Beginning with this issue, Project Inform will change some words commonly used in HIV/AIDS newsletters and presentations. Constituent feedback remind us that words can convey unintended meanings. At their worst, seemingly innocent words can lead to discouragement, or they can insult the listener or reader. They can also carry the wrong message. An early example of this was the media's use of AIDS victim. Though it intended to provoke a sympathetic response, it typically was heard as disempowering or assuming weakness in people with AIDS. Today the phrases in question come from within the community concerned with AIDS -- researchers, educators, activists and healthcare workers.
Some people protest calling today's powerful and often toxic drug combinations, cocktails. They are right. A cocktail is a drink and not always something seen as good. Drug combinations, however, are powerful, serious therapies and are not to be made light of or associated with "partying." Also, people in recovery programs resent the term. Project Inform stopped using this phrase several months ago.
Treatment failure is a loaded and overused phrase in today's vocabulary. Scientists used it to describe a situation in which a person had regained any level of detectable viral load. This grossly overstates medical reality. The only failure involved is making viral load completely undetectable. This hardly qualifies as meaningful treatment failure, which implies dire medical consequences.
People with modest levels of detectable viral load often do well for many years by clinical measure. They are sick of being told their treatment efforts have failed. Project Inform will now use an alternative term, viral breakthrough. This describes a situation when viral load becomes detectable at some level after a period of undetectability. It clearly reflects that something has changed and avoids drawing inappropriate conclusions about the overall effectiveness of a person's current therapy.
The third phrase, salvage therapy, describes a wide and loose group of situations. The intention behind it comes from the efforts employed when a person is not responding to conventional treatment. Patients and their physicians in these situations talk about salvaging something for the patient, often through extreme measures.
By definition, cancer patients in this situation are generally considered a lost cause. In AIDS, salvage therapy was first used to describe experimental treatment efforts for people who had lost response to all available drugs and had run out of options. Over time, the definition has grown even wider. Now it refers to any treatment effort for people who lose responsiveness or become resistant to even their first treatment regimen. The phrase disturbs many people when applied so widely.
People who lose response to a single treatment regimen frequently have a number of options left, including several new drugs and new classes of drugs. These people resent being described as a basket case or at the end of the line. Salvage usually refers to grasping anything of value from a sunken ship or fire-ravaged building. It's no wonder people find it inaccurate and offensive. People truly running out of options are by no means in need of salvaging.
Project Inform will replace salvage with a system for describing stages of treatment:
First Line Therapy: the first and highly potent regimen a person utilizes, usually three drugs, one a protease inhibitor.
Second Line Therapy: the regimen a person chooses after losing responsiveness or experiencing viral breakthrough on an initial regimen.
Third Line Therapy: in short, anything that comes next, the regimen(s) utilized after first line and second line regimens no longer adequately suppress viral load. There isn't much point to creating labels beyond the third line regimen.
We encourage writers, educators and physicians to join us in these changes. The new language is less likely to offend and more clearly communicates the concepts involved.
Project Inform plans to continue a wider review of words and phrases. We hope to improve our sensitivity to words that affect women, members of various ethnic groups and people with HIV/AIDS in general. Email us at firstname.lastname@example.org with your suggestions.
Back to the Project Inform Perspective April 1999 contents page.