Long-Term Survivors of HIV
November 14, 2018
Table of Contents
Powerful HIV drugs now make it possible for people living with HIV to live far longer lives than could have been imagined before effective HIV treatment became available. This is one of the greatest successes of modern medicine. Those who have lived with HIV for many years are often called long-term survivors (LTS).
There are a few definitions describing HIV LTS. One definition of LTS refers to those who have been living with HIV since before the modern era of effective HIV drugs, or "highly active antiretroviral therapy" (HAART). They are sometimes known as pre-HAART LTS or "longest-term survivors." They acquired HIV when the condition was, in most cases, a death sentence. They often spent their early adult lives believing they would die young - and watching scores of friends die of the health condition with which they themselves were living. This kind of traumatic experience can leave an indelible mark on people's lives, and affect mental and physical health, as well as financial stability and overall quality of life.
Another definition of LTS refers to people who have been living with HIV for more than ten years, and who were diagnosed after 1996. This group is sometimes known as post-HAART LTS. This is considered a very different experience than being diagnosed earlier in the epidemic.
Due to longer survival with HIV, the percentage of older adults living with HIV is increasing in all regions of the world. More than one in ten adults living with HIV in low- and middle-income countries are 50 or over; and in high-income countries, that number rises to about three in ten adults.
However, not all HIV LTS are older adults. People now in their twenties and thirties who acquired HIV at birth or while very young have also lived with HIV for decades - and may have experienced the loss of many loved ones due to the virus.
Another group of long-term survivors that tends to be left out of conversations about long lives with HIV are the HIV-negative partners, companions, caretakers, community members, activists, and frontline professional care providers who directly supported people living with HIV in the earliest days of the epidemic. While this fact sheet will focus on people who have lived many years with the virus in their bodies, many HIV-negative LTS also experienced tremendous losses and had their lives deeply affected by the epidemic.
AIDS Survivor Syndrome (ASS) is a term describing the psychological results of living through the most brutal, unjust years of the HIV pandemic. Pre-HAART LTS are especially vulnerable to ASS. Symptoms of ASS include, but are not limited to:
Survivor guilt is common among survivors of natural disasters, combat, and epidemics. It refers to the feeling that many survivors have that they have done something wrong in surviving a traumatic event when others did not.
ASS is sometimes compared to post-traumatic stress disorder, or PTSD, which is often associated with soldiers returning from war. However, ASS may have more in common with what is called complex PTSD, which results from enduring multiple traumas over a long period of time.
There are few published studies looking into AIDS Survivor Syndrome. However, in recent years, LTS themselves have begun to come together and share about their lives in the aftermath of the epidemic's darkest years. The evidence that a particular condition has been affecting them is too overwhelming to ignore. Unfortunately, few published studies means few health care providers or therapists are aware of the signs that an individual is experiencing ASS. But the body of research in this area is growing.
This video from HIV Story Project does an excellent job of summing up the experience of living with ASS, in the words of LTS themselves.
Some health concerns faced by LTS relate to common effects of aging, while others have to do with the unique realities of surviving with HIV. Below is a list of some of the common issues LTS may experience. Click the additional links below for more information.
HIV Treatment Challenges
Our current long list of effective, tolerable HIV treatment options would not have been possible without the HIV long-term survivors whose bodies were testing grounds for numerous HIV medications over the years.
Many LTS deal with the consequences of decades of HIV treatment. The toxicity of many early HIV treatment regimens caused life-altering side effects, including lipodystrophy and peripheral neuropathy.
Treatment Fatigue and Tolerability
Treatment fatigue (physical or emotional weariness with taking HIV drugs) may lead many LTS to have difficulties adhering to their HIV treatment, which can eventually cause drug resistance. However, multidrug-resistant HIV (MDR-HIV) is already a reality for a number of LTS, for whom effective treatment options are difficult to find.
Many long-term survivors take a dizzying array of pills each day, for HIV and for other health conditions they're managing (comorbidities). They may also take vitamins, supplements, birth control methods, and pain relievers, all of which can increase the likelihood of drug interactions. This resource from ACRIA provides useful tips for managing complicated medication schedules.
A review of numerous studies of people who acquired HIV at birth (perinatally) found that younger long-term survivors were more likely to have their HIV treatment be unsuccessful than adults, for a number of reasons:
It is very important for LTS of all ages to have trusting relationships with their health care providers, so that they can work together to find effective, tolerable treatment options. This is a key step not only to improve long-term health outcomes, but also to improve quality of life.
Inflammation is the human body's natural response to threat or damage. Because the immune system of a person living with HIV is always struggling to get rid of the virus, it is always activated, or "turned on," over many years. This is known as chronic low-level immune activation, which is a form of inflammation. Some research suggests that the body's response to complex trauma, as with ASS, may also increase levels of inflammation.
Ongoing inflammation appears to be related to many conditions, including heart disease and cancers. Scientists are still exploring whether people living with HIV experience 'accelerated aging' due in part to inflammation. Some professionals attest that what gets called 'accelerated aging' may have less to do with the virus than with the fact that people with HIV also have higher rates of traditional risk factors (risks that are seen in the general population) for these conditions, like smoking or stress.
Eating well, exercising, stopping smoking, managing other health conditions like high blood pressure and diabetes, and taking HIV drugs can help reduce levels of inflammation in HIV long-term survivors and other people living with HIV.
A number of health conditions that are not related to AIDS are still more common among people growing older with HIV. Long-term survivors born with HIV are also vulnerable to many of these comorbidities, such as heart disease, kidney problems, and anemia. Key health concerns for HIV long-term survivors to be aware of include:
Often called the "change of life," menopause is the point in time when a woman's menstrual periods stop. It is also a milestone that many women long-term survivors may have once assumed they would not live to reach. Effects of menopause can be treated with hormone replacement therapy, complementary treatments, and by taking steps to stay healthy.
Despite the myth that older people do not have sex, many older women are sexually active. Women over 50, including long-term survivors, may be thinking about dating and becoming sexually active after the end of a long-term relationship or the death of a partner. Further, sexual risk-taking can be an effect of past trauma, and can be a symptom of ASS. It is important for health care providers to talk about sexual health with their older clients, and for women growing older with HIV to continue to have visits with a gynecologist.
For younger long-term survivors and those of childbearing age, sexual health care should include respectful safer conception resources, in addition to conversations that affirm women's sexual expression.
Below is a list of some common issues related to quality of life that LTS may experience. Click the additional links below for more information on these experiences.
Mental Health Issues
In addition to working with mental health providers and potentially seeking medical treatment, social support and a sense of purpose in life are key ways to decrease isolation and improve mental health.
Financial Considerations and Unexpected Long-Term Planning
Many LTS, who may have once seen no point in saving money for a future they didn't believe they would see, now find themselves in difficult financial situations as they grow older.
Central to the movement supporting long-term survivors is helping them imagine a future where for years, even decades, one was thought not to exist. That future includes, but is by no means limited to, planning for the end of their lives: deciding not just where their belongings will go, but how they wish to be treated, medically and otherwise, if a time comes when they are unable to make such decisions on their own.
End-of-life planning can be an empowering process when, earlier in the HIV epidemic, there was not much time or space to be thoughtful about such plans. Now, that end will most likely be much farther off than once expected.
In recent years, the advocacy of HIV long-term survivors, including many women living with HIV, has brought more attention to the unique needs of those who have been living with HIV and its dynamic challenges for decades. One such advocacy group, Let's Kick ASS, has several chapters across the US, and is growing; find out more about Let's Kick ASS, and how you can become involved.
There are many ways for LTS to stay resilient and not only survive, but thrive throughout a long life with HIV. If you are a LTS, you can:
Women Kick ASS! Long-Term Survivor Voices on A Girl Like Me and Beyond
Organizations and Projects of Interest for Long-Term Survivors
[Note from TheBody: This article was created by The Well Project, who last updated it on Oct. 30, 2018. We have cross-posted it with their permission.]
This article was provided by The Well Project. Visit The Well Project's Web site to learn more about their resources and initiatives for women living with HIV. The Well Project shares its content with TheBody.com to ensure all people have access to the highest quality treatment information available. The Well Project receives no advertising revenue from TheBody.com or the advertisers on this site. No advertiser on this site has any editorial input into The Well Project's content.
The content on this page is free of advertiser influence and was produced by our editorial team. See our advertising policy.