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About Just out. (Portland, OR) 1983-2013 | View Entire Issue (Jan. 17, 1997)
12 ▼ Ja n u a ry 1 7 , 1 9 9 7 ▼ ju s t ou t REASONS FOR HOPE hoosing a physician may he the most important decision a person with HIV disease makes regarding treatment. A recent study showed that those who have doctors with many patients with HIV live twice as long as those who don’t. New treatments for HIV are being developed so fast, and management of the disease has become so specialized, that people with HIV need to find a competent doctor who can provide individual ized care. Many people prefer doctors and nurses who explain what is going on, and with whom they can be honest and feel comfortable. There is a lot of prejudice surrounding this disease, so it is critical that a medical provider be nonjudgmental. Talk ing to friends about the care they receive, what they think of their doctor, and comparing that to what you want in a doctor might be the best way to decide on a health care provider. A good provider is comfortable when a patient presents outside information regarding treatments. Ide ally, a medical team should listen, answer ques tions and have time for you. If you feel you are being rushed, important information may not be communicated. While a busy doctor is often a good one, waiting a month or more for an appoint ment may allow time for serious problems to arise. HIV is becoming a specialized field. Knowl edge about HIV is changing so fast that a doctor needs to keep up on the latest findings and under stand details about recently available drugs. Many treatments are still experimental, so a provider should know how to get these treatments, whether through clinical trails or compassionate-use pro grams. Across the country there are AIDS Educa tion and Training Centers set up to provide train ing to doctors in HIV treatment. You can encour age your provider to access this information. A good doctor does not try to do everything, and will often refer patients to specialists. Some times experts understand HIV well enough that they do not follow the prevailing wisdom in particular circumstances, and have good reasons fordoing so. Nevertheless, the following are eight points to look for that tell you your provider is well versed in HIV treatment. C W hat to Doctor, who? The fast-changing knowledge involved in HIV treatment makes it crucial to have a reliable health care provider ▼ by the Boston AIDS Writers Group O ther T hings L ook F or : V iral L oad The first three points to look for come from the new understanding that viral load tests are the therapy is doing within about four to six weeks of use can be used later in a combination more likely most important way to decide if your HIV is under starting a new therapy, your provider is a winner. to get viral load down to zero. Even the most control and if your medicine is working for you. A provider who is up on the latest understands powerful drugs, such as the protease inhibitor Viral load tests measure how much virus is float that, to be successful, combination therapy with a indinavir, have a limited success rate when used ing around in your bloodstream, and accurately protease inhibitor should lead to undetectable alone. Yet the very same drug when used together predict how much damage is being done to your amounts of virus after 12 to 16 weeks. with AZT and 3TC is successful at getting viral immune system. There are several tests available, load down, and keeping it down to undetectable Reason: You need to know right away if a which are more or less equal. levels, over 90 percent of the time. therapy works or needs to be changed. It is not I. After you test positive, if your health care only a waste of time, money and drugs tocontinue 5. If your provider refuses just to add a pro provider wants you to get viral load tests as well with a therapy that doesn’t work—it means you tease inhibitor to your current regimen, that clini as T-cell counts before any therapy, it’s a good are less likely to benefit from any of those drugs cian is generally correct. sign that your provider is up on the latest. Such a later. In particular, combinations that use a pro Reason: It is now understood that simply provider would use a test able to measure viral tease inhibitor may fail unless they get viral load adding one more drug to an already failed or loads as low as 500 copies per milliliter, or even down to undetectable levels. failing regimen is similar, although not identical lower. in effect, to using one drug at a time. It is now Reason: Viral load tests arc the best way to tell known that using one drug alone (called W hat to L ook F or : monotherapy) will not work for very long. if a therapy is needed. If you’ve never had a viral load test done before, the doctor may suggest 6. If your health care team discusses with you A ntiviral T herapy getting two done, several weeks apart, to make the likely success of a new therapy based upon sure that your starting point is correctly deter your entire medical history (including what The next three areas to check come from mined. understanding how drugs fail over time and how antivirals you have already taken), and considers 2. In general, if your doctor says it is time to to avoid this. This is important, because there is how the recommended regimen might limit fu begin anti viral therapy when you have a high viral ture treatment options, you can feel comfortable no point to taking complicated and expensive load, or low or rapidly declining T-cell levels, you about your care. therapies in a way likely to lead to failure. should keep him or her. 4. If your clinician tells you not to start any of Reason: Antiviral therapy should be individu Reason: Viral load and T-cell counts are the alized. If you’ve failed some drugs in the past, it the antiviral drugs presently available alone, as a best predictors of how quickly the disease will single drug therapy, that’s a good sign. is less likely that combinations including them progress. For people with few or falling T cells or will be effective now. Ignoring your medical Reason: Over time, every drug studied thus far a high viral load, waiting to begin treatment could history and just mechanically prescribí ng a therapy leads to viral mutations that ignore it—that be be a mistake. come “resistant” to the therapy. This means that is not a good idea. A good provider will pick 3. If your provider uses viral load tests and any drug used alone may quickly become useless, therapies that are most likely to get your viral load other blood work to see how a change in your and will make it very unlikely that the drug you down to undetectable levels based on an under f standing of what combinations will work given your antiviral history. That provider will also look at your medical history to be sure that you are going to do well with a therapy, as some people have conditions which make it less likely that they will succeed on a particular drug. This means that a physician often has different patients taking different therapies. i l I to L ook F or Given the new therapies for HIV disease, it is now crucial that people take their medications on time. It is also important to have backup plans on what to do if, for some reason, the first therapy picked doesn’t work out. 7. If your T-cell count remains below 200 for some time, and your doctor tells you to start taking drugs to prevent opportunistic infections (or Ols), thank that provider. She or he may have you stay on these prevention drugs even if a new antiviral treatment sends your T-cell count back up, and may add more prevention drugs should your T cells continue to fall. Reason: A T cell’s job is to help protect the body from a particular disease, anything from flu to pneumonia to cancer. As one’s T-cell count goes down, the cells trained to fight certain dis eases may disappear. It’s a lot easier to take Bactrim or another preventative drug to stop PCP (Pneumocystis carinii pneumonia) before you get it, than it is to treat it afterwards. A doctor may want a patient whose T-cell count goes back over 200 to stay on these drugs because a significant increase in T cells is not a guarantee of a strength ened immune system. 8. If your provider discusses with you the most common side effects and drug interactions that you might get from a treatment, what the real chances of getting them are, and what to do if you start having them, he or she is doing a good job. Should the doctor have a backup therapy plan that is ready to go if the side effects cannot be success fully dealt with, thanks are in order. Reason: The most common reasons for a person’s lack of success with the new combina tion therapies are the inabi lity to endure the drugs’ side effects and the failure to take them regularly. The new therapies don’t work unless they are used properly. A good doctor will warn a person about possible side effects and has a plan on how to reduce them, and a backup plan for a quick change of therapy if this does not work. Side effects are not to be taken lightly, as some of them can last a lifetime. A good provider is also aware of the risks and effects of mixing drugs. I n C onclusion The good news is now that we have so many therapies that work, a person with HIV has real options. The days of going on AZT and waiting to get sick are over. The bad news is that given the explosion in the understanding of HIV manage ment many providers cannot keep up unless they have a practice with many HIV-infected people. It makes more sense than ever to pick a health care provider who is keeping up with the latest treat ments, because finally there are treatments that actually help. The eight points above may help you decide on a physician, but remember that they are not absolute. If your provider seems to be doing some things differently from what is sug gested here, find out why. There may be a very good reason. (Psst...and if you have a good doc tor, pass the word!) The Boston AIDS Writers Group consists o f Robert Folan and Lou Pesce o f ACT UP- Boston; David Scondras, Robert Krebs, Derek Libby and Larry Bresslour from Search fo r a Cure; and Jeff Terry. For more information contact Search fo r a Cure, 58 Burbank St., Boston, MA 02115; phdne (617) 536-2474; or fax (617) 266-0051. Send e-mail to cslp @ search-cure, org ' » » - 1 1 1 * I 1