Is there a viable alternative to name-based HIV reporting?

The National Association of People with AIDS (NAPWA) and the American Civil Liberties Union issued separate statements opposing the use of individuals' names in HIV case surveillance and favoring the establishment of unique alpha-numeric identifiers. The latter system would enable policy makers to obtain necessary epidemiological data without jeopardizing the confidentiality and anonymity of HIV patients. Unique identifiers are already in use in the United Kingdom, France, and Australia. Maryland and Texas are testing the unique identifiers system to track HIV cases. Maryland officials report success while Texas officials are considering changing systems. Both Texas and Maryland use a 12-digit number consisting of the last four digits of the person's Social Security number, the numerical date of birth, and one-digit for the person' gender and race or ethnicity. There has been some difficulty in obtaining patient's Social Security numbers. If additional elements of the identifier are missing it becomes difficult and labor intensive to track patients.     

CDC sets timetable for recommending HIV reporting. Centers for Disease Control and Prevention

The Centers for Disease Control and Prevention (CDC) informed State health directors that it will release guidelines on recommended HIV reporting practices in January 1998. This date gives State legislatures time to deliberate revising their own surveillance policies as soon as the 1998 sessions begin. According to the CDC timetable, States that decide to conduct HIV case surveillance would begin collecting data for a full year beginning in January 1999. Currently, 30 states track HIV cases among adults and adolescents, and all States (except Maryland and Texas) and territories use names to identify people with AIDS. A move to HIV case reporting is expected to enhance understanding of the epidemiology of the epidemic and target resources. Two policy advocates, the National Association of People with AIDS and the American Civil Liberties Union, reject name-based HIV reporting practices and advocate the use of unique or coded identifiers.     

CDC says names, not numbers, do better job in tracking HIV. Centers for Disease Control and Prevention

The Centers for Disease Control and Prevention (CDC) released the results of a three-year evaluation of the unique identifier systems used in Maryland and Texas to track HIV cases. The report indicates that the unique identifier systems fall short of the more widely-used name reporting systems. Currently all States track AIDS cases by name and 30 States also list HIV cases by name; only Maryland and Texas use the numerical alternative. CDC's report indicates the main problem lies in getting health care providers to include the Social Security number in reports to health departments. More than one-fifth of the unique identifiers were missing the Social Security number, severely limiting the success of the surveillance system. The CDC added that findings from surveys of public attitude toward name-based surveillance indicate that the use of names is not a major deterrent to HIV testing for high-risk individuals. The American Civil Liberties Union reported that the unique identifier system was a viable alternative in Maryland, noting that the coded data were 76 percent complete during the second half of 1996, a rate that surpasses some States with higher rates of HIV.     

Gov. Wilson vetoes California legislation for coded identifiers

California governor Pete Wilson vetoed legislation which would have created the world's largest HIV case surveillance program that uses unique identifiers. Public health experts and AIDS policy advocates had reached a consensus on a program using unique identifiers and were unhappy when the program was vetoed. As a result, California does not have an AIDS surveillance program, and public health officials say they will not be able to adequately monitor the epidemic or target prevention programs. The governor and some physicians say AIDS reporting should use names to track the epidemic, similar to other infectious disease reporting programs. Because of recent elections and turnover in the legislature, it will be several months before the issue is discussed again.     

Thurman cool to names reporting, backs needle swaps

At the National AIDS Update Conference, White House AIDS policy director Sandra Thurman stated that she is unconvinced that names reporting is essential to track the spread of the AIDS epidemic. Health and Human Services Secretary Donna Shalala shares the view. Thurman feels that people will be discouraged from providing names due to fears of exposure, discrimination, and stigmatization. The Centers for Disease Control and Prevention (CDC), whose guidelines are now three months late, was criticized for not helping Maryland and Texas develop tracking systems using unique identifiers. Thurman also voiced strong support for Federal funding of needle exchange programs, saying that the funding may be made available if two conditions are met: evidence showing that needle exchange programs reduce HIV transmission rates and certification that such programs do not encourage illicit drug use.     

California nearing decision on reporting by coded ID

California legislation A.B. 1663 would create a 5-year pilot project to track HIV cases using coded identifiers rather than names. Under the bill, the Department of Health Services would have a mandate to develop, implement, and evaluate a statewide HIV case reporting system using a unique code. AIDS cases would continue to be reported to the department by name. Currently, 30 states track HIV cases, but only Texas and Maryland are using unique identifiers.     

HIV reporting

The California debate over HIV surveillance resumed with the introduction of a bill to use coded identifiers to track HIV infections. Bill 103 is similar to another bill vetoed by Gov. Pete Wilson in 1998. Wilson favors name-based reporting. The new governor, Democrat Gray Davis, appears more open to using unique identifiers.     

Draft guidelines favor name reporting, but permit coded IDs

The Centers for Disease Control and Prevention (CDC) have issued long-awaited draft guidelines for HIV case surveillance. The guidelines recommend that States use names to track cases, but CDC pledges to provide technical assistance to continue or establish HIV case surveillance systems, regardless of whether cases are recorded by names or coded identifiers. A number of groups are opposed to the guidelines, claiming they are tilted too heavily against surveillance via unique identifiers. The draft guidelines were published in the Federal Register and are available on the Internet.     

Wilson signs bills on HIV transmission, needle safety

California governor Pete Wilson has signed legislation which criminalizes the transmission of HIV, requires health care facilities to begin using safety needles, and revises HIV testing protocols. He also authorized a bill permitting the State Department of Motor Vehicles to issue a special red ribbon license plate to raise money for AIDS research. Governor Wilson vetoed several measures, including one on HIV case surveillance with coded identifiers and one on expanding Medi-Cal coverage to those infected with HIV.     

New HIV reporting plan proposed for Washington state

The Seattle-King County Board of Health in Washington State has endorsed HIV surveillance via coded identifiers. The plan is a compromise between two opposing approaches. It calls for cases to be tracked by name for a maximum of 90 days for epidemiological tracking. However, eventually the names would be converted to unique identifiers and the name documents would be destroyed. People testing positive would have the option of notifying their partners themselves or having the health department assist them. The board is also recommending that State lawmakers strengthen confidentiality laws. The plan is based on recommendations from the Common Ground Task Force.     

New York panel remains divided over name reporting

The AIDS Advisory Council in New York has reached a broad consensus over the need to begin tracking HIV infections; however, the issue of whether that reporting should use names or unique identifiers has not been resolved. A working group is examining the issue and related issues, including partner notification, anonymous testing policies, and protections for confidentiality. The group has asked the State Senate to delay a vote on the issue pending their recommendations.     

Washington State moves toward study of unique identifiers

A 15-member task force of community-based organizations, hospitals, epidemiologists, and heads of the Washington Board of Health will develop a pilot project for HIV surveillance if House Bill 2914 is approved by the Senate in late February. Washington currently has no reporting requirements for adult HIV cases. The task force will consider a modified unique identifier system similar to those systems used in Maryland and Texas, the only States relying on coded numbers to track HIV cases. Under the system, health-care providers would send a person's name to the health department where the name would be coded and the name would be deleted. Confidentiality would be less of a risk because there is no need for health-care providers or labs to maintain logs of infected patients. Other alternatives will also be examined.     

D.C. to track HIV cases by code, rather than name

District of Columbia Mayor, Anthony A. Williams, ordered the Administration for HIV/AIDS to develop a plan for collecting HIV case data using coded identifiers rather than names. Patient advocates hailed the decision because they believed names would discourage people from getting tested and seeking treatment. Officials suggest the unique identifiers be a combination of the patient's birth date and Social Security number.     

Illinois health officials move to mandate HIV reporting by name

The Illinois Department of Public Health plans to ask health care providers to report the names of people who test positive for HIV to the State. The new rules, scheduled to be published on February 27, extend name-based surveillance to HIV cases as well as AIDS cases. The AIDS Foundation of Chicago advocates the use of unique identifiers based on the unpublished University of California at San Francisco study that found that the fear of name disclosure had diminished. However, another study conducted in 1996 in California found 86 percent of those questioned would not seek HIV testing if their names were reported. The public health director believes the time has come to treat HIV like other sexually transmitted diseases and use proven public health solutions for preventing the spread of the virus.     

Democratic gains in California may bring policy changes

Results from the November elections are not expected to bring sweeping changes in the Federal response to HIV. However, in California, a new Democratic governor and a reinvigorated Democratic legislature could bring shifts in HIV policy. The new governor supports expansion of Medi-Cal funding for asymptomatic HIV-positive patients, needle- exchange programs, and HIV reporting via unique identifiers. New members of the legislature will need to be educated on HIV-related issues.     

CDC advocates names, but doesn't rule out use of coded identifiers. Centers for Disease Control and Prevention

The Centers for Disease Control and Prevention (CDC), while preferring that states track HIV cases using names, will cooperate with jurisdictions that use coded identifiers instead. Under the final CDC guidelines on HIV case surveillance, public health officials are to log in a patient identifier (name or code), an earliest date of diagnosis of infection, an earliest date of an AIDS-defining condition, demographic information (date of birth, race or ethnicity, and gender), city or town, HIV risk exposure, and date of death. Final guidelines impose minimum performance standards in order for states to receive federal aid. Thirty-four states and the Virgin Islands use confidential name-based systems. For states using coded identifiers, the challenge will be to get up to speed as soon as implementation begins. The guidelines also recommend that states consult the "Model State Public Health Privacy Act" to determine if improvements to their HIV confidentiality protections are necessary. Information on how to obtain a copy of the act is provided.     

Name-based notification bill sails through New York Senate

The New York Senate approved a bill requiring public health officials to notify spouses, sexual partners, and needle-sharing partners of HIV-positive people, that they have been exposed to the virus. Under S. 4422-A, physicians are required to report HIV-positive patients, by name, to the State Department of Health, so as to begin the process of partner notification and statewide HIV case surveillance. AIDS activists consider the new law coercive and less effective than growing programs that reinforce safer-sex messages. The current notification system, which allows the physician or patient the option of notifying the State Health Department, has sometimes been assessed as a failure. A compromise is being considered that involves telling the State Department the names of the partners to contact, while protecting the confidentiality of the HIV-positive patient by assigning the patient a unique identifier number. This would allow tracking of the HIV surveillance data, without comprising the confidentiality of the HIV-positive patient.     

Texas revises inmate testing and prevention policies

The Texas Department of Criminal Justice revamped its HIV testing and surveillance procedures for the State's 142,000 inmates. The State Board of Criminal Justice approved the policies based on consultations with the Centers for Disease Control and Prevention (CDC), the University of Texas Medical Branch, Texas Tech University, and the Department of Public Health. The changes include routine testing of all inmates, expanded education and prevention efforts, staff training and education programs, the inclusion of antiretroviral treatments, and discharge planning. Inmates will also be monitored following their release. The guidelines took effect March 1.     

California bill seeks HIV reporting using coded identifiers

An HIV case surveillance system, using coded identifiers, will be presented before the California legislature, and it appears to have strong bipartisan support. A field test of a similar plan is scheduled for later in the year and will be offered as a model to California and other States. Illinois, Washington, and Pennsylvania are also discussing HIV case reporting: Illinois is investigating case surveillance options; Washington is awaiting public hearings and policy implementation; and Pennsylvania has adopted a wait-and-see attitude.     

Access to and use of HIV antiretroviral therapy: variation by race/ethnicity in two public insurance programs in the U.S

OBJECTIVES: To examine access to and use of HIV highly active antiretroviral therapy (HAART) by race/ethnicity in Medicaid and the AIDS Drug Assistance Program (ADAP) in 1998 in four states. METHODS: The authors analyzed reimbursement claims and AIDS surveillance data in California, Florida, New York, and Texas. Study subjects were identified using diagnostic or medication codes specific to HIV. The race/ethnicity of program enrollees was compared to representation in the HIV epidemic to examine access. Claims for antiretroviral (ARV) use were compared to U.S. Public Health Service treatment guidelines to assess HAART use. RESULTS: The authors identified 151,000 HIV-infected individuals in these two programs in the four states. Evidence of AIDS or symptomatic HIV was present in 78%-88% of enrollees in Medicaid, versus 31%-48% in ADAP. African Americans participated in Medicaid 10%-53% above and in ADAP 17%-31% below representation in the epidemic. Non-Latino whites exhibited the opposite pattern, being in Medicaid 5%-38% below and in ADAP 9%-65% above epidemic representation. Latinos participated more in ADAP (7%-31%), except in New York. HAART use over 90 days (July-September) ranged from 38% to 76% by program and state. Differences by race/ethnicity were inconsistent and small: African Americans had lower HAART use by 6%-14% in California and Florida Medicaid, and Latinos had higher HAART use by 2%-11% in ADAP and in Texas Medicaid. CONCLUSIONS: African Americans were more likely to access HIV drugs through Medicaid than through ADAP, which may reflect differences in program eligibility criteria as well as care seeking later in HIV disease. Differences in the use of HAART by race/ethnicity within state programs were small.