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Starting HIV Therapy

Apr/May 1998

Although she never completed high school, nevertheless she was educated enough to know that new and promising anti-HIV medications could lower her viral load to so-called undetectable levels

imageLydia J., an African-American woman in her early thirties, sat somewhat nervously on the edge of the exam table in one of the clinic rooms at her neighborhood community health center. This visit was her second one to see me for her recently diagnosed HIV disease, which she had acquired from a long forgotten boyfriend. During her initial appointment two weeks ago, I did a complete history and physical examination, both of which were by and large unremarkable, and I ordered a slew of HIV-related blood tests. Today Lydia returned for the results of those tests, and the nervous anticipation in her eyes was evident as soon as I entered the room.

After briefly inquiring if she had any new problems or symptoms to report (which she did not) I quickly got to the important business at hand: Her T-cells, I reported, were 536, and her viral load was 58,000. The news was both good and not-so-good as we faced the old conundrum of whether the glass was half empty or half full. Her T-cell count was not as profoundly depressed as it might have been, and she was not at any great risk of coming down with a life-threatening opportunistic infection in the near future. Yet I realized that the moderately elevated viral load indicated that the HIV was indeed active, slowly but surely eroding her immune system in a silent battle of attrition with which I was grimly familiar. As with more and more of my HIV patients, Lydia felt and looked fine, and there was every reason to hope she would remain so for many years. But sooner or later, her body would probably lose its battle against the invisible virus that had brought her to my office in the first place.

Like so many of my other patients, Lydia was already prepared for our discussion of what treatment, if any, I would recommend. Although she never completed high school, nevertheless she was educated enough to know that new and promising anti-HIV medications could lower her viral load to so-called undetectable levels. More important, she also realized that taking these new medicines regularly was absolutely essential to their effectiveness. Her familiarity with these matters relieved me somewhat, since like doctors everywhere in practice, I felt pressed for time in my busy clinic schedule. Nonetheless, I realized that this moment in my relationship with Lydia was as important as any that would face me that day.

After noting the value of viral load measurements as an indicator of HIV activity and progression, I concluded with my recommendation that she consider starting anti-HIV treatment, although not necessarily with one of the full-scale combination cocktails with protease inhibitors. I explained that many experts would opt for less aggressive therapy with two anti-HIV drugs, D4T and DDI, both of which could be taken on a twice daily dosage. I went on to note that such conservative treatment would probably suppress the HIV for a year or so and would keep open the option of more aggressive regimens in the future. Out of desire to save time and not confuse her, I did not elaborate on how such dual nucleoside therapy did not follow the recently released Centers for Disease Control and Prevention (CDC) guidelines, or on how several CDC experts openly violated their own guidelines during a recent panel discussion on HIV treatment that I attended. Instead, I concluded my spiel by observing -- apropos to the self-iconoclasm of the HIV experts -- that for a patient like herself, there was no absolute consensus on when or how to begin treatment.

We Had An Honest Conversation

"It basically comes down to how you feel about treatment. The best time to start is when you feel you're ready," I tried to reassure her. Although I had countless similar discussions with patients in the past, I was always afraid that my apparent equivocations about starting therapy might seem confusing. There was a fine line between giving the patient my considered medical opinion and still respecting the patient's autonomy. But in the definite way she responded to my advice, Lydia seemed to understand this distinction. Other than nodding understanding of the importance of taking anti-HIV medicines regularly, Lydia had listened attentively to my explanation of her lab tests. But when I finished my recommendation, she reacted with a candor that I greatly appreciated and found almost disarming.

"I'm really not ready right now to start anything new in my life...not until I deal with what I have already. Maybe later." To my embarassment, Lydia seemed almost apologetic that she was declining my advice, at least for now.

"That's fine," I countered. "There's really no urgency at this point, and we can follow your viral load so things won't get out of control."

Lydia then proceeded to tell me about her problems with her present boyfriend, her long job hours as a building custodian, her concerns about child care for her two small children now that her mother was too sick to babysit, and her underlying anxiety and fears about recently testing HIV-positive. On our initial meeting two weeks ago, I had asked her -- in general terms -- about any family or emotional stresses in her life and if she had an understandable unease about discussing such personal problems so openly with a new doctor. Lydia replied, "Everything's just fine." But faced with an important medical decision on her second visit with me, she was willing to concede that HIV was not the only, or perhaps even the greatest, problem in her life at that particular time. Indeed, trying to convince Lydia to begin anti-HIV therapy would have been the worst thing I could have done for her. It would have been the proverbial putting the cart before the horse.

"I appreciate your honesty," I replied, realizing that, despite her many personal problems, Lydia was going to be one of my "easy" HIV patients -- that is, a patient who trusted me and who would be open and straightforward in her decisions. We decided it would be best for her to see her HIV Case Manager, to help arrange social service help and other support for her non-HIV problems. I scheduled a one-month followup appointment for her to see me, and I told her that we would at that time continue our discussion about treatment options.


Reviewing and Facing Reality

The above scenario is a common one in the offices and exam rooms of doctors who care for HIV-infected people across America: An HIV-positive adult, either recently diagnosed or living with the virus for many years, faces the question of whether to begin therapy with the newer "combination cocktail" of anti-HIV medications. Until recently, doctors and patients had little solid information, and even less hope on which to base their decisions about therapy since the medical studies were not optimistic about AZT's long-term effect on HIV. Indeed, the only matter for which a doctor was justified in leaning heavily on a patient was the absolute necessity for taking PCP prophylaxis if the T-cells were under 200. Today, the fatalism and nihilism of the past have been replaced with an odd combination of hope and uncertainty, as our ability to monitor the virus has improved and our medications have shown the promise of long-term suppression for many people with HIV. Moreover, the importance of strict adherence to anti-HIV treatment regimens adds a new and urgent dimension to caring for HIV-infected patients, a dimension usually not found in the care of patients with other medical problems. Although not taking blood pressure and diabetes medication may risk eventual medical complications for hypertensive and diabetic patients, the blood pressure or blood sugar should eventually respond once the patient starts taking the medication properly. However, the well-known risk of HIV resistance to medication makes 100% adherence with these medicines not an abstract ideal, but rather an absolute necessity.

As most patients can attest, doctors have never been renowned for taking time with patients to explain any treatment regimens, HIV or otherwise. In the old days, this lack of discussion stemmed from the paternalistic, hierarchal nature of most medical practices: The doctor was the undisputed "authority," and the patient was expected to accept this authority without questioning. Nowadays, most doctors are less likely to carry around delusional baggage about being infallible. Rather, "managed care" -- with its neo-Darwinian imperative of seeing as many patients in as short a period of time possible -- keeps the doctor's mind, if not eyes, on the clock. Doctors who want to care for HIV patients must not feel unduly pressured by "managed care" time constraints. Indeed, this potential conflict is one area in which HIV/AIDS advocates could strike a major blow for people with HIV. Double and even triple booking of HIV patients should be denounced in "managed care" plans.

Physicians, in turn, must change their usual approach to starting medications when they are dealing with HIV patients. For most other medical illnesses, treatment is begun as soon as patient and doctor agree it is necessary. For example, once it is clear that sodium restriction, weight loss, and exercise are unsuccessful in lowing a patient's high blood pressure, the doctor usually decides it is time for medication. After the patient agrees to such intervention, the prescription is written and filled to be started immediately by the patient. Instituting anti-HIV medicines, however, often requires more than just the doctor's and patient's agreement to start such therapy due to the primal importance of taking the medication correctly and regularly. So, many progressive programs in anti-HIV medication adherence provide for a "cooling off period," a preparatory time span (from days to weeks) between the moment the doctor gives the patient the prescriptions and the moment the patient takes his or her first dose of anti-HIV pills.

Doctors need to understand and respect the importance of this "cooling off period," during which the patient can review the proposed regimen in light of his or her daily schedule and can develop confidence about taking the medications correctly. Nurses, social workers, and case managers should be familiar with the newer anti-HIV regimens and should also provide crucial backup support for the patient during this cooling off period, especially since many patients might have unanticipated anxieties about beginning anti-HIV treatment.

In my experience with HIV-infected patients, the biggest and most difficult step in anti-HIV treatment is not the actual taking of the medications. In fact, the good news is that most patients, if given enough information and support, are able to take and tolerate even the most complicated regimens. Rather, it is the patient's decision (and resolve) to start therapy that is of paramount importance in the matter of adherence. Just as our present knowledge of the natural history of HIV infection tells us that anti-HIV therapy can be justified at any stage of infection (from the earliest to the latest stages), so too does the importance of strict adherence to such therapy force health care providers to realize that an individual patient's decision to accept or decline such medication must be regarded as the right decision for that particular patient at that particular time in his or her life. Indeed, the present lack of a clear-cut consensus among even the experts in this field should give a physician pause in criticizing an HIV-infected patient who might decide not to begin anti-HIV treatment.

The importance of adherence to anti-HIV medications is but one more instance of how HIV disease has forced physicians to do what they should be doing anyway: listening to their patients and respecting their patients' wishes and needs. Despite the major medical strides made in HIV treatment over the past few years -- and the protease inhibitors indeed represent a triumph of basic medical research -- these scientific advances have highlighted the importance of talking to the patient and getting to know the patient as a person with unique needs and unique values. Ironically, these "high tech" medical developments have made a patient-centered, or more appropriately, a person-centered approach to HIV care even more crucial to the successful control and treatment of this virus.

Illustrations by Elton Tucker

Back to the Apr/May 1998 Issue of Body Positive Magazine.

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This article was provided by Body Positive. It is a part of the publication Body Positive.