Keeping It Real

In my first few months as director of education and outreach here at The Center for AIDS (CFA), the world has turned topsy-turvy. The events of mid-September have affected us all. Upon receiving a recent phone call from a frantic person whose viral load had "spiked" from undetectable to 200, and several others like it, I pondered why this infinitesimal rise in HIV would cause someone such concern. The answer is simple and profound: uncertainty about life after September 11 has created increased anxiety about life in general, and to some degree, living with HIV.

But in the words of my coworker Paul Simmons, "I know what HIV is and I'm not afraid if it." If the recent "wait to treat" federal guidelines are to be believed, HIV'ers shouldn't be afraid either. Since their inception in 1986, the guidelines have been established in the hope that nonspecialists would have a slight inkling of how to treat a patient with HIV.

The newest guidelines tell us what we've known for a while -- the side effects associated with long-lasting HIV drug therapy outweigh the benefits. In light of this, the feds have recommended that otherwise healthy patients not begin HIV therapy until their T-cell count reaches 350. What? Are they crazy? The answer is no. Gone are the days of seeing your doc, getting a battery of tests done, and walking out with your own personal pharmacy, regardless of your T-cell level.

The implication for the newly infected patient without symptoms of AIDS is clear: it's better to wait before beginning HIV "chemotherapy." However, what about someone who's been on drug for years and is now faced with a decision to divorce themselves from a lengthy marriage to their pharmaceuticals? This split-up also means leaving a "family" that includes two precious offspring -- undetectable viral load and high T-cell count.

Let's look at the facts in this family feud:

• In a recent Johns Hopkins medical study, over 1,000 individuals with various T-cell counts began therapy. There was a strong relationship between disease progression (getting sick) and beginning therapy at T-cell counts below 200.

• In a Centers for Disease Control and Prevention study of 5,100 people, the risk of death was significantly greater for those who started therapy at T-cell counts less than 200 than for those who started therapy at counts greater than 200. Additionally, no clear benefit was observed in those who started therapy above 350 T cells.

• Data available as early as 1995 show half of all first-time AIDS diagnoses occur at T-cell counts less than 60, much lower than patients would normally expect.

• Loss of T cells as the result of HIV infection averages 50 per year from baseline (starting) levels. Using the revised treatment guidelines (suggesting therapy be offered at 350 T cells), a newly diagnosed individual with 900 T cells, could be spared 11 years of HIV drug therapy and its related toxic side effects.

So, it's probably time for chronically infected but otherwise healthy folks (and their docs) to re-examine the role that long-term drug therapy plays in their management of HIV disease. The CFA can provide information to help you make these tough decisions about when to start (or stop) therapy. Whether you've been recently diagnosed or are treatment experienced, there are options; most will require some suspension of fear from the past and a leap of faith into the future.

Back to the HIV Treatment ALERTS! November 2001 contents page.