The Bay Area Reporter - February 13, 1996
G'dali Braverman, ACT UP Golden Gate Writers' Pool

However, all patients should be familiar with basic guidelines for care that should be part of any treatment plan.

While the following guidelines are not comprehensive, they are intended to empower patients to look beyond the FDA and CDC recommendations, which are too frequently the physician's bible. Those guidelines can be dangerously restrictive when strictly adhered to by practitioners who are not HIV specialists. One need only travel a few miles outside of SF to find that most people with HIV/AIDS are dependent upon general practitioners who may have been great family doctors, but are strangers to the field of HIV clinical care.

What to Ask for in Baseline Blood Tests

Most of us are familiar with a standard panel of blood tests (CBC) that looks at markers indicating how well your different organs are functioning and your current levels of electrolytes (minerals such as magnesium and potassium). What many of us may never have had done are some basic additional tests to determine whether we were exposed to an array of pathogens (viruses, parasites, bacteria) which often cause life-threatening infections at later stages of disease. Amongst the more common infections that one should check for are herpes, toxoplasmosis, hepatitis, and CMV. Testing positive for antibodies to one or more of these pathogens does not mean a death sentence. It does, however, allow you to get appropriate vaccinations and choose to begin preventative therapy. One quick blooddraw could be the determining factor in allowing for a prescription of Acyclovir, a widely used and rarely toxic drug which suppresses herpes, a virus that is known to up-regulate HIV replication when activated.

How Often Should You Get Your T-Cells Done?

As of l993, the general recommendations made by NIH, as reported in the Journal of the American Medical Association, called for CD4s to be drawn every 6 to 12 months if the absolute CD4 count is >600. What this does not take into consideration is the clinical condition of the patient. Even at such high CD4 levels, if you have thrush (oral candidiasis), oral hairy leukoplakia, recurrent vaginal yeast infections, or even chronic dermatologic or sinus complications, you should be monitored more frequently and referred to the appropriate HIV specialist: gynecologist, dermatologist, dentist/stomatologist. Thrush, as one example, is a "soft" clinical sign that, in patients at "earlier" stages of disease, is considered indicative of faster disease progression. This alone may influence a patient's choice, despite narrow FDA recommendations, to begin combination antiretroviral, herbal, or other therapy at above 500 CD4 cells. Monitoring CD4s quarterly will also help you chart your progression or improvement and the effects of your chosen intervention more closely.

If your CD4s are already <600, don't go more than three months without seeing a physician. Most of us who participated in expanded access programs for 3TC and d4T have gotten used to getting our CD4s done every one to three months. This is good preparation in the event that your CD4s drop below 100. At this stage you should insist on monthly draws. Many studies have shown the increase in risk with each drop of 10 CD4s within this range. Certainly we know that the incidence of opportunistic infections (CMV retinitis and MAC) increases dramatically at both below 50 CD4s, and then again below 25 CD4s. So don't be fooled by arguments that there is no use measuring T-cells once they've gone below (or above) some arbitrary level.

How Can You Use A Viral Load Test?

For those of you who still do not have access to viral load testing, you are simply going to have to be more vocal about this gap in diagnostic services. There are innumerable ways in which the viral load test could serve as an additional tool. Some other less considered uses include the following: 1) to help establish a pulsing schedule for short term and intermittent use of antiretrovirals in patients who face treatment limitations due to toxicities; 2) to measure changes in viral burden during an active infection, as well as response to treatment for these HIV-associated infections; 3) to assess the effect of non-traditional interventions (i.e., meditation, acupuncture, Qi Gong); and 4) to determine the effect of stopping a particular treatment(s) - taking a "drug holiday." The frequency with which you utilize viral load tests should depend upon your objective in designing and measuring the effect of a treatment plan.

Starting HIV Therapy

If you are waiting for your CD4s to drop below 500 in order to consider therapy, then you should think again. First off, don't restrict yourself to the idea of AZT, ddI, protease inhibitors, etc. as primary therapy. We have no home-run drugs to date. Everything is an adjunct therapy. That means it's never too early to start taking vitamins, herbs, practicing meditation, seeing a therapist, improving your nutrition. Taking care of your general health is the first part of treating HIV. Your health care plan should cover some, if not all of the above.

At present the FDA has no recommendations with regards to starting antiretroviral drug therapy at CD4>500. Your doctor will probably be hesitant to prescribe the approved drugs at such a stage of disease. However, if you feel strongly about starting aggressive therapy with combinations of drugs, then press on. The upper-limit of 500 CD4 is a somewhat arbitrary setting which was established based on the design of early studies. Today, one might want to at least do a viral load test to help determine whether more aggressive therapy is called for. High CD4s alone are not a guarantee of low viral burden.

There are other arguments for starting antiretrovirals earlier on. Today we have a larger arsenal of drugs and combinations of therapies. In years gone by, physicians were more concerned about exhausting a patient's options too early. Now a patient has the opportunity to determine whether. s/he can tolerate drug(s) sooner rather than later. There is nothing magical about the number 500, and lab variations have proven that a CD4 count of 500 could just as easily be interpreted as actually being within a range of 425 to 575 T-cells

Keep in mind that insurance companies do not see copies of your T-cells results. Your doctor's hands are not tied when it comes to either prescribing or monitoring you on such therapies. The safety profiles for approved therapies are well defined. Physicians have had to prescribe treatments to patients at stages of disease which are other than that for which data had been available. You won't be the first patient to demand treatment which doesn't fit neatly within the defined box of approved therapy.

The important point here is that standard of care must include experimental therapies and modalities. That means access to compassionate use drugs, expanded access programs and off-label or broadened indication usage. Beware of being told that you aren't sick enough to receive something like Nupogen, or you're too healthy to receive something like AZT/3TC with a protease. If all of us had agreed to wait for neatly packaged data, many more of us would already be in neatly packaged caskets. Guidelines for standard of care should assure that the least restrictive criteria be available to you and your physicians in managing your health.

Next week's article will provide guidelines around advocating for appropriate prophylaxis, diagnostics, and treatments for the major opportunistic infections affecting people with AIDS.

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Always watch for outdated information. This article first appeared in 1996. This material is designed to support, not replace, the relationship that exists between you and your doctor.

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