OutSmart - This Issue

POSITIVELY TOXIC
HIV meds are not all they’re cracked up to be
by Thomas Gegeny

Recently I received a call at The Center for AIDS that pretty much sums up the state of HIV treatment in 2002. A woman called asking for the name of an HIV-treating physician in Houston. She needed to get her niece out of a hospital in central Texas because, in her words, “They did not know how to take care of her, and she is dying.” The niece has been HIV-infected for roughly 10 years and was admitted to the hospital because of muscle weakness, severe abdominal pain, and vomiting. She was thought to be having seizures. It turns out that she was experiencing drug toxicity from her HIV medications. She had pancreatitis for sure, and perhaps even lactic acidosis, since she cannot walk because of severe muscle weakness. She is off her medications for the time being, but she is not recovering very well—thus her aunt’s desire to transfer her to medical facilities with more experience in this area. The woman is 29 years old.

In case you haven’t heard, HIV medications aren’t just hard on the virus but also on the people taking them. Besides, as we all know by now, they do not cure the disease or even “eradicate” the virus from the body. The drugs have bought time for people with HIV—but who knew at what price? Even though fewer HIV-infected people are progressing to full-blown AIDS, because of HIV medications, a growing number of people are experiencing metabolic complications, toxicities, and yes, even death—in some instances because of HIV medications themselves. One report at an HIV scientific conference earlier this year indicated that life-threatening (“grade 4”) events may now be more common in the HIV-infected population than AIDS-defining events, like opportunistic infections and certain cancers.

Seeing some of the worst effects in Center for AIDS clients, I am now inclined to change the meaning of the acronym HAART (commonly used to describe HIV medications) from Highly Active Anti-Retroviral Therapy to Hardly Acceptable And Really Toxic. The list of maladies is daunting, including retinal toxicity, neuropathy of the hands and feet, liver toxicity (especially if hepatitis co-infection is present), kidney malfunction, pancreatitis, lactic acidosis, cholesterol and triglyceride abnormalities, and anemia.

Also, many HIV-infected people are dealing with the physically disfiguring effects of lipodystrophy (frankly referred to as “the hollow-cheeked ‘poz face’ common to patients on anti-HIV drugs” in PRIDE.02 magazine). The physical manifestations of lipodystrophy do indeed include a reduction of fat in the face as well as the arms, legs, and buttocks. A build-up of fat is also sometimes seen in the upper abdomen, breasts (especially in women), and/or at the back and sides of the neck. The syndrome could be caused by HIV medications, HIV itself, or both. The telltale purple spots associated with Kaposi’s Sarcoma may be much less common now, but people with HIV have lipodystrophy to give away their disease status.

However, the side effects and toxicities of HIV drugs are not the whole story. Although T-cells can bounce back with HIV therapy, the overall reconstitution of the immune system is incomplete. For example, irregularities in B-cell function do not seem to improve very much with HAART. This may be why certain cancers (like non-Hodgkin’s lymphoma) still persist at higher rates in HIV-infected people despite successful viral suppression with HAART. The drugs have brought many people back from the brink of death because of AIDS, but in the end those people may very well die from other complications. The bottom line is that people with HIV and their health-care providers have to be more vigilant than ever with this disease.

Clearly, the cure for HIV/AIDS must involve the immune system and not just drugs that combat the virus. What’s important for people with HIV to realize is that the fight for a cure continues. Treatment activism and advocacy are not dead. What’s important for uninfected people to realize is that the virus keeps spreading and that the treatments available are incomplete and toxic. Do not think for an instant that getting HIV now is somehow better than it was before HAART. People are still getting sick and dying now. They are only getting sick and dying differently.

Thomas Gegeny is editor of the journal Research Initiative/Treatment Action! (RITA!) and the RITA! Weekly Newsletter at The Center for AIDS: Hope & Remembrance Project. He also produces the patient newsletter HIV Treatment ALERTS!

In the September OutSmart: A report from the XIV International AIDS Conference.

Selected HIV information resources on the web

Local

The Center for AIDS: Hope & Remembrance Project

www.centerforaids.org

AIDS Foundation Houston

www.aidshelp.org

AIDS Coalition of Coastal Texas (Galveston)

www.fc.net/~acct

Body Positive Wellness Center

www.bodypositivehouston.org

Houston AIDS Information Link (HAIL)