Source: San Jose Mercury News Pubdate: Thu, 18 Sep 1997 Contact: Tracking down the AIDS epidemic THE good news is great: AIDS deaths declined by 26 percent from 1995 to 1996, thanks to new drug therapies that are keeping HIVinfected people healthier longer, and making them less infectious. There is real hope that AIDS could become a manageable disease, like diabetes, not a death sentence. The bad news is dismal: AIDS cases are rising rapidly in women, especially young, poor women who've had sex with men who've shared needles. The new realities of AIDS require new strategies. Two approaches are widely supported. The third is controversial, but gaining ground. Needle exchanges reduce the spread of infection, addressing the primary risk to women and babies. They do not increase drug use. The scientific evidence is overwhelming. However, the Clinton administration lacks the political courage to fund needle exchange, and the House just voted to block Health and Human Services from ending the federal funding ban. This policy is immoral. The administration is willing to expand Medicaid coverage to lowincome people diagnosed with HIV, as a statelevel experiment. Currently, they're not eligible till they're disabled by AIDS. The new drugs can prevent some infected people from progressing to AIDS if they're treated early enough. While the drugs are expensive, they can keep people out of the hospital, get them back to work and may prevent new infections by lowering the level of HIV in the blood. California has been using other federal funding and state money to provide early treatment. Gov. Wilson should sign SB 1035, which directs the state to seek Medicaid funds for HIV coverage. The third approach is the tricky one, but I think it makes sense. In an editorial in the Sept. 11 New England Journal of Medicine, deputy editor Robert Steinbrook advocated national reporting of HIV cases. Currently, new HIV cases must be reported to the health department in most states, under various rules, but not in California or New York, which have the most cases. AIDS cases must be reported to the federal Centers for Disease Control, but that's an increasingly ineffective way to understand the epidemic, as drugs slow, or stop, the progression to AIDS. Steinbrook also proposed improving access to the new medications and to experienced physicians, and guaranteeing strict confidentiality and protection from discrimination. He suggested using public health departments to notify sexual or needlesharing partners of their need for testing, so they can obtain early treatment, which is more effective. In the June Atlantic Monthly, Chandler Burr, a gay genetics researcher, argued that the AIDS epidemic should be treated like other infectious diseases: Ask the infected for the names of people they might have infected, find the expartners, and persuade them to be tested. The common AIDS alternative asking infected people to please tell their expartners and hoping they do is much less effective than using public health investigators, according to Burr. As many as 900,000 Americans are infected with the AIDS virus, estimates the federal Centers for Disease Control. Half don't know it. ``Many women find out after the birth of a child who tests positive or after they develop AIDS symptoms,'' says Wayne Sauseda, director of the state's Office on AIDS. In the epidemic's early days, most people with AIDS were promiscuous gay men. Tracing past sexual partners was impossible. There was no treatment to offer, no ``safe sex'' advice that wasn't applicable to everyone else. There was no protection from discrimination: Gay men feared they'd lose their jobs, their insurance and perhaps their liberty if they appeared on a list of the infected. Much has changed, but fear is still a factor. Health officials say there must be an anonymous testing option, to avoid scaring people away. They also question whether it's necessary to report HIV by name, rather than by case. ``I don't need to know the names of infected people,'' says Sauseda. ``I need to know the names of their sexual or needlesharing partners.'' Reporting by name would make it easier to make sure people who test positive get treatment, says Martin Fenstersheib, Santa Clara County's health director. But he's not sure it's worth the risk of deterring people from getting tested. Immediate treatment is critical, Fenstersheib says. Once in care, it's much easier to gain the trust that leads to successful partner notification. ``Adversarial never works.'' The Legislature recently voted to give county health departments an extra $500,000 to fund more active partner notification. The California Conference of Local Health Officials and the California Medical Association are working on proposals for requiring HIV reporting. There's no consensus on the name issue. I lean toward the view that reporting cases and demographic data is essential, but someone who prefers to be listed as ``Newt66'' should be allowed to do so. Some AIDS advocacy groups are willing to consider national HIV reporting to improve tracking of the epidemic, if it counts coded cases, not patients' names. ``There are profound changes that mean we need to examine the question,'' says Daniel Zingale, executive director of AIDS Action in Washington, D.C. AIDS was identified 19 years ago. We knew nothing about how it spread or why or what to do about it. Now we need to act on what we know: Prevent new infections by providing clean needles, and providing protease inhibitors that lower viral levels. Guarantee immediate care with effective medications, so atrisk people will have an incentive to seek testing. Find partners who may not know they're at risk, and get them tested and treated. Track the real epidemic HIV infection not just the final stage, AIDS. No one strategy is a cure. There is no cure. But there is hope. Joanne Jacobs is a member of the San Jose Mercury News editorial board. Her column appears on Mondays and Thursdays. You may reach her at 750 Ridder Park Dr., San Jose, CA 95190, by fax at 4082713792, or email . Published Thursday, September 18, 1997, in the San Jose Mercury News