It should not be news that seeing a doctor who specializes in HIV care is vital to achieving the greatest possible success in treatment. But here comes the rub: There is no national standard for credentialing HIV providers in the way that there is for, say, oncology. So how can you know if your doctor is equipped to provide you with expert care if there is no 'AIDS diploma' on her or his wall?
Luckily, HIV physicians are increasingly seeking out credentials on a voluntary basis. Additionally, in 2002 California began requiring all managed care organizations to provide referrals to HIV specialists. In 2001 the American Academy of HIV Medicine began a credentialing process that doctors in California and across the country have sought out to prove to health maintenance organizations'and to patients'that they are experts in the field. And of the more than 2,000 HIV specialists in the United States who care for 20 or more HIV patients, 1,400 took the 90-minute exam in its first year.
The AAHIVM defines an HIV specialist as a provider who, in addition to completing its exam,
' maintains a current and valid medical or osteopathic doctor, physician assistant, or nurse practitioner state licensure;
' has provided continuous, ongoing care to at least 20 HIV-positive patients in the past two years; and
' in the past two years has completed at least 30 hours of HIV-related continuing medical education.
Also note that if you live in a rural area that has no HIV specialists, your health care provider should comanage your treatment with a physician in another location who is an expert. But of course, just satisfying these requirements does not a great doctor make.
'If you take care of 500 [patients], does that mean you know everything that's going on?' asks R. Scott Hitt, MD, head of the AAHIVM. 'I'll tell you, the answer is no. You could ask any of the drug reps out there if they believe that somebody who takes care of over 200 patients is keeping up to date all the time, and they'll tell you clearly that, no, they're quite surprised. So if experience does not do it by itself, then the question is, How about education?'
According to Jos' Zuniga, president of the International Association of Physicians in AIDS Care, 'It's been our experience that physicians who are treating people with AIDS traditionally are looking [for HIV care] information from as many sources as possible. I think a very pointed question from the perspective of a patient to a physician'Where do you get your information?'would be helpful. Or, How often do you get this information?'
To help guide patients in a discussion with physicians about their knowledge on HIV care, we pulled together a few cutting-edge topics. Not only are they important issues to consider for possible treatment options, but a discussion with your doctor about them may give you an idea of how knowledgeable he or she is.
Interleukin-2: This naturally occurring immune system booster signals CD4 cells to both reproduce and fight pathogens. Since the dawning of AIDS, scientists have researched the substance as a possible arsenal against HIV. Food and Drug Administration approval for use in HIV treatment is probably several years off, pending two major phase III trials. But in the meantime, IL-2 is currently approved as a cancer therapy and is therefore potentially available for 'off-label' use. According to Donald I. Abrams, MD, a veteran HIV specialist at the University of California, San Francisco, numerous clinical trials have clearly shown that IL-2 boosts CD4 counts. But, he says, there is still not enough concrete evidence that the substance will in turn prevent the progression of HIV and promote survival, although he hopes the current clinical trials will finally prove this relationship.
Smallpox: In our post'9/11 world, the Bush administration is making waves about inoculating Americans against the smallpox virus, and health care workers have begun to step up to the plate. People with compromised immune systems may worry that they could be in greater danger in the event of such bioterrorism. But the Centers for Disease Control and Prevention recommends against inoculation for not only HIV patients but their household contacts as well. This is because a live virus is used to create immunity, and it can not only replicate unchecked in the immunocompromised but can also be passed from person to person. Paul Cimoch, MD, an HIV specialist at the Center for Special Immunology in Fountain Valley, Calif., says, 'If you weigh everything'the risks and benefits'I just don't think it's worthwhile for my patients to get inoculated.'
Atazanavir: Even if a new drug has not been approved for use by the FDA yet, it may be available from the drug manufacturer through an 'expanded access' or 'compassionate use' program. Your doctor needs to register with the drug company that offers the up-and-coming medication, so you may want to ask yours which pharmaceutical companies he or she is signed on to. One example of such a drug is atazanavir, a protease inhibitor that Bristol-Myers Squibb will provide through a compassionate use program for patients who are having trouble with the common antiretroviral side effects of high cholesterol and triglycerides. The twice-a-day drug, which has a favorable side effect profile, especially when it comes to lipodystrophy, should be on the market this summer.
Fuzeon: The big news in HIV care this spring was that the FDA approved for HIV treatment the much-anticipated Fuzeon, also known as T-20. The first 'fusion inhibitor' drug to hit the market, it helps block HIV from entering cells. Cimoch says the promise of using Fuzeon with tipranavir, a new protease inhibitor currently available by expanded access, shows great promise for the multidrug-resistant patient. 'It's really exciting, because [the combo] would give them two new drugs. Because, obviously, if the patient had one new drug, that could set them up for more resistance,' he says. Patients need to be aware that Fuzeon must be self-injected subcutaneously twice a day. Your doctor should be able to teach you how to do this properly and how to minimize the major side effect of skin nodules at the injection site.
Videx EC'Viread interaction: Hitt warns his patients to be careful when taking Viread with Videx EC. Viread can increase blood levels of Videx EC as much as 60%, leading to peripheral neuropathy and potentially fatal pancreatitis. To help minimize this interaction, Hitt has his patients take the two drugs on a full stomach (ordinarily, Videx EC is taken on an empty stomach). Other physicians also decrease the dose of Videx EC from the recommended 400 milligrams a day to 250. If you are on this combination, your doctor will need to monitor you carefully for adverse reactions.
Treatment breaks and drug resistance: Escaping drug toxicity or just saving money through structured treatment interruptions is no new thing. But a recent study should give patients pause about one method of taking a break from meds. At February's retrovirus conference the National Institutes of Health's Mark Dybul, MD, presented troubling data about taking antiretrovirals in cycles of eight weeks on and four weeks off. Enrollment in the NIH's 48-week study was halted when some patients began developing signs of newly emergent drug resistance. Dybul says that scientists may one day find a way to use this type of STI beneficially, but more research needs to be done. '[This study] just gives us a pretty big red flag that we need to be careful here. And we're certainly not ready for this stuff to be done in clinical practice.'
Grab-bag issues: Here are some obvious'but still vital'issues that a good doctor should be having ongoing conversations with his or her patients about:
' side effects: Are you working two steps ahead to minimize such reactions as lipodystrophy or high cholesterol?
' safer sex: We can all afford to keep talking about this one, positive or negative. Because let's face it, sometimes safety is not an easy hurdle to cross.
' clinical trials: Is your doctor in the loop about getting you into key studies of upcoming therapies?
' bedside manner: Perhaps the most important quality of a good doctor. Can he or she relate well to you and communicate effectively? The best HIV care happens when a patient and doctor are able to have free-flowing dialogue.
Just ask David Miller, an Atlanta resident, who says his physician 'has been a wealth of information, letting me barrage her with questions. And giving me faith that she would tell me about things I hadn't heard of that were still being figured out. She isn't just responding to my questions and pushing me out the door. Instead, she is making sure I have all the information I want.'