Comments on Proposed HIV Reporting Regulations R-19-00
May 21, 2001
Office of Regulations
California Department of Health Services
714 P Street, Room 1000
P.O. Box 942732
Sacramento, CA 94234-7320
Re: Proposed Regulations Regarding Reporting of HIV, R-19-00
Dear Sir or Madam:
I am pleased to have this opportunity to submit written testimony regarding the proposed regulations on HIV reporting by health care providers and laboratories to local health officials.
I am writing to you today as someone engaged in HIV prevention research and test counseling for the past eight years. I was certified as a California HIV test counselor in 1993, and have trained numerous test counselors while working as a test site administrator at a test site in Northern California since 1995. During that time I have conducted extensive ethnographic research on HIV testing by observing test counseling sessions, interviewing test clients, counselors, trainers, and staff of the Office of AIDS. One focus of my research has been how risk assessment forms are used during the counseling session and how this frames the context for risk reduction counseling. As Prevention Editor of UCSF HIV InSite from 1997-2000, I have closely watched trends in HIV surveillance policy both in California and nationally. I am currently a Research Specialist at the University of California – San Francisco Center for AIDS Prevention Studies where I conduct qualitative research for several high-profile HIV prevention interventions.
I am currently working with a diverse group of concerned citizens, service providers, privacy advocates, researchers, and officials from health jurisdictions throughout California, which was convened to discuss changes in anonymous testing policies and the proposed HIV reporting regulations. After reviewing the proposed regulations as outlined by DHS (R-19-00), we concur that a non-name based system of HIV reporting in California is critical and yet, we remain greatly concerned with the regulations as currently proposed. I am writing to you today as someone who, based on my experience as an anonymous HIV test counselor, counseling trainer, test site administrator, and public health researcher, strongly believes that the draft regulations will not be acceptable to the communities with which I work – and therefore, will not be effective in serving the purpose for which they are constructed. I am troubled that the work that has been done between community-based organizations and advocates and the State over many years does not seem to be adequately reflected. I therefore urge DHS to seriously consider the following concerns regarding concurrent changes in anonymous testing programs which I believe will have a negative impact upon DHS’s ability to ensure effectiveness and acceptability of services for those seeking HIV testing and treatment and to maintain the integrity and accuracy of HIV reporting.
Having said that, I want to be perfectly clear that I support efforts by the California Department of Health Services (DHS) to implement an HIV surveillance system without the use of an individual’s name or other personally identifying information. It is absolutely essential that HIV reporting be conducted using a non-name code (unique identifier) to enable public health officials to track trends in the epidemic without deterring individuals from seeking HIV testing and treatment. I also support, with the reservations discussed below, the use of unique identifiers to track the number of unique test clients.
The Changing Context of HIV Surveillance
Despite advances in therapy and testing technologies, HIV remains a deadly, expensive, and highly stigmatized disease that requires a very different approach to privacy and surveillance than other sexually transmitted diseases. The persistence of social stigma and mistrust of HIV surveillance is occurring in the shadow of three concurrent legislative trends: the rise of legislation criminalizing HIV transmission, politically motivated weakening of legislation protecting individual privacy of HIV testing records, the integration of personal medical data from various private and public health institutions using electronic databases and networks. Laws regulating privacy of medical records -- and the conditions under which informed consent for disease reporting is obtained -- are continually being challenged as disease surveillance, law enforcement, and HIV testing programs rely more and more on electronic databases linked through intranets and the Internet. In Colorado, a state that has maintained confidential HIV surveillance records for many years, a law was recently enacted requiring public health officials to reveal previous HIV testing information about people charged with a sexual offense when requested by the criminal justice system. An individual convicted of a sexual offense in Colorado can be sentenced to three times the maximum penalty for that offense if public health records show the individual had been notified of his or her HIV infection prior to the crime. Regardless of when the previous HIV test took place, the law contradicts the informed consent for the initial HIV testing, which was intended for public health purposes only (Morin, 2000).
The only way to adequately safeguard the public’s trust in a reporting system is to maintain complete anonymity for those who test at anonymous test clinics. If the information, such as the complete date of birth and first letter of the last name, are never collected in the first place, the opportunity and therefore the temptation to misuse HIV testing information will not exist.
The End of Anonymous Testing?
Changes to the HIV Counseling and Information Form (HIV5, DHS 8458 11/1/2000) have created the perception that anonymous testing at state-funded test sites in California has been eliminated. Beginning January 1, 2001, anonymous test clients are being asked for their date of birth and first initial of their last name. This information in combination with zip code, ethnicity, and gender makes it possible to crosslink test clients with other medical databases. Collection of identifiers that can easily be easily traced to individuals seeking anonymous test is a travesty of the fundamental tenet of voluntaristic HIV prevention policy initiated when the first Alternative Test Sites were established in 1985. The CDC has consistently advocated that anonymous testing be provided, particularly in states implementing named HIV reporting. Despite the CDC’s efforts, eleven states have eliminated anonymous testing while adopting either named reporting. Surely, it is my hope that California will not be the next state to eliminate anonymous testing as an option for its citizens.
The elimination of anonymous testing in the context of HIV reporting is a fundamentally misguided approach to public health that can only serve to drive the epidemic underground. Research indicates that many high-risk individuals who test anonymously would avoid testing if their identity were to be reported to the state. Furthermore, anonymous testing has proven to be a more reliable means to get people into early treatment than confidential testing. Research has shown that the availability of anonymous testing reduces the average delay between deciding to get tested and actually going for the test by more than one half, from a mean of 12 months to a mean of 5 months. Individuals who test anonymously are far more likely to return for their results than those who test confidentially.
Not only was the decision to collect identifying information from anonymous test clients made in face of significant opposition from community groups, public health officials, and anonymous HIV test site administrators, but it is also in clear violation of DHS' own HIV Testing guidelines. These guidelines state unequivocally,
Clients never provide their name or any other personal identifying information at any time during the course of anonymous service. Personal identifiers include any distinguishing reference such as: name, social security number, date of birth, medical chart number, address or phone. (California DHS, Office of AIDS, HIV Counseling and Testing Guidelines, 1997: IV.3).
In response to these concerns, your office has suggested that clients have the right to refuse to provide these identifiers. Such a statement reflects a complete disregard for informed consent as well as a profoundly limited understanding of the test counseling process at anonymous test sites. The current system, in which counselors are required to complete a lengthy form containing hundreds of data points for each client, has established an exchange system whereby clients are expected to pay for their "free" service with their personal information. The process of collecting sensitive and even incriminating information from test clients has become an entirely routine procedure despite the fact that participants do not understand the purpose of collecting this information. Counselors typically misrepresent the form as a method the state uses to track trends in the epidemic. Given the long established context of anonymous HIV testing in which the most personal forms of information are routinely exchanged in return for a "free" blood test, the addition of the date of birth and first letter of the last name will hardly raise an eyebrow. Essentially, the DHS argues that clients seeking an anonymous test have the option to remain anonymous only if they refuse to answer the counselor’s questions. It is disingenuous to argue that test clients who are conditioned to exchange personal information for a "free" service will understand the potential ramifications of providing identifiers during an ostensibly anonymous encounter. Testing should be either confidential or anonymous and the differences between these two services should be clear and unambiguous.
Clients should always be informed how personal information may be used by the state. This is essential in order to maintain trust in the system so that people will not be deterred from testing and so that people that do test feel comfortable enough to provide accurate data. Despite the controversial nature of these changes, the DHS has not adequately stated the purpose of collecting identifiers from anonymous test clients. According to the Guidance for Completing the HIV Counseling Form (HIV-5):
"The matching criteria will be made up of the first letter of the client’s last name, date of birth, race and gender codes. Additional CIF information can also be looked at to further distinguish unique records. The purpose of the matching criteria is an attempt to anonymously identify unique records to determine the number of individuals utilizing HIV C&T services as opposed to only knowing the number of services provided. The matching criteria would also enable linking the C&T information to other data sources." (Guidance for Completing the HIV Counseling Form, November 2000:6; italics mine)
While the goal of using unique identifiers to count the number of test clients may have a rationale for fiscal purposes, the purpose of linking to "other data sources" – presumably confidential – raises additional concerns about the anonymity of the services. Coincident with the changes in the HIV5 form, a community health outreach encounter form (VBIO contact form) was updated in March 2001 to collect the following identifiers: first and last letters of the last name, number of letters in the last name, "If no initials Last Name" (sic), US city or foreign country of birth, date of birth, and "other demographic." The contact form, designed to be carried by street outreach workers, includes incriminating sexual and drug using information including HIV status. Like the HIV5 form, the VBIO contact form includes a series of checkboxes for referrals to other services, both anonymous and confidential. Tracking anonymous test clients to and from confidential services, such as outreach, mental health, and STD clinics represents yet another violation of anonymity.
In addition to the above concerns, the collection of identifying information that can be easily cross-referenced with other medical records creates the opportunity – and hence an unnecessary temptation -- to misuse private information disclosed by test clients. All data entry from HIV5 is decentralized, meaning that each health jurisdiction is responsible for entering all the data from the paper forms into the HIV5 database. While DHS can protect the information once it is sent to Sacramento, there is no control of the data in the hands of thousands of individual test counselors and local public health officials at the 600 plus test sites currently using the HIV5 form. Test sites and local health departments compile databases containing the demographic information of clients for various purposes related to contract and fiscal management. This was never a concern when data contained no identifiers such as date of birth and first initial of the last name, however the new form creates a dangerous opportunity for unintentional and unlawful linking and disclosure of testing information. The existence of penalties for such disclosures provides less of a deterrent than would a UI system that is truly anonymous.
The timing and content of recent changes made by DHS to the information that is to be collected at anonymous testing sites makes it appear as though the proposed HIV reporting system is linked to the changes in anonymous HIV testing. New, additional identifiers that anonymous test sites must gather are similar to information gathered by confidential sites that are required to report test results. This can lead those who are seeking testing to conclude that anonymous testing no longer exists. In order for the new HIV reporting system to be accepted, effective and accurate, it must be made clear to HIV-affected communities and at-risk individuals that there remains a true division between anonymous and confidential testing sites and that in neither case is identifying information reportable to the State. Thus, the new HIV Counseling and Information Form (HIV5, DHS 8458 11/1/2000) must be altered to comply with existing DHS guidelines and sound public policy.
I appreciate the opportunity to provide you with comments and recommendations and look forward to further dialogue on these matters. I am most anxious to see implemented a truly non-name based HIV reporting system and support continued efforts by the State to develop such a system. I hope to be able to fully support an improved set of regulations that addresses my concerns regarding the potential acceptability, effectiveness and accuracy of a non-name based HIV reporting system for California. I encourage DHS to consult with community advocates, test site administrators, HIV prevention researchers, and people living with HIV/AIDS on an ongoing basis to help ensure the success of this important effort. If I can be of assistance in modifying the regulations or helping to encourage support for a modified system, please do not hesitate to call me at 510 816-6943 or email me at nsheon@psg.ucsf.edu. Thank you for your consideration of my concerns related to these regulations.
Sincerely,
Nicolas Sheon, Ph.D.
74 New Montgomery St, 502
San Francisco, CA 94105
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