HIV+ and Long-term Survivors

Explore the experiences of the HIV Pandemic from the 1970s to present day, including: seniors who are long-term survivors living with HIV, cultural generational trauma, and sexual health for 2SLGBTQ+ Seniors.

2SLGBTQI+ Seniors and Long-Term HIV Survival

"How will we be treated as elders in our twilight years? It's coming, for so many of us who were told we had 6 months to live. Now it's 25 years later and I am left to wonder, ponder and worry about the people who will tend to our needs as we start losing the ability to tend to them ourselves." Anon.

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).

DSS considers this cohort of seniors in the 2SLGBTQI+ communities to require particular attention be paid to their unique experiences and current needs. Due to longer survival with HIV, the percentage of older adults living with HIV is increasing in all regions of the world including BC.

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 a lasting mark on people's lives, and affect mental and physical health, as well as financial stability and overall quality of life. 

Another definition 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.

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.

https://issuu.com/thewellproject/docs/long-term_survivors_of_hiv_2022 [Video] 

AIDS Survivor Syndrome (ASS)

"We were a group of people who were willing to stand up for ourselves and for others and face what the world had to offer. … Those living with HIV today can never [imagine] the horrors many of us had to endure in the early days of this epidemic. I wish I didn't remember – I wish I could forget." Vickie L

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:

  • Anxiety, nervousness, or sense of feeling constantly ‘on guard’

  • Depression

  • Irritability or flashes of anger

  • Lack of future orientation

  • Low self-esteem and self-worth

  • Substance abuse

  • Social withdrawal and isolation

  • Survivor's guilt

Survivor's guilt is common among survivors of natural disasters, violent conflicts, 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 survive.

ASS is sometimes compared to post-traumatic stress disorder (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.

Long-term survivors of HIV talk about the meaning of legacy.

This video from The Reunion Project features a diverse group of LTS sharing what the legacy of these powerful experiences means to them.

Physical Health Concerns

“38 years ago, I was told I was infected, a de facto death sentence! Those were “dark times” with all of the uncertainty, fear, hopelessness, loss, trauma, guilt, death and shame that came with an HIV diagnosis. It recalled biblical descriptions of how lepers were treated.

The last four decades have seen new medications: antiretroviral therapies, PrEP and PEP—making it possible for people living with HIV to live long productive lives, while reducing the chance of passing on HIV to others.

Death is now off the table, but other co-morbidities are in my future. Therefore, we must look at HIV through a holistic lens, incorporating harm reduction and mental health as part of treatment. Fortunately, I have been supported though all of this by a loving sister, my medical team (whom I have informed that I am cloning), ASOs and friends. Additional funding and research are necessary to respond to and support an aging HIV-positive population”. Colin J.

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 Click here to link to our 2SLGBTQI+ Seniors’ Health Resources.

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 (fat accumulation or wasting, which change a person’s appearance) 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 several 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. 

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

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.

Comorbidities

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: 

  • Heart disease: LTS are more likely to have taken older HIV drug regimens associated with body shape changes and increased blood fats, which are linked to heart disease

  • Hepatitis C (HCV): Many LTS are "baby boomers," or those born between 1945 and 1965, for whom the US Centers for Disease and Control and Prevention (CDC) recommends testing for HCV

  • Other kinds of liver disease: Long-term use of medications can overwork the liver, and certain HIV drugs have been directly linked to liver damage 

  • Brain problems: Research suggests that HIV-associated neurocognitive disorder, or HAND (a group of conditions that includes some combination of thinking, movement, mood, and/or behavior problems) is more common among older people, as well as those who have been living with HIV for a long time.

  • Cancers: It is vital that LTS be regularly screened for cancers - not only those known to be AIDS-related (e.g., cervical cancer), but others not associated with HIV (e.g., breast or lung cancer)

  • Bone disease: Some older HIV drugs have been linked to bone loss (e.g., tenofovir disoproxil fumarate, or TDF; brand name Viread). Newer HIV drugs containing a different form of tenofovir (tenofovir alafenamide, or TAF) cause less bone loss. 

Menopause 

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.

Sexual health

Despite the myth that older people do not have sex, many older adults are sexually active. Seniors 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 2SLGBTQI+ people growing older with HIV to continue to visit sexual health clinics and for women to continue with a gynecologist.

Quality of Life Concerns

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

"Why am I still here and my friends are gone!? Not a few, THOUSANDS!!! MILLIONS!!!!" Maria T

Depression is already a significant concern for people living with HIV, and particularly older adults. One study has shown that more than six in ten people living with HIV between ages 50 and 76 suffered from depression. Depression and other serious mental health issues are prevalent among HIV long-term survivors.

  • Isolation from community and family is also a major concern for HIV long-term survivors. Multiple losses, trauma, decreased ability to leave home or get around town, substance use, financial concerns, and caregiving duties can all contribute to isolation. This type of separation or aloneness can have significant negative health effects, including higher rates of death from chronic health conditions.

In addition to working with mental health providers and potentially seeking medical treatment, social supports and a sense of purpose in life are key to decreasing isolation and improving mental health. Link here to community resources for 2SLGBTQI+ Seniors.

Find services that are 2SLGBTQI+ affirming at - MindMapBC

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. 

  • In the LTS community, "retirement" has been a euphemism for being on permanent disability, an unstable form of income that is also difficult to get off 

  • Due to eligibility requirements for various forms of public assistance, people living and growing older with HIV often have little choice but to keep their incomes low, making it nearly impossible to save for the future

  • Long gaps in work histories, as well as ageism, pose additional challenges for LTS returning to work

  • Panic about the future, and an inability to plan for or conceive of the future, are symptoms of the compounded traumas of ASS

  • Faced with much longer life expectancy, LTS now find themselves asking "What's next?" 

Central to the movement supporting long-term survivors is helping them imagine a future – one that for years, even decades, 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. Recognizing this longer survival, some companies now offer life insurance to people living with HIV. Link to seniors’ resources for end-of-life planning/finances.

Service Provider Informational Webinars –

BC Center for Excellence in HIV-AIDS -  The Next Wave : Realities of Aging with HIV

BC Center for Excellence in HIV-AIDS - Navigating the Labyrinth: Decreased Cognition and Aging among People Living with HIV

More service provider information from the BC Center for Excellence in HIV-AIDS - https://www.bccfe.ca/taxonomy/term/126?page=3

Further Resources

The information above was adapted from some of the following resources:

 General HIV Resources in British Columbia

Interior

  • ANKORS
    West Kootenay Boundary Regional Office
    101 Baker Street, Nelson, BC. V1L 4H1
    250.505.5506

  • East Kootenay Regional Office
    #209 – 16th Ave North Cranbrook, BC. V1C 5S8
    250.426.3383

  • ASK Wellness
    433 Tranquille Rd, Kamloops, BC.  V2B 3G9
    250.376.7558

  • Turning Points (Cammy Lafleur Street Outreach)
    3301 24 Ave #102, Vernon, BC V1T 6K7
    250.542.3335

North

Fraser

Vancouver Island

  • AVI Health and Community Services  (AVI)
    713 Johnson Street, 3rd Floor ‐ Access Health Centre, Victoria, BC.  V8W 1M8
    250.384.2366

  • Nanaimo Office
    55 Victoria Rd, Nanaimo, BC. V9R 5N9
    250.753.2437

  • Comox Valley Office
    355 6th St., Courtenay, BC. V9N 1M2
    250.338.7400

  • Campbell River Office
    1371 c. Cedar Street, Campbell River, BC. V9W 2W6
    250.830.0787

  • Society of Living Illicit Drug Users (SOLID)
    1284F Gladstone Avenue, Victoria, BC.  V8T 1G6
    250.386.6263

  • Vancouver Island Persons Living with AIDS Society (VPWAS)
    205 – 1120 Yates Street, Victoria BC, V8V 3M9
    250.382.7927  |  TF: 1.877.382.7927

Vancouver

  • AIDS Vancouver  (AV)
    1101 Seymour Street, Vancouver, BC. V6B 0R1
    604.893.2201

  • Carnegie Community Centre ‐ AIDS Support Group
    401 Main Street, Vancouver, BC.  V6A 2T7
    604.665.2222

  • DTES HIV/IDU Consumers’ Board
    105‐177 East Hastings Street, Vancouver, BC.  V6A 1N5
    604.688.6294

  • Heart of Richmond AIDS Society
    Unit 303-6411 Buswell Street, Richmond, BC V6Y 2G5
    604.277.5137

  • Lookout Emergency Aid Society 
    429 Alexander Street, Vancouver, BC. V6A 1C6
    604.255.0340

(note – KEYS: Housing & Health Solutions has merged with Lookout Emergency Aid Society)

Provincial