Heart of the Question
Ok, I've read so many questions and answers on this site and done research other places. It seems many want to know how long they'll live and when to begin medications.
Most replies from the docs and research I've done other places say people should live an almost normal life-span. It also seems new evidence suggests HIVers should start meds earlier--above CD-4 500.
We all read these studies saying people who started at lower CD-4s were way more likely to die in those studies. We think, "Wait, I thought they've been saying we should live almost normal life-spans and that CD-4 350 was when to begin?"
I guess the question I have is: How many people in your practice or who you've known, who were on HAART with good adherence, up and died? I guess people who seemed to be doing well and it surprised you they died. If so, were they younger or older?
On when is a good time to begin medication: How many have you seen either get really sick or die with decent or very good numbers? I'm talking about those of us trying to figure out when to start meds. Have you seen young people, like myself not on meds yet because numbers appear to be good, surprise you with a bad illness or death?
I guess for myself (still learning about HIV) I fear getting sick with something all of a sudden and dying. I know this H1N1 is really scary. Besides that, would someone in early 30's with CD-4 count above 500 and low VL get sick and die? Do HIVers mainly have to worry when CD-4 falls below 200?
Ok, I know I've asked a lot of questions. This whole thing is just so scary. My only experience with someone I know having HIV/AIDS was a family friend who had dinner with us in 1992. I now know he probably had PCP, because he was coughing so much. He died about 2 months after that dinner. So, the vision in my head is not good.
Thanks for the question. It does get to the heart of the matter. When we talk about statistics it is the best way we have of making predictions about what may happen to people with similar chracteristics (such as age, geneder, lifestyle, CD4, VL, etc) as the people in the studies. Yes, I know people with HIV with high Cd4 cells who have died, I know many more with low CD4 who have died, but I also know people without HIV who die suddenly at a young age. These individual observations are not as useful as the studies that can look across many people and help correct for some of the variation that can occur by chance.
In all of the reports about survival in HIV, the main factor that is associated with long-term, healthy survival is getting the CD4 count up and keeping it up. Most of these reports indicate a count of > 500-650 may be best.
The best time (based on CD4 count) to start treatment is an area of ongoing debate and discussion. There is no definitive answer because the best study to answer this has not been done (it has just started recently and is called the "START" trial, but will take several years to be completed). The studies we have are based on looking back at people who started treatment at different CD4 counts and determining who did better...those who started at higher CD4 or those who started at lower CD4s. It seems that most evidence is clear that below 350 is not good. But there is controversy about starting above 350. That is because the look-back studies cannot account for why some people started early and others waited. Maybe the early treaters were very anxious and wanted to take meds right away and took vitamins and got thier flu shots and ate well, etc and maybe the ones that waited did not believe in the treatment and didn't like taking their meds, and didn't see their doctors often or used drugs, etc. There could be many reasons why the 2 groups may be very different that has nothing to do with when they started their meds.
Most docs would start someone on meds above 350 if that person is ready to take meds, not miss doses and work together to watch for side effects.