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To Treat or Not To Treat ...

When that is the question

September 1999

Let's say you have just received an HIV diagnosis, due to Pneumocystis pneumonia, a CD4 count of 120 and viral load at 260,000.

Ask 100 doctors if you should be treated with antivirals (in addition to antibiotics and subsequent prophylaxis for the PCP), and you'll probably get at least 99 "yes" votes.

And if your best friend has been HIV-positive since 1985, boasting 650 CD4 cells and an undetectable viral load -- and has never been on antiretroviral therapy -- most providers would agree that observation alone is an appropriate course of action.

Most people with HIV check in somewhere between these two extremes. What are the factors you can -- and should -- use to help guide the decision of whether or not to start therapy, and if so, what to use?

I like lists. Here are 10 things to consider:

1. Who should definitely be on antiretroviral therapy?

The accumulated medical literature has delineated perhaps three different circumstances under which there is a clear consensus to begin antiviral therapy:

  • Pregnant women

  • People with documented acute (also called "primary") HIV infection

  • People with advanced HIV infection, i.e., AIDS, where the survival benefit of a triple combination regimen can hardly be called into question

If you fit any of these categories and you feel your doctor is twisting your arm into starting, (s)he should be!

2. Are you ready for a lifelong commitment?

I'm not talking about a relationship with another person here (although it could be a valuable part of your personal inventory at this time!). But for what we know today, once HIV therapy has begun, it is to be continued.

We do not yet know how to eradicate this virus. Poor adherence, or going on and off therapy, is clearly associated with greater risk of failure of any regimen (and possibly subsequent ones, too). Thus, you must be ready to weather the risks of side effects and the changes it may incur upon your day-to-day life.

And, comparing HIV therapy once again to a marriage, when things get rocky -- as they often do -- are you willing to consider "counseling" or "changing things about yourself" in order to assure success?

Perhaps you've heard about the anonymous, yet famous "Berlin patient," who discontinued his three-drug regimen after several months, and whose viral load has remained undetectable two years later. We know, for now, most patients will not respond that way. The virus returns to pre-treatment from days to weeks after ceasing therapy.

3. What are the pros and cons of starting therapy at this time?

This is the question whose answer must be pondered -- consciously or not -- before clarifying your intent to proceed. Similar lists of pros and cons have been published in many periodicals, on many web sites, and impressed into the minds of most people living with HIV or somehow affected by the virus.

I'm known as somewhat of a cautious optimist. Therefore, I'll put the negatives first and follow with the positives.

    The cons

  • Will you definitively live longer?

    Except for the classes of people described above, and some other cohorts, while we've shown improvements of numbers and short-term outcomes with antiviral therapy, we have not definitively proven a survival benefit (doesn't mean it's not there; we just haven't followed people long enough to know for sure).

  • Avoid resistance-Part 1

    If you go on therapy and are not adherent, you may develop resistance, earlier than if you had not gone on therapy. And for many of the drugs available today, resistance to one member of a class confers cross-resistance to the others (very likely for NNRTIs, somewhat less likely for protease inhibitors).

  • "But I feel fine . . ."

    If you feel entirely well today, and you believe HIV will be cured "X" years from now with a treatment with no side effects whatsoever, is it worth interrupting your quality of life right now?

  • Wait for a better opportunity: the ultimate crapshoot

    I doubt that even David Ho or the late Jonathan Mann could ever tell (or have told) you that you should use the options available today or hold out for the uncertainty of the future. But one caveat: The lower your CD4 cell count, or the higher your viral load, or the more symptoms you have, the more seriously you should think about intervention.

  • Show us the money

    Very few people with HIV anywhere in the world actually pay full market price for antiretrovirals, thanks to health plan coverage and government assistance. But if all of a sudden, the more than half of Americans with HIV who are not on treatment came out and said, "Give me my $10,000-plus annual drug supply," where would the (approximately) $4 trillion come from? From a harsh economic perspective, perhaps those with the greatest risk of imminent illness or death "should" be the ones to get treated.

    The pros

  • The bottom line

    You get to slow down destruction of the immune system which is the rule -- although not in 100 percent of infected people -- to be expected in a majority of cases of HIV.

  • Go where the virus lingers

    Earlier treatment may better reach so-called "sanctuaries," places other than the blood where the virus tends to linger, if not reproduce (lymph nodes, brain and central nervous system, GI tract, genital organs and fluids).

  • It makes sense

    Our entire medical model is based upon prompt intervention: Does a woman with a 2-cm breast lump get told, "Let's not worry about it now. Wait until it's at least 10 cm before we intervene."

  • Fewer side effects

    Studies have demonstrated that side effects of a given medication (e.g. AZT-induced anemia, the "d" drugs and neuropathy) are more likely to occur the lower the CD4 count, i.e. the more advanced the infection, at the time of starting treatment.

  • A better jump start?

    The stronger the immune system is at the time of onset of therapy, the greater the boost you should get from antiviral therapy- or even immune-boosting therapies (e.g. interleukin-2).

  • Avoid resistance-Part 2

    Earlier treatment may diminish the chance of resistance mutations occurring by enabling more profound suppression of viral activity (not definitively proven).

  • A gift for your psyche

    You may feel ecstatic, or at least happy, by watching your numbers fall (viral load) and rise (CD4 cells) and this can give the psyche/immune system the gift of empowerment.

  • Love thy neighbor?

    No matter how risk reduction-inclined you may be, accidents (as well as flawed behaviors) occur, and someone is still getting infected every 20 seconds worldwide. We know rather conclusively that the lower the viral load of the transmitter, the smaller the chance that the potential receiver will become infected.

4. Do you trust your healthcare providers?

Back to another aspect of the partnership analogy mentioned above, your interactions with he/she/they who put you on a regimen and follow you becomes a major part of your life. If you don't trust your provider, I suggest doing the homework you need to in order to find one in whom you can place your faith. Conversations with friends, members of support groups, and treatment advocates can be invaluable in achieving the right match for you.

And remember these three little words, which can always be used when you absolutely feel thwarted by the system which attempts to deny you what you feel you, need and/or deserve.

No, they're not "I'll sue you" (perhaps a second or third choice).

But look the person right in the eye, and/or speak clearly and without rage, and be prepared to state, over and over, "That's not acceptable."

5. How much should you read and talk to others?

There is a certainly a bias -- a good one, in my opinion -- which encourages people with HIV to read, attend seminars or support groups, and talk to people who have gone down such paths before.

But, as we say in every PLUS seminar (a weekend of HIV-related instruction and care sponsored by L.A. Shanti), just as this is all about options, you also have the option of deferring decisions to your health care provider. If your personality type is such that too much information is confusing rather than calming, go back and re-read the previous section: Find someone you like and place your trust in him/her.

If you do choose to educate yourself, a visit to a treatment advocate (available at AIDS Project Los Angeles and many HIV/AIDS service organizations) is an ideal place to start.

6. Do you believe that antiviral therapy indeed slows down HIV infection?

If not, keep reading -- everything you can -- and please go to Project Inform's website ( or give them a call.

And please do not go to a meeting of a group sadistically and misguidedly called "Alive & Well," formerly known as H.E.A.L. Their radical philosophies (e.g., HIV is not the cause of AIDS) can only lead you away from appropriate treatment.

7. What are your numbers?

As westerners, we tend to over-emphasize numbers but CD4 count and viral load do have much to teach us in tracking HIV.

We've known for all of the 18 years of this epidemic that the lower the CD4 count, the more likely one is to become ill, remain sick or even die. And four years ago, around the same time our antiviral regimens took a protean leap with drugs such as 3TC and the entire class of protease inhibitors, we discovered that the higher the plasma viral load, the more quickly one could expect a decline in CD4 cells.

A few points deserve emphasis here:

Most agree that viral load determinations which will lead to major therapeutic change (including the initiation of therapy) should be confirmed, i.e. repeated.

For a difference in two viral load determinations to be deemed significant, there needs to be a three-fold difference in value. For example, if your viral load was 30,000 on last determination, and it is now 60,000 (a two-fold increase), or even 82,000, this is not a significant rise -- 90,000 would be the threshold thereof. Similarly, a decline to 20,000 or 13,000 is not really significantly lower -- but any value at 10,000 or less would be.

If your viral load was done at a time when you had recently received an immunization (flu shot, tetanus booster, etc.) or had had another infection (anything from the flu to a Herpes outbreak to pneumonia), it may be falsely elevated. Repeat the test when you are back to your "baseline."

Practitioners vary in the threshold they will use to suggest initiation of therapy. The recently revised federal guidelines (available at and many other web sites) are just that -- they guide practitioners towards rational decision-making, but leaving considerable room for variation.

If you like choice, this is good. If you like tight control, this can indeed be anxiety-provoking!

If your CD4 is low, remember the initial study which led to the rapid FDA approval of ritonavir in 1996: It demonstrated that when people with fewer than 50 CD4 cells simply added this drug to their already existing regimen (to which, as we know today, many of them probably had already incurred resistance), within two months there was already a discernible survival advantage.

8. What is the difference between side effects and toxicity?

None, a few might say. But most would agree there is an implication of the latter being worse than the former.

I agree. You may feel fatigued, or develop a rash, or feel nauseated, upon starting almost any drug. Sometimes, these symptoms subside on their own; sometimes they can be treated with other medications. There tends to be an under-treatment of side effects of antivirals -- I have virtually never seen a patient with diarrhea from nelfinavir (Viracept®) which is not controllable with appropriate antidiarrheal therapy, much of it available over-the-counter.

When a side effect is intolerable, you can stop the drug and it will almost always reverse (significant neuropathy being the exception here -- even that may resolve, but very slowly). But the drugs being used to treat HIV will not characteristically result in life-altering consequences. You will not go blind, your liver will not liquefy, and, most of all, the chance of dying is so small as to be negligible.

(The recently approved antiviral abacavir (Ziagen®) does have the potential for a serious, life-threatening effect if it is stopped due to a specific kind of allergic reaction, and then re-started. Also, there were a few deaths reported during the expanded access of ddI (Videx®) in 1989. These were patients who developed pancreatitis, which we did know about then in reference to HIV drugs and generally did not report the symptoms of abdominal pain and nausea to their providers.)

Remember, as we have to often meet several people to find the right person for a longer-term relationship, look at the initial period of finding a drug combination which is both tolerable and effective for you as "the dating period."

9. Do you know the difference between an anecdote and scientific data?

Clinical trials attempt to answer many of the questions we ask every day, and yet still unanswered are some of the basics: Is there a "best" antiviral regimen? How many doses can you miss before resistance occurs? What is the best time to start treatment?

Long before any significant question gets answered, there are usually opinions held by providers and patients, often announced in public. This is fine, part of our First Amendment rights. But know what is based on scientific fact (e.g. the START trials have demonstrated that for the double nucleoside portion of a triple combination regimen, AZT/3TC, d4T/3TC, or d4T/ddI are all comparably effective) vs. opinion/anecdote (e.g. "Norvir is stronger than Viracept," or, "Four drugs always work better than three in suppressing viral loads").

And when your best friend tells you that his cousin had hallucinations from efavirenz (Sustiva®), or hepatitis from saquinavir (Fortovase®), or insomnia from d4T (Zerit®), remember, you may have a completely different experience.

10. What other questions or concerns do you have?

Whatever they are, please take the time to give them appropriate airing. The quantity as well as quality of your life may well depend upon it. Good luck!

Mark Katz, M.D., is regional HIV/AIDS physician coordinator, Kaiser Permanente of Southern California and clinical assistant professor at the UCLA Care Center.

This article has been reprinted at The Body with the permission of AIDS Project Los Angeles (APLA).

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This article was provided by AIDS Project Los Angeles. It is a part of the publication Positive Living.
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