MYTHS AND FACTS ABOUT HIV
CASE REPORTING BY NAME
VERSUS BY UNIQUE IDENTIFIER
The American Medical Association, the Council of State and Territorial Epidemiologists and the New England Journal of Medicine, among others, have recently started urging all states to adopt name-based reporting of HIV. This policy requires doctors, test sites and labs to report to their state Health Department the names of all individuals who test positive for HIV.
Some people who oppose Mandatory Name Reporting (MNR) of people with HIV believe that HIV case data should be collected using unique identifier codes instead of names. They argue that this enables epidemiologists to track HIV spread and study the epidemic without putting the privacy of people with HIV at risk by entering their names into a permanent state registry.
These are a few of the myths and facts about HIV case reporting by MNR versus by unique identifiers:
MYTH: If state Health Departments have the names, they can make sure that everybody who tests HIV positive gets into care early and has a chance to take advantage of medical advances in HIV treatment.
FACT: In 1996 through early 1997, only 25% of Americans with CDC-defined AIDS were on any kind of Protease Inhibitor therapy. The federally funded AIDS Drug Assistance Programs (ADAP) got medication to somewhere between 14% and 28% of all ADAP eligible people in 1996. Even while serving a quarter or less of the eligible population, ADAP initiatives are going broke. Medicaid is clearly unable to afford triple combination therapy for all the Medicaid recipients with HIV who might benefit from it. How will collecting names get everyone into care when money to pay for the care obviously isn't available?
MYTH: People with HIV don't have to worry about having their names in a state HIV registry because existing privacy laws protect them from discrimination.
FACT: On September 11, 1997, Health and Human Services Secretary Donna Shalala recommended to the US Congress that police and other law enforcement officials be given unlimited access on request to all private medical records. If her recommendation is passed into law, it could very well give them legal access to name-based HIV registries. How do we know that this access won't be used by INS (since HIV positivity disqualifies an individual for legal immigration) or by police in states where laws exist that criminalize HIV under various circumstances (such as "willful transmission" laws, sodomy statutes, etc.)?
State privacy laws are only as strong as the legislatures' will to uphold them. States can, and do, change their laws regarding privacy all the time. If a state Health Department has a name-based registry listing people with HIV, it can be forced at any time to open that registry by either legislative mandate or court order.
MYTH: The fear that HIV name reporting will cause people to avoid getting tested for HIV turns out not to be true.
FACT: The recently completed MESH (Multi-State Evaluation of Surveillance of HIV) study surveyed HIV positive and negative people in eight states about the attitudes and factors that influenced their HIV testing decisions. Nearly 20% of those surveyed listed fear of name reporting as one reason for avoiding HIV testing. Since 50% of HIV positive Americans don't know they are infected, anything that discourages testing to this extent should be a serious public health concern.
MYTH: Health Departments need the names so that they can contact people and get the names of their sex and needle sharing partners for partner notification.
FACT: The MESH study also disproved this. Of the HIV positive people surveyed in the MESH study, those tested at anonymous test sites (where names aren't used) supplied the same number of partner names on average as those tested at confidential test sites (where names are collected). In partner notification, it is the partners who are contacted during follow up. Thus, the name of the person testing positive is not needed in order for effective partner notification to be done.
MYTH: Unique identifier-based reporting systems are uniformly inefficient and inadequate for HIV case reporting.
FACT: Unique identifier-based HIV case reporting is done in the U.S. by Maryland and Texas and abroad by France and Australia. The Maryland Health Department, to give one example, reports that its system accurately monitors statewide HIV trends and has achieved 96.6% completeness in reporting by state-funded HIV test sites. Completeness rates from other testing sites (hospitals and private physicians) are lower but steadily improving.
It is a mistake, however, to evaluate unique identifiers in general by looking at one or two systems. A wide variety of unique identifier systems are available. They vary widely in efficiency and effectiveness at protecting privacy. Some make it hard to prevent duplication of records, for example, while others ensure a lower duplication rate than is achievable with names. Some unique identifier codes are very easy to "crack" (decipher to obtain the person's identity) and some are virtually impossible to crack. Each system has to be weighed on its own merit
MYTH: Unique identifier systems are too expensive.
FACT: HIV case reporting costs money to implement, whether names or unique identifiers are used. Maryland and Texas set up their systems after receiving one-time CDC grants of $600,000, allocated to evaluate the systems over three years. Both states report that the difficulty of mounting a unique identifier system was exacerbated by the total lack of state funding. Maryland estimates that it now takes about $100,000 per year to keep its unique identifier system functioning.
By comparison, New York's Health Department spends twice that amount on name-based reporting of low CD4 test results. To follow up on approximately 2000 low CD4 reports per month, New York had to add four FTE's (two research specialists and two public health representatives) to its HIV/AIDS surveillance staff as well as a 1/4 FTE for ongoing computer system maintenance and improvement. The staffing costs can be assumed to total $200,000 or more.
MYTH: Since most of the states already have Mandatory Name Reporting, the rest of the states might as well go along with it.
FACT: 30 states already have some form of MNR for people with HIV. All but two of these, however, are not high incidence states. The CDC estimates that 75% of all US residents with HIV are living in the high incidence states and territories that don't yet require HIV case reporting by name. These are California, Georgia, Illinois, Maryland, New York, Pennsylvania, Puerto Rico and Texas.
Whether these places adopt Mandatory Names Reporting or not will depend on the level of resistance to it generated by the consumer, civil rights and activist communities. A number of national organizations including the National Association of People with AIDS (NAPWA), the National Minority AIDS Council and the National Lesbian and Gay Health Association are already on record as opposing MNR for HIV case reporting.
prepared by Anna Forbes, MSS, AIDS and Women's
Health Policy Consultant
phone: (610) 649-8113, e-mail: firstname.lastname@example.org
ACT UP/New York Position on Names Reporting
NAMES REPORTING...Activists Responses
Congressional Legislation (The Coburn Bill)
NAMES News Media Clips
Nushawn Williams Heinous TV Newscasts