Should HIV cases be reported by name or by code number?
Dear Straight Dope:
What is the deal with "named reporting" vs. "unique number identifier reporting" of AIDS and HIV cases? In Illinois where I live public health officials are going to a new system where people with HIV will be identified by numerical codes rather than by name in order to ensure confidentiality. This seems like a perfectly obvious and logical approach. However, I was surprised to read in news reports that Illinois is in the minority on this and that 31 other states required named reporting. Doesn't this guarantee that AIDS and HIV will be under reported? Doesn't that mean that the AIDS problem might be much worse than anybody suspects?
SDSTaff Jill replies:
Hold on, friend. The issue is more complex than you think. Speaking as an HIV/AIDS epidemiologist for a state health department, I can tell you that UI (unique identifier) reporting is extremely problematic. In my opinion, not only will it not guarantee confidentiality, it will greatly impede our ability to track and control HIV.
Health care providers are legally required to report many diseases to their state health departments — not just HIV/AIDS. The list of "notifiable diseases and conditions" varies from state to state, but typically it includes vaccine-preventable illnesses and many food borne, insect borne, sexually transmitted, and other communicable diseases ... hantavirus, plague, rabies, that kind of thing. This public health surveillance system allows us to track epidemics so that we can better understand and respond to them. The more we know about how diseases are spread, who is getting them, and what the numbers are, the better we are able to design prevention programs and adequately fund services programs. This system of disease surveillance helped eradicate diseases such as smallpox and — hopefully by the year 2000 — polio throughout the world.
AIDS has been reportable by name in all 50 states since practically the beginning of the epidemic, while HIV is reportable in 33 right now. Most other states are now considering the addition of HIV infection to their lists of notifiable diseases/conditions.
Why the controversy about making HIV reportable by name? The HIV epidemic in this country has a history of stigmatization and marginalization of people infected and affected by HIV. People with and at risk for HIV have expressed very real concerns about confidentiality and how such a database full of names might be used for discrimination. Identification of such people might compromise their jobs, housing, and insurance status. Hence the suggestion that states use numeric codes (often called "unique identifiers") instead of names.
The problem is that UI systems make it much more difficult to track HIV accurately and without duplication. The federal Centers for Disease Control and Prevention (CDC) conducted a three-year evaluation of UI-based (non-named) surveillance systems in Texas and Maryland. The evaluation revealed serious problems with UI systems, including a high number of reports with incomplete codes (approximately 30-40%), low rates of completeness in reporting (approximately 25-50% complete), difficulty in conducting follow-up on specific cases, and the lack of behavioral risk data. Medical providers find it cumbersome to use UI systems, and it is more difficult to follow patients and assure that they get into appropriate care.
UI reporting does not guarantee patient confidentiality. On the contrary, in some ways it increases the risk of confidentiality breaches. To use a UI system, health care providers and others are likely to make and distribute coding keys listing HIV patients and their ID numbers. It is easy to imagine one of these coding keys falling into the wrong hands. I know of one instance in which a coding key was posted on the wall beside the file cabinet at a clinic in full view of the office staff.
Another problem with UI reporting is that tracking patients who move from state to state can be a real mess. To take a hypothetical example, national HIV statistics will be skewed when a patient originally testing HIV positive in one state is reported there as #GTE98843, then moves to another state where he is reported by name (but that state can't confirm whether he was reported in the first state, because the first state only knows him by a number), then moves to a third state with a different numeric system of reporting, and gets reported again.
Let's look at the alternative, named reporting. The questions that need to be asked are, what is the real danger in using names? Are the state HIV/AIDS databases secure?
In my state, a confidentiality statement (with criminal penalties for breaches) is signed by all health department employees working with the HIV/AIDS surveillance database (there are only two of us). The database is kept in a locked, alarmed room in a building that is locked and patrolled after hours. The computer on which the database is kept is password protected and the files are encrypted. Ask your doctor's office, your insurance company, the social security and welfare offices, the pharmacy which keeps your name on a computer attached to your drug prescriptions, and your workplace if any of them have this kind of sensitivity to confidentiality.
All state HIV surveillance programs are required to meet the minimum standards of security established by the CDC and must be able to ensure confidentiality as a condition of funding. Surveillance data forwarded to CDC from state offices are sent without information that could be used to identify any person. A review of confidentiality laws and regulations by the Georgetown/Johns Hopkins Program on Law and Public Health found that the strictest and most comprehensive protections of health data apply to government-held information, specifically to HIV-related information.
Now let's turn to the question you raised. Might people at risk for HIV avoid testing and might people with HIV disease delay receiving treatment and other services if they fear getting their name in this government database? It appears that the real motivation for avoiding testing or — among those infected — delaying treatment is most often simple denial. Recent studies conducted by the CDC around the country of people at highest risk for acquiring this infection found that many of them weren't aware of reporting laws at all, and when asked why they hadn't been tested, most said they didn't want to know the results. Among those who were already infected, many didn't seek treatment because they felt well and didn't want to dwell on their condition. Fear of their names going into a government database was very infrequently cited as the main reason for delaying accessing services.
The CDC strongly recommends that there be free, anonymous (no names are required) HIV testing and counseling sites in all states. In my state, anyone can get a free, anonymous HIV test at any public health clinic. This way, people can be tested for HIV and have the results themselves before anyone else knows of it.
Confidential named HIV reporting allows: accurate monitoring of the HIV epidemic and its changes among populations at risk, targeting of HIV prevention services for populations at greatest risk of HIV infection, early linkage of people living with HIV to health and social services which can prolong their health and minimize HIV transmission to partners and children, and accurate allocation of funding for HIV services from government and other sources.
Opposition to named reporting, in my opinion, is based mainly on unwarranted fear. Who knows what a misguided state legislature could do with a database full of names of people with HIV? But the fact is that there are many safeguards at the state and federal levels to prevent this from happening. State health departments that permitted any other agencies, including other government agencies, to see their HIV/AIDS files would lose their federal funding. The Americans with Disabilities Act prohibits discrimination due to positive HIV status. Most states have strict patient confidentiality laws. Remember, though named reporting of AIDS (as distinct from HIV) has been required for many years, the AIDS database has never been subject to political abuse.
UI reporting on the surface seems reasonable. But I think once most people understand the issue a little better they will agree that named reporting better serves the interests of the public, people living with HIV/AIDS, and those at risk.