The Bay Area Reporter - March 29, 1996
G'dali Braverman, ACT UP Golden Gate Writers Pool

Thanks to the work of a handful of ACT UP activists, there now exist evolving standards of care that have prolonged and improved the lives of countless numbers of people with AIDS. This article will attempt to consolidate some of the information regarding therapeutic options for PCP and CMV that should be available to all patients.

PCP

While KS (Kaposi's Sarcoma) can appear in people with HIV at virtually any CD4 level, the most common infection to appear in higher CD4s is still PCP. For most patients, initiating PCP prophylaxis (preventative therapy) is as traumatic as initiating antiretroviral therapy.

Here one arrives at a major fork in the road of treatment decisions. It requires acknowledging that the immune system is sufficiently suppressed to allow the body to be vulnerable to this major infection. While PCP is still the number one killer of people with HIV, it is very preventable and treatable.

At present, the recommended guideline for initiating PCP prophylaxis is when a patient's CD4s drop to 200. However, it is important to note that a significant number of PCP cases occur at above 200 CD4. Therefore, approaching your doctor about therapy at 250-300 CD4 is a wise option. A determining factor in choosing to start therapy earlier is your percentage of CD4 to total lymphocytes (CD4s). While some physicians use <15% as a cut-off, many feel that <20% is a safer marker.

If you know that you are the type of patient who stares at your prescription slip for a couple of weeks before taking it to your pharmacist, or you procrastinate and contemplate the child-proof cap on a new bottle of pills before popping the first tablet, than get the ball rolling sooner.

Septra (also known as Bactrim) is still the preferred PCP prophylaxis. It remains unclear whether taking the RS or DS (regular or double-strength) pill daily is more effective. Additionally, we are unsure as to whether DS three times a week is preferable to RS or DS daily. Dapsone runs a very close second as an effective prophylaxis for patients who have never had an episode of PCP. This is an important option for patients who are allergic to Septra.

PCP pitfalls

If you have an allergic reaction to Septra pills (e.g. severe rash) your doctor should let you know about the option of doing "desensitization": taking daily small amounts of a liquid formulation over the course of one to two weeks. Most patients are able to successfully remain on Septra pills after undergoing desensitization.

If you took Dapsone as your primary prophylaxis, and actually got diagnosed with PCP, you should seriously contemplate adding monthly Aerosolized Pentamadine to prevent PCP recurrence. Don't rely exclusively on a drug that has already failed to protect you from "active" infection. Although combination therapy is not "approved," it is widely accepted by practitioners.

Prior to the approval of Septra, Dapsone, Mepron, and other drugs for the treatment of active PCP, many patients were hospitalized for the duration of each PCP episode. Managed care now brings us everything short of heart transplants on an outpatient basis. This is a critical concern for people with AIDS. Know the symptoms of PCP, and get yourself to your doctor or hospital quickly. The difference in survival is linked to the severity of your diagnosis.

Ask whether you are categorized as having "mild, moderate, or severe" PCP. The treatment(s) should vary accordingly. Make sure that you have X-rays done at the earliest possible time. Request weekly follow-up X-rays to determine whether you are responding positively to treatment. Always ask for a copy of your X- rays and all other results. They are your property! Having them handy can be very useful for future care.

You should beware of relying on the results of a "finger sats" test alone. (That's when a clothes-pin type of object is placed on your forefinger.) Moreover, if this is performed only when you are in a resting state, be even more skeptical of the results. If you present with clear-cut symptoms such as shortness of breath, you can request that arterial blood gas be tested. It's a quick procedure involving a prick of the artery at your wrist. This is an important diagnostic in identifying the severity of PCP. Don't underestimate this disease, and don't assume that being treated outpatient means that this is not a life-threatening condition. Insist on proper and frequent monitoring.

CMV disease

While much discussion has abounded regarding viral load testing for HIV, there has been precious little attention given to the importance of viral load testing for CMV (Cytomegalovirus; the primary cause of blindness in people with AIDS). Ask your doctor whether s/he can order this test for you. They can call Chiron (located in Emeryville) to find out how to access this tool. This is particularly important for people with CD4 <100.

Several studies have shown that high levels of CMV, when detected using PCR testing of blood and urine, are predictive of development of disease. Recently the FDA approved Oral Ganciclovir as the first prophylaxis for CMV. Although this drug has been shown to reduce CMV levels, your doctor may be hesitant to prescribe this drug because of some conflicting data. Regardless of how one interprets that data, it is critical to determine whether you are at higher than normal risk of developing active CMV infection. The CMV bDNA, viral load, test is the best diagnostic.

Aside from oral Ganciclovir, the best preventative strategy is regular eye exams. This does not mean seeing your optometrist, the person who prescribes your eyeglasses. Some managed healthcare plans may try to refer you to an optometrist. Insist on seeing an ophthalmologist! S/he can not prevent CMV retinitis (infection of the retina), but early diagnosis can mean the difference between saving the sight in an eye or loss of "visual acuity."

For patients who are newly diagnosed with CMV retinitis, be sure to determine the location of lesions in your eye. Your eye doctor can let you know whether your diagnosis is more severe (Zone I being more central) or peripheral (Zone 3). Until recently patients were standardly treated with one of two daily intravenous drugs. Now patients request the newly approved intraocular implants that provide time release drug from a microscopic device which is surgically placed into the eye. The results have been astounding in terms of delaying progression of lesions. Implants are most highly recommended for "immediately sight threatening central retinal lesions."

For newly diagnosed patients who have peripheral retinitis, oral Ganciclovir appears to be an effective option after completion of' a full course of intravenous drug. This can provide a significant quality of life benefit, since you won't have to receive daily IV therapy.

Finally, patients with recurrent retinitis have many more options. Very recent data from a national study shows that combination treatment with Ganciclovir and Foscarnet was far more effective than switching or continuing on current monotherapy. This combination could be tough to tolerate, but individuals may consider it a worthwhile option in preserving sight. Another extremely important option is Cidofovir. On March 15 the FDA approved Cidofovir for standard CMV treatment. Cidofovir offers the important benefit of less frequent dosing. Instead of twice a day IVs (with Ganciclovir or Foscarnet), which taper down to once a day after two weeks, Cidofovir is administered only once a week for two weeks, followed by treatment once every two weeks.

If the thought of all the above procedures is a bit much for you to swallow, than you're not going to want to hear about salvage therapy involving direct injections of drug into the eye. This, too, is an option your doctors should be prepared to discuss. Not all patients tolerate or respond to systemic therapy. Localized injections are important options. At present Ganciclovir is available for such treatment. Cidofovir is being studied on a limited basis; while the drug is now approved and available, your clinician has little data on which to proceed.

Pitfalls in CMV

Despite the phenomenal advances in the treatment of CMV, your best weapon is early detection. If your CD4s are <100 be sure to see your ophthalmologist at least every 3 months. Book it in advance for an entire year. If your CD4s are <50 see your ophthalmologist every 4 to 6 weeks. Your health insurance will probably try to fight you on it, but just remember: the difference between Zone 3 peripheral retinitis and Zone I central retinitis is only three weeks. That's how quickly CMV retinitis can progress when untreated.

For people with HIV whose CD4>100, make sure you see the ophthalmologist every three months. If your CD4s are much higher, twice a year is fine. However, if you have been diagnosed with CMV infection outside of the eye (Colon, Esophagus) make sure that you are immediately referred for an eye exam. Remember, your gastroenterologist communicates with you general doctor, not your eye doctor. The thought of an eye exam may not be the first thing that comes to his/her mind: however, it should be your first thought.

For additional information on Standard of Care, contact ACT UP/Golden Gate. At present we can provide you with the ACT UP Philadelphia guidelines. As always we invite you to join us in working directly on treatment and research issues. Imagine the advances we could have made if more than a handful of people had worked on Countdown 18 Months back in 1990.t

This article is dedicated to the memory of Michael Wright and Scott Slutsky, whose work on Countdown 18 Months was pivotal to the approval of several drugs that are widely used in the prevention and treatment of opportunistic infections.
960329
BR960305

Copyright ©1990, 2000. ÆGIS. All materials appearing on ÆGIS are protected by copyright as a collective work or compilation under U.S. copyright and other laws and are the property of ÆGIS, or the party credited as the provider of the content. Feedback/Contact Us.