Older, earlier with HIV

But I compared myself to my peers. They did not struggle with reading, comprehension, and formulation to the same degree that I did. Something was wrong, and it was getting worse. 

This was eight years ago. My brilliant HIV specialist changed my antiretroviral medications, and within two weeks, I was my old self again. But a few years later, my cognitive problems re-emerged. Again, she changed something, and my condition improved. Two years ago, I was back at square one. I was again struggling to keep up with the pressure and demands at work. I caught myself asking junior staff to draft emails for me. I was recording every meeting in an attempt to remember what was said. If someone sent me a four-page document to review, I panicked because it took me a whole day to read.  

“We have explored all options. I cannot think of any medical reason for your cognitive problems. Perhaps we need to perform a lumbar puncture,” my HIV specialist suggested out of desperation. “Cognitive decline is mostly associated with treatment failure when the virus crosses the brain stem.”

She was clearly unprepared for the long-term impact of antiretrovirals on people aging with HIV. I have been living with HIV for nearly 40 years – nearly twice as long as without the virus. Our generation of people living with HIV had to face numerous challenges.

Initially, we were told to prepare to die within three to five years. Many struggled with planning for their future—they gave up on their studies or advancing their careers. We were the ones who fought against HIV-related stigma and campaigned for access to treatment for all. Now, we must adapt again. This time to aging with HIV.

Thirty years ago, I was part of a group of “long-term survivors” who tried to determine why we outlived our friends. Everyone had their magic “fix”—herbal supplements, yoga, meditation, or religion. Eventually, there was only one denominator: At some point in our lives, we all had to take charge of our own health and destiny.

Now, I had to do this again.  

I searched widely for any available research related to aging with HIV. What I found was shocking. The bodies of people with HIV age faster than “normal” people. We present with increased risk for multiple chronic conditions, such as cardiovascular disease, diabetes, cancer, and liver and kidney failure, as much as ten years earlier than others. And…50% of people with HIV over 50 years may experience cognitive impairments such as HIV-Associated Neurocognitive Disorder (HAND), which may affect their cognition, mood, and motor skills. One specific research from the United Kingdom described precisely what I was facing—the fog that impacts everything.  

I was not alone! What I experienced was real. I wasn’t making this up. 

The question is: Why did my HIV specialist not know this? If she, who works in a high prevalence area in a first-world country, failed to have this information, what about my peers aging with HIV in other contexts? 

Approximately 9 million people ages 50 and older are living with HIV worldwide. The proportion is increasing yearly. From 8% in 2000 to 16% (2016), then 21% (2020), and now to 25% in 2023. More than 5 million of these individuals live in sub-Saharan Africa, which accounts for 60% of all people ages 50+ living with HIV. 

Are we ready for the implications of this on our health systems? Are we prepared to address the multi-faceted needs of this emerging giant?  

“If we succeed in our prevention efforts by 2030, then we will have to give attention to aging with HIV,” a senior UNAIDS official replied to my question at the recent international AIDS conference in München. 

“Only then?” I wondered. Can we afford to wait that long for a comprehensive response for 25% of people living with HIV? Now that the prevention targets are within reach, shouldn’t we act with the same urgency on this emerging emergency amongst 9 million older people with HIV? In the early days of the HIV epidemic, we cried out: “My people are destroyed for lack of knowledge.” I believe that we should renew our cry to ensure that this vulnerable aging population receives the appropriate information and care.  

The church played a critical role in reducing HIV-related stigma and caring for the ill, orphans, and elderly caregivers. Now is the time to stand together again to provide people with appropriate information about the various co-morbidities related to aging with HIV. This group of people are increasingly in need of spiritual and psychosocial support as they continue to face stigma and isolation. They need the church to come alongside them as they face survivor’s guilt and renewed trauma of increasing frailness and vulnerability. 

When I became aware of my cognitive decline, I had a support system: my wife, my family, and friends, and a men’s group from our church in Amsterdam. But this is not true for all. And even with a sound support system, I would have liked my faith community to realise the AIDS crisis is not over. 

We need to stand together to advocate for resources and tailored care models for older people with HIV, which considers both clinical and non-clinical aspects. Our congregations can become one-stop centres to provide these critical services. We still need to be the beacon of hope for many, also for people aging with HIV.

In the words of Psalm 71:9: “Do not cast me off in the time of old age; forsake me not when my strength is spent.”

We have done it before. Let’s unite to stand with those who survived the worst but are now at their most vulnerable.