January 29, 2008

Aging Grace: Facing the Uncertainties of Growing Older With HIV

On the morning of January 6, readers of The New York Times awoke to a sobering headline: “AIDS Patients Face Downside of Living Longer.” The article highlights the stories of two fifty-something HIV-positive men, both of whom boast a disheartening list of ailments more typically found in much older people. Both men seem uncertain about how they might navigate a bleak future filled with illness. The article credits antiretroviral drugs for giving one man back his life and hopes for the future, but poses the question, “at what cost?”

Some readers recognized their own struggles in the men’s stories and felt validated. Steven Deeks, MD, a prominent AIDS researcher and doctor at the University of California San Francisco’s General Hospital, said, “Several patients sent me e-mails saying that finally someone was talking about the important issues that were affecting them.”

Others, like Rona Vail, MD, an HIV specialist at Callen-Lorde Community Health Center in New York City, worried the article may have stated the problem of living with HIV in such dire terms that it could make people with HIV more pessimistic about their futures. “We’re already such an ageist community that I worry people will be that much more afraid of getting older,” she said.

The article clearly touched a sore nerve when it highlighted the lack of existing research that might explain how much worse the aging process may be for people living with HIV. Confronted with a limited amount of data to help predict what lies ahead, it is no wonder some HIV-positive people and health care providers are anxious about what the future may hold.

Fortunately, researchers have begun to investigate both the prevalence of varying age-related illnesses in people living with HIV and how underlying mechanisms behind some of those health problems might work. Some ailments, like heart disease, have received a great deal of attention, and experts are growing more confident that they understand the contribution HIV plays in worsening the condition. One piece of good news is that lifestyle changes and certain treatments shown to be effective in HIV-negative people are also proving beneficial for people living with HIV.

The challenges of aging, of course, go beyond physical concerns. Aging also affects our minds and emotions. A number of studies have found that depression and social isolation are more common in older HIV-positive adults. These conditions can be dealt with—provided that people are aware of the problem and willing and able to do something about it.

The bottom line is that while there are many unknowns when it comes to growing older with HIV, and while some HIV-positive people may face greater health problems than their HIV-negative counterparts, there also is a great deal that can be done—for the mind, body and heart—to ensure people who are living with HIV have the opportunity to age as gracefully as those who are not.

What’s more, those who have already faced the difficulties of HIV throughout their lives may be better positioned to deal with new health challenges that emerge later in life. Charles Emlet, PhD, an associate professor of social work at the University of Washington at Tacoma, and an expert on HIV and aging, is impressed by the ability of so many people living with HIV to overcome hardship and illness. He says, “For many [positive] people that I’ve talked to, [even] in the midst of all these issues of [aging, illness] and loss, there’s a sense of resilience and strength.”

What Do We Know About HIV and Aging?

When asked this question, several experts point to our growing knowledge of heart disease in those with HIV. “We now know that HIV itself is an inflammatory condition and that heart disease is related to inflammation. So just being HIV positive can increase that risk. That’s what we found out in the SMART study. When people went off their [HIV] meds they were more likely to have heart disease than people who stayed on their meds,” says Vail.

On the other hand, HIV meds can also contribute to the problem. Vail adds, “Certain medications will increase your triglycerides and bad cholesterol, but HIV all by itself lowers your good cholesterol and raises your triglycerides. So I think there’s a lot of interplay between the two.”

Lifestyle factors also play a major role in heart health. In a 2006 groundbreaking study of HIV-positive New Yorkers aged 50 and older titled “Research on Older Adults with HIV” (ROAH), the AIDS Community Research Initiative of America (ACRIA) found that 57 percent of those surveyed were current smokers and that 84 percent had a history of smoking.

“Traditional risk factors are very important in why we are seeing early heart disease and cancer. It's possible that these risk factors are more important in the context of HIV infection because individuals are being exposed to the traditional risk factors plus their HIV,” says Deeks. He adds, “It may be that one plus one is far greater than two in terms of the impact of a risk factor on aging-related complications.”

In a finding that surprised many, another heart disease risk factor—being overweight—was also found to be more common in a cohort of people living with HIV. Being overweight increases a person’s likelihood of developing adult-onset type II diabetes, which in turn greatly increases a person’s risk of heart disease. The current research shows that some HIV medications can reduce the body’s ability to handle blood sugar, but the role that HIV itself plays on blood sugar levels remains less certain.

“Everybody has to face aging, but [people living with HIV are] going to be facing much more serious issues, for instance diabetes,” says Jules Levin, a long-time survivor of HIV and hepatitis C and the Executive Director of the National AIDS Treatment Advocacy Project (NATAP) in New York City. He asserts, “Diabetes has yet to be really addressed in HIV.”

What About the Impact of HIV on Bones?

Levin is quite familiar with another age-related issue—poor bone health, also known as osteopenia and osteoporosis. He feels that low bone density—which, research suggests, occurs more frequently in HIV-positive people, notably those on antiretroviral therapy—was responsible for a broken wrist he suffered a few months ago. The condition also made it harder for his body to heal the broken bone. He says, “I’d heard people talk about [osteopenia and HIV], but I was doing so well [that] I ignored it. I should have had a DEXA scan. Everybody with HIV should have a DEXA [scan].”

DEXA, or dual-energy x-ray absorptiometry, scans can determine the density, and thus the health, of your bones. They are typically reserved for people who have common osteoporosis risk factors, such as women who’ve gone through menopause or people with thyroid conditions or a history of corticosteroid use. Consequently, people who want a DEXA scan but don’t fall into the typical risk categories may face a battle with their insurers.

“The problem is there are no recommendations [about the need for DEXA scans for those with HIV] from our thought leaders,” says Levin. “There’s no education of the community and doctors, and there’s no research going on. And that’s why people have trouble getting their insurance companies to pay for DEXA scans.”

A related problem being seen in younger people with HIV is bone death, or avascular necrosis, which can necessitate hip and other joint replacement surgeries. When asked whether it’s the virus or the HIV meds most contributing to bone problems, Vail says, “I don’t think we have the information.”

In many cases, increasing calcium intake, quitting smoking and exercising regularly can prevent or halt the progression of bone problems. There are also treatments for osteoporosis, but pills aren’t always the best answer.

In fact, turning to pills to treat the multitude of ailments affecting older people, given how those pills can interact with each other and with HIV meds, is one area that begs for additional research. When asked to identify one of the bigger unanswered questions on HIV and aging, Vail answered, “More information about drug interactions [is needed]. As people get older, they need to be on a ridiculous number of medications.”

Another important area requiring further exploration is defining when and how physicians should screen for age-related illness in their HIV-positive patients. “Should we be screening differently?” asks Vail. “We use age 50 [as a guide for when to start] colonoscopy, and prostate testing, but is this [age also] appropriate for HIV? When should we be screening for osteoporosis? We need more and more data on better screening and early detection of cancers, and other kinds of problems.”

How Does HIV Affect the Mind Over Time?

As we age with HIV, the disease shows its effect on our minds, as well as our bodies. Given such high rates of AIDS-related dementia early in the epidemic, there has been some concern in the research community that people aging with HIV may suffer more from cognitive disorders—despite being on effective antiretroviral therapy—than their negative counterparts. Levin shares this concern, asking, “Are we going to be seeing more Parkinson’s disease? Are we going to be facing increasing [incidence of] Alzheimer’s? Are we going to be facing more dementia?”

To date, studies evaluating the effect of age on cognitive functioning in HIV-positive adults have yielded mixed results. Though some have found an increase in cognitive problems in HIV-positive people as they get older at least one study failed to detect differences in cognitive disorders between older HIV-positive and HIV-negative people.

Researchers have observed one profound difference, however, between the mental health of aging HIV-positive adults and their negative counterparts: Whereas people in the general population tend to complain less often of depression as they age, those living with HIV have rates of depression that remain elevated into older age.

In fact, the ROAH study found 52 percent of the older HIV-positive New Yorkers they surveyed suffer from symptoms of depression, with 26 percent categorized as “seriously depressed.” The study’s principal author and director of research at ACRIA, Steve Karpiak, PhD, admits to being surprised by such high rates of depression, particularly in a group of people who were, on the whole, receiving very good health care. “There’s a depression that occurs post-diagnosis, and we understand that,” says Karpiak. “And granted, there’s substance use here too. But why [are the rates of depression here] so high?”

Deeks has observed a similar phenomenon in his patients. He says: “For reasons that remain unclear, many individuals who have been on long-term [HIV] therapy have persistent fatigue, malaise, pain and difficulty concentrating. Most of these symptoms are vague and most are often blown off as depression. Many are symptoms common in other chronic illnesses, particularly those associated with autoimmunity [diseases of the immune system]. Because these are difficult issues to quantify, many researchers are afraid to tackle the issue.”

While depression, when diagnosed correctly, is a highly treatable condition, other conditions found in the ROAH study that affect people’s emotional well being can’t be handled with a pill and a smile.

The Need for a Strong Social Network

According to the study, 70 percent of HIV-positive New Yorkers surveyed are living alone—more than double the percentage of elderly HIV-negative New Yorkers. The study also uncovered fairly high rates of social isolation, fear of HIV disclosure and loneliness among the participants. Such problems are likely to have a profound impact on people’s lives, particularly if they are simultaneously dealing with other age-related health issues.

Emlet explains the consequences of social isolation by saying: “As we get older, we know from years of gerontological research that one’s social network is going to change. It’s going to change because of loss [of friends and family to death] and it’s going to change functionally by access. If you’ve got some very close people in your social network but you’re too ill to get to them, or they’re too ill to get to you, it’s going to impact [your life].”

People whose social networks are already small or fragile are likely to have an increasingly difficult time as they get older. Emlet urges people to ask themselves, “What skills do you have or not have as an individual that you take into older age that might either positively or negatively impact your ability to maintain and even construct social networks?”

As people age and develop a greater need for informal care—which can range from having people run errands for them to more hands-on care like administering medications or help with bathing—their social networks become increasingly important. It is estimated that the amount of informal caregiving provided by average Americans each year to their family, friends and neighbors would cost more than $300 billion if it had to be provided by professionals. And, if people living with HIV remain socially isolated, their growing needs as they age will likely have to be provided by a social service system that is already stretched to the breaking point in many parts of the country. With an ever growing population of people with HIV over 50, advocacy is imperative to ensure that vital caregiving services are there when people need them.

In addition to advocating for increased funding, Emlet says both the gay and the mainstream community need to confront the tendency to devalue older people. He comments: “There was a great quote from a man in a study I did a couple of years ago, and he said, ‘Ageism. It’s a far mightier sword than HIV.’ He talked so eloquently about how incredibly ageist the gay community is and [how he struggled] with loss of physical health and physical beauty and maintaining one’s self worth in the midst of that.”

In addition to advocating for increased services and fighting our communities’ ageist attitudes, we must also help people strengthen their existing social networks and build new ones. Emlet says, “I’ve had a lot of older clients say to me, ‘You can’t teach an old dog new tricks,’ and that’s absolutely untrue! Given the [right] support and skills, people can make changes in their lives.”

So, Can HIV-positive People Look Forward to Aging Gracefully?

Levin says that changes on every level—medical, social and personal—will be needed to address the age-related crisis he feels is looming large on the horizon, especially for people with HIV. He was glad to see that the article in the Times “raised peoples’ eyebrows,” but he cautions: “I think that [it] actually underestimates the problem.”

At this point, based on existing research, it’s difficult to estimate just how big a problem age-related illness is going to be for people living with HIV. Karpiak points to a recent study of HIV-positive veterans that found, when it controlled for a number of factors like age, lifestyle and immune system status, that men with HIV have more liver and kidney problems than HIV-negative men. Other studies have found higher risks for heart disease in people living with HIV, despite the success of antiretroviral therapy.

Deeks says: “The only thing we know for sure is that individuals whose virus is suppressed on long-term HAART generally do well, as long as their CD4 counts [rise] into the normal range. Those individuals whose T-cell counts do not normalize appear to be at risk for complications that are typically seen in much older individuals. This includes [the incidence of] cancer and heart disease.”

Vail, however, takes a slightly more optimistic view, saying: “I think that as we learn more, people will continue to age better. The more information we have, and the more awareness we have of this issue, then I think it’s not an inevitability that people will have a bad aging process.” She adds: “Let me tell you, I have two patients who are eighty and two patients in their seventies. Yes, they’ve got some problems. They’ve got a little bit of arthritis, a little bit of diabetes and a little bit of high blood pressure, but they’re actually living well and doing well.”

Karpiak says that when he was recruiting people for the ROAH study, “For every sick person that we found, we’d find four other people who were healthy.”

Whether or not you take an optimistic view of how well we’ll deal with an aging HIV-positive population probably depends largely on where you sit. Those who’ve already suffered from early onset of heart disease, bone problems or other age-related diseases have good reason to suspect there is a growing problem. Those in good health, despite growing older with HIV, may be more inclined to agree with Vail and believe we’ll learn to handle at least some of what we need to, in order to soften the combined blows of old age and HIV.

The one thing that the ROAH study urgently revealed was, regardless of how well a person is doing medically, dealing with life on your own is going to be that much harder as you age. And so, as it has been with many other issues over the course of the epidemic, the best hope for a brighter future will probably lay in the bonds that HIV-positive people form with each other—bonds that, over the years, have brought thousands through sickness and uncertainty and changed policies and society in ways many thought impossible. Emlet agrees, saying, “I think that what ends up happening is that people find a lot of strength in connecting and talking to other people that are in the same boat they are, and they should find and use venues [like support groups and online forums] to support each other.”

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Previous Comments:

Nade, new york suburb, 2008-03-13 14:26:44
POZ, thank you for this article, we need it. Please keep them coming . I am long term survivor 20 yrs and counting at age 58. I hope more studies and remedies are forthcoming in future. To all my counterparts out there, find support if possible or hook up in either groups or chat rooms so you can ventilate and relate about your feelings. Or go to therapy, it has helped me and will help you.

Gregg Levendoski, Warner Robins, GA, 2008-03-07 09:35:40
Very informative article. I am 46 and poz 4 19 years and my GF is 50 and poz for 18 years. We see many good things and face several of the negative effects of being poz and aging but also the long term effects of this disease. We look forward to hearing more on this issue.

Alberto, San Francisco, 2008-03-05 22:09:07
I am 54 and still fighting AIDS... for over 23years. This article is so true. However it does not talk about our challenges with healthcare and disability insurance company. What drugs are covered and not covered... yearly evaluation of contitions that have not changed...not to mention we are getting older. I am also hearing how specialist are not accepting HMO... but PPO.POS and MEDICARE with MEDICAL. It's a challenge for most of us under HMO and dealing with dounut out of pocket cost.

Glewis, Burbank, CA, 2008-03-05 19:24:35
Finally, after thinking it for many years, I read about a correlation between hiv disease and treatment and a link to fatigue (that is thought to me part of depression). I'm not sure what I'll so with this data, but it was sure nice to read it.

Tim, SF, 2008-03-04 19:31:57
I relate to this 100% as I'm turning 56 this month and have had HIV for 24 years now. Thank you for this as it helps me steer my choices so I can thrive longer and healthier.

Jens, , 2008-02-27 12:52:17
More information about drug interactions is needed. My girlfriend suffers from HIV - 13 years on HART -, diabetes and bipolar disorder. Each of 3 specialized doctors tries to optimize his/hers treatments, result so many pills that you realize that one day she must reduce. But how? Doctors do not know.

Vicente, New York City, 2008-02-25 17:30:17
Thank you for this very useful article. To Carlito and others in the NYC area who need a safe place to sort out their feelings and receive support, check out Friends In Deed www.friendsindeed.org It has helped me a great deal. Best to all.

Vicente, New York, 2008-02-25 17:22:36
Thank you for this very useful article. I am 57, diagnosed HIV+ in 1987, and probably infected in 1982. With 13 tcells in 1991, I was given less than a year, but for unknown reasons I have survived thus far. Doing well except for neuropathy and persistent fatigue. I have wondered about the incidence of HIV and 20 years of medications in the aging process and up to now I wan't able to get any hints, let alone answers. That's why I am so grateful for this article. Tyhank you and best wishes.

Danny, St Petersburg, Fl, 2008-02-17 12:04:09
While reading this artical there was a news report of bush's trip abroad to reinforce aid for hiv/aids in foren country's. Why do's he give so generosley to tother country's and leave Americans who have contribated in many ways to America living in poverty and in need of medications as well as many other things, it seems he again has no idea. We need Fed funding for assisted living here in the US spacificaly for people living with HIV, we can help each other in many ways.

April, , 2008-02-17 10:32:41
I was diagnosed at age 19. I am now 28, and have recently starting questioned how long I will live. I face HIV alone- only my family and a few friends know I am sick. There is so much stigma that still surrounds HIV. I hear and read jokes in my workplace that make me sick. To look at me, you'd never know I am sick. It gets very depressing, thinking of how much shorter my life will be than that of others. I just take one day at the time and try to live life to its fullest.

Stella B, , 2008-02-16 21:09:22
I was relieved when I read this article to realize that I wasn't the only one who felt that aging with HIV is a precious gift? I have been poz for 17 years. I am now 45 and considered a long-term non-progressor. I do suffer from depression due to the longivity of the social isolation and the uncertainty of my future. I currently have a regime of anti-depressants and pain killers besides my daily hiv meds. It's not easy..

Carlito, New York, 2008-02-13 16:00:48
i was diagnosed HIV+ yesterday 2/12/08. i am so scared right now... i need some friends who can understand me to lift my spirits, pls help...

John, Philadelphia, 2008-02-12 10:33:31
Researching gay long-term-care facilities, I find that they're all in small towns in the Southwest, leaving people at the mercy of an isolated facility without transportation. I tried to impress on a similar local business the importance of putting us with our own in a major NE city, where walking keeps us healthier and medical care is closer. The only way it will work is if it makes money.

phyllis marks, new york, 2008-02-09 00:57:41
I'm 65 years young and have been living with aids since 1986.The disease itself has had it's peaks and valleys my attitude towards those situations was not dependent on the circumstances of any one situation. You do fail to mention women, and any studies especially joint and bone problems that aI am experiencing. Hello to jules Levin my friend.

Celestial, Fremont, 2008-02-07 17:22:36
As a long term survivor (23+ yrs), I find all these studies disheartening. They have yet to do conducive studies on how HIV effects women -short-term or long-term. Unlike the gay community which has tremendous support-hetro HIV+ women have very little to no support systems. For women historically are too busy worrying about everyone else & caring for others, while their lives slip away. We are shrouded in fear, shame, guilt, ignorance & abuse. How long will we be in the shadows?