Maximizing Federal Funds for Hiv/aids: Improving Surveillance and Reporting

Maximizing Federal Funds for HIV/AIDS: Improving Surveillance And Reporting M AC TAylor • l e g i s l A T i v e A n A l y s T • FebruAry 22, 2010 an LaO RepORt 2 LegisLative anaLyst’s Office an LaO RepORt ExEcutivE Summary Although they receive less public attention now than at times in the past, human immu‑ nodeficiency virus (HIV) and acquired immunodeficiency syndrome (AIDS) are still significant public health issues, with thousands of people becoming newly infected with HIV in Califor‑ nia every year. The state spends an increasing amount every year—over $1.2 billion from all sources in 2009‑10—on a variety of programs to prevent HIV, treat HIV and AIDS, support individuals living with HIV and AIDS, and track the prevalence of these conditions. A signifi‑ cant portion of the federal funding that California receives for these programs is based on the number of cases of HIV and AIDS that are reported to the state’s surveillance system. In this report, we identify significant problems in the state’s ability to accurately track AIDS‑ related cases. These gaps in the surveillance database weaken the state’s ability to use it as an effective tool to track and respond to trends in the disease. These problems are also affecting the state’s ability to collect additional federal funding that could otherwise be available to offset the cost of state AIDS programs. To remedy these problems, we recommend two actions that the state could take to en‑ hance its competitiveness for the federal funding awards that are based on this surveillance data. Specifically, we recommend that the state Office of AIDS (OA) take steps to ensure that persons receiving services through state‑supported programs are reflected in the HIV surveil‑ lance database. We further recommend that laboratories that must report HIV data to local health departments be required to report this data electronically. These changes, our analysis indicates, would make the state’s surveillance database more complete, improve the state’s knowledge of disease trends, and make the state more competitive for federal AIDS funding. LegisLative anaLyst’s Office 3 an LaO RepORt introduction The state spends about $1.2 billion ($455 mil‑ HIV surveillance system and its importance in lion from the General Fund) annually on medical determining California’s share of federal funds treatment and programs related to HIV/AIDS. for HIV and AIDS. We assess significant prob‑ These include prevention, education, and test‑ lems we have identified in this system, and ing programs; local and statewide surveillance recommend two improvements that our analysis and epidemiological studies; and programs that indicates would allow the state to address gaps provide direct services to HIV‑positive individu‑ in this data, better track the epidemic, and draw als such as the AIDS Drug Assistance Program down a larger share of federal funds for AIDS‑ (ADAP). In this report, we describe the state’s related programs. Background HIV/AIDS the Department of Public Health (DPH). The OA estimates that there are between 68,000 and Fewer Deaths, More Cases. Human Immu‑ 106,000 persons infected with HIV in California, nodeficiency Virus (HIV) destroys a certain kind and another 68,000 persons who have AIDS. of blood cell (called CD4+, or T cells). These The office also estimates that there have been cells are crucial to the normal function of the about 5,000 to 7,000 new cases of HIV infection human immune system, and a reduction in the per year in the state for the past several years. number of these cells reduces the immune sys‑ More People Living With HIV. There is no tem’s ability to fight disease. Although a person “cure” for HIV disease or AIDS, but access to infected with HIV may not show symptoms until more effective drug therapies has allowed many several years later, the virus is active in the body people infected with HIV to reduce the level of and, if untreated, the HIV disease will progress virus in their body sufficiently to stay healthy. to AIDS. An AIDS diagnosis is made when the The drug treatment that helps suppress HIV, count of CD4+, or T cells, falls below a certain however, is far from simple. Medications are very level or when the person has a history of in‑ costly and need to be taken daily for the rest of a fections commonly associated with AIDS. The person’s life, side effects of the medications may number of new AIDS diagnoses and the number be severe, and following the required treatment of deaths from AIDS have generally decreased regimen can be complex. every year since the introduction of effective If current trends in HIV incidence persist, drug therapy that prevents progression of HIV to there will be thousands more individuals seeking AIDS. this treatment every year, putting significant strain However, although fewer people are dy‑ on the public resources available to combat this ing from AIDS, the total number of HIV cases disease. In addition to surveillance programs, the in California is still increasing every year. In OA also administers a variety of HIV/AIDS‑relat‑ California, surveillance of HIV/AIDS and related ed programs, including ADAP, which provides programs are coordinated by the state OA within 4 LegisLative anaLyst’s Office an LaO RepORt necessary drug therapies to over 35,000 individ‑ lected informs those responsible for prevention uals with HIV or AIDS. Other state departments, and control of these diseases, and are used to such as the Department of Health Care Services allocate public health system resources to where (which administers the state’s Medi‑Cal Program) they are most needed. Some of the key steps in and the California Department of Corrections this surveillance process are discussed below. and Rehabilitation (CDCR), also provide medi‑ See Figure 1 for an overview of this process. cal services to individuals with HIV and AIDS. In Testing. The state’s surveillance of HIV and total, the state spends over $1.2 billion from all AIDS begins when an individual takes an HIV fund sources on HIV/AIDS programs. test, perhaps in a health care provider’s office or a public health clinic. The sample is generally California’s System for sent to a laboratory for testing, the laboratory Surveillance of HIV/AIDS provides a positive or negative result back to the A Tool to Protect Public Health. Surveillance provider who ordered the test, and the provider of diseases and conditions is an ongoing, system‑ diagnoses the case. These HIV/AIDS lab results atic process whereby Figure 1 public health authori‑ HIV/AIDS Reporting System ties collect and analyze reports of incidence of the disease. Certain Health Care Provider diseases and condi‑ HIV AIDS • Performs viral load test. • Performs viral load test. tions are considered • Performs resistance test. • Performs resistance test. • Performs HIV test. “reportable,” meaning that state law requires Sends test to providers and labora‑ laboratory. Laboratory tories to report cases • Evaluates test results. Sends test results back to to local public health health care provider. jurisdictions (LHJs). The If person has If person has HIV/AIDS, sends HIV/AIDS, sends LHJs are departments test result to local test result to local under the authority of health jurisdiction. health jurisdiction. Local Health Jurisdiction a health officer. State • Performs surveillance on test and local surveillance results. workers in California Sends unduplicated HIV/AIDS cases. track over 80 reportable Office of AIDS conditions; examples • Produces statewide include tuberculosis, surveillance reports. hepatitis, measles, and sexually transmitted diseases as well as HIV Federal Government and AIDS. The data col‑ LegisLative anaLyst’s Office 5 an LaO RepORt and diagnoses are then reported to authorities as sized the autonomy and privacy rights of people discussed below. with or at risk for infection rather than traditional ➢ Case Identification. When laboratory public health concerns. This has led to HIV/AIDS being treated differently than other diseases and test results indicate that a person is HIV‑ conditions in regard to many testing, consent, positive or has AIDS, the laboratory is and reporting requirements. For example, HIV required to transmit this information to has different reporting requirements than other an LHJ as well as to the provider who or‑ diseases. Laboratories can use a variety of meth‑ dered the test. In addition, when the pro‑ ods to report most diseases to LHJs, including vider receives positive test results back phone, fax, or secure electronic delivery. Labora‑ from the laboratory and has diagnosed a tories must report HIV, however, using methods case of HIV or AIDS, the provider is also such as hand delivery or registered mail. required to transmit this information to Another example concerns written consent the LHJ. Generally, once LHJs receive this requirements. Generally, routine medical tests do information (usually from the laboratory), not require the person being tested to complete they contact the health care provider to and sign a written consent form prior to their confirm that a person under their care being tested; verbal consent is usually sufficient has a new diagnosis. Diagnoses for HIV if required at all. Until Chapter 550, Statutes of and AIDS are tracked separately using 2007 (AB 682, Berg) removed the written con‑ this process. sent requirement from routine HIV testing in ➢ Case Reporting. Once the case is iden‑ California, the state required a separate consent tified as a new diagnosis, surveillance form before an HIV test was performed. Consis‑ specialists at LHJs collect additional de‑ tent with Chapter 550, the public health commu‑ mographic and health‑related information nity has begun to move away from exceptional and transmit a Confidential Morbidity treatment of HIV/AIDS and towards handling Report (CMR) for each confirmed case to it more like other diseases with regards to test‑ the state OA. In turn, the OA compiles ing, consent, and reporting. For example, the these reports, removes duplicate reports, U.S. Centers for Disease Control and Prevention and submits a final report to the federal recommended in 2006 that testing for HIV infec‑ government. This report is used to track tion be performed routinely for all patients age disease trends nationally and to allocate 13 to 64 and that written consent should not be federal resources for HIV. required by the provider in order for an HIV test to be conducted. This information is used by the state OA for HIV Reporting Requirements. Diagnosed epidemiological tracking, for allocating resources cases of AIDS have been reported by California within the state, and for measuring progress in authorities since 1983. However, the state first combating HIV. began requiring laboratories and providers to HIV/AIDS Historically Treated Differently report HIV infections to LHJs in 2002. Before that Than Other Diseases. In the early years of the time, infections of HIV were reported to LHJs epidemic, policies surrounding HIV/AIDS empha‑ 6 LegisLative anaLyst’s Office an LaO RepORt using a code instead of the individual’s name. mise version of the federal law was enacted that Reporting by name is the common practice for allowed states like California with code‑based most diseases. California changed to names‑ reporting systems to retain most of their federal based reporting for HIV infections after it be‑ funds, but with a modest penalty in their federal came clear that federal funds being received by awards. In addition, all states were expected to the state for AIDS programs were at risk if it did begin reporting HIV infections by name. not adopt such a system. In response to the federal law, the Legislature The Ryan White Comprehensive AIDS enacted Chapter 20, Statutes of 2006 (SB 699, Resources Emergency (CARE) Act, the main Soto), requiring health care providers and labora‑ federal funding source for HIV/AIDS programs, tories to report HIV cases by the patient’s name was reauthorized by Congress in 2005. Under a rather than code, beginning in 2006. Funding draft version of the bill, funding would have been for the Ryan White CARE Act was reauthorized allocated to states based primarily on the number again by Congress in 2009, in a form that in‑ of HIV and AIDS cases that each state reported creases the penalty for states that do not report by name. Since California did not yet report HIV and AIDS cases by name beginning in 2012. HIV cases by name, it would have been at a By 2013, the allocation of this federal funding to significant disadvantage in the allocation of Ryan states will be based entirely on the number of White CARE Act funding. However, a compro‑ HIV and AIDS cases reported by states by name. ProBlEmS in rEPorting SyStEm mEanS loSS of fEdEral fundS to comBat Hiv/aidS HIV Reporting Falls Short. Despite the in the course of routine surveillance. Under cur‑ state’s ongoing shift to name‑based reporting, rent policies and practices, it is likely that Califor‑ California does not have an accurate count of nia will not have an accurate name‑based count HIV cases. As of April 2009, only about 36,000 of persons with known HIV infection for some cases of HIV had been reported by LHJs to the time to come. The situation is different for AIDS. state by name. Based on what is known about Because California authorities have reported nationwide prevalence and the epidemiology of AIDS cases by name since 1983, the state’s AIDS the disease, the OA estimated in 2008 that there database is relatively complete. are actually between 68,000 and 106,000 HIV Lack of Complete Data Affects Federal (non‑AIDS) cases in California. Thus, the current Funding to Prevent and Treat HIV/AIDS. Com‑ name‑based count of 36,000 likely represents pleteness and accuracy of the state’s HIV sur‑ only one‑third to one‑half of actual HIV cases. veillance data are essential for the state to track There are a variety of reasons for this significant current epidemiological trends in the disease and discrepancy. For example, some individuals do coordinate an effective public health response. not know they are infected, and other cases have Reliable data on the prevalence of HIV is also not yet been captured by the name‑based system important if the state is to remain competitive for LegisLative anaLyst’s Office 7 an LaO RepORt federal funds that could assist in the prevention a result, the Ryan White CARE Act funding pro‑ and treatment of the disease. The Ryan White vided to California for HIV code‑reported cases CARE Act provides approximately $125 million is discounted and the state is at a disadvantage in in federal funding per year to California for HIV obtaining federal funding. prevention programs, ADAP, and a variety of Like California, other states are also improv‑ other care and support services. Additional funds ing their reporting systems and increasing the are provided to several local jurisdictions within number of their cases that are reported in com‑ the state that have a high HIV/AIDS prevalence. pliance with federal law. As a result, we cannot However, the state is currently not receiving estimate exactly the financial benefit to California its maximum potential amount of federal funding from improved reporting. However, we estimate from the act because California’s name‑based that a significant increase in the number of cases HIV reporting system is incomplete. As noted reported by name would increase California’s above, the federal law allocates funding based competitiveness for this funding, perhaps increas‑ mainly on each state’s share of the total HIV and ing its grant award by several millions to the low AIDS cases nationally that have been reported tens of millions of dollars annually. Such in‑ by name. States such as California that have not creases in federal funding could offset the state’s yet completed a name‑based count of HIV cases General Fund costs for HIV/AIDS programs, lead‑ are in effect receiving only partial credit for cases ing to a cost savings or slower rate of growth in that it has reported in the past without names. As General Fund costs for these programs. imProving tHE SurvEillancE of Hiv/aidS In the remainder of this report, we discuss database. For example, the names of individuals two recommended improvements to the state’s who receive drugs through ADAP, the state‑run surveillance system for HIV and AIDS that our drug assistance program, are not systematically analysis shows could expedite the transition to a included in the state’s HIV surveillance data‑ name‑based system, thereby helping to ensure base. Recent analysis by the OA indicates that that California receives its maximum share of several thousand HIV‑positive persons may now federal funds. be receiving various state services but are not yet counted by name in the surveillance system. Improving HIV Surveillance Some HIV‑positive individuals who are receiv‑ by Counting All Cases ing services through state‑supported programs Some Clients Who Receive State-Supported administered by LHJs are likewise not reflected in Services Are Not Reported. As mentioned the surveillance database. above, the state provides a variety of programs Some Steps Have Been Taken to Address for individuals with HIV and AIDS. However, the Gaps in Reporting… The OA has taken some state currently has no method for cross‑checking steps to address the gaps in reporting that we to ensure that all individuals who receive these have identified. The OA is modifying consent services are included in the HIV surveillance forms for clients represented in the ADAP data‑ 8 LegisLative anaLyst’s Office an LaO RepORt base, as well as the AIDS Regional Information earlier, laboratories are legally required to report and Evaluation System (ARIES) database (which to the state surveillance system the outcome of includes clients receiving non‑ADAP care servic‑ tests that indicate a diagnosis that someone is es funded through the OA). These changes will HIV‑positive or has AIDS. Currently, however, allow the OA to disclose ADAP and ARIES client laboratories are only allowed to submit HIV re‑ names to local health officers (LHOs). The LHOs, ports by what state law calls traceable mail, such in turn, would be able to disclose client names to as registered mail, or person‑to‑person transfer, providers, thereby facilitating active surveillance such as hand delivery. They are not allowed to at the local level to confirm and report additional send reports indicating an HIV diagnosis to LHJs HIV cases to the surveillance system. Addition‑ electronically. Notably, this is the case even ally, the OA has provided specific guidance and though laboratories are allowed to submit test technical assistance to local health departments results for other types of diseases electronically. to assist them in addressing these surveillance Transmitting data in this manner is labor‑ gaps. intensive, both for laboratories and for local sur‑ ...But Further Steps and Follow-Up Would veillance workers. For example, a large labora‑ Ensure Progress Is Made. In addition to the ef‑ tory that relies on electronic medical records for forts involving the ARIES and ADAP databases, its internal record keeping may nonetheless be we believe further steps could be taken to ensure required to print out a patient’s electronic medi‑ that the state strategically leverages its data re‑ cal record and mail it to an LHJ. The LHJ then sources to improve public health surveillance of must manually enter this data onto a different HIV. For example, similar cross‑checking should form in order to report the case to the state. be performed with state correctional health data Electronic reporting of HIV lab results would systems under the purview of CDCR. In order to be more timely and efficient, and increase the remove legal ambiguity over whether state and accuracy of data collection. Other states—such local public health systems can share confiden‑ as Florida, Illinois, and Texas—have found that tial information with health systems within CDCR centralized lab reporting systems with these and local jails, correctional health systems could capabilities allow better monitoring of the data be identified in the law as permissible entities and improved oversight of local surveillance with which state or local public health entities efforts. Such systems allow surveillance staff to could exchange such data for the purposes of track cases across jurisdictions in a timely man‑ public health surveillance. Finally, we believe it ner and to more efficiently track related diseases, would be beneficial for the Legislature to oversee like sexually transmitted diseases or Hepatitis C, the progress the state is making with using these often seen in the HIV‑positive population. new procedures to improve surveillance. Electronic System Under Development Would Exclude HIV Reports. The DPH is cur‑ Improving HIV Reporting rently developing just such a Web‑based Elec‑ With Electronic Reporting tronic Laboratory Reporting (ELR) system in Electronic Lab Reporting Would Be More conjunction with a Web‑based Confidential Efficient Than the Current System. As we noted Morbidity Report application (called the Web‑ LegisLative anaLyst’s Office 9 an LaO RepORt CMR) for the reporting of a variety of diseases, Ensure Participants in State-Supported including hepatitis, measles, diphtheria, syphilis, Programs Are in the Surveillance Database. We and others. This new system, slated for comple‑ recommend that the Legislature take several steps tion in 2010, is intended to reduce data entry to ensure that persons receiving services through errors, streamline the reporting process to make state‑supported programs are reflected in the it less labor‑intensive, and enhance data security. surveillance database. For example, the electronic system could only ➢ First, we recommend the Legislature be accessed through a secure data network. Any change state law to specify that cor‑ actions to access the data would be tracked, with rectional health systems are permissible system users limited to viewing only the specific entities with which state or local public data they were authorized to view. health entities can exchange confidential We note that, while the reports would be public health data for the purposes of housed in a central location, both the LHJs and public health surveillance. the state would have simultaneous access to the reports. In other words, the state could view the ➢ Second, we recommend the Legislature reports entered into the system for each jurisdic‑ require the OA to assess the discrepancy tion, but would not need to process or approve between the various databases that are reports in order to make them available to LHJs. used to track persons receiving HIV/AIDS This aspect of the system design is critical to en‑ services and the surveillance database, sure that LHJs receive reports in a timely manner. by performing cross‑checking on a regu‑ Current state law, Chapter 449, Statutes of lar basis. 2008 (AB 2658, Horton), requires laboratories to ➢ Third, we recommend the Legislature submit all cases of “reportable disease and con‑ require that the OA report to the Leg‑ ditions” electronically, within one year of the es‑ islature annually, for a period of three tablishment of the new state ELR system. Howev‑ years on the progress being made to er, HIV reports were specifically exempted from address gaps in the surveillance system. this requirement in order to allow DPH sufficient This report should specify what actions time to ensure the new system’s data architecture are being taken to ensure that the state is not at variance with HIV‑specific reporting is leveraging data on persons receiving requirements and that the system would meet state‑supported HIV‑related services to federal standards for HIV reporting. improve the surveillance database, and report what progress is being made on a Recommendations county‑by‑county basis and statewide. We recommend that the Legislature ensure that all individuals receiving state services are If the Legislature finds that progress is not represented in the state surveillance database being made in addressing these surveillance gaps and require that HIV reports be included in the based on the recent changes in OA policy and state’s new electronic reporting system. practice, then it should re‑assess at that time 10 LegisLative anaLyst’s Office an LaO RepORt whether further changes are needed to the sur‑ under the Ryan White CARE Act for federal veillance system. Finally, the OA should request funding, and in a form that ensures that LHJs additional statutory authority it deems neces‑ have uninterrupted and immediate access to all sary to improve surveillance of HIV, or request reports relating to their jurisdiction. If DPH deter‑ changes to state law that it identifies as restricting mines that any statutory changes are necessary in the department’s ability to accurately track HIV order to allow HIV to be reported electronically, (provided it does not run afoul of general privacy it should advise the Legislature so that it can and security provisions that apply to any confi‑ modify state law to allow electronic reporting to dential health‑related information). move forward. Require That HIV and AIDS Cases Be We would further recommend the enactment Included in Electronic Reporting. We recom‑ of legislation requiring laboratories to electroni‑ mend that DPH be directed to modify the state’s cally report HIV test results within one year of planned central ELR system to ensure that it is the modification of the state’s central ELR sys‑ capable of including the reporting of HIV and tem to incorporate HIV/AIDS. We note that this AIDS test results. These modifications should change would require DPH to modify current be proposed in a form that makes them eligible regulations that govern HIV reporting. concluSion The state’s HIV/AIDS surveillance system federal funding the state receives could be used consists of identification of cases by laboratories to offset General Fund costs. Accordingly, in this and health care providers, reporting of cases by report, we recommend that the OA develop a local health departments to the state, and state process to cross‑check the records of individuals reporting of total number of cases to the federal in state‑supported HIV and AIDS programs to government. The state’s fairly recent shift to a ensure that they are included within the surveil‑ name‑based HIV surveillance database means lance database, and modify ELR rules that apply that its data on the number of HIV cases is not to other diseases to HIV cases. These two chang‑ complete, putting it at a major disadvantage in es would make the state’s reporting of HIV cases receiving federal funding to combat the disease. more complete, improve the state’s surveillance Efforts to enhance the number of cases reported of the HIV epidemic in California, and increase will increase the state’s competitiveness for the state’s competitiveness for federal funds that federal funding for HIV and AIDS. Any additional are available for AIDS‑related programs. LegisLative anaLyst’s Office 11 an LaO RepORt LAO Publications This report was prepared by Lisa Murawski, and reviewed by Shawn Martin. The Legislative Analyst’s Office (LAO) is a nonpartisan office which provides fiscal and policy information and advice to the Legislature. To request publications call (916) 445-4656. This report and others, as well as an E-mail subscription service, are available on the LAO’s Internet site at www.lao.ca.gov. The LAO is located at 925 L Street, Suite 1000, Sacramento, CA 95814. 12 LegisLative anaLyst’s Office