A Rose by Any Other Name ...
Antiretroviral chemotherapy. It's a term we rarely see in print, either in our community newsletters or in the mass media. Nor do we use the term very often in conversation. When we talk with health care providers, researchers and each other, we say combination therapy or triple combinations or anti-viral therapy.
Yet antiretroviral chemotherapy most accurately describes the treatment regimens that so many people with HIV are now living with or contemplating. Never in the history of medicine have so many people been expected to adhere to such an onerous course of medical treatment without question. There is little data to support its long-term effectiveness. And the long-term side-effects of antiretroviral chemotherapy are becoming clearer: fat redistribution from the face, arms and legs to the abdomen, breasts and/or upper back (sometimes called lipodystrophy); sugar levels which can lead to diabetes; and abnormally high cholesterol and triglycerides, which are associated with an increased risk of heart disease.
We have no idea when is the best time to begin treatment or the best combinations to use. And as of now, at least, the treatment is expected to be lifelong. Yet even within our own communities, there is little acknowledgement of the enormous complexities involved in personal treatment decisions. In only a few short years, we've moved from critical analysis of research data and respectful support for each individual's treatment decisions to a headlong dive into developing adherence strategies.
Okay, the pill-taking schedules are difficult. Sure, they affect every aspect of your life, from meals, to sleep and work schedules, to issues of disclosure. And yes, all those pills are tough to get down -- but just try a little applesauce. As for the side effects. Well, we do acknowledge that some of them are life threatening. And, yes, all of them affect quality-of-life. We all understand that constant diarrhea is unpleasant, for example. But just throw in a little Imodium. What we rarely acknowledge is that antiretroviral chemotherapy is not necessarily the best choice for everyone living with HIV. And it's never an easy choice.
Many of us have watched someone we love with cancer decide whether or not to go through chemotherapy and/or radiation. It's a tough, nearly impossible, decision. Depending on the type and stage of the cancer, the chances of going into remission vary widely. Hair loss, nausea, projectile vomiting and debilitating fatigue are usually part of the package.
We all acknowledge that. When someone makes the decision to go ahead with chemotherapy, we accompany them to their appointments, sit at their bedsides while they recover, and work things out with friends and family to insure that as much support as possible is provided.
When someone decides against the course of treatment, we usually, hopefully, honor the decision. It has taken decades to reach the point where the treatment choice of an individual with cancer is respected. Are we respecting the treatment choices of our HIV+ brothers and sisters?
Looking individually at each of the sixteen pharmaceutical products used to slow down HIV replication is pretty easy. There's data on each one, limited though most of it is. Each drug has particular side effects, some immediate, some temporary, and some long-term. Each drug is dosed to keep enough of it in your blood to do its job -- a specific number of pills, taken a certain number of hours apart, with or without food. Each drug interacts with other medications, methadone and street drugs in such a way that some things can't be taken together at all.
Either that or dosing adjustments need to be made. If taking only one of these sixteen drugs were useful, the decision-making process would be relatively straightforward. But, of course, taking only one of these sixteen drugs isn't useful at all.
"Strategize" was the catchword of HIV treatment discussions in 1998: Don't use up your options. Watch out for cross-resistance. Choose a regimen that you can stick to. Developing individual treatment strategies continues to be incredibly important, of course. But perhaps 1999 will be the year that we honor the emotional and intellectual complexities central to every individual treatment decision -- the decision not to start antiretroviral chemotherapy as well as the decision to begin or switch combinations
A holistic approach to HIV has always been an important part of PWA self-empowerment. Emphasizing antivirals to the exclusion of other treatment options, including the option to hold off on antiviral treatment, doesn't allow room for imaginative, individual decision-making. Alternative and complementary therapies, from antioxidants to immune modulators, are not being given the attention they deserve.
For people on antiretroviral chemotherapy, three-drug combinations may still be the norm, but four and five-drug combinations are increasingly prescribed. No adherence strategy will help if one of your medications interacts with another to decrease absorption levels. In addition to interactions with other antivirals, you need to be aware of interactions with prophylaxis medications, anti-depressants, antianxiety medications, TB medications, methadone and birth control. If 90% adherence is required for these drugs to be effective, as many researchers believe, how do side effects like vomiting and diarrhea affect your ability to keep enough drug in your system? We may be expecting the impossible of people on these regimens. And if we expect the impossible of each other, how can we help those who aren't immediately affected understand how truly complex HIV treatment is -- and how very far we have to go?
But the heroes of the epidemic are not the photogenic models hired by pharmaceutical companies to sell drugs in picturesque settings. Our heroes remain, as always, PWAs who get through each day, making personal treatment decisions that are right for them, wading through the simplistic, sometimes cruel messages of direct-to-consumer marketing, working with and educating their doctors and communities, and, in the process, expanding treatment options for everyone. Each of our heroes is an individual. There is no one-size-fits-all treatment regimen that will be equally right for any two people. As each individual struggles through each day and deliberates over each treatment decision -- whether that decision includes antiretroviral chemotherapy or not -- our heroes deserve honor, respect and continued support.
Back to the Notes from the Underground Spring 1999 Contents Page.
This article was provided by PWA Health Group. It is a part of the publication Notes From the Underground.