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TRACKING HIV
June 29, 1998
The NewsHour with Jim Lehrer Transcript
At the World AIDS Conference in Geneva this week there was good news about advances in treatment, but it was tempered by reports the epidemic is out of control in many parts of the world. In the United States health officials continue to search for ways to limit the spread of the disease.
ROD MINOTT: Jeff DeLore spends a lot of time at health care forums like this one in Seattle educating gay men about ways to combat the spread of HIV, the virus that causes AIDS.JEFF DeLORE, NW AIDS Foundation: I think the first step is prevention, letting people know safety issues, what's important, how they can keep themselves safe, how they can keep their partner safe.
ROD MINOTT: As a result, DeLore and others at this gathering were outraged over a move they say will ruin their efforts at fighting HIV, the proposed state law, which would require reporting names of HIV patients to public health departments.
JEFF DeLORE: Yes. I'm scared of that. With names reporting, people would stop getting tested as often as they should and so then people won't get help as often.
MAN ON PHONE: HIV-information.
ROD MINOTT: The state's board of health is considering adding HIV to a list of 54 other communicable diseases, such as syphilis and tuberculosis, that health care providers must report to local public health department. Health officials want that information so they can follow up with medical care and support for patients, as well as prevent spread of disease to others.
MAN ON PHONE: Are you concerned about getting infected with HIV?
ROD MINOTT: Few experts doubt the value of tracking the HIV epidemic but disagreement remains fierce over how it should be done and how the information will be used.
SPOKESMAN: And how can you justify trampling on people's privacy for false promises?
ROD MINOTT: The prospect of reporting those infected with HIV has led to an angry split between the AIDS community and public health authorities. At a series of hearings held late last year participants argued two key options under consideration. One would mandate reporting actual names to local public health departments. Another would use special codes known as unique identifiers that do not include names. Many at the hearings testified against name reporting.
MAN AT HEARING: I know that the people at the health department will make and are genuine when they say that every effort will be made to keep your confidentiality, but there's always ways to fight codes and open up computers and have somebody go crazy and try to use that.
ROD MINOTT: Health experts believe HIV reporting is critical now that new anti-viral drug therapies enable many people to stay healthy longer. Research suggests more lives can be saved if these drugs are given soon after HIV-infection. Dr. King Holmes of the University of Washington is an expert on sexually transmitted disease.
DR. KING HOLMES, Sexually Transmitted Disease Expert: You're not going to win a war on an enemy if you don't know where that enemy is, whether it's advancing, whether it's retreating, where it's moving. And we knew that until three years ago from AIDS name reporting, but when the effective drugs stopped AIDS from developing in many people taking them, we no longer were able to monitor the epidemic.
ROD MINOTT: Alonzo Plough heads the Seattle/King County Department of Public Health.
ALONZO PLOUGH, Director, Seattle/King County Public Health: And I think with the changes in the disease, the fact that there are now anti-viral drugs that are able to keep people in the status of infected with the virus but not having the disease for very long intervals, in order for us to track the impact of HIV on our population and understand prevention trends and understand how to get resources and how to, you know, use that information to save lives, we believe that named-HIV-named reporting needs to join the fold of all the other 54 diseases.
ROD MINOTT: Health figures show that while AIDS deaths have dropped as much as 44 percent in recent years, cases of HIV continue to rise across the nation. New HIV infections now total about 40,000 cases annually. Twenty-eight states already mandate name reporting of HIV adult patients, but those states, mostly in the South, Midwest, and Southwest, represent a minority of the total AIDS cases in the US, about 33 percent.
DOCTOR: (talking to patient) There is a tiny bit of a white film on your tongue, which may be a little bit of thrush. It's not bothering you-
ROD MINOTT: Other physicians, who treat HIV patients, like Dr. Tom Heller of Seattle, support reporting but believe that using names would do more harm than good.
DR. TOM HELLER, Seattle Physician: It would put a lot of distrust on the part of patients and put me in a very compromising position to be forced to do that, to be forced to report names. I think lots of people wouldn't show up for testing. My fear would be that people would delay being diagnosed and, therefore, lose out on a lot of opportunity to treat the disease earlier. Most of the progress that has been made in HIV survival, in HIV care, has come about because of early treatment.
ROD MINOTT: One patient examined by Dr. Heller, who did not want to be identified, said he feared disclosing his own HIV status.
PATIENT: And so that everybody can find out with a push of a button and the government knows and Big Brother, you know, that sort of thing. I'm not too keen on that idea, and if I want to tell them, that's my right because it's my body. I mean, it's what's going on inside of me, and if I want to tell somebody, it should be up to me.
ROD MINOTT: Public health officials insist that patient confidentiality can be protected. They point out that even if name reporting is adopted, many clinics would still offer anonymous HIV testing. This man agreed to be taped getting a test as long as his identity was not disclosed.
WOMAN: One of the things that you have done to protect your confidentiality at this particular testing site is you opted to test anonymously, so that anonymous code is in place, and that's how your file is secured.
ROD MINOTT: Health officials also point out that for years Washington State has required reporting of AIDS patients by name and that there have never been any breaches of privacy.
ALONZO PLOUGH: There are strict laws, state and federal laws, that restrict the data to physicians and a very few health department epidemiologists, who are dealing directly with disease investigations, reporting and monitoring, and those data are kept in a separate computer and are not linked in, in any other way, with any other department's data, and are not able to be gotten through Freedom of Information requests and are not reported or available to elected officials or anyone in the general population.
ROD MINOTT: Even so, Judith Billings, who sits on the President's National Advisory Commission on AIDS, says fear of privacy breaches has more to do with politics than public health policy. Billings, herself, was diagnosed with AIDS two years ago.
JUDITH BILLINGS, National Advisory Commission on AIDS: What people are most afraid of is not the careful way that public health keeps track of the names, but some of the things they've seen in other states and in legislatures and in congress, where there have been attempts to get lists of people who are HIV positive for checking if someone is allowing a person to say, well, this is a doc or a doctor, someone who has HIV, should they really be practicing, so it's more a fear of political policy than it is what would happen with public health records.
ROD MINOTT: As the debate continues over mandatory HIV surveillance, the CDC is moving ahead with publishing its own guidelines on how states should conduct reporting. A final decision by Washington State is expected later this year.
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