“Dying is easy, it’s living that scares me to death.” That bit of Annie Lennox lyric kept playing over and over in my mind last November. I had once again gone to war with an insurance company on behalf of myself and the other HIV positive employees of The Advocate, a national gay and lesbian newsmagazine. I won that battle by persuading our insurance carrier, Cigna, to obey the law. Luckily, I have sufficient strength, power and knowledge to do that. Not many patients do, however.

For the next eight years that I published The Advocate, I leapt to and from insurance companies as though jumping from one burning boat to another. For six of those eight years, I not only ran The Advocate but also dealt successfully with MAC, CMV, cryptosporidiosis, a wee bit of peripheral neuropathy and six bouts of Pneumocystis carinii pneumonia (PCP). I am still surfing, skiing, biking, living better than I have ever lived.

And I have had to fight insurance companies every step of the way. In the process I became an expert on the insurance industry and it is clear to me that the preferred-physician organizations (PPOs) and fee-for-service plans are dying on the vine, taking with them doctors in private practice. These are precisely the kind of doctors best at treating AIDS. We are headed for managed care and the services of health maintenance organizations (HMOs). This does not bode well for you and me.

HMOs are for healthy people. They are a disaster for people with HIV. Yet HMOs are at the core of President Clinton’s health care plan and any number of other plans floating around the halls of Congress. Health insurers and HMOs are continually seeking to circumvent state laws that govern access to health care and insurance. What would they do with national laws?

One HMO, Kaiser Permanente of Southern California, is notoriously lax at keeping track of patients and maintaining continuity of treatment. HIV specialists report that they only get referrals from Kaiser and other HMOs if the patient is of significant social stature and power. In short, the average person would not be referred; a federal judge would be -- and has been.

In my view, the bottom line is that Kaiser cannot meet the needs of people with HIV. There is no guarantee that the doctor you saw on Monday will be the doctor you see on Friday. AIDS requires consistent medical management with the same physician over time. More important, opportunistic infections must be caught and treated early, yet it can take a week or longer to see a doctor at Kaiser. And that doctor may not be familiar with you or your prescribed treatment regimen. You may not choose a doctor in the HMO and you may not see that doctor more than once. At Kaiser, as is the case with most HMOs, money is saved primarily by controlling the cost of treatment. Early detection methods so important to the lives of those with AIDS -- CT scans, MRIs, blood tests -- are discouraged in HMOs because of their expense. During a two- to three-year probationary period, doctors are taught that if they stay beneath their treatment budget they can earn a bonus of 3 to 4 percent of annual salary. Clearly, physicians are motivated against the test-intensive early intervention that extends lives. At this rate, health insurance will soon become little more than a new bait-and-switch scam.

Too many HMO doctors, officers, administrators and shareholders rationalize their actions by telling themselves that they really don’t see the harm in withholding treatment from people with AIDS because they are going to die anyway. I interviewed a young HIV positive patient of an HMO whose experience clearly illustrates this point.

The patient was experiencing fatigue, light-headedness and difficulty climbing stairs. After a week or effort to see his doctor -- or any doctor -- he was granted an audience with a physician, who ran a blood test and told him to await the results at home. After a week of waiting, he finally called his HMO and asked for the results of the blood test. He was told that the test revealed no abnormalities. At the urging of friends, he sought out an HIV specialist who ordered the same test to see if there was any reason to suspect anemia, a common cause of fatigue. Within minutes the patient learned that his hemoglobin count, which in healthy seronegative men is around 16, was at a low of four. The patient received a transfusion the next day. When the HMO was confronted with this glaring bit of malpractice, their response was typically chilling: “We sould expect to see anemia in an HIV patient.” They apparently would not expect to do anything about it, however.

We who are sick with AIDS cannot afford managed care, especially the type of managed care provided by HMOs. You could be the patient I interviewed. Or this patient could be a friend of yours. This could be anyone faced by a catastrophic illness. Currently, only the American Association of Retired Persons (AARP) and AIDS Action Council have weighed into the national debate over health care with a pressing demand to know how all of us with catastrophic disease will be covered. We have much in common with the AARP. Perhaps we ought to link ourselves arm-in-arm with them and make ourselves heard. The time to do this is now. Soon, too soon, it will be too late.