Department of Health won't budge on names reporting
Council of the District of Columbia
Washington, D.C. 20001
April 15, 1999
Craig Howell, President
Gay and Lesbian Activists Alliance
P.O. Box 75265
Washington, D.C. 20013-5265
Attached is the government's response to my recent letter regarding name-based HIV surveillance. You will see that the Department of Health appears to be inflexible on this issue. I remain committed to working with you.
Councilmember At Large
cc: Rick Rosendall
Department of Health
825 North Capitol Street, N.E.
Washington, D.C. 20002-4210
April 12, 1999
The Honorable Phil Mendelson
Councilmember (At Large)
Council of the District of Columbia
441 Fourth Street, N.W.
Washington, D.C. 20001
Dear Councilmember Mendelson:
The purpose of this letter is to respond to your letter inquiring into the Department of Health's position regarding the implementation of HIV reporting.
Currently, the Administration for HIV/AIDS is conducting community dialogue on HIV surveillance with various community and public groups/organizations. It is hoped that through these presentations and discussions our community will come to the conclusion, as did the Department of Health, that the District must implement a HIV name-based case surveillance system. The Administration for HIV/AIDS is working towards the goal of implementing HIV case surveillance in the first part of fiscal year 2000.
On December 10, 1998, the Centers for Disease Control and Prevention (CDC) published guidelines for states to implement HIV surveillance. This is a major change from the current surveillance supported nationwide by CDC; AIDS name-based surveillance.
The CDC guidelines omitted the timeframe for states to implement HIV surveillance. However, they have been working with states on this changes [sic] in policy and practice for over two years. CDC recommends that states adopt a name-based HIV surveillance methodology. This methodology is consistent with current AIDS case surveillance in all states and the District of Columbia.
Some members of the community are opposed to name-based HIV-surveillance. This is due to historical experiences of discrimination and fear of losing confidientiality about one's HIV status. It is also believed that name-based surveillance will deter people in certain high-risk population from getting tested.
CDC released the results of a study involving six states that changed to HIV name-based reporting. The study illustrated that there was not an adverse impact on persons seeking HIV tests. Four of the states actually reported an increase during the transition period.
The Administration of HIV/AIDS (AHA) has collected facts and information on the issues and options for HIV case surveillance over the past year. We approached the subject matter openly without any original position on the matter. As we reviewed the information and met with others at CDC and around the country and came to the conclusion that currently the facts support a name-based HIV surveillance system. Three key reasons support this position:
- A Unique Identifier System has not been successfully implemented to date; this includes the State of Maryland;
- CDC guidelines are consistent with and support a name-based surveillance methodology; and
- Providing anonymous testing provides additional assurance for encouraging HIV testing.
Currently, thirty-four states have implemented HIV name-based case surveillance. The District is currently one of eight states that are in a non-reporting HIV status. It is anticipated that future Federal funding formulas for HIV/AIDS initiatives and services will be based on HIV surveillance data.
The Administration for HIV/AIDS is prepared to brief you and members of your staff on the HIV case surveillance. Enclosed are additional information points on the issue.
Please feel free to contact Ronald E. Lewis, Administrator, Administration for HIV/AIDS at your convenience at (202)727-2500, ext. 9615. Department of Health's new address is 825 North Capitol Street, N.E., 4th Floor, Washington, D.C. 20002.
Thanks for your consideration and support.
Marlene N. Kelley, M.D.
cc: Sandra Allen
Public law in the District of Columbia has required AIDS surveillance, or the monitoring of end-stage disease, since July 1983. Traditionally, this data has provided the foundation for profiles and projections or "snapshots" of the epidemic. Utilizing this information, government agencies such as the Centers for Disease Control and Prevention (CDC) and the Human Resources Services Agency (HRSA) developed regional, state, and community-based prevention education and treatment programs tying AIDS incidence to funding levels. Sixteen years later the paradigm has shifted. An article in the October 1997 edition of the New England Journal of Medicine states:
"Unless we revise our surveillance system, health authorities will not have reliable information about the prevalence, incidence, and future directions of HIV infection, the kinds of behavior that currently increase the risk of HIV transmission, or the heightened impact on specific sub-populations, such as racial and ethnic minorities and women."
Epidemiologists at CDC concur. New and effective anti-retroviral treatments have slowed the rate at which HIV escalates to full-blown AIDS, spurring serious debate on the need for HIV surveillance. Monitoring the epidemic utilizing end-stage disease data is no longer a viable source of information. The current system can not adequately identify demographic trends in infection. It is for these reasons that the CDC is now strongly advocating the establishment of HIV surveillance systems aimed at attaining the following public health goals:
- Target primary and secondary prevention.
- Evaluate the efficacy of prevention activities.
- Determine eligibility for federal, state, and local health resources for services for HIV-infected individuals.
- Project future resources needed for care and prevention efforts.
- Educate the public about the scope and impact of the epidemic. [See Footnote 1]
In short, acquisition of HIV infection data will enable metropolitan areas to develop more effective strategies to combat escalating infection rates. How to accomplish collection of such data has yet to be determined. To assist To assist in framing the issues, following is a brief summary of the strengths and weakness of the two most prominent methods of developing an HIV surveillance system. The first is referred to as the traditional public health method. The second is the less utilized system of unique identifier. Provided is (1) a general description of each system, (2) a comparison of cost and administration, (3) linkages to early intervention and treatment, (4) allocation of resources and planning, and (5) issues of concern.
The Two SystemsTraditional Public Health
The traditional public health approach to surveillance efficiently and effectively identifies relevant demographics and risk behavior information. Physicians are required to submit names, demographic information, risk factors, laboratory data, and clinical conditions to the local health department. Encrypted data without names is then forwarded electronically from local health departments to the CDC, guaranteeing patient confidentiality. This is the system currently used to monitor end-stage disease in the District of Columbia.
The unique identifier HIV surveillance system requires assignment of a code, such as the last four digits of the social security number, along with demographic, risk factors, laboratory data, and clinical conditions, all which are also forwarded to the local health department.
Cost and AdministrationTraditional Public Health
Building upon the established mechanism for monitoring the AIDS epidemic is both economical and efficient in surveillance of HIV. Laboratories, hospitals, and physicians can easily adapt procedures and protocols to effectively accommodate the changing surveillance needs. Provider noncompliance would, therefore, be minimized. This system has proven to be timely, reliable, and comprehensive without duplication. The results are solid projections with accuracy and clearly defined characteristics of the epidemic.
A unique identifier system is costly to create and implement, and complex to administer. The burden of assigning unique identifier codes would be at the level of the health care providers and laboratories. With such decentralization, confidentiality and security could not be guaranteed. In the January 1997, the Morbidity and Mortality Weekly Report suggested:
"...several problems with these UI systems, including a high number of reports with incomplete codes (approximately 30-40%), low rates of completeness in reporting (approximately 25-50%), difficulty in conducting follow-up on specific cases, and the absence of behavioral risk data..."
Additionally, there is little experience in creating, implementing and administering this type of reporting system. Currently only Maryland uses this type of reporting system. The State of Texas had initiated a UI system and discontinued it in 1998.
Linkages to Early Intervention and TreatmentTraditional Public Health
The traditional public health approach to surveillance allows the possibility for patient linkages to early intervention and treatment. This is essential as we now known [sic] that the earlier HIV infected individuals access services and treatment, the better will be the quality and length of life.
A major drawback of the unique indentifier system is that it can not allow efficient or effective follow-up to provide access to treatment and services. The AIDS Action Council notes, for example, that:
"Should an expansion of Medicaid be created, for example, unique identifier reporting would not enable public health officials to locate HIV positive individuals to tell them of this change and advise them about their eligibility for the program."
Allocation of Resources and PlanningTraditional Public Health
Using the traditional public health surveillance methodology would result in health care planning based on an accurate assessment of the distribution of HIV. The Department of Health could concentrate limited resources on extremely targeted populations and geographic areas based on accurate epidemic trends.
Utilization of the unique identifier system will not result in data that is mutually exclusive. Program planning and allocation of resources based upon such a system will be cumbersome, particularly to associate specifics in data sets.
Issues of ConcernConfidentiality and Security
"Since 1981 there has been one reported breach of confidentiality of a state AIDS reporting system... The strictest and most comprehensive protections of health data apply to government-held information generally and to HIV-related data specifically." [See Footnote 2]
Yet, the most fervent opposition to the traditional public health approach to HIV surveillance involves issues of confidentiality. To quell this fear, CDC will soon publish a guidance to outline practices and performance criteria ensuring quality and confidentiality of surveillance systems as states expand and refine current systems. Further, CDC warns that
"A UI-based system may not reduce the potential risk for a breach of confidentiality when providers are required to maintain surveillance logs." [See Footnote 3]
A decentralized system of record keeping mandates the creation of multiple lists, creating a costly and cumbersome system with potentially fewer guarantees of confidentiality.
Deterrence of HIV Testing
Some community leaders challenge the wisdom of a mandate on states to implement HIV surveillance, predicting that such action would cause at-risk individuals to forgo testing for fear of name reporting. Preliminary findings indicate something else.
"Confidential HIV reporting ... did not appear to affect use of HIV testing in publicly funded counseling and testing programs." [See Footnote 4]
"Although definitive studies have yet to be published, preliminary data indicate that HIV case reporting does not provide a distinct disincentive to testing." [See Footnote 5]
Such finding aside, anonymous testing for HIV should be offered. This would provide an alternative for those individuals who continue to have concerns about confidentiality and discrimination issues while preventing delays in accessing care and treatment. Of the 31 states that provide HIV surveillance, 21 states provide anonymous testing. All other states and the District of Columbia provide anonymous testing. It is cautioned, however, that use as a sole means of monitoring the epidemic is impractical, primarily because of the high incidence of duplicate testing.
ConclusionThere is urgency in providing a HIV surveillance system that will meet the changing needs of the epidemic. The public health needs of all populations mandate utilization of collected data. This issue paper provides a cursory view into the ongoing debate about the best approach to providing efficient, effective, confidential, secure HIV surveillance system. The choices made must enable the accurate monitoring of the epidemic, provide factual trend information, target resources, plan for prevention and service programs, and assist in the process of linking individuals to early intervention services, counseling and testing, and treatment for HIV.
Submitted by: Ronald E. Lewis, MPP
Administrator, Administration for HIV/AIDS
January 12, 1999
Footnote 1. AIDS Action Council, October 1997
Footnote 2. U.S. Centers for Disease Control and Prevention Update, January 1998
Footnote 3. U.S. Centers for Disease Control and Prevention Update, October 1998
Footnote 4. JAMA, October 28, 1998
Footnote 5. NEJM, October 16, 1998