HEALTH : New Fronts in the AIDS War : For Those at Risk, Attitudes Shift on a Once Dreaded Test
Tom Stoddard is a New York lawyer active in gay rights issues who, four years ago, was among the many who were politically opposed to being tested for AIDS infection. Today, he has a very different public position--and he is now engaged in a painful personal struggle over whether to take the test himself.
“It was an appropriate position at that time,” said Stoddard, executive director of Lambda Legal Defense and Education Fund, the nation’s largest gay rights organization. “But now the equation has changed. Now I believe most people at possible risk should take the test. But, frankly, I still can’t make the decision for myself.”
What is creating such anguish for Stoddard--and many others who are no longer comfortable in their decision not to be tested--is a series of recent medical advances that offer treatment possibilities for those infected by the human immunodeficiency virus (HIV).
‘Glimmer of Hope’
Medical experts emphasize that new drugs and other advances in AIDS care do not cure the disease, and scientific evidence of their effectiveness is far from complete. Still, many researchers privately are convinced they are valuable in staving off the most feared and life-threatening complications of the invariably fatal disease.
The new treatments refute a key component of early arguments against AIDS testing--that if people practiced low-risk behaviors there was no reason for them to take the test because there was nothing they could do if they tested positive.
“The medicine is definitely driving the change--there’s no question about it,” said Tim Sweeney, deputy director for policy of the Gay Men’s Health Crisis in New York. “What we have now is some glimmer of hope, and people want to act on that hope.”
There are still major obstacles to encouraging widespread use of the AIDS test, the most significant being a lack of comprehensive federal legislation to protect the ill and the infected from discrimination and to prevent disclosure of confidential test results.
Gay and civil rights leaders and others still recommend the test only be taken anonymously, and only if accompanied by comprehensive counseling.
Previously, proponents advocated the test in the hope that those who tested negative would be motivated to stay that way by practicing low-risk behaviors and that those who tested positive would take precautions against infecting others. But now, there are new compelling reasons to be tested, and, as a result, the practice of AIDS medicine is undergoing changes.
With the idea of preventing the progression of an infection to disease, many physicians, for example, now quietly prescribe AZT, or zidovudine, to infected individuals with a low count of T-4 helper cells--which indicates an impaired immune system and a vulnerability to deadly, opportunistic infections.
Although AZT has been approved for marketing in treatment of patients who have already suffered infections, continuing human studies have not proved that it works in heading off symptoms. But many researchers privately believe it does.
In another important advance, HIV-infected individuals with damaged immune systems--but no symptoms--are being urged to take aerosol pentamidine, which is believed to prevent pneumocystis carinii pneumonia, a debilitating respiratory infection and frequent killer of AIDS patients.
The Food and Drug Administration recently sanctioned the widespread distribution of aerosol pentamidine for this purpose, although the agency is months away from approving the drug for marketing.
With these drug treatments available, many at-risk individuals no longer necessarily view a positive AIDS test as an automatic death sentence--something they would rather not confront until symptoms make it no longer possible to deny the inevitable.
As a result, many of them have decided to take the test, banking on the possibility that some of the drugs might keep them alive until science discovers a cure--or, more realistically, a more conclusive way to control the disease, much as diabetes and hypertension are controlled today.
“Five years ago, there was nothing you could do with the information you had. Today, I feel that has changed,” said Albert Ruiz, a 37-year-old owner of a Los Angeles catering business who tested positive several months ago. “At least now they (doctors) have a better idea of when things are going to fall, and they can do something about it.”
But others at risk continue to agonize, recognizing that what they are facing is their own long-held denial that the dread disease could strike them.
“I think a lot of people were in the midst of denial,” said Dr. Scott Harris, medical director of Fenway Community Health Center in Boston. “It was easy to say, ‘There’s nothing we can do anyway,’ when, for many, the bottom line was, ‘We don’t really want to know.’ ”
Another gay rights activist, who four years ago was among the many who took a tough political stand against the AIDS test, said he now has a very different public position--and he is engaged in a painful personal struggle over whether to take the test himself.
“It was much easier earlier to say that I wouldn’t be tested,” he said. “Intellectually, being tested makes sense. But I still don’t know if I’m prepared to deal with the emotional consequences of a positive test result. It was much easier when there was no real evidence that the scientific community felt there was some kind of early intervention. If the early intervention were a cure, it would be very easy to overcome the emotional issues.”
He paused. “I think it’s something that we each revisit constantly,” he said. “It’s always in the back of my mind--and I either decide I can’t deal with it now, or I anguish. For now, I don’t want to know. But the moment may come sooner or later where that balance shifts.”
Stoddard, who is grappling with the same dilemma, has similar feelings.
‘I’m Still Nervous’
“The news about aerosol pentamidine has pushed me increasingly to the conclusion that I must know whether I’m infected, but I’m still nervous,” he said. “AIDS may no longer be an automatic death sentence, but a positive result would still be like looking into the face of the Gorgon.”
The public face of activists and their organizations shows none of this indecision or anxiety. Many have altered their policies based on the new medicine, and they are nearly unanimous in recommending that those at risk take the test--provided that counseling is available and confidentiality is protected.
“Three or four years ago, most gay leaders urged against the test,” Stoddard said. “That is no longer so.”
Dave Johnson, executive director of Being Alive, a coalition of people with AIDS in Los Angeles, said: “We are recommending testing, not only because there are things you can do medically, but because there is considerable evidence that these interventions are more effective if you start them before you have symptoms.
“People need to confront the fact that they have this virus and begin fighting back against it. Testing is the gateway to that. We think people will be able to handle the results once they’re told there is something they can do about it.”
Impact on Health Care
The increasing number of people who choose to be tested because of the medical advances is expected to raise important new public policy implications for access to health care.
The Medicaid program (called MediCal in California) provides coverage only for impoverished individuals who are 65 or older, have dependent children or are disabled. Thus, an AIDS-infected woman with dependent children who met the poverty definition would be eligible. But a poor, AIDS-infected gay male without AIDS symptoms would not, unless he had dependent children or was 65 or older.
Those who already have developed AIDS symptoms are considered disabled--and eligible for Medicaid if they are poor enough. But in a classic Catch-22, Medicaid does not pay for aerosol pentamidine, designed to prevent symptoms, and, thus, disability, until after a person is disabled.
Further, because aerosol pentamidine is still considered an experimental drug, it is not always covered by private insurance. A year’s supply of the drug would cost a patient more than $2,000.
“Our current programs just aren’t set up to deal with this,” said Rep. Henry A. Waxman (D-Los Angeles), chairman of the House Energy and Commerce subcommittee on health. “Because Medicaid will only pay for people who are already disabled, we miss the opportunity to stop that disability from happening. The effect is backwards. It’s as if we only paid for iron lungs and not for polio shots. We can save money and lives, and we should.”
Nevertheless, federal health officials and others in the public health community are encouraged that more people are being tested and believe that these changes in attitude could have long-hoped-for impact on the course of the epidemic.
“We certainly believe it should make a difference,” said Dr. Gary Noble, who is in charge of AIDS programs for the federal Centers for Disease Control.
CDC officials themselves, having once defined AIDS by its symptoms, are now deliberately talking about the infection that causes the symptoms. Their point is to emphasize the new benefits that may now stem from early detection.
In a memo last fall to CDC colleagues, Dr. James O. Mason, the agency director and President Bush’s choice as assistant secretary for health, reminded them that such a change “focuses attention on the benefits to the person and places testing in the context of counseling and medical care.”
Further, he wrote, as more drugs become available that can help infected individuals without symptoms, then “early diagnosis will become even more important.”