HHS14 Make California's HIV Reporting System Consistent With its AIDS Reporting System, and Improve AIDS Reporting

Summary
California uses a code-based system for reporting Human Immunodeficiency Virus (HIV) cases and a name-based system for reporting cases of Acquired Immunodeficiency Syndrome (AIDS). The code-based system is labor intensive, less accurate and more complex than the name-based system and risks the loss of federal funding. California should make its HIV reporting system consistent with its name-based AIDS reporting system, and improve its AIDS reporting to identify additional unreported cases.

Background
Public health officials use disease reporting to monitor public health, develop prevention strategies, set priorities and evaluate programs, allocate resources and facilitate research. [1] California requires health care providers to confidentially report more than 80 diseases and conditions to local health officers. [2] All states require reporting of HIV and AIDS. [3] All states use confidential name-based systems for reporting AIDS and all other reportable diseases and conditions, except HIV.

AIDS has been reportable in California for more than 20 years. Since AIDS cases represent later stages of the disease, AIDS data are less useful than HIV data for public health professionals to monitor the epidemic, and target and evaluate prevention programs. [4] Public health professionals need accurate HIV case data in addition to AIDS data to assess the spread and impact of the HIV/AIDS epidemic. California responded to this need by implementing codebased HIV reporting in July 2002. Local health departments have already reported almost 31,000 cases of HIV, representing more than 35 percent of reported cases of individuals living with HIV/AIDS in California. [5] California is one of only seven states that have an HIV reporting system that is solely code-based.

AIDS reporting system
Local health departments identify between 95 and 98 percent of California's AIDS cases through active surveillance. [6] Local health departments actively seek case information from health care providers and other data sources, complete the case report form, assure the accuracy and completeness of the data, and forward the data to the state's HIV/AIDS Case Registry. [7] State health staff verify data accuracy and forward the information to the Centers for Disease Control (CDC) using a secure, electronic data system. [8] The HIV/AIDS Case Registry and local health departments rely on patient names and other data elements for epidemiologic follow-up and to assure the accuracy and uniqueness of each case. The AIDS reporting system is confidential in that only authorized public health staff has access to patient names, which are protected with security systems at the federal, state and local levels.

Implementation of HIV reporting
California law prohibits name-based HIV reporting, and previous attempts to change this through legislation and ballot initiative have failed. [9] California HIV/AIDS advocates have strongly opposed any form of name-based HIV reporting in the past due to confidentiality concerns, but supported a code-based system for HIV cases. Legislation that would have codified such a system failed to pass. [10] In 1999, California began developing regulations to create a code-based HIV reporting system and implemented HIV reporting on July 1, 2002.

Thirty-six states have implemented name-based HIV reporting, five use name-to-code systems, two allow client choice of name or code and seven, including California, use a code-only system. [11] Texas, Puerto Rico and Kentucky, which used code-based HIV reporting systems, have changed to name-based systems. [12]

Threat to federal funding
California received more than $223 million in Ryan White Comprehensive AIDS Resources and Emergency (CARE) Act funds in Federal Fiscal Year (FFY) 2004 for Titles I and II, of which approximately $174 million is by formula that uses AIDS case data. [13] Beginning as early as FFY 2005 and no later than FFY 2007, the federal government will include CDC-confirmed HIV case data in the Ryan White CARE Act funding formula. [14] CDC considers HIV data from codebased systems to be unreliable and will not accept the data and is unlikely to confirm them for use in allocating Ryan White funds. [15] If the federal government does not include California's HIV data and relies solely on its AIDS data, it could cost the state up to $50 million annually in Ryan White CARE Act funds and cause reduced services to clients. [16]

California is the only state among the five largest that uses an HIV reporting system different than its AIDS reporting system. [17] The other four, New York, Florida, Texas, and New Jersey, use name-based HIV reporting systems and will have an advantage over California when CDC confirms their HIV data for the Ryan White funding formula. By not changing to a name-based HIV reporting system, California risks losing its fair share of Ryan White CARE Act funds when the funding formula changes.

If California chooses to retain its code-based HIV reporting system and secure its fair share of federal funds, it must demonstrate that its system meets CDC criteria and negotiate acceptance of its data. The original budget for HIV reporting included $235,000 for evaluation, and the State Office of AIDS recently estimated that it could cost up to $500,000 to formally evaluate the system and determine whether the system meets CDC's minimum performance standards for completeness, timeliness, accuracy and risk information. [18] However, the Office of AIDS does not have funds available to evaluate its HIV reporting system.

Code-based HIV reporting is unnecessarily burdensome
Under the current system, laboratories must create partial codes and providers must complete them. Providers and laboratories find the code-based HIV reporting system confusing and more time intensive than the name-based AIDS reporting system. Furthermore, the code-based system is prone to error and makes it difficult for local health departments to follow up with providers and complete case reports in a timely manner. [19]

Local health departments must often provide technical assistance to providers on the correct method of reporting cases and completing forms. This means that local health department staff may see client names in the course of ensuring proper record matching and completion of case reports. If the local health department staff cannot see the records, they must rely on the providers. Providers are generally unwilling to do the matching because of workload concerns and complexity.

The State Office of AIDS staff must work with local health departments to ensure data accuracy prior to forwarding data to CDC, and the code-based HIV reporting system requires more work than a name-based system to resolve accuracy and duplicate reporting issues. The Office of AIDS has lost positions and funding to support code-based HIV reporting as well as AIDS reporting. [20]

Concerns about name-based HIV reporting
Opponents of name-based HIV reporting express concerns about confidentiality, but the HIV reporting system has the same measures that protect the confidentiality of AIDS case reporting. California has statutory protections for public health records, which the state has enhanced for HIV and AIDS, and state and local health departments must adhere to federal security and confidentiality standards. California has had no documented or reported cases of illegal or inappropriate disclosure of case information from the state's AIDS Case Registry.

Advocates are also concerned that a name-based system will deter people from HIV testing. However, no states with name-based HIV reporting systems have seen sustained patterns of lower HIV testing after implementation. Advocates raised this concern about implementing a code-based system in California, but there has been no decline in HIV testing in the state since reporting began in July 2002. [21] Finally, Californians still have access to anonymous testing sites in which healthcare providers do not know the name of the client and are also exempt from HIV reporting. [22]

Implementing name-based HIV reporting and improving AIDS reporting
No additional resources are needed to make the HIV reporting system consistent with the AIDS reporting system. The name-based AIDS reporting system is already in place, and the HIV cases are reported in the same database. California can change the HIV reporting system and all providers, laboratories and the state and local health departments can fully convert to the name-based system within six months. State and local health staff would update the current code-based files as new data are received, which state staff estimated they could complete within 12 months. [23]

California has not maximized opportunities to improve its reporting of AIDS (non-HIV) cases. Physicians currently monitor CD4+ cell counts, an element of the body's immune response system, to determine the impact of HIV on a person's immune system. [24] Lab reporting of low CD4+ counts is an excellent source of data for potential unreported AIDS cases, and California is one of only 13 states that do not require it. [25] Low CD4+ reporting will identify unreported AIDS cases and will help California qualify for additional federal funds.

    Recommendations

  1. The Governor should work with the Legislature to expressly permit name-based HIV reporting.

  2. Following passage of legislation to implement name-based HIV reporting, the Department of Health and Human Services should amend the California Code of Regulations for disease reporting to repeal the current HIV reporting regulations, which require a non-name code and add HIV to the regulation that allows confidential reporting of all other diseases, including AIDS, by name.

  3. The Department of Health Services, or its successor, should amend the California Code of Regulations for disease reporting to add laboratory reporting of low CD4+ counts to local health departments no later than July 1, 2005.

Fiscal Impact
Using the FFY 2004 formula appropriations as the funding base, the state risks a loss of up to $50 million annually in Ryan White CARE Act funds if the CDC does not confirm California's (and other code-based states) reported HIV cases for FFY 2007. [26] Using the CDC's data estimates for June 2000, California's estimated living HIV cases represent a range of 39 to 49 percent of the state's combined HIV and AIDS cases. This represents a substantial contribution to a revised CARE Act funding formula. [27] California can prevent this loss if it conforms its HIV reporting system to its name-based AIDS reporting system. [28]

California will avoid an approximate cost of $235,000 to $500,000 needed to evaluate its codebased HIV reporting system. [29] Without a demonstration that California's HIV reporting system meets its criteria, CDC will not consider accepting data from any states with code-based systems.

California will improve the business climate for providers and laboratories that have experienced additional workload caused by a code-based system. State and local health department staff will realize workload efficiencies and can devote more time to ensuring accuracy of information and improving timeliness of HIV and AIDS reporting. The savings cannot be estimated at this time.

The state can implement these recommendations within existing resources.

Endnotes
[1] Centers for Disease Control and Prevention, "Overview of Public Health Surveillance," by Denise Koo, MD, MPH http://www.pitt.edu/~super1/lecture/lec3011/005.htm (last visited May 7, 2004) (slide presentation).
[2] California Code of Regulations, Title 17, Division 1, Chapter 4, Subchapter 1, Article 1.
[3] The Institute of Medicine of the National Academies, "Measuring What Matters: Allocation, Planning and Quality Assessment for the Ryan White CARE Act" (Washington, D.C. 2003), pp. 76-80. All states implemented AIDS reporting in the early 1980s. States implemented HIV reporting over an 18-year period with the first states beginning in 1985 and the last state beginning in 2003.
[4] National Alliance of State and Territorial AIDS Directors, "HIV Prevention Fact Sheet, The AIDS Continuum," Washington, D.C., May 2002 (fact sheet); and National Alliance of State and Territorial AIDS Directors, "HIV Prevention Fact Sheet, HIV Surveillance," Washington, D.C., May 2002 (fact sheet). The time from HIV infection to AIDS can average 10 years and ranges from 5 to 20 years.
[5] Department of Health Services, Office of AIDS, "California HIV Case Surveillance Report "(April 30, 2004), http://dhs.ca.gov/ps/ooa/Statistics/pdf/Stats2004/apr04HIVmerged.pdf (last visited June 7, 2004); and Department of Health Services, "AIDS Surveillance Report for California" (April 30, 2004), http://dhs.ca.gov/ps/ooa/Statistics/pdf/Stats2004/apr04AIDSmerged.pdf (last visited June 7, 2004).
[6] E-mail from Juan Ruiz, acting chief, HIV/AIDS Epidemiology Branch, California Department of Health Services, Office of AIDS (April 15, 2004).
[7] California Code of Regulations, Title 17, Division 1, Chapter 4, Subchapter 1, Article 3.5, Section 2653.15.
[8] Centers for Disease Control and Prevention, "CDC Guidelines for National Human Immunodeficiency Virus Case Surveillance, Including Monitoring for Human Immunodeficiency Virus Infection and Acquired Immunodeficiency Syndrome, Morbidity and Mortality Weekly Report" (December 10, 1999), http://www.cdc.gov/mmwr/preview/mmwrhtml/rr4813a1.htm (last visited June 15, 2004), pp. 10-11. Before sending the data to the CDC, state staff removes all personal identifiers. To help the CDC compare AIDS case data to what already exists in its databases, states and territories generate a 4-digit code from the patient's last name using the Soundex system. The CDC uses Soundex and date of birth to match and unduplicate cases to assure an accurate, unduplicated count for each state and territory. The CDC works with states to resolve potential duplicate cases since it does not have identifying information. 374 Issues and Recommendations
[9] Health & S. C. Section 120975. California statute permits disclosure under specified conditions but not for public health disease reporting.
[10] State of California, Legislative Counsel, "Official California Legislative Information" (AB 1663 veto message) http://www.leginfo.ca.gov/pub/97-98/bill/asm/ab_1651-1700/ab_1663_vt_19980929.html (last visited June 15, 2004); and State of California, Legislative Counsel, "Official California Legislative Information," (AB 103 veto message) http://www.leginfo.ca.gov/pub/99-00/bill/asm/ab_0101-0150/ab_103_vt_19991010.html (last visited June 15, 2004). Governor Pete Wilson vetoed AB 1663 in 1998 stating that a code-based system was inadequate. Governor Gray Davis vetoed AB 103 in 1999 and recommended the department seek federal assistance to fully fund the costs of a code-based system. California did not receive federal funding for the code-based system and subsequently appropriated $2.8 million from the General Fund to implement it.
[11] The Institute of Medicine of the National Academies, "Measuring What Matters: Allocation, Planning and Quality Assessment for the Ryan White CARE Act," pp. 76-80. Name-to-code systems collect and use the clients' names to match and unduplicate case reports, then convert to a code and destroy the names within a specified period of time. Besides California, the code-based states are Hawaii, Illinois, Maryland, Massachusetts, Rhode Island, and Vermont. Delaware, Maine, Montana, Oregon and Washington use name-to-code systems. Connecticut and New Hampshire allow use of name or code.
[12] Commonwealth of Kentucky, General Assembly, 2004 Regular Session, House Bill 82 (04 RS HB 82/EN), http://www.lrc.ky.gov/record/04rs/hb82.htm (last visited June 15, 2004). Kentucky will change its code-based HIV reporting system to a name-based system effective January 1, 2005; and the Institute of Medicine of the National Academies, "Measuring What Matters: Allocation, Planning and Quality Assessment for the Ryan White CARE Act," p. 80. Texas and Puerto Rico changed to a name-based HIV reporting system in January 1999 and January 2003 respectively.
[13] Department of Health Services, Office of AIDS, "CARE Act Consolidated Funding-All Titles Sorted by Alpha Order" (Sacramento, California, April 27, 2004). California's nine Title I Eligible Metropolitan Areas received $102 million in Ryan White funds for FY2004, and the State received $121 million in Title II funds in FY2004.
[14] Health Services and Resources Administration, HIV/AIDS Bureau, "A Compilation of the Ryan White CARE Act of 2000," Sections 2603(a)(3)(C)(i)-2603(a)(3)(D)(ii), http://hab.hrsa.gov/law/compile.htm (last visited May 10, 2004).
[15] Interview with Dr. Robert Janssen and staff, Centers for Disease Control and Prevention, National Center for HIV, STD and TB Prevention, Division of HIV/AIDS Prevention-Surveillance and Epidemiology, Atlanta, Georgia, April 28, 2004. CDC staff says that it would take six years to develop standard mechanisms to evaluate code-based HIV reporting systems, conduct evaluations, conduct studies for unduplicating interstate data, and implement the findings. The CDC staff states that this process is necessary for confirming HIV cases from code-based systems, and they do not have the resources to do this.
[16] Letter from Senator Dianne Feinstein, Senator Ted Kennedy and 13 other members of Congress to the Centers for Disease Control and Prevention, May 4, 2004. The members asked the CDC to accept HIV case data from code-based states.
[17] The Centers for Disease Control and Prevention, "HIV/AIDS Surveillance Report 2002," Vol. 14, Table 14. http://www.cdc.gov/hiv/stats/hasr1402/2002SurveillanceReport.pdf (last visited May 11, 2004). The top five states (in descending order), New York, California, Florida, Texas, and New Jersey represented 57 percent of the nation's AIDS cases reported as of December 2002.
[18] E-mail from Vince Torres-Gil, Department of Health Services, Office of AIDS (April 20, 2004); and e-mail from Barbara Bailey, Department of Health Services, Office of AIDS (May 12, 2004); and Centers for Disease Control and Prevention, The California Performance Review A Government for the People for a Change 375 "CDC Guidelines for National Human Immunodeficiency Virus Case Surveillance, Including Monitoring for Human Immunodeficiency Virus Infection and Acquired Immunodeficiency Syndrome, Morbidity and Mortality Weekly Report" (December 10, 1999), p. 13.
[19] Interview with Glennah Trochet, M.D., Sacramento County Department of Health and Human Services, Sacramento, California (March 23, 2004); interview with Maree Kay Parisi, San Francisco Department of Public Health, San Francisco, California (April 14, 2004); interview with Michael Bursaw, San Diego County Health and Human Services Agency, San Diego, California (April 15, 2004); interview with Alexander F. Taylor, San Bernardino County Department of Public Health, San Bernardino, California (April 15, 2004); and interview with Gordon Bunch and staff, Los Angeles County Department of Health Services, Los Angeles, California (May 3, 2004).
[20] E-mail from Vince Torres-Gil, Department of Health Services (April 20, 2004). California appropriated $2,828 million in FY 2000-2001 for development, training, implementation and evaluation of HIV reporting, of which the Office of AIDS received $1.369 million for positions and contracts and allocated $1.431 million to local health departments for surveillance personnel.
[21] E-mail from Deanna Sykes, Department of Health Services, Office of AIDS (April 12, 2004).
[22] California Code of Regulations, Title 17, Division 1, Chapter 4, Subchapter 1, Article 3.5, Section 2643.10(g) and Section 2643.20. Once a client enters the health care system, all HIV testing is confidential (versus anonymous), and providers must report positive results.
[23] Interview with Jim Creeger, chief, HIV/AIDS Case Registry, Department of Health Services, Office of AIDS, April 26, 2004. The change would relieve laboratories from creating a partial code and relieve providers from completing the code and maintaining a cross reference of codes to case files.
[24] A CD4+ count of less than 200 per microliter (uL) or less than 14 percent of total T-lymphocytes in combination with a positive HIV test constitutes an AIDS case.
[25] The Institute of Medicine of the National Academies, "Measuring What Matters: Allocation, Planning and Quality Assessment for the Ryan White CARE Act," pp. 117-118. As of April 2003, California, Alabama, Arizona, Florida, Georgia, Michigan, Minnesota, Montana, North Carolina, North Dakota, South Dakota, Vermont and Virginia do not have CD4+ reporting.
[26] Three factors will determine the amount of federal Title I and II formula funds received by California's Ryan White CARE Act grantees: federal appropriations for Title I and Title II, the formula and California's HIV and AIDS data. This estimate presumes no change in the funding formula or federal appropriations.
[27] Centers for Disease Control and Prevention, National Center for HIV, STD, and TB Prevention, "Procedure Used to Estimate the Number of Adolescents and Adults Living with HIV Infection, but not AIDS, in Areas without Name-based HIV Reporting before 1994," Atlanta, Georgia, August 2002 (internal report). The CDC states limitations to the modeled estimates, which are not substitutes for HIV case surveillance data.
[28] Congress could mitigate the funding loss for California and other coded states if it includes "hold harmless" provisions in the next reauthorization of the Ryan White CARE Act or increases the appropriations to the extent that they counteract losses due to the formula change. In past reauthorizations of the reauthorized CARE Act, Congress included "hold harmless" provisions to minimize losses resulting from formula changes at about 1 percent per year.
[29] E-mail from Barbara Bailey, Department of Health Services, Office of AIDS (May 12, 2004).