next year and the next year?
Mr. KELSO: Frankly, not until maybe three years ago. So that's like 17 years of living in fear of thinking that, you know, maybe there's not going to be the next year. You know, and having survived this for 20 years, I could say that there are very few days when I really felt like, you know, am I going to make it? Because there's always the fear of something happening.
Just because I've made it, there've been so many people that I've known throughout the 20 years who haven't made it. And you always think, well, maybe I'm next. Maybe I'm next. Maybe tomorrow I'll get some kind of opportunistic infection, or this drug is not going to work or some other kind of factor like that that throws a lot of fear into the equation.
STEWART: I want to talk about the various regimens - drug regimens that you're on. But you bring up an interesting point. And I was going to talk about it later, but let's jump to it now. In that New York Times article, they discussed that depression was quite a big issue…
Mr. KELSO: Yeah.
STEWART: …and over the extended amount of time, that people tend to become more depressed. Did you ever experience that?
Mr. KELSO: Oh, absolutely.
Mr. KELSO: I would say most of the time, because you really, with this, the nature of the disease, you really had no sense that there was much of a future. And also, given the fact that my friends were dying, people, acquaintances were dying and so on and so forth, it's - I think depression was almost logical, if you will, under the circumstances.
STEWART: Of all the medications that you've taken over the past 20 years, which ones have had an ill-effect on your quality to life and the way you've lived your life - made your life maybe more difficult?
Mr. KELSO: Well, AZT did for a while. That was one of the first drugs that I took. There'd been a couple of others, and the nucleoside and nucleotide analog categories that I've had adverse reactions to. In some cases, I just stopped the drug and moved on to something else if something else was available.
The regimen I'm on now has been pretty tolerable, except that I do have something called osteopenia. I do have lipodystrophy. I do have side effects of the drugs that are not immediately debilitating, but they slow me down. They give me fatigue, headaches…
Ms. KELSO: …various kinds of, you know, problems that are not bad enough for me to stop taking the drug, but, you know, are really not making me feel like I'm, you know, 25 again.
STEWART: Lipodystrophy is when fat deposits, they change and shift in your body as a result of…
Mr. KELSO: Exactly.
STEWART: …of the drug.
Mr. KELSO: Or you lose fat. I've lost fat in my cheeks and my temporal areas and my buttocks. And, you know, and other people, it affects some differently. They can accumulate fat in different places, and it's not the ordinary kind of fat that you think of. They get a buffalo hump, and it's just like a humpback.
Mr. KELSO: In my case, as I said, I've lost, say, fat in my face…
STEWART: So Richard, if I…
Mr. KELSO: …and my legs.
STEWART: …if I looked at you, if I looked at you, I could tell you were, perhaps, ill?
Mr. KELSO: You might be. What has happened is that there's a treatment that you can take for this kind of facial wasting, which is an injection. It goes under the cheeks and in the temples, and it sort of flushes you out. But it doesn't last.
Mr. KELSO: And it's more noticeable among people who are HIV. So you sort of pick up this - you know, if you see it in yourself, you can - it's easier to see in somebody else.
Mr. KELSO: Whereas if you're not HIV-infected, you might not notice it, you know?
STEWART: We're speaking with Richard Kelso, who has been living with AIDS for 20 years. And he's not alone. The CDC reports that since the millennium, a number of folks over 50 living with AIDS has more than doubled.
I actually - Richard, I want you to listen in and respond on the other side. This is a little bit of sound from Time.com. It's a 74-year-old woman and a 58-year-old man who are both living with AIDS.
Unidentified Man: If only people realized how sick this medicine made you, they would never have sex again.
Unidentified Woman: When I first started taking protease inhibitors, that was 1997, those things made me so sick. Oh, I was sick as a dog. My T-cell count was fabulous. My viral load was fabulous. But I couldn't walk.
Unidentified Man: My kidneys are gone. My liver's shot. You know, I had it like 16 years. I thank God he keep me around all that time.
STEWART: So Richard, even though we've talked about the numbers doubling, it must be a lonely feeling. I'm wondering if you're part of any support group.
Mr. KELSO: Yes, I actually am. I have been in a support group. I've been in support groups on and off for 20 years, I would say, as soon as I found out that I was HIV-infected. Currently, I am in a support group that's run by SAGE, which is the Support and Advocacy for Gay and Lesbian Elders. And that is specifically for people who are over 50 years of age and HIV-infected.
STEWART: Before I let you go, though, I do need to ask this question. The happy-to-be-alive question comes to mind. That without these drugs, you and others likely wouldn't have made it today. Has the trade-off been worth it?
Mr. KELSO: I would say definitely, it has. I mean, I'm certainly very grateful that I'm alive. And there's no question that I'm happy to be alive. But there is a trade-off. There is a trade-off. As the guy said, these drugs make you sick. And there's always a fear that something else is going to happen, the next shoe is going to drop.
The path is not clear. And especially once you get over a certain age, you realize that what you're looking forward to is just more debilitation. You're not looking to a bounce back or comeback period with these drugs. And I think that something that younger people need to be aware of is that, you know, you take this risk of getting infected thinking that…
Mr. KELSO: …well, you know, I'll take the pills and I'll be okay. But you…
STEWART: There's a lot more to it, right?
Mr. KELSO: Absolutely.
STEWART: Richard Kelso, 65 years old and living with AIDS.
Good luck to you, Richard.
Mr. KELSO: Thank you.
NPR transcripts are created on a rush deadline by Verb8tm, Inc., an NPR contractor, and produced using a proprietary transcription process developed with NPR. This text may not be in its final form and may be updated or revised in the future. Accuracy and availability may vary. The authoritative record of NPR’s programming is the audio record.