I was at Vancouver Hospital recently with Sangam after she had hand surgery and needed her cast replaced. As the nurse was cutting through the cast’s layers, she asked what we do. When she found out that we work in HIV support and education, she told us she has a long time friend who was just diagnosed with HIV.
“He only has 10 CD4 cells. That’s pretty low, right?” she asked as she sawed carefully. “He thinks he’s had it a long time.”
A count of 10 is very low. CD4 counts help measure the strength of the immune system. It used to be that treatment was recommended when someone’s CD4 counts were around 350, but I just read on the BC Centre for Excellence in HIV/AIDS website that "There is no CD4 cell count threshold at which initiating antiretroviral therapy is contraindicated." (page 6 of the Adult Therapeutic Guidelines). The point at which to start treatment is influenced by overall health. coinfections like Hepatitis C, acceleration of HIV disease, pregnancy, and other factors, but a new threshold of 500 is being suggested. To be diagnosed at 10 CD4 cells made me think that he’d had some kind of opportunistic infection that prompted his doctor to test him, but I didn’t ask her about that.
“He says he feels okay and doesn’t want to take HIV medication.” she continued. “I want to respect his decisions. I mean, I’m not the one who has to take the stuff.”
True enough. While HIV treatment can extend and improve quality of life, it’s not always a walk in the park. Side effects are an issue, both in daily routines (try getting errands done when you have explosive diarrhea) and in the long term – years of using some meds may lead to toxicities. Although HIV has been around for decades, the meds haven’t, and there’s so much we’re learning about the relationship between HIV progression and meds.
But meds do help significantly. Once CD4 counts go below 200, the immune system isn’t as strong as it needs to be to fight opportunistic infections, named that because they literally take the opportunity to attack the body when the immune system’s weak. This is where HIV meds have brought miracles and the much cited “Lazarus effect” to some. People who thought their lives were close to ending have been able to return to physically active lives.
Talking with the nurse reminded me of many conversations I’ve had over the years. Making the decision to start on treatment isn’t always straightforward, especially if side effects are a worry. Many can be managed, but they can’t always be mastered. And that matters if you’re looking after children, parents, or an ill partner. As feisty Dr. Bob Frascino of The Body puts it, HIV can be a “Chronic not always so manageable condition.” In addition to all the physical presentations that would indicate it’s time to start treatment, the BC Centre for Excellence notes, "Patient readiness is a key consideration." (page 6 of the new guidelines).
Patient readiness requires education, support, and confidential access (especially in remote communities). We’re always working on it here at PWN, and would love to hear how you’re working on it too so we can improve coverage for folks everywhere.
- Janet
This was posted on Friday, January 21st, 2011 at 9:30 am and is filed under Body Health, Education & Resources, HIV progression, HIV Treatment . Feel free to respond, or trackback. Read our comments policy.