HIV+ and long-term survivors

“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
[AIDS service organizations] 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, and click here to view our 2SLGBTQIA+ 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 AIDS Survivor Syndrome (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., TDF: tenofovir disoproxil - brand name Viread). Newer HIV drugs containing a different form of tenofovir (TAF: tenofovir alafenamide - brand name Vemlidy) 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 2SLGBTQIA+ people growing older with HIV to continue to visit sexual health clinics and for women to continue with a gynecologist.