I recently read a post by Mark S. King for his blog “My Fabulous Disease” that I thought would be especially relevant for people aging with HIV.
In it he gives an overview of the ADAP crisis that is going on across the US. He explains that there is growing concern that ADAP programs that provide access to HIV medications will be cut. He has video coverage of the “emergency summit” to discuss the growing ADAP crisis. And, he presents what we can do to make sure that people living with HIV can continue to receive their medications.
This issue is relevant to all people living with HIV and he offers clear guidance on how to get involved.
To read the post on how you can get involved, go to: http://marksking.com/my-fabulous-disease/aids-activism-101-steps-to-end-the-adap-crisis/
Activism and Aging with HIV
For many of you activism is not a new subject. AIDS activism may have been a part of your day-to-day life in the eighties and nineties. You may have even been a part of the gay rights movement of the seventies or earlier.
Is activism a part of your life today?
The men I interviewed for Aging with HIV: A Gay Man’s Guide answered this question in different ways. Some continued to participate in political and social groups and called themselves “activists.” Others were no longer as “out there” as they were ten and twenty years ago. They wrote letters, signed petitions on line, and supported organizations that shared their concerns. Some continued to read updates and were concerned, but no longer participated in causes.
Several felt alienated from activist organizations that, they felt were oriented toward younger people. Some had become fatigued from years of activism, and hopeless that they had any voice in creating change on a larger scale.
Why Get Involved?
Activism can offer many benefits to people in midlife and beyond. When you participate in social cause, you have the possibility to effect change on a larger scale. Activism also offers an opportunity for you to get out of yourself and to think about others. This is what developmental psychologist call generativity, and it is an significant aspect of continued personal growth at midlife. Getting involved also offers you opportunities to meet new people, stimulate your mind and broaden your social network.
There are many causes that you can get involved in. And, activism is only one level of involvement. Some of us work better on a smaller scale. Volunteering at a social service organization is a great way to get involved, feel like you are making a difference, and being part of something beyond yourself. Check out the resources page (see tabs above) to find an agency near your.
As we’ve been discussing on this blog , aging with HIV involves adapting to a great deal of change. One aspect of optimal aging with HIV is re-evaluating your coping strategies, to make sure they are meeting your changing needs.
This month we will be discussing Self Care. December can be a stressful month and you may want to make sure that you are doing everything you can to take the best care of yourself that you can.
Developing healthy sleep habits is an integral part of self care.
There are several things in life that could impact your sleep. Changes in medication, physical changes that accompany aging, stress, and environmental changes can all affect your ability to get a good night’s rest. The following are some recommendations for getting a good night’s sleep taken from Aging with HIV: A Gay Man’s Guide.
Many people’s sleep habits interfere with getting a good night’s sleep. For example, eating or drinking in bed, reading/playing cards in bed, and falling asleep with the TV on for background noise are just a few. These practices train your body to be awake in bed. If you are having sleep problems, try retraining yourself: go to sleep and get up at the same time every day, remove the TV from the bedroom, make your bedroom quiet and dark (use blackout shades if necessary), do not read in bed, and do not eat or drink in bed. The bed should be only for sleep (and sex). Establish a prebedtime ritual, such as turning off the TV and computer at least 30–60 minutes before bedtime, changing out of your day clothes, and flossing and brushing your teeth, to prepare your body for sleep. When you feel tired, go to bed. If you cannot sleep after 20 minutes, get up and leave the bedroom, but don’t turn on the TV or computer. Wait until you feel tired and try again. If you continue to have trouble sleeping, you should bring it up with your doctor.
Next post: Eating Well.
We are at the end of the third decade of the World AIDS epidemic. The disease has impacted the lives of people throughout the globe and reshaped societies. Today the epidemic has a very different meaning in the developed world than twenty-nine years ago. Because of advances in the treatment of HIV disease, Aging is now THE issue in the United States. Not only are people living longer than expected, but by 2015 the majority of people living with HIV in the US will be over fifty years old. The aging of HIV means that we need to develop new policies and treatments for the disease. People living with HIV must adapt to the challenges of growing older and develop new mindset of Optimal aging with HIV. To read my World AIDS day article for Edge magazine follow this link – Edge magazine.
A reader, Loren M., recently completed a course on public policy in Aging with HIV at San Francisco State University, Gerontology program. He has researched the issues around Aging with HIV, and has shared the result of his studies. For a report on Aging with HIV Policy go to my post – Aging with HIV Goes to the White House and read his comment.
Thanks Loren M. for sending that information to us!
I was recently asked by a reader of Aging with HIV: A Gay Man’s Guide to comment on the term the Lazarus Syndrome. This man, a gay man living with HIV in middle age himself, wondered why I don’t refer to the term in my book and why it seems to be out of favor in the field. I thought it was a very interesting question, and I thought I would share my response with you.
You raise a very interesting point. I, too, remember when the term, “Lazarus syndrome” was used by researchers, clinicians, people living with HIV, and the media. With the introduction of protease inhibitors some people with HIV found a new lease on life. (I say, “some” because I knew many people for whom these early advances were not helpful. There continued, and continue, to be deaths to AIDS and many experienced debilitating illnesses and side effects even with the advent of HAART.) But, people were surviving, and for many this felt, as you put it, “miraculous.”
I think the term, Lazarus syndrome, emerged to describe the experience of people who, spared from imminent death, had to concern themselves with the challenges of living with HIV. In retrospect, I see how using that term helped people put a name to the feeling that they had lived longer than expected, and, having identified themselves as survivors, could then set out to “live” with HIV.
I am not sure, however, what the “syndrome” was that the term was meant to describe. Doctors use the term “syndrome” to identify a collection of symptoms that occur together. I don’t believe a syndrome was ever identified in people living with HIV who had survived longer than expected. Perhaps, that is why the term has fallen out of favor. I have also read the term Lazurus Effect, which seems to me more accurate.
Instead of one “syndrome” we see several dynamics impacting people living with HIV. Concerns related to managing chronic illness, stigma, depression, financial concerns, survivor guilt, etc. have all been studied, but, as far as I know, there is not one clinical picture of people living with HIV.
And, now, a whole new set of issues are arising as people are facing the unanticipated challenges of aging with HIV – which is why I wrote the book.
So, my long winded response to your question is, yes, the Lazarus effect, is still a concern. However, in my opinion, the longer people survive with HIV and the virus evolves into a chronic illness, the term will only describe a part of an increasing complex picture of what it means to live with HIV.
Do you think the “Lazarus Effect” accurately describes the experience of living with HIV today?
I just received an update from Dr. Steve Karpiak from ACRIA about the White House meeting on aging with HIV held last week. Dr. Karpiak was among the 100+ invited attendees at this meeting to “raise awareness about people who are aging with HIV or contracting HIV as seniors (>50 years of age); to explore unique clinical manifestations of HIV infection among older adults; to discuss existing services for seniors living with HIV and highlight successes as well as gaps; and to discuss targeted strategies for Federal and non-Federal stakeholders to realize the vision of the President’s National HIV/AIDS Strategy” according to the White House Office of AIDS policy. There is a link on this page to a youtube video of the meeting.
Here are some observations Dr. Karpiak made of the event:
Education – The need for those in the world of HIV/AIDS and those who work in the Aging universe to know about the increasing number of older adults living with HIV. The epidemic is no longer young only! In fact it is now old – mostly!
Research – This is a given. Research dollars are always scarce, but the need to address this issue is now growing at a rapid pace. Many spoke about ACRIA’s seminal 1000 person study ROAH (Research on Older Adults with HIV) illustrating that community based research can significantly affect the dialogue.
Health Outcomes – There is a need to assess bottom lines – health outcomes. What works – what does not work – and move forward using evidence based information and not conjecture and anecdotes, or, providing services that makes everyone feel good – except the client.
Prevention – There is a vacuum. No systematic evidence based prevention effort targeting older adults (HIV negative or positive) has ever been developed for the over 50 populations – emphasis on the S. Prevention messages for the 50-60 year old are likely very different than those for the 70+ group! ACRIA has much to share with 3+ years experience n developing such initiatives in NYC (funded by the New York City Council) and across the US (funded by the MAC AIDS Fund).
Isolation – Acknowledgement by almost every person who spoke in the room that the older adult living with HIV is socially isolated due to the toxic forces of stigma which contribute to their high rates of depression, substance use and poor mental health management.
Power – The power of the voice of the peer PLWHA over 50 is unquestioned. There were community members, ASO staff, people of faith communities, and government staff who were HIV+ and over 50, some LGBT – their bearing witness is potent.
Partnerships – The HIV world must collaborate with the Aging world. Those in HIV/AIDS cannot ignore the massive knowledge and experience of those who work in Aging. Time and resources will have been wasted unless there is collaboration from both domains. ACRIA is unique in that it has done this for the last 8 years.
Thank you Dr. Karpiak for sharing your thoughts. I will continue to pass on more information about the event and of any policy changes that emerge as a result.
Medscape has been posting discussions with researchers who attended the 1st International Workshop on HIV & Aging in Baltimore on October 4&5. The latest interview is on the role of mitochondrial damage in Aging and HIV-disease with Douglas Wallace, PhD, a leading researcher on mitochondria. The full interview can be viewed here.
Dr. Wallace explains that mitochondria play a key role in aging. As we age mutations in our mitochondria weaken cellular functioning. Over time this damage lead to the clinical symptoms seen in aging.
Dr. Wallace adds that, “chronic HIV infection can result in sufficient mitochondrial dysfunction to generate many of the same clinical problems seen in aging.” While he points out that much more research needs to be done on the interaction between HIV and mitochondria, his statement suggests that this relationship may be an important feature in the symptoms currently referred to as accelerated aging in people living with HIV.
Several of the men I interviewed for my study talked about physical changes that accompanied aging with HIV. They said that often it was difficult to determine which symptoms were age-related and which were HIV-related. Many spoke of feeling older than their HIV-negative peers, and that they had symptoms common to much older men.
The science around aging with HIV has not evolved enough to explain whether these reports are symptoms of the physiological effects of living with HIV, the results of taking HIV medications, or of the emotional impact of living with HIV.
Until this relationship is clarified, people living with HIV must find strategies for optimal aging, addressing the physical and emotional complications of living with the virus into midlife and beyond. Talk to your doctor about any symptoms and develop a self-care regimen that works best for you.
There has been much discussion lately in the blog-o-sphere about accelerated aging among people living with HIV. The term “accelerated aging” refers to a collection of conditions (heart disease, bone loss, cancer and cognitive decline) that are more common in HIV-positive people in their 40s and early 50s, compared with HIV-negative people of the same age. There is a great deal of controversy about using this term given the lack of research in this area. Many argue that one cannot combine these conditions under the heading “aging.” Researchers are also unclear whether these conditions are a result of age, long-term HIV-infection, long-term use of highly active antiretroviral treatment (HAART), or the presence of other infections. The researcher, Dr. Charles Emlet, sums up the research on his blog and links to a POZ article on the subject.
In another related article, Medscape writer Bob Roehr, interviews Steven G. Deeks, MD, a professor of medicine in residence at the University of California, San Francisco (UCSF), and codirector of the Population and Clinical Sciences Core at the UCSF-GIVI Center for AIDS Research. In the interview Dr. Deeks discusses the controversial topic of accelerated aging. He focuses on chronic low-level inflammation demonstrated among people living with HIV taking HAART. He states that while the presence of elevated markers for inflammation is “well accepted” among scientists, the effect is “not particularly dramatic.” Dr. Deeks suggests that more research needs to be done on the relationship between chronic inflammation and CMV disease. He adds that inflammation levels are much higher in people who are untreated with HAART than in those who are treated. His recommendation – “For now, lifestyle changes such as diet and exercise may be the most useful interventions. They have demonstrated efficacy in dampening immune overactivation and restoring a more normal homeostasis.”
I am sure that there will be much more to say about this topic. Add your thoughts, personal reflections or research updates here or on the “community” page.
Thank you for including me in your blog posting on Aging with HIV for MyFabulousDisease.com. Your site is a perfect forum for this timely dialogue.
In your note you asked several questions about the physical complications of aging with HIV and the emotional interaction between living with HIV and aging into midlife and beyond. Both, are very big subjects. And, while there is growing interest in this area, we are just beginning to understand what it means to age with HIV. We are at the forefront of a new era in HIV treatment, and much like the early days of the epidemic, people living with the virus are the experts and have to keep updated on new developments and partner with their doctors in order to determine the best course of action.
This is the reason why I wrote Aging with HIV: A Gay Man’s Guide – to help gay men who have lived longer than they ever expected as they manage the transition of aging.
The literature presents several emotional challenges that accompany adult development. They include, among others, physical changes, new roles in the family, and shifts in our work lives. For gay men living with HIV adaptation to aging also involves responding to changes in the AIDS epidemic and the transition of HIV from a terminal illness to a chronic disease.
Aging is a challenge for all of us. But, for gay men living with HIV it is even more complex. As you know, this generation of gay men living with HIV have spent the last two decades embroiled in a battle with the AIDS epidemic: Caring for themselves and loved ones; living through immeasurable losses; and managing their own threat of mortality. This war has utilized all their emotional resources and few have had the time to consider the challenge of aging.
It is easy to get stuck in the task of adapting to aging with HIV. Signs of stagnation include living in the past, isolating, and avoiding social involvement. Research has found higher rates of depression, lack of social support, and reduced quality of life among middle aged and older people living with HIV. Adapting to aging with HIV can become complicated when emotional issues such as HIV-stigma, internalized ageism, unresolved grief, or survivor guilt impact one’s ability to care for oneself fully in the present.
Aging with HIV: A Gay Man’s Guide offers guidance to navigate this uncharted territory. The book draws from my qualitative research, as well as my training as a psychotherapist and 20 years of experience in the field. Questions and exercises guide the reader through self-examination to evaluate how he is adapting to the challenges of aging with HIV and to develop tools to optimize their experience. There are quotes from gay men living with HIV, as well as brief text boxes that review the relevant research. The book also includes a chapter by James Schmidtberger, MD, Director of the Leicht Clinic, an HIV-clinic in New York City, reviewing the medical research on HIV over fifty.
My hope is that Aging with HIV: A Gay Man’s Guide will start conversations across the country that normalize the experience of aging and empower gay men to define for themselves what it means to optimally age with HIV.
The CDC released its HIV surveillance report 2005-2008 in June and Dr. Stephen Karpiak of ACRIA just sent me the data on HIV prevalence in the over fifty population. The number of people over age fifty is increasing exponentially, and one of the greatest population increases is for people between the ages 50-65. These figures include increases in the rates of new reported cases of HIV, as well as people living with the virus over age 50. Looking at these figures I conclude that midlife and older people living with HIV are going to represent a growing percentage of those living with HIV in the US and the specific issues faced by this age group are a growing health concern.
|In 2007 the total estimated number of people living with HIV/AIDS climbed over the million mark, and the percentage of people estimated to be living with HIV/AIDS over age 50 was 31%. This percentage rose in 2007 from less than 26% estimated in 2005. Given the rate of increase (2.2%) we can estimate the current (2010) number of people living with HIV over fifty to be closer to 40%.
The CDC also estimates that in 2008 16% of new diagnoses of HIV occurred in people over fifty. This is an increase from the 2006 CDC estimate of 10%.