What Matters
What matters most for HIV care in the HAART era is to have a physician who is skilled in this disease. In the early 1990s, HIV care was a “primary care disease”; that is, most of the care was done by generalists like family physicians and internists.
Medical science frankly had little to offer its patients, so HIV care was adopted as a condition that every doctor should be prepared to treat. In 1996 and 1997, HAART was introduced, and with it came some complex care issues, including a heavy menu of drugs, complex side effects, sophisticated laboratory monitoring, and resistance tests. HIV care was now complicated, the field moved rapidly, and new findings and new strategies for treatment made HIV care a specialty. In fact, it is now estimated that of the 600,000 physicians in the United States, only 3,000 care for 80 percent of the people with HIV infection. These specializing physicians go to the meetings, read the HIV medical journals, and talk to each other. In a sense, HIV care is a little like oncology: the disease is serious, and we have many tools, but their use requires skill and devotion. These are the characteristics that you want your care providers to have.You also want an insurance plan that covers most of the outpatient pharmacy costs. These costs have now become the largest component of the bill for HIV care—a bill that totals $10,000 to $15,000 per year for most people with HIV infection. The coverage of outpatient medications varies greatly, but it’s critical in HIV care. Many people are covered by Medicaid or the Ryan White Care Act Title II funds, though even these have income thresholds. To date, the somewhat fractured U.S. health care system has been generous to people with HIV infection through a number of these entitlement programs. But we are increasingly concerned that this generosity won’t be sustained, and in particular, that outpatient benefits might be in jeopardy. In any case, you need to address these coverage issues as early as possible, perhaps with the help of an HIV-savvy social worker.
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