Physicians
Most people receive medical care for HIV infection from one or more kinds of physicians: primary care physicians, AIDS physicians, and specialists.
Primary Care Physicians
The medical management of HIV infection has not only become increasingly complicated but also changes with extraordinary frequency.
Most medical authorities, including the U.S. Public Health Service, conclude that HIV care should be managed by an expert, that is, a physician who has a specific interest in HIV infection, who attends the professional meetings, follows the HIV Web sites, and cares for many patients. The need for an expert to do HIV care is now well accepted in medicine, and most metropolitan areas have many HIV experts. In fact, most nonspecialists consider HIV care too complicated and will not provide it at all. So the challenge to the person with HIV infection is to find the right HIV physician in the right plan that provides the right services.Some primary care physicians in private practice work in groups of between three and ten. Physicians in such groups usually have different areas of expertise: some treat stomach problems, for example, and some treat lung problems. The person with HIV infection will usually see the same physician for general health care, but will see other physicians for specific problems. The advantage of group practice is that these physicians are all under the same roof, and communication between physicians with specializations is good.
AIDS Physicians
AIDS physicians are physicians who devote most of their time to caring for people with HIV infection. By strict definition of the word specialist, there is no such person as an “AIDS specialist”: rather, some physicians simply adopt the treatment of AIDS and HIV infection as a special interest, and are called, informally, AIDS physicians.
A little background on what makes a specialist:
Physicians practice in a variety of specialties, including family practice, pediatrics, internal medicine, surgery, and obstetrics and gynecology.
Becoming a physician requires graduating from medical school, doing postgraduate training as a resident, passing standard tests, and getting a license through the state licensing board. By law, a physician requires a license to practice medicine. The type of postgraduate training determines the specialty.Becoming a certified specialist requires certification by a professional specialty board within the American Board of Medical Specialties. Certification requires postgraduate training for a specified number of years in an approved training program, followed by passing an examination in the specialty called a board examination. To be certified as a cardiologist, for example, the physician must take three years of postgraduate training in internal medicine, then pass the board examinations to be certified as a specialist in internal medicine, then take three additional years of postgraduate training in cardiology, and then pass the board examinations in cardiology. Any physician can claim to be a cardiologist, but only those who satisfy these requirements can call themselves board-certified cardiologists.
There are no recognized accredited training programs for specializing in HIV infection and no board examinations to certify competence in treatment of HIV infection. This means there is no official medical specialty in HIV infection. In the absence of a certification process, however, many groups are now defining criteria for the HIV specialist based on experience and continuing education. The criterion of experience is usually based on the number of patients cared for: the usual requirement is that the physician cares for at least 25 to 50 patients with HIV. The criterion of continuing education means that the HIV specialist must have at least 5 to 10 hours of HIV-related postgraduate instruction each year. The group defining the criteria decides the actual numbers of patients and hours of education.
In this era of HAART, there is grand testimony about the need for experience in HIV care.
First, the medical issues have become incredibly complicated—so complicated that most physicians don’t feel competent to provide medical care. Second, medical care changes fast. In no other facet of medicine are new drugs, new treatment strategies, and new medical issues introduced with such speed. In fact, 60 medical journals (including one or two that are good) are now devoted to HIV infection, and five to ten major national or international HIV conferences take place each year. Third, and most important, the HIV care specialist makes a big difference. Research studies have shown that care by a physician with HIV experience means patients live longer, have lower costs, and require fewer and shorter hospitalizations. In short, although HIV infection is a specialty without official recognition by the usual accrediting group, a working definition of “specialist” based on experience is becoming generally accepted because it is so well justified.The official, accredited specialty that has provided most of the AIDS physicians is infectious diseases, which, like cardiology, is a subspecialty of internal medicine. Specialists in infectious diseases become AIDS physicians because HIV infection is an infectious disease, and because most of HIV infection’s complications are those commonly encountered during infectious disease training. Specialists in infectious diseases primarily treat about 40 to 50 percent of all people with HIV infection who are getting care in the United States.
Other medical specialties also supply AIDS physicians. Some specialists treat AIDS because of the nature of their specialties: oncology, pulmonary medicine, dermatology. Others, like gay physicians, treat AIDS for more personal reasons. Many AIDS physicians are primary care physicians who specialize in HIV infection.
AIDS physicians keep current with this fast-moving field by attending medical meetings dealing with HIV infection, by following the Web sites with HIV-related news, and by subscribing to the better medical journals devoted to HIV infection.
Their practices may be limited almost exclusively to people with HIV infection, and they are themselves often community leaders in the social, medical, and political issues related to HIV infection.Other Specialists
HIV infection directly or indirectly affects virtually every organ of the body, and no physician, regardless of training, can alone treat all the conditions associated with HIV infection. As a result, people with HIV infection, especially people with AIDS, are likely to be referred to such specialists as neurologists, psychiatrists, oncologists, gastroenterologists, ophthalmologists, dermatologists, and pulmonary specialists. Referrals to such specialists almost always come from the primary care physician or the AIDS physician. These physicians will select specialists based on the reputation of the specialist within the medical community, on their own previous interactions with the specialist, and on the specialist’s specific interest or expertise in AIDS.
Choosing a Physician
What is the best way for someone with HIV infection to go about selecting a physician? First, remember that this may be one of the most important decisions you will make. HIV care is now extremely complicated, so having a physician with substantial experience with the disease, the drugs, and the side effects is critical.
Begin by asking your primary care physician if he or she feels comfortable caring for a person with HIV infection. You may appropriately ask about his or her experience; since about 90 percent of HIV care in this country is provided by about 5 percent of physicians, the answers you will probably hear are “no” and “none.” If so, then ask for an appropriate referral: the medical community has an effective communication network, and your physician will either know or can easily find out who has a good reputation within the profession for the care of people with HIV infection. Group practices and managed care organizations or HMOs will often have one or more physicians who specialize in care of people with HIV infection.
Physicians are the best source of advice about other physicians.If you do not already have a primary care physician, another source of information is by word of mouth from other people with HIV infection, although some caution is called for here: watch out for people who confuse medical competence with a good bedside manner. What impresses patients and what impresses physicians are often quite different, and your highest priority is competent and comprehensive care.
Other sources are AIDS hotlines, community organizations devoted to AIDS, nurses, and the centers that run tests for antibodies to HIV. The yellow pages may have listings for physicians with a special interest in AIDS, but the relevant listings are more likely to be of physicians specializing in infectious diseases. You can then contact the infectious disease specialists directly and ask for either an appointment or a referral; they will know well the available local resources for treating HIV infection. City, county, and state medical societies often have lists of physicians with specialized interests; however, these lists may reflect those who have paid their dues and need the patients, rather than those who offer high-quality services. Also, if you are thinking of contacting a physician whom you know of only through an advertisement, be aware that physicians who advertise often do so because other physicians no longer refer patients to them.
In general, to choose a physician, ask another physician, check certification, be cautious about a physician who advertises medical services, ask about a physician’s reputation among his or her peers, and look for a physician who has privileges to admit patients to a good hospital. Hospitals review physicians carefully before allowing them the privilege of admitting patients, and hospitals of good quality will accept only reputable physicians.
Many people with HIV infection select an AIDS physician for conditions related to HIV infection, and continue to see their primary care physicians for all other conditions.
To repeat, the best physician to manage HIV infection is someone who specializes in the field; the field has simply become too complicated for the generalist. Research shows that doctors with extensive AIDS experience have patients who live longer, go to the hospital fewer times, and stay in the hospital for less time; these doctors also answer their patients’ questions better. If HIV expertise is not available, you need to find an AIDS physician and periodically consult with him or her or ask your own physician to consult with an AIDS physician by phone.Regardless of what kind of physician you see or where you live, if you have questions about your medical care, you can ask for a second opinion or get a consultation with another physician. That is, you can go to another physician or clinic that specializes in the treatment of AIDS and ask to have the program of your medical care reviewed. If you belong to a managed care organization or HMO, you may have to pay for this, but a second-party review is often worthwhile. The need for a second-party review will be driven to a large extent by your own perception of your care—that is, whether your viral load has lowered, whether the side effects of the drugs are being managed, and whether the treatment regimen is acceptable. To have the program reviewed thoroughly, you need to bring (or send) copies of all your hospital records and your physician’s office records. These records will most importantly include your treatment regimen, your viral load results, and your CD4 test results. Other information of interest includes the results of the CBC, the lipid test, X-rays, scans, biopsies, and any other tests, plus the diagnoses of HIV-related complications. Remember that these records are yours, and the office or hospital that has them is obliged to give them to you if you sign a request. These records not only simplify the consultation but also prevent unnecessary duplication of visits or tests.
You need not worry that you will offend your own physician by asking for such a consultation. In normal medical practice, second opinions are often encouraged and, for many procedures, are sometimes required. Moreover, given the seriousness of HIV infection and the speed with which recommendations for treatment change, second opinions are simply considered a very good idea.