Thanks to the invention of HAART, HIV is no longer the death sentence that it once was. And with that advance, more and more people living with HIV are entering their golden years. Now, that's an amazing thing, yet the topic of HIV and aging is a very complicated one that presents a plethora of issues and challenges.
Is it age or HIV? Are the health issues that this community faces a consequence of aging, the disease itself or a combination of both? And what can doctors do to help improve the quality of life -- both mental and physical -- of their patients? But most important, with stigma, past trauma and depression so prevalent in the lives of HIV-positive seniors, what can they do to feel empowered not just with their health care and treatment, but in their lives?
In addition, over the years, we have seen an increase in newly diagnosed HIV rates among people over 50. What factors make this demographic more vulnerable to HIV infection? And is enough being done to educate our seniors about their risk factors?
Participating in this discussion on the subject are: Frances Meléndez, Interim Director, College of Staten Island; Sean Cahill, Director of Health Policy Research, Fenway Institute; and James Masten, psychologist and author of Aging With HIV: A Gay Man's Guide.
Kellee Terrell: How did each of you become involved in doing aging and HIV work. Frances, why don't you go first?
Frances Meléndez: I was affected by it personally. It's affected many, many members of my family and friends. I began to work at Iris House and started a behavioral health program because I saw that a lot of agencies weren't dealing with the mental health issues of people living with HIV. And then it turned into dealing with women over 50. We began the DIVAS over 50 group to address issues of HIV in women that were older.
I was really surprised to see how people didn't want to talk about older people being infected after 50 or talk about them being sexually active -- acknowledge them as sexual beings or talk about this group getting tested for HIV. There's a lot of shame attached to that. If you're a grandmother, you're not supposed to be having sex. And you're definitely not supposed to be HIV positive.
Kellee Terrell: Sean, how did you get started doing this kind of work?
Sean Cahill: Most of my work has been in the realm of policy analysis. It started about 12 years ago, when I was researching and writing a publication for the National Gay and Lesbian Task Force called "Outing Age," which was about issues affecting older lesbian, gay, bisexual and transgender [LGBT] adults and some of the areas of public policy that we could change to improve services for LGBT elders. One of the big health concerns for older gay men and older transgender women, in particular, is HIV.
More recently, I was working at Gay Men's Health Crisis [GMHC] and decided to do an analysis of older adults living with HIV, or at risk for HIV, and how we could do a better job of caring for them, as well as prevent infections among older adults through some public policy changes. We published an analysis of elder HIV issues through GMHC in 2010. Those were the two big projects that I was involved with.
The GMHC publication led to working with the White House Office of National AIDS Policy to organize a one-day conference on the topic, and advocating for some policy changes through the Older Americans Act Reauthorization, things like that.
Kellee Terrell: James?
James Masten: It's interesting. I started working in the field as an advocate -- doing care, volunteering and providing HIV education in the '80s. And then, starting in the '90s, I started running support groups for people over 50, at SAGE and GMHC, who felt completely invisible and overlooked in the HIV care communities. At that time, so many younger people were dying. In many ways, [those over 50 and HIV positive] felt a lot of shame about being older when so many young people were dying. And yet, at the same time, in the aging communities, many felt very isolated for having HIV. So we formed these support groups for people over 50 to get support from one another, to talk about their experience. So that was my initial interest.
More recently, I did a long-term study following 15 gay men living with HIV, who were between the ages of 50 and 65, for a period of 18 months [and found out basically what] it means to age with HIV in this era. Then I wrote the book "Aging With HIV."
Kellee Terrell: When we talk about seniors and HIV, there are two groups. Those who were diagnosed in the past and thanks to medicine have gotten older. And then we're talking about what Frances was talking about: people who have been diagnosed after the age of 50.
I want to start by talking about people who are diagnosed at the age of 50 or older, especially given that newly diagnosed rates are increasing among this demographic. What's putting this particular demographic at risk in ways that are unique and different than those among its younger counterparts?
Frances Meléndez: One of the things I've found with the women I've worked with, in particular, is that no one discusses the issue that they can be infected. Their issue is: "I can't get pregnant; I'm menopausal." So there are no issues; there's no real education on what happens to a woman's body that may increase the risk of HIV at that age.
And also, with that age group, you're thinking: How do you ask a woman to negotiate a condom? When you think about culture, religion, or even talking to anyone about being sexually active, or a doctor that doesn't ask if you want to be tested for HIV. I don't recall any doctor ever asking me would I like an HIV test. So I think it's education and overcoming shame.
Sean Cahill: I agree with you completely, and I would add that the result of that is that people over 50 are diagnosed with AIDS, with HIV, much later in the progression of the illness, as opposed to younger people.
I think that certainly the silence and taboo around older adult sexuality is the cause. I think that a lot of heterosexual people are at risk because society still views AIDS as a gay disease. And even though it's disproportionately affecting gay men, obviously it's affecting heterosexuals, as well.
Fran actually referred to changes in women's bodies that occur that can put them at elevated risk. One that I know of is vaginal dryness, which can be caused by hypoestrogenism. That really is a risk and so, when we educate older women about HIV prevention, we have to encourage them to use not just condoms, but also use lubricant.
Unfortunately, in general, doctors don't ask about the sexual behavior of their patients at any age; but particularly with older adults, they tend not to ask these questions. So older people really need to advocate for themselves and raise these issues with their doctors.
Also, it's really important for people to talk about who they're having sex with. So, if you're a man and you're having sex with another man, even if you don't identify as gay, that's relevant information. That is related to your risk for HIV. So talking to your doctor about your sexual behavior, and who your partners are, is really critical.
And then the last thing I would just mention is certainly Viagra [sildenafil], Cialis [tadalafil], and these other biomedical interventions or innovations. They've had an effect. I think that older adults were always sexually active, but it could be that some older adults are more active today than they were a decade ago, because of these new technological innovations. And that also could increase risk.
Kellee Terrell: The media has published stories about sex escapades in nursing homes where either sex workers are coming in or everyone is having sex with each other. Do these reports have validity or are they sensationalized accounts of what is really going on?
Frances Meléndez: No, it's happening. I'll just tell you a quick story. I had an intern working with me. I was educating her for the first time about sexuality in people over 50, and she could not believe it. She came in three months later to let me know that she had gotten a note home for her grandmother saying that she had to be tested for STDs because, of course, women outnumber men in the nursing homes and she was sleeping with a man in the nursing home. The man she was seeing was going out and paying for sex from sex workers. Then he was coming back to have sex with other women at the center. And so the women had to be tested for STDs. So it's real. It's real.
Kellee Terrell: From your own experiences, what does sex education in these types of living facilities look like? Do they even exist?
Frances Meléndez: Yes. Iris House did that. Part of our prevention team would go to the nursing homes. It's actually very funny: [The seniors] would say they were taking the condoms for their grandchildren -- again, the shame of admitting that you're even having sex.
James Masten: I think that's the primary issue. In some ways, it's more the workers who are uncomfortable talking about sex with older adults than it is the older adults' willingness to talk about sex themselves. In some ways we have to educate and counsel our counselors.
Frances Meléndez: Yes, I agree.
Sean Cahill: There have been some campaigns in the last few years. I know that ACRIA did a series of campaigns in New York City. One was titled "Age Is Not a Condom." And Gay Men's Health Crisis did some campaigns.
Actually, the New York City Council funded ACRIA to do trainings with senior centers in New York City. I think that's a really good model for the rest of the country, in terms of raising awareness and challenging stigma among staff, as well as older adults, in general, who participate in senior services and go to the senior centers.
Kellee Terrell: New York can be such a unique place. Do you think that on a national level it's still lacking in other places?
Sean Cahill: I think so. I think awareness is slowly developing. But we were at a conference at Howard University a couple of years ago in Washington, D.C., and it was convened by the Aging Department of the District of Columbia. And that's a very important city in terms of the epidemic.
So I think there is a growing awareness, certainly. But stigma is really important. The research shows that older adults tend to, or often, have really outdated understandings of HIV and how it's transmitted. Some of the things that we all remember from back in the '80s -- when people were afraid to shake somebody's hand if they had HIV, or thought they could get HIV from sharing the utensils that somebody else used the day before in a dining facility -- those beliefs are still out there. They're held by a lot of older adults who are clients of senior centers. But they're also held by staff.
There's a case at the American Civil Liberties Union, litigating, involving an older gay man who is HIV positive, who wants to live in a nursing home in Arkansas. The day after he went there, the administrators called his daughter and said, "You have to come get your father, because we can't guarantee the safety of our kitchen staff and laundry staff if he stays here."
So there's a lot of misinformation about how HIV is transmitted among care providers, as well as older adults. And that's a real problem.
James Masten: Yeah. I think it's also very spotty. I spoke at the HIV/AIDS and Aging Symposium in Austin, Texas. That community is responding really very actively by doing education and counseling. I was really impressed with this community-based response to people living with HIV/AIDS, the HIV prevention efforts, and also people managing and helping care for people who are living longer with the virus.
They understood who their community is, rather than having a one blanket response for a whole nation of very diverse communities. We have to help look at these communities and how they specifically respond to the concerns that they're facing, and develop models that work for various communities across the country.
Frances Meléndez: That being said, I'm thinking of what you said about communities. We assume that New York is different, and pretty savvy. I was at a conference dealing with death and dying, and grief and loss. The woman asked me what would I like to speak on at her next conference. I said, "I'd like to speak about HIV and AIDS and older adults." She said -- this is an RN, over 60 -- "Why would you want to talk about that? People don't die from that anymore. It's not a problem." I could not believe what I was hearing.
James Masten: That's the issue that we keep hearing, that people aren't dying, so it's not a problem anymore.
Frances Meléndez: Right.
James Masten: And there is a major problem with people living longer than expected, because of the multiple comorbidities these people are dealing with.
Kellee Terrell: James, that's a perfect segue into what we're about to talk about next. There are so many other issues that people living with HIV who are getting older have to deal with: Is it age, or AIDS or both? What are the some of the other health issues that older people living with HIV/AIDS have to grapple? Sean?
Sean Cahill: We did a survey at Gay Men's Health Crisis with about 200 older clients, 50 and above; and we found that most of them had an AIDS diagnosis. And they had, on average, three-and-a-half comorbid conditions. The most common conditions were depression, hepatitis C and hypertension. We also noted a very high rate of liver-related mortality among older people living with HIV.
So we're really just beginning to understand the sort of long-term effects of antiretroviral use and long-term effects of living with HIV on the body. But we have some preliminary sense that there are a lot of complications that come with aging, into old age, with HIV.
Frances Meléndez: Right. A lot of complications that may also be exacerbating the normal aging process, but may be exacerbated with the long-term use of the medications.
James Masten: And when people don't know what is causing: Is this HIV? Is this normal aging? Is this something I need to be concerned about that's a side effect of the medication that I've been taking?
Not knowing the cause directly affects how you address it. And a lot of people are very confused about what to do when a new symptom erupts.
Frances Meléndez: On the heels of that, there are a lot of wonderful doctors out there working with our clients. But there are also doctors that, who feel that,as long as the patient is responding to medication -- their viral load is undetectable, their CD4 is good, but their quality of life is not good -- that that's OK. They tend to have an attitude of "If it ain't broke, don't fix it."
In the meantime their patients are having increased physical symptoms, lipodystrophy: these types of issues that are not addressed. And also, patients do not feel that they can advocate on their own behalf. So this is the other issue with the aging population. It's quality of life versus just having a great viral load So they shut down when they do say something.
Kellee Terrell: I see this happen a lot regardless of age and even among some HIV advocates who only see HIV as the primary issue. There seems to be an inability to regard people in the community as holistic beings.
James Masten: I'm going to make a really important point about advocacy. And we look at depression, and the high rate of depression in this community. We're asking people to advocate for themselves at a point when they're ...
Frances Meléndez: When they can't.
James Masten: Exactly. They're feeling depressed and unempowered. And they have so few supports available.
I sometimes feel like we are in many ways, this period of time is like the early days of the epidemic, where there were a lot of mixed messages. It was very hard to hold on to everything that there was to be known about the virus, when there was new information coming out all the time, and some of the new information contradicted what it is that we thought we knew. And patients needed to be on top of things. They needed to get as much information as they could. They needed to listen to their bodies and advocate for themselves. And in many ways they needed to: on some level, they needed to partner with their doctor; and in some ways, they needed to educate their doctors. Because they were as much experts as the doctors were.
And I think we're going back to that because no one knows what it means to age with HIV. You know, we're just beginning to understand the medical complexities.
Sean Cahill: The New York Times had a piece, a month ago on cardiac issues among old people living with HIV, particularly long-term survivors. And they got into this issue of how a lot of doctors are up to speed on the latest research. And so there was a doctor who said, "You know, a decade ago, I didn't realize that this was an issue. And now I realize it was."
So sometimes the patients really do have to be advocates and have to bring in, you know, something and show their doctor; and say, "Hey, I need an EKG," or, "I need to have some kind of a monitoring of my heart health. Because I'm learning that long-term survivors of HIV are at higher rates of heart attack, and other kinds of cardiac issues."
And there's also things that people can do to lower their risk. We know that there's higher rates of smoking among people living with HIV, in this country, at least. And that's, a behavior that you can try to stop. And it can dramatically reduce your risk of heart problems.
Frances Meléndez: Well, also, obesity, which complicates all the other medical issues.
Sean Cahill: Yeah, there was an article in Current HIV/AIDS Reports in 2008. And it was about HIV and aging. But it talks about the association of HIV infection and antiretroviral therapy with obesity. So it's definitely an emerging issue that, 20 years ago, we didn't see. You know? Because people had trouble keeping weight on before the antiretrovirals came along. But this is definitely an issue that we're seeing.
Kellee Terrell: And what about mental health? James briefly mentioned that -- I want to revisit that. Is there enough focus or effort from clinicians to really be screening for depression when we're looking at older people? Frances?
Frances Meléndez: Speaking on my own work as a psychologist; I'm always looking for depression. But I think when you look at funding, that's looking for outcomes. A lot of it is outcome-driven; it's numbers-driven. So a quick screening that often is not enough; and it's a quick fix. Depression is complicated. It's on a spectrum.
Many places don't want to pay to have a psychologist. Like I said before: Funding dictates what a lot of organizations, community-based organizations, can do. So I think some of them provide screening, which is great; and then do a referral to place to refer their clients to for services.
And I think they're beginning to realize that you can't treat the body without treating the mind.
Kellee Terrell: And what are some of the dangers around depression, and seniors living with HIV, in terms of their own health , especially when it's not treated?
Sean Cahill: I think one of the biggest dangers is people not being treatment adherent. Depression, isolation and living alone, can sometimes correlate with people going off their treatment. That can be connected to substance use too, which can affect treatment adherence.
One of the great things about the Affordable Care Act is that one of the essential health benefits that will be provided to people was no copay, and that's a guaranteed benefit that will be provided in all 50 states, is mental health services.
So we have an opportunity. We have to work at the state level with people designing the health insurance exchanges, and so on. But we can ensure that there are culturally competent and clinically competent mental health services that are using harm reduction models that are clinically competent to provide services to people who are gay, or lesbian, or bisexual, or transgender; and help to address some of these root causes of treatment non-adherence.
Kellee Terrell: James?
James Masten: Another thing that I see in terms of screening for depression is that people self-report, "Oh, I'm fine. I'm doing OK." And it doesn't jive with people.
I participated in a large-scale study, where I was working with individuals and looking back on their depression evaluation, and finding out that they score depressed; but their self-report is, "Oh, you know, I'm doing fine. Doing great."
Frances Meléndez: You know, that being said, when you think about it, if your day-to-day activities are crappy and you kind of feel sad every day, it is what it is. You can't really pinpoint that you are depressed because this is your day-to-day living. It's struggling to pay the bills; struggling to do what you have to do.
The other issue with, when you look at the comorbidities, the substance abuse, HIV, domestic violence: that's just a history of trauma that correlates with risky behavior, the substance abuse. And mental health is so important. I mean, I think I'm so glad with the Act that those services will be in place. Because they really have been lacking. It's been very spotty, what's been available.
James Masten: And the magnitude of loss that's faced by this community.
Frances Meléndez: Yes. This view exists for many survivors. You know, the 82-year-old who said, "I'm still alive. Why?"
Sean Cahill: Right. And there's also another issue related to this: stress related to disclosure.
Frances Melendez: Yes.
Sean Cahill: My former boss, Marjorie Hill, runs a group for longtime survivors, a support group. She's a psychologist. And it's basically African-American women who have been living with HIV for a long time. Many of them, they keep their pills in a vitamin bottle. They are terrified that they're sister is going to find out. And they're worried that they're not going to be able to, you know, have a relationship with their nieces and nephews if their sister finds out.
And the long-term stress related to that, where they can't even, they can't talk to somebody really close to them -- they feel that they can't talk to that person to get support for what they're going through physically, you know?
Frances Meléndez: Physically and mentally.
This is so common. Running a group with Latinos in Iris House, it took two years out of the four years that they were even able to say "HIV." They called it "the illness." They said to me, "Well, if I don't say it, it's not real. It's not real."
And it's powerful. Denial is powerful. And to live with the secret.
Think about the psychological stress. And Sean and James are talking about it. And I saw this over and over. I'm in the process of doing research, narrative stories of women with HIV. And I couldn't tell you. Out of all those -- you know, I interviewed 15 women -- four out of those women can't even tell their sisters, their best friends. And they just cried and said, "I can't. They won't love me the same." And they are involved in community advocacy. And I was shocked.
James Masten: And that's where the importance of support groups and forming and finding communities is so integral. And for so many people -- back to long-term survivors, or back to what that nurse said -- who think that we are not living in a crisis anymore. So if I'm living, HIV is just a part of me now. And I've accepted it.
To be conscious of all the things we're talking about, and to think, "But I need a support to deal with these things" ... Yes. HIV has moved from being a terminal illness to being a chronic one. That just means you have different challenges, not that the challenges are all gone.
And, just as that nurse thought the challenges were all gone, many people living with HIV themselves need to be reminded of these real issues that they face, and that finding peers is integral to being healthy.
Sean Cahill: Right.
Kellee Terrell: Sean, I wanted to ask you a specific question about some of the mental health issues, and some of the stigma that you've seen among gay and bisexual men living with HIV who are seniors.
Sean Cahill: Sure. So, well, there's certainly a lot of stigma within the gay male community against people living with HIV. I've seen that. And then there's age-related stigma; there's a lot of ageism within the gay male community. And there's this phenomenon that we talked about in Outing Age 12 years ago called premature aging. And it's this sense that you think you're over the hill at a young age. So, like, people seriously think they're old when they hit 30, or 35, 40. So forget it when they're 50 or 60. And they have a, just, really low self-esteem and a feeling of low self worth, and that kind of thing.
So there's a lot of issues. And actually, lesbians have a much healthier outlook on life, in relation to aging. And that's shown from research, and just qualitative research with lesbians versus gay men. So those are some issues.
But then related to that, the broader social context is that, I mentioned earlier how a lot of older Americans have outdated, sort of, inaccurate views about HIV and how it's transmitted. Similarly, older Americans tend to be more homophobic, less supportive of legal equality for gay people. But also, they tend to disapprove morally of homosexuality at higher rates.
So there's a number of questions that have been asked over the last 25, 30 years. And they tend to respond in a more antigay way to those questions. And that affects, certainly, particularly gay men living with HIV, who are in mainstream senior settings, like a meals program or a long-term care facility. But it actually affects everyone living with HIV. Because I really think that the antigay stigma is sort of inextricably entwined with HIV-related stigma, and that it even affects heterosexual women and men who are living with HIV.
Kellee Terrell: I want to talk about dating. A few years ago, I gave a talk at an Iris House summit called "Dating While Positive" and there were a lot of women in the room were 50 and older who were trying to find love. And it was really hard for them.
What are some of the challenges in dating for anyone over 50 and positive? Especially if you are looking for a partner that may not be positive. Sean, you were talking about older folks having, negative older folks kind of having these really preconceived notions around HIV. How does that impact how seniors living with HIV are feeling about themselves?
Frances Meléndez: I think it impacts and adds to the depression and the isolation. Often it's about disclosure: I can't disclose; I won't disclose; I'm terrified. I was at a conference for over-50 women. And I remember this advocate got up, a Cuban woman, and she said that for her, although she was an advocate, HIV for her meant loneliness forever. That shocked me. Because she said, "I will never, ever have a partner."
But she had already decided that no one would ever accept her. And that saddened me, to hear that. And that was the story for many women. Or, that if they were in relationships, they didn't disclose , which is another problem.
So disclosure in relationships is very, very, very difficult. I mean, I love the Dating While Positive because I think for some of the younger population, they were able to do that. But for the older population, they were very resistant to that concept.
James Masten: I think for gay men, the magnitude of loss has to be factored in, in that so many of the men that I have talked to have lost partners and friends. I have heard many men say, in one way or another, "Oh, well, that aspect of life is over for me." "Dating? Oh, that's something of that past."
And one guy I talked to -- I call him George in the book -- said how he wasn't going to get another cat after his cat died. He was very, very close with his cat -- it was his form of support. And he wouldn't get another cat because it was just too hard to deal with the loss. And he couldn't imagine going through that again.
Now, on some level, he was talking about this cat, as a companion. And on another level, it was a metaphor for how much loss this man had experienced in his life, that forming any new relationship; all he could see was, what it would be like to lose that.
Sean Cahill: The only thing I'll add to that is that POZ magazine has a Website, POZ.com, and they have a dating service on the Web site called POZ Personals. And I've heard great things. People finding other people who are positive, particularly gay men: it's a real relief. Because they're not just not having to worry about disclosing and possibly being rejected because of their status; but they also have this thing in common. And not just in terms of the physical impact of HIV, but also the sort of mental anguish of being HIV positive in a society that still stigmatizes it. And so, in that sense, they're finding somebody that can be supportive of them and their challenges. And I think that's a really great thing.
But for people who are, who do, fall in love with somebody who is not positive, and they want to have a relationship with them, the biomedical research that we're seeing -- and where we're seeing some promising results from pre-exposure prophylaxis: basically taking antiretrovirals to make your body less receptive to HIV infection. That holds great promise for people in serodiscordant couples.
There was a big study with heterosexual serodiscordant couples called Partners PrEP that showed really high rates of efficacy. There were two different drug formulations. One was tenofovir, and the other one was emtricitabine/tenofovir. And one had a 67 percent efficacy, and the other one had a 75 percent efficacy, which was a lower HIV-infection rate, compared to people taking a placebo.
And so you know, we need to have studies that look at serodiscordant gay male couples, as well, to see if this is something that could benefit them. But another study with gay men, called the iPrEP study, showed efficacy for that population.
So, long term, pre-exposure prophylaxis could provide additional protection for the negative partner in a serodiscordant couple, whether it's a gay man or a heterosexual man or woman.
Kellee Terrell: What do you think clinicians can do better in treating seniors with HIV?
Frances Meléndez: Listen: I think that's what they can do better. And be up to date on the research. But to listen to the needs of the clients, which I think that, you know, it's not imposing your belief system, but to hear what they have to say. And they really are the experts in their life, and in being HIV positive.
James Masten: Of course, I was just thinking how doctors now have 15 minutes to see a new patient. And it's what's expected of them. I guess I have some empathy for them, as well.
One of the things that I wanted to make sure that people are aware of is that the American Academy of HIV Medicine recently came out with recommended treatment strategies for people living with HIV over age 50. And so there are guidelines out there, and there are collected information about it. We're beginning to learn more and so people do have; there is access to information for clinicians.
Sean Cahill: I think the clinicians can better educate themselves about health disparities affecting LGBT people, and how those intersect with racial disparities. Particularly with this epidemic, we see that black gay and bisexual men, and transgender women, and Latinos, to a lesser extent, are disproportionately affected by the epidemic. So the intersection of sexual orientation and racial disparities is really critical.
And I understand that they're under huge time constraints, increasingly, like James just said, but they really should be asking their patients about their sexual orientation, as well as behavior. And they should do it on a periodic basis. They shouldn't just do it at an initial visit. Because somebody might become more comfortable with the provider, and over time be willing to disclose something that they're not willing to disclose right off the bat.
Also, people's identity changes over the course of their lifetime, whether it's their sexual orientation identity or their gender identity.
And then the last thing is, we really want to make sure that providers are treating people based on the standard of care, and not based on cost concerns. A key goal of the Affordable Care Act is to reduce costs and improve the efficiency of medicine. But it's critical that people be provided care that's based on what the standard of care is for the disease and set by the profession, and not solely based on concerns about cost.
So that means that if you have an older patient who you think might have a potential heart condition, heart problems, that you refer that person to a cardiologist and consider other specialty care, in addition to providing primary care.
Kellee Terrell: What is your advice to older people living with HIV?
Frances Melendez: At least for me, the issue is to really help empower clients to be able to advocate for themselves. Like you said, it's 15 minutes. How do you go in prepared to have a 15-minute session, and maybe write down exactly what the issues are to help you remember what's important to you when you go see that doctor. And that, for me, is self-advocacy. It's first and foremost.
James Masten: I have this 10-step strategy toward optimal aging with HIV. But I think I can really reduce it down to one word, which is adapt. Living, aging, with HIV means managing a great deal of change, whether it's the changes of the course of the illness, changes in the community, changes to your support system and your family structure, and in your body.
Some of the coping strategies that you might have developed to deal with HIV might not be the best coping strategies to deal with HIV at this stage of your life, to deal with living with HIV. So it's a constant reevaluation, and reassessment of how I'm doing. How am I coping? And that's a lot of work. And who are my supports? And have I given up on something, some area of life, that might not be in my best interest to let this go? It's a challenge to remain adaptive and resilient.
Sean Cahill: What I would say in a phrase is, "Love yourself, take care of yourself."
So many people are working now, compared to, say 20 or 25 years ago. Many people with HIV are working full-time jobs. And, you know, it's hard. Living with HIV for decades is hard on your body. And I think people need to strike a balance in their lives, and keep things in perspective, and not allow work-related stress to become too great.
And really, to not settle for less than full respect from your family, your friends, your health care provider, I think is really key. So people should just love themselves, feel confident, and demand the best from the people they interact with, and the world.
James Masten: I would also like to add, that as a clinician, as a researcher, as a social scientist, that we want to advocate for the care of people that we want to help. And in some ways, sometimes, we do that by presenting the worst-case scenario, or how dire the picture is. And it's harder to point out that -- in my work I have also seen incredible strength and resilience. And the answer, you know: as Frances said, people have that in them already. They know what to do. And it's building on those strengths. And it is reforming, forming communities with people who are doing it, who are maybe better in one area, have some answers in how to deal with your doctor, whereas you've got strengths in other areas.
So I've often seen it's people who are doing very well adapting to aging with HIV, and who use all the strengths, all the lessons that they've learned in life to help manage, help them at this stage in their life. So I want to make sure that that comes through, as well.
Kellee Terrell: That's such a wonderful point James. Thank you. Sean and Fran, do you have any final thoughts?
Frances Meléndez: I just want to say thank you for saying that. Because I think that's one of the things I believe in too -- to look at the strengths that people bring to the table. Because it takes courage to live every day, having to take X amount of pills, for a multitude of issues that may be going on. And I think it is courageous to make the decision to live a healthy life, and to see what comes to the table as strengths, and build on that. So I appreciated that comment. Because that's huge -- to see the resiliency in the people we work with.
Sean Cahill: Right. And you know, as millions of Americans, are hitting age 65, and entering the senior care system; I think that people with HIV have a lot to teach the rest of the country.
Like you said, James, they have been advocating for themselves for, you know, for 30 years. They had to because the government wasn't responding at the outset and there was a lot of negative reaction, homophobia, and so on.
And so I think that people living with HIV and AIDS, as well as other activists working on the issue, have a lot to teach the rest of the country in terms of how to create a comprehensive system of care, that addresses not just the physical health needs, but the mental and spiritual health needs of people living with this chronic disease.
This transcript has been lightly edited for clarity.