People with HIV infection report that among their biggest worries are the problems of financing medical care. Unfortunately, many of their worries are justified. Although the average medical bill for the care of HIV infection is no greater than the average bill for most other serious medical conditions, people with HIV infection should be prepared for expensive medical care.

The average cost of medical care for HIV infection over a lifetime, in 1990 dollars, varies in different reports from $62,000 to $94,000. Most of the costs are incurred after the first

AIDS-defining diagnosis. The greatest part of this cost is for hospitalization—from $55,000 to $70,000—though expanded use of alternatives to hospital care has lowered that cost. Outpatient services average about $12,000 altogether. The cost of drugs is hard to estimate: drugs are much more expensive when first released than they are later, and new drugs are being released rapidly.

The mechanisms for financing medical care in the United States are phenomenally complicated and full of jargon. People finance their medical care either by themselves (called self-pay), or through private insurance, or through publicly funded state and federal programs. Private insurance and public programs are together called third-party payers. Most people finance their care through a combination of self-pay and third-party payers.

Private third-party payers include commercial insurance companies, Health Maintenance Organizations (HMOs), and the nonprofit conglomerate that is Blue Cross/Blue Shield. The main public third-party payers include Medicare, Medicaid, and the Veterans Administration. Medicare accounts for 17 percent of the financing for all health care in the United States; Medicaid for 10 percent; other government agencies for 14 percent; private insurance for 31 percent; self-pay for 25 percent; and private sponsors for 3 percent. An estimated 35 million Americans are uninsured.

Several aspects of financing medical care are unique to HIV infection:

1.  People with HIV infection make up a disproportionately large number of those who receive Medicaid. By 1990, many large cities had reported that 40 percent of all persons with AIDS were receiving Medicaid; this percentage is increasing.

2.  Most third-party payers will not reimburse the full range of services commonly required for people with HIV infection; services that are reimbursed insufficiently or not reimbursed at all include home care, long-term care facilities, and prescription drugs.

3. Private third-party payers have many ways—some of them devious—of avoiding reimbursement of the costs of medical care for HIV infection. They do this despite the fact that the average lifetime cost of the care of a person with HIV infection is no different than the cost of care of people with most other serious conditions.

4.   Many physicians are reluctant to care for people with HIV infection because the medical care is unusually complex and because reimbursement for professional services is unusually poor due to the disproportionate number who are uninsured or recipients of Medicaid.

5.  Public funds, both from the states and from the federal government, are increasingly available to people with HIV infection. However, eligibility for many of the special programs often requires a diagnosis of AIDS.

The following sections go into what may strike you as tiresome detail about financing medical care. But the more you know about what is standard or required or forbidden, the better you will be able to control your options for financing care.

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Families can provide a unique kind of support, some of the closest relationships people ever have. For some people, this closeness seems to make them feel as though they and their families are arms and legs of the same body. The exact kind of support families provide is not always concrete, and sometimes it is a little mysterious. Helen’s face shines when she talks about her family: “Sometimes when I feel pretty much alone and discouraged, my family overpowers me. They just overpower me.”

One of the most important things that members of the family do is bring with them a sense of a shared past. Families reminisce, talk about good times, retell old stories. Steven’s family reminds him of the time he fell out of the tree onto the picnic table and got his mother’s potato salad all over him. With such stories about the past comes a sense of being part of both the past and the future, a sense of who you are and what your roots are, a sense of continuity. Feeling a part of something larger is a deep comfort to people affected by HIV infection. Perhaps that is what Helen means when she says her family just “overpowers” her.

Families also make people feel cared about. When Steven was sick, his mother flew in from another city to cook for him. “Nothing is like home cooking,” he said. “I call her up and say, ‘Hop on a plane, Ma, and come cook for me.’ ” Dean’s mother brought in meals, sat on his bed, and played cards with him. “All my out-of-town relatives have come to visit,” he said. “It makes me feel good, what my family does to me.” June said her relatives drive a long way to see her son: “Those that can’t come write letters saying the right things. My son knows he is accepted and loved in his family.” Feeling cared about is not only a comfort; it can also be a reason to stay alive. Dean said that without his family, he wouldn’t be here: “I would have nothing to fight for. They care about me, and because of that, it’s important that I care too.”

People affected by HIV infection seem to feel most free with their brothers and sisters. They often find it easier to tell their brothers and sisters about the diagnosis in the first place. They feel their brothers and sisters understand them and accept them as they are. “I’ve been able to talk and let loose my feelings with my sister,” Dean said. June noticed that her son seemed most comfortable talking to his brother. “My son can talk to his brother especially,” she said, “and his brother brings over his children.” Helen’s stepmother did the same thing: “My stepmother brought her little kids to visit me when I was in the hospital. I told her not to, there are germs here. But she just said, ‘You’re sick. We’re coming.’ “

In fact, many relatives, especially brothers and sisters, make a point of bringing their children to visit. Offering your children seems to be a way of offering part of yourself. And children can be so cheerful and straightforward, they are an immediate comfort. Alan said that his nephew gives him something to fight for: “I want to be here for his graduation,” he says. “And seeing him with his baby sister, it’s been worth every minute of the fight.”

Not everyone people consider family is a blood relative. People who are distant from their families make substitute families out of their friends. They celebrate holidays and birthdays together, give each other presents, stay in touch, travel together, help each other out. Steven has an old teacher who took him into her family, introduced him to her friends, and takes him on trips and out to dinner: “She’s extended family to me,” he said. A friend of Alan’s has a mother who, Alan said, “is like another mother to me.” Family also needn’t be exclusively human; many people find comfort in their pets. “My cat meets me at the door every night,” said Alan. “One night, he didn’t, and I missed him. I realized how much I appreciated that he usually did.”

In some families, the same closeness makes them expect more of each other than they would of other people: they feel that members of their family should not be gay or use drugs, should not be depressed or even be sick. Such expectations are difficult and often impossible to meet, and both sides feel disappointed and frustrated. For some people, then, the family is unable to provide much help. “My husband’s family couldn’t deal with his being sick,” Lisa said. “For a long time, they wouldn’t call, wouldn’t send money, wouldn’t come to visit. When they finally did come, they talked only about routine things.” Notice, however, that Lisa’s in-laws did come to visit, and did provide what small comfort they could by talking about routine things. Though Lisa wished they could have done more, both for her and for her husband, she recognized they had been a help. “All the same,” she said, “it helped him just to hear from them.”

Probably, even if your family cannot provide as much support and comfort as you would like, they nevertheless wish they could. They probably feel they should be able to make all your problems go away, and they feel guilty and helpless when they cannot. Perhaps the best thing to do is what Lisa finally did: accept what they are able to offer, and find the comfort in it.

Families are also prime sources of well-meant and unasked-for advice. Such advice can be hard to listen to, especially because the adviser rarely has experience with the kinds of problems HIV infection presents. As a result, the advice can sound annoying or distrustful or

condescending or just wrong. The same principle that applies to disappointed expectations also applies to unwanted advice: ignore it, or explain you’ll have to agree to disagree, and find comfort in the adviser’s good intentions and concern. Dean said his rule with his family is, “No criticisms, no advice.”

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