New AIDS Definition to Increase Tally

As many as 40,000 Americans who are HIV-positive will wake up on New Year’s Day with a diagnosis of AIDS, the consequence of a new and more inclusive official definition that is likely to place a strain on already strapped social service agencies and add to the emotional trauma of many who are infected.

The broader definition, drafted by the U.S. Centers for Disease Control and Prevention after a year of debate, is intended to give public health officials a truer picture of the scope of the disease by adding three diseases often found in women and intravenous drug users, who have been undercounted in the past. The diseases are cervical cancer, pulmonary tuberculosis and recurrent pneumonia. Though including these three diseases is expected to push caseload counts higher, the real boost in numbers will come from the addition of a fourth indicator: a dip in the level of the immune cells that are the main target of HIV.

“The current definition was falling out of step with the times,” said Dr. John Ward, acting chief of the AIDS Surveillance Branch of the CDC. “This will help us more completely represent the HIV epidemic.”

The CDC predicts that the new policy will increase the nation’s roster of new AIDS patients by about 75% in 1993, with 90,000 people newly diagnosed as compared to an average of 50,000 in previous years. In some cities, authorities are estimating that the AIDS population will more than double; San Francisco officials say their AIDS caseload will jump from 3,600 to 8,800.

As counts bulge, there will be a host of ripple effects:

* More cities will be competing for funds under the federal Ryan White Care Act, which distributes money according to the number of AIDS cases in each jurisdiction.

* Activists will use the bigger numbers to clamor for additional funding, arguing that the crisis is more acute than previously believed.

* Community agencies expect to be swamped with requests for help from those whose medical status changes.

* Legal advisers say that as more people are diagnosed as having AIDS, more will face discrimination by their employers and by health insurance providers.

* Counselors warn that the sudden switch in diagnosis may cause psychological trauma for patients.

“This will overwhelmingly increase our workload, particularly in the emotional support area,” said Eric Rofes, executive director of the San Francisco-based Shanti Project, which plans to cope with the crush by adding several hundred people to its 1,000-member corps of volunteer counselors. “The stigma of AIDS and what it means will be very hard for some people who are newly diagnosed to shake.”

One 38-year-old Santa Monica man said he intends to continue thinking of himself as being HIV-positive, even though under the new standards he will have AIDS.

“I don’t like it,” he said. “A big part of dealing with HIV is an attitude about resistance, resisting infection, resisting the progression of the disease. Everybody with HIV associates full-blown AIDS with death.”

The updated definition is a victory for AIDS activists, who have long argued that women and intravenous drug users--many of whom are minorities--have been ignored by official government statistics. But many say the expansion does not go far enough; at a news conference Wednesday in Los Angeles, representatives of the AIDS Healthcare Foundation and other local groups decried the new definition as inadequate and said it must be broadened further still.

Under the current definition, in use for the past five years, a person who is infected with the human immunodeficiency virus is diagnosed as having AIDS when he or she develops one of 23 indicator illnesses. Among the most common are cytomegalovirus, pneumocystis pneumonia and the skin cancer Kaposi’s sarcoma.

Although the government added the three new diseases to the new definition, it declined to include other ailments, such as recurrent yeast infections and pelvic inflammations, that are also common in these groups.

“This is a step in the right direction,” said David Eng, spokesman for the Gay Men’s Health Crisis, a New York-based advocacy group. “If you go by the official numbers, they haven’t been counting women all this time.”

Said Mary Lucey, a Los Angeles activist who has spent the past three years battling the government to change the definition: “This (the old definition) was their way of keeping the numbers artificially low for a long period of time. We have no idea how many women have died from AIDS but it says on the death certificate, ‘cervical cancer.’ Now at least our deaths will be counted. . . . Now they need to expand it some more.”

Under the expanded definition, an HIV-positive patient will be diagnosed as having AIDS if the number of CD4 cells--or T-cells--have slipped to 200 per cubic milliliter of blood, about one-fifth the level of a healthy person.

Use of the T-cell count as a marker of AIDS means that thousands of patients will be diagnosed much earlier in the course of the disease, and some will be classified as AIDS patients even though they do not exhibit any symptoms.

The Santa Monica man, for instance, has been taking the drug AZT since he learned he was HIV-positive six years ago, and also takes “a whole host of prophylactic drugs” to prevent opportunistic infections. His T-cell count has been below 200 for the length of his illness, he said, but he feels fine and is otherwise healthy.

“With their new definition, I’ve had AIDS these past six years,” he said. “Given my state of health, I don’t think it makes any sense to say that I have AIDS. People with AIDS have always been defined as those who are very ill. So this is very confusing.”

According to the CDC, the earlier diagnoses may help patients by prompting them to seek treatment sooner.

But many AIDS activists fear the use of the T-cell count could compromise patient confidentiality, particularly if states decide to require that the laboratories conducting the tests report the results to the government.

Although many states mandate that HIV test results remain confidential, similar protection is not extended to T-cell tests, according to Jeff Levi, director of government affairs for the AIDS Action Council in Washington. “We believe that a diagnosis is something that should be made by the physician directly, and that the lab report should go back to the physician,” Levi said.

Levi and other activists note that because AIDS patients will be identified earlier in the course of their illness, they stand to lose more if their privacy is breached.

“The sicker a person gets, the more plugged-in a person is to the social service network, the more confidentiality they lose,” said Paul Di Donato of the AIDS Legal Referral Panel in San Francisco. “You catch that person when they are asymptomatic, healthy and still working and still carrying private health insurance, and all of a sudden people find out about the T-cell count. . . .”

One thing the expanded definition will not affect is an AIDS patient’s eligibility for government disability and health benefits. Both the Social Security Administration and Medicare require that AIDS patients be “functionally disabled” to qualify for benefits. Activists have been pressing, with little success, for these agencies to adopt the new CDC definition as their criterion.

“The Social Security Administration has to come up to par,” said Roland Palencia, vice president of the AIDS Healthcare Foundation, at the group’s news conference Wednesday. “The right arm of the federal government is . . . wrestling with the left arm, and in the meantime people are dying,”

Moreover, AIDS counselors say the new definition has raised false hopes among some HIV-positive people who come to them looking for help in applying for benefits.

“We have people that have been chomping at the bit, for lack of a better word, waiting for the diagnosis because their expectations are that their lives will be a little easier to manage, that they will qualify for more services and more goods,” said Michael Lee, director of client services for the San Francisco AIDS Foundation. “We’re having to tell more people no, and we’re having to deal with that disappointment and hurt.”

BACKGROUND

The U.S Centers for Disease Control and Prevention, which monitors the AIDS epidemic, uses a so-called surveillance definition to determine when an HIV-positive person has developed full-blown AIDS. Under the current definition, a person who is infected with the human immunodeficiency virus is diagnosed as having AIDS when he or she develops one of 23 indicator illnesses. On New Year’s Day, the definition will be expanded to include three diseases common to HIV-infected women and intravenous drug users--cervical cancer, pulmonary tuberculosis and recurrent pneumonia. The expanded definition also includes a fourth new indicator: a drop in the level of CD4 immune cells, also called T-cells, to 200 per cubic milliliter of blood, about one-fifth the level of a healthy person.