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Growing Older With HIV: What Concerns You Most?

November 15, 2013

Who Are We Not Talking About Enough

By the year 2015, the majority of people living with HIV/AIDS in the U.S. will be age 50 and older -- due to the longer lives brought by modern HIV treatment, and to the fact that one in six new diagnoses of HIV is an older adult. Growing older is a vexing prospect for many people as it is, and living with HIV, or receiving an HIV diagnosis, can bring a host of complexities to this life phase.

As the length of life among people living with HIV expands, what are community members' worries about the quality of those lives? We asked this question at conferences and via our weekly newsletter; the responses trace paths to advocacy for a wide range of increased support for older adults living with HIV.

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Alan McCord

Alan McCord

Project Inform, San Francisco, Calif.

Aging with HIV is going to complicate just getting older. It's going to challenge the health care system. There are lots of barriers for people aging without HIV, let alone those aging with HIV who are getting into their 60s and 70s. There are a lot of neurocognitive issues that are going to be more pronounced for those living with HIV. There's going to be isolation, social issues, medical issues, such as polypharmacy -- taking too many drugs, drug interaction. Trying to keep up with it all at 60 or 70, while facing financial issues as people are retiring, makes for a rather complicated area of gerontology.

My concern is that we're not ready for all of those things. What I do find hopeful is that the Affordable Care Act is going to ease some of those things once it gets rolling -- that it will be more favorable to the older generation so that more people have access to more services.

Antwan Nicholson

Antwan Nicholson

My Brother's Keeper, Inc., Jackson, Miss.

As you get older, knowing your overall health -- knowing that dealing with a number of different diseases is a possibility -- is a concern. Being a part of knowing what health issues are out there, as far as heart disease, blood pressure and things like that, is important -- just having that information and knowing that these things can affect you too.

Brandon Wollerson

Brandon Wollerson

Travis County Integral Care, Austin, Texas

I'm concerned that the community itself, the lack of social support, and isolation are probably going to be the biggest issues that folks aging with HIV are going to face. Generally speaking, they may have had to create their own sense of community because they've been isolated from families, or their closest friends died with HIV 15 or 20 years ago; so isolation is going to be the biggest issue.

Cedric Sturdevant

Cedric Sturdevant

My Brother's Keeper, Inc., Jackson, Miss.

When I think about HIV and aging, I think about the other chronic conditions that may come along with it. I mean personally, I'd be concerned about lipodystrophy, especially in my stomach. But other concerns could be how medications that you may be taking for other health issues interact with HIV, and the medication that you take for it; how HIV coincides with issues like bone problems -- because the bones kind of decay as you get older. How is HIV really going to affect all of that?

Eddie Matos

Eddie Matos

Newark Beth Israel Medical Center, Newark, N.J.

The concern is the lack of education that is provided to seniors. People are living longer with this medication and the reality is that no one is doing anything about seniors and senior care and how they're going to deal with this situation. My biggest thing is that they may not have resources and medication available to them.

Fifty-and-Change

"Fifty-and-Change"

St. Paul, Minn.

I think the most worrisome thing is that at some point I'll lose control of my health. I'm 51, and have always taken very good care of myself -- diet, exercise, social activity, etc. Since being diagnosed in 2006, I have come to fear a time when none of that matters. A time where HIV wins, and I deteriorate in spite of any efforts. Scary.

Gerad Aychiluhim

Gerad Aychiluhim

Harar, Ethiopia

I am 54 years old and an instructor in a small teachers college for a living. I was diagnosed in 2007/8. I have been on ART for the last six years. My major concerns are my CD4 cell count, which is around 200, not increasing; and fear of catching some related conditions such as hepatitis and kidney failure.

I'm also concerned about who will take care of my 8-year-old son if something were to happen to me. Thanks to donors we in Ethiopia are getting care for free. Besides, I am strong, happy, and looking ahead to the day the HIV vaccine becomes functional.

Ian Morton

Ian Morton

UC San Diego AIDS Research Institute, San Diego

For me, having access to some of the researchers in that field, seeing the research of how HIV continues to affect the body, age the body, even in the best-case scenario, even when you are virally suppressed, is my biggest concern.

Jacquelyn Williams

Jacquelyn Williams

Newark Beth Israel Medical Center, Newark, N.J.

I'm concerned that they get the proper health care. That they are able to see the doctors when they need to see them, that they get transportation to the doctors and stuff like that. Dental care, specialty doctors for kidneys, heart doctors and stuff like that -- because a lot of the time people can't get around if you don't have a driver's license or a car, and getting around is important.

Jojo

"Jojo"

Kansas

I am HIV negative; my husband is 52 years old and HIV positive. And I worry about dementia. I worked in the medical field as a caregiver working with dementia patients and saw my father suffer with it. My spouse takes great care of his physical health, but my concern is for his mind. What can he do to keep it healthy as well?

Katherine Cantrell

Katherine Cantrell

City of Austin Health and Human Services, Austin, Texas

I would say that a concern is health complications being mistaken for something else besides HIV, and an opportunity to test older adults for HIV being missed as a result. A lot of things when you're aging go right along with complications from HIV, so some physicians who are not familiar with the virus and are not familiar with how it progresses could mistake them for different things, and in turn cause some damage for people who are living or aging with HIV and don't know it.

Lillibeth Gonzalez

Lillibeth Gonzalez

Advocate, New York City

As I age with HIV (21 years positive) there are many concerns I have, for example vision, arthritis, osteoporosis, hypertension, depression, cognitive impairment, dementia, and lack of social support.

What worries me the most about HIV and aging is heart disease and cancer. In addition, older adults tend to smoke; cigarette smoking causes lung cancer, heart disease, and other problems. As I age I worry that I might get a heart attack and stay paralyzed, or get breast cancer (it's hereditary on my maternal side), or get cancer in the lungs. Any type of cancer scares me.

I have been treating my HIV condition for 21 years. I do not want to have to deal with cancer since that will add another treatment regimen like chemo or radiation and the state of mind that brings can make one depressed.

HIV accelerates the aging process and magnifies its effects. That's why it's important that you as a patient maintain a great rapport with your health care provider, and get routine medical checkups for blood pressure, cholesterol, bone density, vision, hearing, etc.

Lynda Arnold

Lynda Arnold

Blogger, Los Angeles, Calif.

I am most concerned about continuing to receive social security benefits as well as comprehensive health care as I get older. Dealing with medical issues that arise as part of the aging process and then those as part of the HIV disease process can be tricky to sort out and then treat without proper, attentive medical care.

I also worry about economic stability since I have been labeled permanently disabled and have been out of the workforce for so long; if that changes due to a longer life expectancy I worry about what meaningful and gainful employment I would be able to find in a whole new modern world in which I have not been able to keep my skills current due to my disease process.

Matt Ignacio

Matt Ignacio

National Native American AIDS Prevention Center, Denver

My concern is having those voices represented. I think as people grow older, maybe their voice isn’t as loud, and space may be not as readily created for older folks. So my concerns are inclusion, and just honoring the fact that these people have lived such a long journey with HIV that they should be respected and valued as teachers.

Michael James

"Michael James"

My concern is growing older totally alone. Like it or not, there is still a heavy stigma with this disease; and there is only a small percentage of people that will be there for you at the end.

I happen to be a straight man and have largely kept this condition private; so the lack of a female partner, limited friends knowing, and even keeping it from most of my family almost guarantees that I'll suffer through the end by myself with no support.

Patrick Ingram

Patrick Ingram

Fredericksburg Area HIV AIDS Support Services, Fredericksburg, Va.

On World AIDS Day 2011 my life changed forever. I am now approaching my second year being diagnosed with HIV and in those years I have not gotten any younger. At the U.S. Conference on AIDS in New Orleans this year I sat in on an intergenerational discussion for people living with HIV. In the room there were people with ages ranging from 18 to 70+ years of age. Mark King, blogger and creator behind myfabulousdisease.com, made a funny statement during a brief interview we did at USCA when he told me that his HIV antibodies were older than me. I have already faced the reality that there is a possibility that I may be living with HIV for a while -- and the understanding that I need to take the necessary steps now to ensure that my physical, mental, and spiritual health are in tip-top shape.

Although I am in my mid-20s I still am concerned with growing older with HIV. I know that cure research is very close to accomplishing its mission; however, there is no definite timeline when that is going to be. My biggest concern about growing older with HIV is if there is still going to be funding and support lined up for individuals like myself who are living with HIV. Funding streams are drying up, many community-based organizations are closing their doors or downsizing, and unfortunately it is affecting the many people who utilize those things as a lifeline.

Another major concern for me as I grow older is stigma surrounding HIV. I wonder if stigma will ever decrease, go away, or in a worst-case scenario, grow worse. This is why I focus so much in the meantime to continue to be active on social media, be completely open about my HIV status, and continue to accomplish feats like running marathons to show others that HIV does not define who I am.

Pierre

"Pierre"

Québec, Canada

As a real senior (I was infected in February 1980 and diagnosed in 1985), I have been through a lot of despair, at one point stopping all medication. On the other hand, I was also one of the few lucky ones who were recognized as disabled in 1995, and will live on a disability pension from an insurance company for three more years, until I reach 65.

My main concern is the same as it was on Oct. 28, 1985, when I was diagnosed, namely that I will finish my days alone. I am not too keen on starting a relationship with a negative man as I feel that this has been a contributing factor in the interruption of my last relationship; on the other hand, finding an HIV-positive man when you are 62 years old appears to be very difficult. Negative gay men now mostly reject poz men readily.

I do not have money concerns, and living in Québec I know that medical services will be available, free and of high quality. I also know that my meds will remain available ... so no concern there. My other concerns are for the new generation that does not protect themselves systematically; the frame of mind has changed from “I must protect myself” to “It is the responsibility of the HIV positive man to make sure he does not infect others.”

Another concern is with regards to the complacency in the public opinion that HIV infection is a manageable disease; complacency with regards to protecting oneself as I already mentioned, but also complacency in research. The undiscerning journalists reporting on the overly optimistic researchers create a sense that a cure is at our door and hence increase the complacency.

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Richard Higgs

Richard Higgs

I am 50 years old and I have HIV. There are several things that bother me about growing older with HIV:

  1. The ignorant stigma people in general have about people with HIV! Like it's God's curse on you for your lifestyle. I don't think it's the lifestyle, more rather some of the choices we make throughout our lives.
  2. This goes with my first thing really: I wish I had someone to share my life with. I do not mean sexually, even though that will be missed, but rather mentally and physically -- someone other than a family member that cares about me as a person. This would be nice; but I have always been somewhat of a hermit. That's another story in itself so I will not go there!
Ruth Deramus

Ruth Deramus

Activist, Alabama

Growing older with HIV, there are so many other issues we face other than just having the virus. As a woman, I have to address menopause, and greater risk for breast cancer. These have to be addressed along with the HIV virus.

Sabina Strat

Sabina Strat

Philadelphia Center, Shreveport, La.

For those who are HIV positive, my concern is the support system they need to have. These people are very lonely in Louisiana -- I may be one of the few that they talk to. This support system is very important, to have someone they feel comfortable to talk to about living with HIV.

Steven-Emmanuel Martinez

Steven-Emmanuel Martinez

AVAC: Global Advocacy for HIV Prevention, New York City

I definitely think that we have been really bad and very relaxed in not addressing the mental health needs of HIV-positive people: to have to deal with so much stigma and so much discrimination, and the way that affects you psychologically and emotionally. As a community, in the public health field and HIV prevention groups, we have been really poor in tackling mental health in the HIV-positive population as they continue to age.

Steve S.

Steve S.

Memphis, Tenn.

I'm 65 years old and I was diagnosed with HIV in 1992. My main concern is that Medicare Part A, Part B, Part D (optional prescription program) and Medicare Supplemental Policy will not continue to pay for HIV issues as well as prescriptions. I begin Medicare effective Dec. 31, 2013, and so far all my drugs are on the formularies. So far, so good!

Theodore Kerr

Theodore Kerr

Visual AIDS, New York City

I think housing, treatment, collateral damage because of treatment, unresolved trauma, dating, co-infections, becoming positive later in life, isolation -- you name it!

But if I had to narrow it down to one concern I would say I am troubled by how elders in our community are not afforded the opportunity to have their expression witnessed in its entirety. Unless someone growing older with HIV is expressing extreme joy, wisdom, anger or gratefulness there is general apathy or avoidance toward them. We need to understand people growing older have a right to change their mind, be wrong, be right, experiment, not want to be mentors, not want to be gateways to history, and be engaged about what is happening right now with them. The answer of course is not to put seniors on a pedestal and wait for them to speak any more than we should ignore their experience. We can witness what people have to give without our own agenda. As people live longer with HIV we are going to have different conversations. We need to be open to those experiences.

Wayne Smith

Wayne Smith

Samaritan Ministry, Knoxville, Tenn.

It's difficult to talk about HIV with older folks -- the "grey hairs" -- because you don't want to be graphic, and turn people off; then they don't listen. But there is obviously a problem with more infections in that age group. With me, it's about finding the right way to have those conversations without being offensive, too graphic, maybe adding humor and getting people to think about who they are and where they are in their lives -- especially older single adults. And there's lots of them! I mean, our country is just becoming populated with older single adults -- and they're not dead.

Valter

Valter

Bahia, Brazil

I'm 56 now and saw most (or almost all) of my friends dying within a very ugly physical aspect due to the lack of medication at that time.

Growing so old was not in my plans. It was a surprise for me; and thanks to Dr. David Ho, who invented the HIV drug cocktail, I'm alive.

Sometimes I find myself very sad because my body doesn't want to do what I want to do anymore; but every old person experiences these feelings. I've been losing my memory and my comprehension about things that I read, and it makes me very upset. My physician says it's normal, or depression. Maybe for her, but not for me.

If I have the benefit of deserving it, I would like not to suffer so much, or die as my friends did.




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