Why do so many HIV doctors dismiss HAND (HIV-Associated Neurocognitive Disorder), especially for long-term survivors struggling with thinking and memory?
This is a really frustrating and valid concern. HAND is a recognized condition, and it's unfortunately underdiagnosed or dismissed by some providers. There are a few Show Full Answer
Why do so many HIV doctors dismiss HAND (HIV-Associated Neurocognitive Disorder), especially for long-term survivors struggling with thinking and memory?
This is a really frustrating and valid concern. HAND is a recognized condition, and it's unfortunately underdiagnosed or dismissed by some providers. There are a few reasons this might happen:
- Overlap with other factors — Memory and focus issues can be linked to anxiety, depression, medication side effects, or aging, making it easy for doctors to attribute symptoms elsewhere
- Lack of specialist awareness — Not all HIV doctors have deep expertise in neurocognitive complications
- Subtle symptoms — Mild to moderate cognitive changes can be harder to measure and easier to overlook
- Historical bias — Severe dementia was more common pre-antiretroviral therapy, so milder forms may feel less urgent to some providers Having been positive since 1998, long-term exposure to HIV itself — even when managed — can affect brain function over time. A myHIVteam member shared a similar experience, noting cognitive issues linked to older HIV medications like Sustiva (efavirenz), which was commonly prescribed in that era.
It's worth pushing for a referral to a neurologist or neuropsychologist who specializes in HIV-related cognitive issues. Advocating firmly for yourself with your care team really matters here — you deserve to be heard.
October 17
It’s horrible having dementia. I still deal with lack of memory.
It’s not as bad. I remember when I’d go somewhere if park my car in the direction I had to leave. Otherwise I’d find myself driving back and forth ti finally get going.
October 21
I've had the same problem. To be honest. If I didn't have obvious neurological issues. No one would believe me.
October 18 (edited)
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