There’s no doubt that there’s much to be said about HIV. It’s been over 40 years since the devastating virus entered our lives. Yes, our lives.
HIV/AIDS has impacted all of us because, even if you aren’t living with HIV in your body, chances are you know someone who has, is or will. Currently and according to the website HIV.gov, about 15 percent (or 1 in 7) of infected people are unaware they are living with HIV in their bodies.
This equates to approximately 165,000 cases/people in the U.S. living with ignorance of their HIV status. Conversely, there are those who are well aware of their status. Not only are they aware but many have been living with the immunity compromising villain for decades.
When HIV first surfaced, conversations centered around symptoms, care and morbidity. After all, back in the ‘80s and early ‘90s, it was rare to have heard of or know a person who had survived the virus long term. Thankfully, that is no longer the case.
While HIV continues to wage war in our communities, the case can be made that there is a need to have further discussions about how those directly and physically impacted by HIV can continue to thrive by living long healthier lives.
So why haven’t these conversations been more widespread? If that question showed up on the Jeopardy game show, the winning response would undoubtedly be: “What is stigma?” Stigma leads the charge on why people don’t get tested, don’t disclose their status and are often clueless as to what it means to age with HIV. There are many forms of stigma, and all need to be eradicated if we really want a fighting chance of finally conquering the HIV epidemic. Stigma shows up by way of (and in no particular order);
- Health care professionals refusing to provide care or services to people living with HIV in their bodies.
- Friends, family and/or community members refusing casual contact.
- Referring to people as HIVers or Positives.
- Shaming and/or blaming through religious and cultural weaponizing.
- Violence and abuse.
In Atlanta, Georgia a group of mature Black gay gentlemen seem to have found a way to prevent stigma (or their HIV status) from dominating their existence while they continue to live robust and productive lives.
To achieve that goal, they turned to a support group aimed at older men known as the Silver Lining Project, a part of THRIVE SS (Transforming HIV Resentments into Victories Everlasting Support Services).
Founded by three Black gay men living with HIV, these public health professionals saw a need for a special kind of camaraderie and seized an opportunity. They sought to bring to other Black gay men who shared their diagnosis what they themselves needed and wished for; a safe space where respect, affirmation, support and uplifting social interaction are commonplace. The nonprofit organization (which began as an online social media group) came to life in 2015.
“It began with a group of guys sitting around talking about their experiences living with HIV,” said Malcolm Reid, the Director of Programs for THRIVE SS and founder of the Silver Lining Project.
“Over time, we got a grant and developed a ‘Silver Skills Curriculum’ [that] educates men (age 50 and older) on the process of aging with HIV,” he continued. “We talk about intersectionality, comorbidities, PTSD, trauma, survivors’ guilt, stigma, the effects of anti-retroviral[s] and more.”
“One of the tools of defeating stigma is advocacy,” Reid explained. “Being able to fight for yourself, whether in your doctor’s office, if the doctor says I only have 10 minutes, you need to be able to say: ‘Well, I have a lot of questions.’”
The importance of advocacy in reducing stigma and bolstering health equity is paramount in the Silver Skills Curriculum. Said Reid: “People living with HIV … are now living as long if not longer than those who aren’t. Why? Because we go to the doctor. Our HIV is under control and we find out about all the other things that happen when you’re aging”
Closer to home, Rita McDaniel agrees that being in care and having a positive mindset are key to longevity for individuals living with HIV. McDaniel is an employee at North Carolina AIDS Action Network (NCAAN). She’s deeply involved in community engagement and spends her days informing people (especially Black women who are disproportionately impacted by HIV) about Hepatitis C, sexual health, wellness and PrEP (Pre-exposure prophylaxis), a once daily pill that is highly effective in preventing HIV (up to 97 percent), which is now also available in a long-acting injectable approved by the FDA.
“I’ve been living with it for 29 years now. Right after I was diagnosed, I was told I only had six months to live,” McDaniel recalled. “So, for me to still be here is a blessing. Back in the early ‘90s when I was first diagnosed, I was able to get care because I received both Medicaid and Medicare. Now, so many people don’t have that option, especially older adults. You no longer automatically receive disability like in the past when it was considered a death sentence.” McDaniel was atypically forthcoming in talking about how her diagnosis is impacted by aging. “In some cases, much of what’s going on with me now (like chronic pain) is worsened by HIV. Then I have other comorbidities that go along with that.
“What doctors won’t tell you, especially an older adult with chronic pain, is how helpful sexual activity can be in managing pain,” McDaniel explained. “A lot of my friends won’t have intercourse with anyone because they think they can’t [have sex] without disclosing their status.
“With a lot of the criminalization laws in the beginning you no longer have to disclose [your HIV status] as long as you’ve been undetectable for at least six months. Though, if you’re a person with multiple partners or you are unsure of the status of your partner, you should still use condoms but feel free to enjoy a healthy sex life.
“Most people will think of living with HIV as something dirty or nasty and if you’re an older person, they’ll think life is over,” McDaniel offered. “I can truly say, life is good while living with HIV and aging – my children are always mentioning how no grass can grow under my [active and busy] feet.”
According to the Centers for Disease Control and Prevention (CDC), in 2018, McDaniel is one of over half (51 percent) of people in the United States and dependent areas with diagnosed HIV who were aged 50 and older. In 2018, people 50 and older accounted for 17 percent of the 37,968 new HIV diagnoses. Though new HIV diagnoses are declining among people aged 50 and older, around one in six HIV diagnoses in 2018 were in this group.
Medical providers have much to add to the topic, as well.
Leslie Ware has been a Physician Assistant with over 20 years experience in the field, though her journey as a health educator began over 30 years ago. In her role as a family practitioner, she’s assisted patients in managing their HIV with care, education and compassion.
Ware shared her thoughts and expertise on aging with HIV: “Now [when compared to the 1980s and much of the 1990s] HIV management and therapy have become gentle, from a physical health standpoint and more convenient and effective in reducing viral load[s] so people are inclined to be more adherent to therapy. There are fewer side effects with one pill options.”
At the onset of HIV/AIDS it was common for HIV patients to be saddled with a 28-pill regimen on a daily basis. Today, as Ware pointed out, “Treatments have become better and easier to comply with, making it likely that a person will be undetectable within 30 days.”
When a person is “undetectable” they cannot pass on the HIV virus through sexual contact or shared intravenous drug use, At this point, the viral load is too low to measure because medication has decreased the amount of HIV present/detectable in a person’s blood.
Ware continued: “And there [is] much less drug resistance, people can live a normal life with HIV without the looming thought of sickness and death. As long as you’re compliant with your treatment you have the same chances of living as long as someone without HIV.”
That minimal pill regimen Ware spoke of is part of what HIV professionals and patients refer to as HAART (highly active antiretroviral therapy). HAART is a standard treatment that consists of a combination of drugs (typically two to three medications often called “highly active antiretroviral therapy” that prohibits the virus from replicating and further compromising a person’s immune system.
As for the difference in treating a senior patient and/or pathological changes as a result of aging with HIV Ware explained, “You have to be selective with older patients because of their co-morbid conditions and their state of health. For example, if you have chronic kidney disease or diabetes, you have to be more careful with your medication choices. Even bone health, women experiencing menopause, need to be concerned with the type of medicine they use, as it may affect bone health or bone density.
“As for our geriatric folks, there’s a misconception that the rate of HIV is low, because they’re in the geriatric community but there are high HIV rates in that community, as well,” Ware offered.
“Their assumption is, ‘we’re old, we can’t get this.’ when that simply isn’t true.”
Clearly, Ware is attentive to the stigma and myths surrounding HIV, while working diligently to eradicate both with a blend of care and fact-based HIV awareness and knowledge.
Needless to say, the key to aging with HIV is awareness of your status. For older adults this is even more important because pre-existing conditions and HIV medication can impact how a body responds to treatment while handling other diagnoses, as Ware previously pointed out.
The use of multiple medications, changes in physical abilities, changes in cognitive abilities along with increased vulnerability and stress are issues many aging adults face.
For the aging adult also living with an HIV compromised immune system, these things can be exasperated by HIV and its treatment. While the medical industry continues to make strides in HIV treatment, health organizations caution; “Many HIV-associated non-AIDS conditions occur frequently in older persons with HIV, such as cardiovascular disease, diabetes, renal disease, and cancer. These conditions are likely related to a number of interacting factors, including chronic inflammation (something researchers are continuously working to figure out) caused by HIV.”
Information gleaned from HIV.gov also mentioned how HIV and its treatment can also have effects on the brain. Researchers estimate that between 25 and 50 percent of people with HIV have HIV-Associated Neurocognitive Disorder (HAND), a spectrum of cognitive, motor, and/or mood disorders categorized into three levels: asymptomatic, mild, and HIV-associated dementia. Researchers are studying how HIV and its treatment affect the brain, including the effects on older people living with HIV.
At the end of the day, what you really need to take away from all this information is that data on long term survivors of HIV is still skimpy and no credible health care provider, health organization or individual will suggest that you allow fear of currently studied X factors to prevent you from getting tested, knowing your status and getting into care.
If you can get a long-term thriver to engage in a candid discussion about their journey with HIV, most – if not all – will tell you: surviving with vitality in the healthiest way possible most definitely beats the alternative.