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JAMA HIV/AIDS Information Center thical Opinions on HIV/AIDS Issues
http://www.ama-assn.org/special/hiv/policy/testing.htm
JAMA
HIV/AIDS Information Center
HIV/AIDS
The Journal of the American Medical Association
Policy
References
Additional
HIV Testing and Reporting
Resources
By Ronald Bayer, PhD
Professor, School of Public Health
Columbia University
New York, NY
(Posted March 1996)
Overview
From the outset, the test developed to detect antibody to HIV mired in
controversy.
Uncertainty about the significance of the test's findings and about its quality and
accuracy provided the technical substrate of disputes that inevitably took on a
political and ethical character, since issues of privacy, communal health, social
and economic discrimination, coercion, and liberty were always involved.
The availability of the test, first used on a broad scale in blood banking, quickly
raised a host of key questions. For example, how would the test be used outside
of the testing context? Would groups at increased risk for AIDS be encouraged
to take the test? How forceful would such encouragement be? How would those
who agreed to be tested be counseled about the test's significance for themselves
and others? Would and could the results be kept confidential? Would voluntary
testing be a prelude to compulsory screening? What would be the consequence
of testing for the right to work? To go to school? To obtain insurance? To bear
children? To remain free?
Each of these questions would force a confrontation over the fundamental matter
of the relationship between the defense of privacy and the protection of the
public health, over the roles of voluntarism and coercion in the social response to
the threat of AIDS.
The issue of medical confidentiality is so important in the HIV testing and
reporting context because it has been widely recognized as a central element in
the effective response to AIDS. Not only does the principle rest upon ethical
norms of autonomy and respect for privacy, but it has been viewed as crucial to
encouraging those most at risk to come forward for HIV testing and for clinical
attention.
But as important as the principle of confidentiality is, it has its limits. When
competing social concerns are of sufficient magnitude, physicians and ethicists
have acknowledged that exceptions may be made. The definition of when the
concerns reach the standard of sufficient magnitude, however, has always been a
matter of grave dispute.
Early in the century, for example, private practitioners found themselves in
conflict with public officials who believed that the public health required that the
names of those with tuberculosis and venereal disease be reported to confidential
registries for purposes of epidemiological surveillance, contact investigation and
1 of 4
11/1/98 5:41 PM
JAMA HIV/AIDS Information Center thical Opinions on HIV/AIDS Issues
http://www.ama-assn.org/special/hiv/policy/testing.htm
clinical follow-up.
These debates resurfaced in the context of the AIDS epidemic. Interestingly, in
the epidemic's early years, when state health departments moved to require the
reporting of the names of those with AIDS, there was little protest because of a
near universal recognition that an understanding of the new disease required
complete surveillance data.
Where there as been protracted bitter controversy and ethical dispute has been
over the question of whether the logic of AIDS reporting requires that the names
of those with asymptomatic HIV be reported as well. The debate has been
largely framed by the question of whether such reporting would have the
counterproductive consequence of discouraging HIV testing or whether it would
enhance the public health goals of surveillance and contact tracing.
During the past decade, the debate over HIV testing has evolved, driven by
changing social concerns and fears about casual transmission, conceptions of the
role of the test in fostering behavioral change, and advances in therapeutics that
have altered the justification for identification of those with asymptomatic
infection.
In the first years after the HIV test was developed, ethical analyses tended to
underscore the need to protect the privacy interests of those who were tested
while encouraging voluntary testing. (2) The major exception to the principle of
voluntariness that was embedded in the prevailing ethical framework was
blinded or anonymous testing for purposes of epidemiological surveillance. (4)
Debate also emerged over the role of testing in both health and life insurance. (5)
Proponents of testing would argue that it merely represented an extension of
sound underwriting principles; opponents would characterize such screening as
the basis for invidious discrimination.
Conflict also has occurred over the question of screening travelers, immigrants,
and refugees. (6) Proponents of such screening have depicted it as a rational
approach to preventing the "transmission" of new infections across borders;
those who have resisted such efforts have claimed that in the case of travelers,
HIV screening would present a logistical nightmare with profound human rights
implications. In the case of immigrants and refugees, opponents of screening
have emphasized the importance of treating HIV no differently than other
chronic conditions.
The most heated controversy has centered on the question of newborn testing
and testing during pregnancy. In these cases, the debate has centered on the
question of whether the child's interest in identification for purposes of
therapeutic intervention or for purposes of prophylaxis against infection can
override the claims of maternal privacy. (7,8) This debate, like others,
underscores in an important way the central ethical concern about privacy and
voluntarism in the decade-long controversy over HIV testing.
Back to top
References
1. Levine C, Bayer R. The ethics of screening for early intervention in HIV
disease. Am J Public Health. 1989;79:1661-1667.
2 of 4
11/1/98 5:41 PM
JAMA HIV/AIDS Information Center thical Opinions on HIV/AIDS Issues
http://www.ama-assn.org/special/hiv/policy/testing.htm
2. Field MA. Testing for AIDS: uses and abuses. Am J Law Med.
1990;16:33-106.
3. Bayer R, Lumey LH, Wan L. The American, British and Dutch responses to
unlinked anonymous HIV seroprevalence studies: an international comparison.
AIDS (UK). 1990. Reprinted in Law Med Health Care. 1991;19:3-4.
4. Isaacman SH, Miller LA. Neonatal HIV seroprevalence studies: a critique of
national and international practices. J Legal Med. 1993,14:413-461.
5. Stone D. The rhetoric of insurance law: the debate over AIDS testing. Law
Social Inquiry. 1990;15:2.
6. Gostin LO, Cleary PD, Mayer KH, Brandt AM, Chittendon EH. Screening
immigrants and international travelers for the human immunodeficiency virus. N
Engl J Med. 1990;332:1743-1746.
7. Bayer R. Women's rights, babies' interests: ethics, politics, and science in the
debate of newborn screening, In: Minkoff H, DeHovitz J, Duerr A, eds. HIV
Infection in Women. New York, NY: Raven Press; 1995:293-307.
8. Working Group on HIV Testing of Pregnant Women and Newborns. HIV
infection, pregnant women, and newborns: a policy proposal for information and
testing. JAMA. 1990;264:2416-2420.
Back to top
Additional Resources
Blood
Bayer R. Gays and the sigma of 'bad blood.' Hastings Cent Rep. 1983;13:2, 5-7.
Murray T. The poisoned gift: AIDS and blood. Milbank Q. 1990;68(suppl
2):205-225.
General
Bayer R, Levine C, Wolf SM. HIV antibody screening: an ethical framework for
evaluating proposed programs. JAMA. 1986,256:1768-1774.
Reporting
Fox D. From TB to AIDS: value conflicts in reporting disease. Hastings Cent
Rep. 1986;16(suppl):11-16.
Francis DP, Singleton JA. Reporting of HIV-1 infection through the provision of
essential services. J Acquir Immun Defic Syndr. 1993;6:285-286.
Screening and Employment
Gostin LO. The AIDS Litigation Project: a national review of government and
human rights commission decisions, II: discrimination. JAMA.
1990;263:2086-2093.
Back to top
3 of 4
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with support from Glaxo Wellcome Inc.
©
1997 American Medical Association. All rights reserved.
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Caution in Implementing HIV Surveillance System Resolution
http://www.glma.org/pnamesreporting.html
Caution in Implamenting HIV
Surveillance System
GLMA Public Policy
Resolution: 110-97
Approved: October 25, 1997
WHEREAS, treatment of HIV/AIDS has vastly improved in the past several years, which has resulted in
declines in AIDS diagnosis and death; and
WHEREAS, the Centers for Disease Control and Prevention (CDC) AIDS Surveillance system,
especially for reporting trends in infection, is no longer adequate; and
WHEREAS, the CDC is preparing to advise states that HIV case reporting must be implemented and
that named HIV surveillance is reasonable; and
WHEREAS, research shows reluctance by some to be tested for the antibodies to HIV if the names those
who test positive are to be reported to the state; and
WHEREAS, discrimination and bias against those who are HIV infected still occurs, and once privacy is
breached it can not be restored; and
WHEREAS, named HIV reporting would result in greater risk of exposure to breaches in privacy for
HIV infected individuals who could remain on a "list" years longer than those currently being reported
with an AIDS diagnosis; and
WHEREAS, state assurances to protect the confidentiality of individuals in a named HIV reporting
system cannot be guaranteed (and in the past has not been) as policy and procedures regarding
maintenance of such a list could change over time; and
WHEREAS, individuals who participate in high-risk behaviors should be encouraged to get tested and
get into treatment if HIV-infected, not frightened away from testing and treatment because of fear of the
loss of confidentiality; and
WHEREAS, a named HIV case report surveillance system will still not adequately represent the
epidemic as it will provide information only on those choosing to be tested, therefore be it
RESOLVED: That the Gay and Lesbian Medical Association strongly opposes named HIV reporting as
it is detrimental to testing and treatment efforts, would be contrary to public health surveillance and
prevention, and is not needed for tracking the epidemic; and be it further
RESOLVED: That GLMA encourages the CDC to further study and improve unique identifier systems
and other solutions, such as encryption, for the complete protection of confidential medical data before it
continues any more efforts to promote a surveillance system involving named reporting of HIV; and be
it further
RESOLVED: That GLMA supports improved HIV surveillance so that the epidemic can be more
accurately tracked and resources devoted to prevention and services can be most effectively targeted;
and be it further
RESOLVED: That GLMA encourages the CDC to expand the use of anonymous population-based
seroprevelance studies to more accurately track the epidemic; and be it further
RESOLVED: That GLMA believes that anonymous testing is an essential component of the public
health response to the HIV epidemic and must be fully funded and enhanced in every state, and be it
1 of 2
10/25/98 5:14 PM
Caution in Implementing HIV Surveillance System Resolution
http://www.glma.org/pnamesreporting.html
further
RESOLVED: That GLMA strenuously rejects any plan to link surveillance with any other public health
effort of disease control, such as partner notification.
For futher information contact:
Peter Sawires, Public Policy Associate: [email protected]
2 of 2
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Importance of Accurate HIV surreillance
Systems
HIV affects
AIDS kills
It is important to have an accurate
understand ing of extent B scope of
epidemic in order to allocate limited
resorices,
The Advocate Community les Favors Non-Name
Based Sumeillance Systems.
ATDS
The advocate community has come out strongly
in favor of non-hame based survillance
systems (Name groups There is concern
that mandatory name reporting -0 discovrage
treatment $ testing 2 Rccords for Longer
period of time. The use of Privacy Protection D
costes or other non names Deased
latter data, privacy protections.
Damas Names Based Systems Provide
greater Privacy Protections
Privacy concerns are huge - once
briached, can't be undone
HealthGate - Document
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HealthGate Document
Record 1 from database: AIDSLINE
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Title
CDC says names, not numbers, do better job in tracking HIV. Centers for Disease Control and
Prevention.
Author
Anonymous
Address
Source
AIDS Policy Law, 1998 Jan 23, 13:1, 6-7
Abstract
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.
Language of Publication
English
Unique Identifier
98703272; AIDS/98703272
Order full text for this document
MeSH Heading (Major)
Disease Notification *MT; HIV Infections|*EP; Population Surveillance|*MT
MeSH Heading
Adult; Centers for Disease Control and Prevention (U.S.); Confidentiality; Contact Tracing|MT;
Human; Maryland; Names; Registries; United States|EP
Publication Type
NEWSLETTER ARTICLE
ISSN
0887-1493
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TITLE:
The University of Minnesota Youth and AIDS Projects'
Adolescent Early Intervention Program: a model to link
HIV-seropositive youth with care.
AUTHOR:
Remafedi G
AUTHOR AFFILIATION:
Department of Pediatrics, University of Minnesota,
Minneapolis, USA.
SOURCE:
J Adolesc Health. 1998 Aug;23(2 Suppl):115-21.
SECONDARY SOURCE ID:
MED/98376077
ABSTRACT:
The survival of human immunodeficiency virus (HIV)-positive
adolescents may be abbreviated by delays in health care
delivery. Methods of linking youth with services have not been
well studied. With support from the Special Projects of National
Significance Program, the Youth and Acquired
Immunodeficiency Syndrome (AIDS) Projects' (YAP)
Adolescent Early Intervention Program offers early
intervention health care services to all affected youth in
Minnesota, a state with mandatory reporting of HIV/AIDS
cases. The conceptual framework is a novel application of
traditional public health disease surveillance strategies to link
HIV-positive adolescents with health care services. The target
population is composed of all 13-22-year-old HIV-positive
persons reported to the Minnesota Department of Health
(MDH). MDH staff locate and contact HIV-positive youth,
conduct structured interviews regarding health status and
needs, and facilitate enrollment at YAP. Sixteen male and 20
female participants (mean age 21 years; 56% people of color;
32% gay or bisexual) reported serious health risks, including
inconsistent condom use (83%), poverty (78%), high school
dropout (56%), unemployment (50%), illegal conduct (50%),
medical debt (42%), unstable living situations (33%), running
away (33%), substance abuse (33%) and attempted suicide
(28%). More than one third reported each of six HIV-related
symptoms. Seventy-five percent of participants sought
advocacy/case coordination; 56%, clinical trials of experimental
therapies; and 50%, vocational training and access to
entitlement/eligibility programs. Linking HIV-positive youth to
care is a valuable extension of the work of disease intervention
specialists in states with similar reporting systems.
MAIN MESH HEADINGS:
Acquired Immunodeficiency Syndrome/*PREVENTION &
CONTROL
Adolescent Health Services/*ORGANIZATION & ADMIN
*Models, Organizational
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National Health Programs/*ORGANIZATION & ADMIN
ADDITIONAL MESH
Acquired Immunodeficiency Syndrome/THERAPY
HEADINGS:
Adolescence
Adult
Case Management/STANDARDS
Female
Health Education/METHODS
Human
HIV Infections/PREVENTION & CONTROL
HIV Infections/THERAPY
Intervention Studies
Male
Minnesota
Program Evaluation
Risk Factors
Support, U.S. Gov't, P.H.S.
PUBLICATION TYPES:
JOURNAL ARTICLE
LANGUAGE:
Eng
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TITLE:
Protection of HIV/AIDS surveillance data in the United States.
AUTHOR:
Metler R; Gostin LO; Posid JM; Gnesda DS; Sullivan PS;
Riedford DG; Lazzarini Z
AUTHOR AFFILIATION:
CDC, Atlanta, GA, USA.
SOURCE:
Int Conf AIDS. 1998;12:973 (abstract no. 44185).
SECONDARY SOURCE ID: ICA12/98406917
ABSTRACT:
BACKGROUND: Protection of HIV/AIDS information and
surveillance data, to prevent disclosure and discrimination, is a
human rights concern and essential to the conduct of
surveillance. The Centers for Disease Control and Prevention
(CDC) assessed current security practices at surveillance units
(SU) and reviewed state and federal confidentiality laws to see if
protections were adequate. METHODS: A 124-question survey
of security practices was administered at 33 of 61 SUs. A survey
of state epidemiologists and legal database search were used to
assess state laws. To assess federal protections, a review of
federal statutes, regulations, constitutional law, case law, legal
journals, agency recommendations, and legislative committee
reports was undertaken. RESULTS: Of 33 SUs surveyed, all had
disciplinary policies for improper disclosure of data, 89% closed
off the work area containing surveillance data with identifiers to
outsiders, and 82% prohibited cleaning crews from entering
surveillance units unescorted. All states had legal protection for
HIV/AIDS data, but their content varied widely. For example,
exceptions to confidentiality laws allowed disclosures to: health
providers (83%), needle-sharing or sex partners (71%),
subpoena or court order (56%), blood banks (42%), correctional
institutions (27%), school officials (23%), and insurance
companies (15%). At the federal level, protection consists of
removal of names before encrypted HIV/AIDS data are
transmitted to CDC and of a collection of statutory and
constitutional safeguards. CONCLUSIONS: In summary,
protection must be assured at all 3 levels: SU, state, and federal.
While all SUs have security policies, CDC is further
strengthening protections by using survey findings to implement
minimum security standards. To address state law variability,
CDC is developing model state legislation on public health
information privacy, with emphasis on HIV data. Federal
legislation providing uniform protection of individual health
information, including HIV data, is being considered.
MAIN MESH HEADINGS:
*Acquired Immunodeficiency Syndrome
Confidentiality/*LEGISLATION & JURISPRUD
*HIV Infections
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*HIV Infections
*Population Surveillance
ADDITIONAL MESH
Human
HEADINGS:
Privacy
United States
PUBLICATION TYPES:
ABSTRACT
LANGUAGE:
Eng
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TITLE:
Assessment of the impact of a major HIV/AIDS confidentiality
breach, Florida.
AUTHOR:
Liberti T; Conti LA; Lieb S; Dulin S; Maddox L; Crockett LK
AUTHOR AFFILIATION:
Florida Department of Health, Tallahassee 32399-0700, USA.
SOURCE:
Int Conf AIDS. 1998;12:928 (abstract no. 43421).
SECONDARY SOURCE ID: ICA12/98405049
ABSTRACT:
BACKGROUND: In September 1996, a computer diskette
containing the names and demographic information of
numerous HIV-positive patients was anonymously mailed to a
local health department and 2 major newspapers serving the
5-county Tampa Bay area of Florida. The newspapers publicized
the receipt of the unauthorized information, but did not further
disclose the identities of the patients. Investigations of the
incident were launched by the Florida Department of Health
(DOH) and the Florida Department of Law Enforcement.
METHODS: Law enforcement officials gathered evidence about
the incident. The DOH conducted a study to assess the impact of
the breach on the AIDS surveillance system and HIV counseling
and testing programs. RESULTS: A DOH employee and a
non-employee were implicated in the confidentiality breach. The
volume of AIDS case reports declined temporarily in the county
where the employee worked due to his being placed on
administrative leave and the time consumed by the criminal and
internal DOH investigations. There was no evidence to suggest
that local provider confidence in the AIDS reporting system was
adversely affected by the breach. When active AIDS surveillance
resumed in early 1997, case reporting in the area returned to
normal levels, and missed cases were collected retrospectively.
Elsewhere in the state, no effect on case reporting was evident.
Statewide, as well as in the 5-county Tampa Bay area, overall
HIV counseling and testing patterns for October-December 1996
were similar to those for the same period in 1995. In the county
where the employee worked, a slight decline in HIV testing was
observed in the immediate post-breach period, which was
followed by a return to the pre-breach level. Implementation of
legislatively mandated HIV infection reporting-initially
scheduled for January 1997--was postponed by 6 months.
CONCLUSIONS: The breach had minimal impact on the AIDS
surveillance system and HIV counseling and testing programs
statewide. The employee resigned, and he and the non-employee
were convicted of criminal charges. No class action or individual
lawsuit was filed by patients. Following the breach, DOH
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security and confidentiality measures were enhanced statewide,
and such measures became a model for other states' HIV/AIDS
surveillance systems. HIV infection reporting was successfully
implemented in July 1997.
MAIN MESH HEADINGS:
Acquired Immunodeficiency Syndrome/*DIAGNOSIS
*Confidentiality
*Confidentiality/LEGISLATION & JURISPRUD
HIV Infections/*DIAGNOSIS
*Truth Disclosure
ADDITIONAL MESH
Acquired Immunodeficiency Syndrome/EPIDEMIOLOGY
HEADINGS:
Counseling
Crime
Disease Notification/LEGISLATION & JURISPRUD
Florida
Human
HIV Infections/EPIDEMIOLOGY
Population Surveillance
PUBLICATION TYPES:
ABSTRACT
LANGUAGE:
Eng
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TITLE:
Facing reality [letter]
AUTHOR:
Gault MH
SOURCE:
CMAJ. 1998 Sep 8;159(5):443, 445.
SECONDARY SOURCE ID:
MED/98429715
MAIN MESH HEADINGS:
HIV Infections/*PREVENTION & CONTROL
*Medical Missions, Official
*Occupational Health
*Voluntary Workers
ADDITIONAL MESH HEADINGS:
Female
Human
HIV Infections/EPIDEMIOLOGY
HIV Infections/TRANSMISSION
Lesotho/EPIDEMIOLOGY
Male
Population Surveillance
World Health Organization
PUBLICATION TYPES:
LETTER
JOURNAL ARTICLE
LANGUAGE:
Eng
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10/25/98 5:38 PM
Study: Anonymous HIV Testing Is Key
http://www.nytimes.com/aponline/a/AP-AIDS-Tests.html
Breaking News
The New York Times
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October 27, 1998
Study: Anonymous HIV Testing Is Key
A.P. INDEXES: TOP STORIES I NEWS I SPORTS I BUSINESS I TECHNOLOGY | ENTERTAINMENT
Filed at 7:54 p.m. EST
By The Associated Press
CHICAGO (AP) Anonymous screening for the AIDS virus leads to people
getting tested and treated much earlier, a study found.
But where name-linked testing is required as it is now in 11 states public
clinics have seen no significant decline in the number of people tested, another
study found.
In confidential testing, the person's name is linked to test results in a medical
chart and kept on file at health departments to prevent cases from being tracked
more than once. The names are stripped before results are sent to the Centers
for Disease Control and Prevention. In anonymous testing, only a number is
recorded with the test result, never a name.
Federal authorities favor the availability of both. They say name reporting is the
only way to track the epidemic, but anonymous testing may help curb it by
getting people into treatment earlier.
`The history of this disease has been a little different than other diseases,
because we haven't had a therapy until recently that was highly effective," said
Dr. Allyn K. Nakashima, lead author of one study and a CDC medical
epidemiologist.
Public reluctance to give names to public health officials for testing has eased,
since a person's anonymity disappears when he or she becomes a patient, she
said.
The CDC studied about 459,000 tests at health departments in six states before
and after they implemented reporting of names of people who tested positive
for HIV, the virus that causes AIDS.
Name reporting did not appear to diminish the use of testing in the states
studied Louisiana, Michigan, Nebraska, Nevada, New Jersey and Tennessee
-- the CDC said in Wednesday's Journal of the American Medical Association.
Name reporting has been required since 1981 in all states for full-blown AIDS
and has been routine even longer in all states for other diseases ranging from
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States That Track HIV Cases by Name
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October 27, 1998
States That Track HIV Cases by Name
A.P. INDEXES: TOP STORIES I NEWS I SPORTS I BUSINESS I TECHNOLOGY I ENTERTAINMENT
Filed at 7:53 p.m. EST
By The Associated Press
These 11 states require reporting by name of anyone who tests positive for HIV
to local health departments for confidential case tracking. All other states offer
anonymity as an option in HIV testing.
Alabama
Idaho
Iowa
Mississippi
Nevada
North Carolina
North Dakota
South Carolina
South Dakota
Tennessee
Wyoming
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GMHC News Release
http://www.gmhc.org/press/980326a.html
GMHCNews Release
FOR IMMEDIATE RELEASE
March 26, 1998
Contact: Stephen Soba: (212) 367-1214/Pager: (917) 556-6797
Greg Lugliani, (212) 367-1210/Pager: (917) 556-6356
GMHC Welcomes State HIV Workgroup's Call for
Monitoring and Firm Rejection of Mandatory Partner
Notification and Names Reporting
A Unique Identifier System is Clearly Recommended
Ronald Johnson, Managing Director for Public Policy, Communications and Community
Relations at Gay Men's Health Crisis, released the following statement:
GMHC welcomes the New York State AIDS Advisory Council HIV Surveillance
Workgroup's long-awaited report on tracking the epidemic. The report clearly states the
compelling need for collecting HIV data as the best weapon to stop the future spread of
HIV. New York urgently needs a new system to monitor the AIDS epidemic, and GMHC
hopes this report will provide the needed impetus to legislation that makes this system a
reality.
In light of an ill-considered bill currently in Albany sponsored by Assemblywoman Nettie
Mayersohn (D-Queens) and Senator Guy Velella (R-Bronx), perhaps the report's most
significant recommendation is its unequivocal rejection of coercive, mandatory
government-run partner notification programs. The report instead recognizes the importance
of partner notification remaining voluntary and within the context of clinical care.
The report also wisely comes out for the continuation of anonymous testing in New York
State and the safeguarding of confidentiality for those who test positive. Given the real fears
many HIV-positive people have of being named and reported to the government, we are
truly heartened that the HIV Surveillance Workgroup overwhelmingly rejected a
names-based system. Gay Men's Health Crisis is opposed to any names-based HIV
surveillance system.
Shockingly, workgroup members from the New York City Department of Health caved to
political pressure and changed their votes to support criminal penalties for HIV-positive
people who do not disclose their status to sexual or needle- sharing partners, even if they are
engaging in safer sex. Despite the City's flip-flop, this measure was defeated. Lawmakers
who seek a quick fix to the worst public health crisis the state has ever faced and who would
contemplate punishments for people with HIV should heed the report's overarching message
that simple solutions in the fight against AIDS don't save lives. Policies that promote, not
discourage, HIV testing are the only way to go.
Press Room Facts & Statistics I A History of GMHC & AIDS I GMHC at a Glance
GMHC
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GMHC News Release
http://www.gmhc.org/press/980113.html
GMHC News Release
FOR IMMEDIATE RELEASE
January 13, 1998
Contact: Stephen Soba, (212) 367-1214
Gay Men's Health Crisis Calls for Monitoring of HIV
Infections
Demands New York State Develop System that Collects and Uses Data to
Expand Treatment and Prevent New Infections, While Protecting Privacy
Gay Men's Health Crisis called today for a new system for tracking HIV infection in New
York State. Until now, GMHC had opposed plans to report HIV infections. But with
changes in the epidemic, the agency now believes that the old hospital-based AIDS
reporting system is obsolete. A new monitoring system is critical to help prevent new
infections, especially among young people, as well as to expand health care for those
already infected with HIV. The numbers of AIDS cases and deaths have been available for
years, but the huge number of those infected with HIV - and of new infections each year
- remains a mystery.
"Shifts in HIV infections and new early treatment options demand new approaches," said
Ronald S. Johnson, GMHC's Managing Director for Public Policy, Communications and
Community Relations. "Counting only those who are hospitalized reveals yesterday's
epidemic, not today's. We are committed to fighting for a new system of tracking HIV
infections with strong privacy protections that will help those most at risk: the poor, women,
youth, especially gay youth, and young adults."
New York's current monitoring system, designed in 1983, tracks the epidemic by counting
people who become hospitalized with, or die from, AIDS-related illnesses. The system
misses the shift of HIV care from hospitals to outpatient clinics and doctors' offices. It also
misses the large numbers of people who have learned they are HIV positive but have
remained healthy.
GMHC is calling for a monitoring system with strong and enforceable privacy protections
to prevent discrimination against people who are HIV positive. Personal information
gathered by the state public health department needs to be protected as stringently as the
current AIDS monitoring system has guarded privacy for nearly two decades. Public health
data in New York State are among the most highly protected form of medical information.
GMHC believes that the real threat to privacy is the unregulated free market for private
medical records among insurers, drug companies, industry and employers.
GMHC also favors the preservation of free, publicly-funded anonymous testing.
Anonymous testing is an important vehicle for some people to receive counseling and
testing, enter medical care, and prevent further transmission. Anonymous testing is an
important adjunct to any HIV monitoring system, because lack of this option leads some
people to delay testing, donate blood as a means to be tested anonymously, and give false
information at confidential testing sites.
"Our call for a new monitoring system should not become a vehicle for enacting punitive,
ineffective or unrelated HIV policies," said Mr. Johnson. "Some propose linking a new
monitoring system to the issue of partner notification. We are opposed to mandatory,
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GMHC News Release
http://www.gmhc.org/press/980113.htm
government-run partner notification. We are convinced that counseling about voluntary
disclosure and protecting sexual partners must continue to be performed by doctors, nurses,
social workers and community-based organizations. The real challenge for New York State
public health officials and elected leaders is to use the data collected from a new HIV
monitoring system to increase care for the infected and to prevent new infections from
occurring."
Press Room I Facts & Statistics | A History of GMHC & AIDS | GMHC at a Glance
GMHC
2 of 2
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GMHC News Release
http://www.gmhc.org/press/980326.html
GMHCNews Release
FOR IMMEDIATE RELEASE
March 26, 1998
Contact: Stephen Soba, (212) 367-1214
GMHC Strongly Opposes Coercive Partner Notification
Bill
Bill Would Deter HIV Testing, Endanger People with HIV and Their
Partners
The following statement was released by Ronald S. Johnson, Managing Director for
Public Policy, Communications and Community Relations at Gay Men's Health Crisis:
Gay Men's Health Crisis firmly rejects legislation mandating government- directed contact
tracing, a misguided, ineffective and perilous approach to a complex question. Mandatory
partner notification is not the answer. It would accomplish nothing, except to heighten the
threat of domestic violence and lead people at risk for HIV to avoid early testing and
medical treatment, driving the infected and their partners into a state of increased ignorance
and even greater danger.
The Mayersohn/Velella bill (A.6629/S.4422) demands that physicians report the names of
HIV-positive persons to local health departments, which would in turn notify spouses and/or
known sexual partners. In an election year, politicians may conveniently forget that existing
state law already authorizes partner notification, regardless of the consent of people with
HIV, whenever physicians believe there is risk of infection to an unsuspecting partner.
Communities most vulnerable to infection -- gay men, intravenous drug users, adolescents,
women of color -- will not be tested if they believe government is collecting names of HIV
positive people and hunting down their partners. Rather than compelling people to resist
getting tested, as this bill will do, New York should commit itself to aggressively promoting
HIV testing. That's the best way of stemming the spread of HIV.
If this bill passes, spouses and partners, particularly women, will fall prey to domestic
violence, which is far more likely to occur as a result of government-driven HIV disclosure.
To argue that HIV is the same as other STDs is deceptive; unlike syphilis and gonorrhea,
HIV is an incurable life-long infection. Furthermore, the Mayersohn/Velella bill would
create an outrageously costly bureaucratic structure - the cost could be as high as $5,600
for every single contact - wasting precious funds that could be spent more effectively to
promote testing and prevention.
We share the legitimate concerns reflected in the Mayersohn/Velella bill. However,
stopping the spread of HIV will require more than a simplistic response. Partner notification
will only succeed when an individual and a health care provider work together to identify
and notify a partner.
Press Room Facts & Statistics I A History of GMHC & AIDS I GMHC at a Glance
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Take AIM News & Information: In the News
http://www.takeaim.org/newsinfo.htm
NEWS & INFORMATION
i
What's new? Find out about the latest theories, discoveries, and
treatments for HIV and AIDS.
In the News
12th World AIDS Converence or
Two of AIM's finest were in Geneva, Switzerland for
try this mirror site , or this one
the conference on AIDS. Dr. David Ostrow offered a
poster on Hepatis and HIV risk among drug-using men
who have sex with men, and the impact of new
combination HIV therapies on knowledge, attitudes,
and behaviors among Chicago gay men. Dr. David
McKirnan offered a poster on HIV sexual risk among
subgroups of drug and alcohol-involved men who have
sex with men. For abstracts of the posters, and links to
more information about the conference, see our
Geneva Update, and view the press release.
CBC calls for declaration of
The Congressional Black Caucus called upon Donna
Public Health Emergency
Shalala, Secretary of Health and Human Services to
declare AIDS/HIV a public health emergency. Key to
the plan developed by the CBC is the integration of
substance abuse treatment with HIV prevention and
care, as well as prevention and treatment of HIV in
prison populations. Representatives also stated a
strategy must be developed to combat anti-gay bias.
On the record
Want to know how your representative voted on the
ban against needle exchange programs? Check out
the discussion and the vote from the Congressional
Record. (If you want more info, check the Library of
Congress search engine, search for needle
exchange.)
Drinks, Drugs and HIV
As the weather warms up and some of us begin to
drag ourselves out of winter hibernation and onto the
party circuit, it's a good time to review the impact of
drugs and drinking on people with HIV. We start this
month's discussion with an informative brochure from
Gay Men's Health Crisis.
Name Reporting
The Illinois Department of Public Health opened up the
in Illinois
discussion of its proposed rule change to require
mandatory reporting of names of HIV positive people.
The results of the discussion are unclear: some
sources say there is now a work group to study other
options, while IDPH is still stating the proposal is going
on as scheduled, meaning the proposal will continue to
be refined over the next few months. Many health
organizations and AIDS treatment advocates are
opposing names reporting. While tracking HIV is a
crucial part of treatment and research, experts say
there are other ways to ensure effective tracking
without names. We will keep you posted as details of
the proposed rule change become available.
Viagra and Pls
Reports indicate Viagra may interact with drugs
commonly used to fight HIV, including some protease
inhibitors and antibiotics. There also may be possible
adverse, or even fatal, effects of combining amyl
nitrate (poppers) with Viagra. Check out the Gay and
Lesbian Medical Association press release and
JAMA's article for more information.
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Take AIM News & Information: In the News
http://www.takeaim.org/newsinfo.htm
HIV as Disability?
UPDATE: The U.S. Supreme Court has decided HIV is
considered a disability protected under the Americans
with Disabilities Act. As we reported last month,
Bragdon V. Abbot, centered on the refusal of a dentist
to fill the cavity of a patient with HIV unless she agreed
to have the procedure done in a hospital. For
information on the case, see Chicago Sun-Times or
The Washington Post.
PEP Talk
In the launch of our Feedback column, the discussion
of Post-Exposure Prevention continues. Tell us what
you think. We'll include your comments in next month's
Feedback.
Undetectable Viral Load
Studies indicate undetectable viral load in the blood
doesn't mean the virus is gone. It still hides in semen
and in the brain.
Barebacking
Well into the second decade of the AIDS crisis, it
seems more people are engaging in barebacking (sex
without a condom). Sometimes it's intentional, either as
a part of a philosophy of risk taking, or as acceptable
risk between HIV-positive partners. If you are into
barebacking, we'd like to talk with you. We are
currently conducting interviews with men in the
Chicago area who are having sex with other men, who
feel there is no longer a need to be quite so careful,
maybe because of the availability of new treatments,
or maybe just because
The interviews take about an hour and a half, and a
small stipend is offered. To get more information or
sign up for an interview, please give us a call at
773.525.0246, and tell 'em you saw it on the web.
Let's talk about Sex
Can you talk to your doctor about your sexuality?
Check out this Washington Post article for information
on how a doctor can talk about sex more comfortably
with his or her patients, including suggestions by our
own Dr. David Ostrow.
Celebrate Summer with the AIM
Ah, summer. Parades, lakefront gatherings, late night
Boys
strolls down Halsted. Through it all, AIM is out and
about at area venues. For a complete schedule of
when and where you can meet us to talk, check out
this month's calendar.
Want more?
With HIV as with the rest of life, act locally, think
globally. Click here for a list of resources in Chicago,
and links to publications, information and organizations
all over the planet.
From the TAKEAIM Library
Behavioural and psychosocial implications of the new
protease inhibitors
by David Ostrow, M.D., Ph.D. A discussion of the
implications of the new treatment options and viral
load measurements.
Wake Up! Turn Off the auto-pilot Now by Stephen
Gendin. A reality check in the wake of media hype
about the successes of new treatments. Reprinted
from the December issue of Community Prescription
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Take AIM News & Information: In the News
http://www.takeaim.org/newsinfo.htm.
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IMPROVING HIV SURVEILLANCE SYSTEMS
This propos al would
The President has proposed a demonstration project providing States with funds to develop HIV
surveillance systems that utilize privacy protection codes rather than names based reporting.
These States would be required to apply their disease surveillance strategies in ways that link
infected individuals with critical health care and social support services. As a condition of
recieving funds, States would also be required to evaluate their new surveillance systems.
BACKGROUND
Importance of Accurate HIV Surveillance Systems
In 1995, AIDS became the leading cause of death for all Americans aged 25-44. Over half a
million American men, women and children have been diagnosed with AIDS, and more than
300,000 have already died from this disease. VAIDS strikes hardest against younger people,
robbing the country of valuable energy, talent and promise for the future. It is vitally important
to have an accurate national surveillance system in order to allocate limited resources, target and
evaluate prevention efforts, and project the future of the epidemic.
antdated
Current Surveillance Systems Are No Longer Adequate
Presently, all people diagnosed with AIDS are reported by name to State and local health
departments. State officials then delete identifying information from the reports and forward
them to the Centers for Disease Control (CDC) for compilation of national data on the AIDS
epidemic. At the beginning of the epidemic, this was a reliable way to determine the extent of
infection nationwide, because people with HIV routinely developed AIDS within a very short
time period. However, because of the success of new HIV drug therapies, people are living
longer with asymptomatic HIV disease. Therefore, the current method of tracking the AIDS
epidemic is no longer reliable, because it is based solely on the end stages of disease progression.
Health care organizations, AIDS advocates, and Federal, State, and local public health officials
are all in agreement that generating better data on the scope of the HIV epidemic is essential.
Without assistment States Prive
States Work Independently to Track Levels of HIV Infection
State and local public health officials are currently working together to develop accurate HIV
surveillance systems. Thirty-one States have chosen to implement name-based HIV surveillance
systems that build off their current surveillance systems. Because of privacy concerns, three
States (Maryland, Massachussetts, and Texas) have chosen to implement non-name based
systems, where HIV infected individuals would be reported to public health officials by a unique
code that cannot be traced rather than by name. Although there is a high level of interest in
developing non-name based surveillance systems, there is a significant cost associated with the
development of these systems because there is no existing public health infrastructure to support
them.
sig#s:
Patin
The Advocate Community Favors Non-Name Based Surveillance Systems
Advocates have come out strongly in favor of non-name based HIV surveillance systems. There
is considerable concern that mandatory name based reporting will discourage people from getting
tested and seeking treatment. In addition, because people are living longer with asymptomatic
HIV disease, public health officials would have the names of people with HIV on record for an
extended period of time, increasing the possibility of confidentiality breaches. Advocates believe
that non-name based surveillance systems will reduce the fear of stigma and the loss of
confidentiality while enabling the collection of better data on HIV infection.
Initial Evaluation of Non-Name Based Reporting Systems is Inconclusive
Information from CDC studies here.
Movement Towards a National HIV Surveillance System
Novembr.
The CDC has developed draft regulations that would require States to implement HIV
surveillance systems by April of 1999. As presently drafted, these regulations emphasize the
importance of State flexibility when developing a reporting system. They do not require any
particular method of surveillance and establish performance measures for both names based and
non-names based systems.
POLICY DESCRIPTION
The President has proposed a three part demonstration project to explore the issues surrounding
non-name based HIV surveillance.
1.
Developing New Surveillance Systems
States will be provided funding to develop and implement HIV surveillance systems that
use encryption and other non-name based methodologies to track the level of HIV
infection in their State. These systems will utilize "privacy protection codes" rather than
the names of individuals when forwarding data to the State Department of Health,
ensuring that only patients and health care providers have identifying information on the
HIV status of individuals.
2.
Linking Infected Individuals with Critical Health Care and Social Support Services
States must enhance their current efforts to link infected individuals with critical health
care and social support services. Special outreach efforts to educate individuals about the
new privacy safeguards and the importance of early diagnosis and treatment should be
undertaken. In addition, strategies to improve referral to primary care sources should be
implemented for those infected individuals being tested at publicly funded sites.
3.
Evaluating the New Surveillance Systems
States would be required to perform a technical evaluation of their new surveillance
systems that focused on rates of record duplication and lost or missing data. They would
also be required to evaluate the success of the outreach, education, and patient referral
strategies in promoting HIV testing and early entry of infected individuals into primary
care.
BUDGET EFFECTS
Unknown.
ADVAN7448
T
privacy agenda
D
advocate support
IMPROVING HIV SURVEILLANCE SYSTEMS
Summary: ENO italies.)
This proposal would fund a demonstration project providing States with funds to develop HIV
do
surveillance systems that utilize privacy protection codes rather than names based reporting.
Ined 1
These States would be required to apply their disease surveillance strategies in ways that link
infected individuals with critical health care and social support services. As a condition of
this?
recieving funds, States would also be required to evaluate their new surveillance systems.
yes -
BACKGROUND
underlined
it's
+
Bold
No
good
Bukets
- Importance of Accurate HIV Surveillance Systems. In 1995, AIDS became the leading cause of
death for all Americans aged 25-44. Over half a million American men, women and children
have been diagnosed with AIDS, and more than 300,000 have already died from this disease. It
is vitally important to have an accurate national surveillance system in order to allocate limited
resources, target and evaluate prevention efforts, and project the future of the epidemic.
Surveillance Systems Are Outdated. Presently, all people diagnosed with AIDS are reported by
name to State and local health departments. State officials then delete identifying information
from the reports and forward them to the Centers for Disease Control (CDC) for compilation of
national data on the AIDS epidemic. At the beginning of the epidemic, this was a reliable way to
determine the extent of infection nationwide, because people with HIV routinely developed
AIDS within a very short time period. However, because of the success of new drug therapies,
people are living longer with asymptomatic HIV disease. Therefore, because the current method
of tracking the AIDS epidemic is based solely on the end stages of disease progression, it is no
longer reliable. Health care organizations, AIDS advocates, and Federal, State, and local public
health officials are all in agreement that generating better data on the scope of the HIV epidemic
is essential.
Present State Surveillance Systems Raise Privacy Concerns. State and local public health
officials are currently working together to develop accurate HIV surveillance systems. Thirty-
one States have chosen to implement name-based HIV surveillance systems. Although this issue
is still being debated, there is concern in both the public health and advocacy communities that
name-based surveillance systems would discourage infected individuals from seeking testing and
treatment because of the fear of confidentiality breaches. In addition, because people are living
longer with asymptomatic HIV disease, public health officials would have the names of people
with HIV on record for an extended period of time, increasing the possibility of confidentiality
breaches. Although there is a high level of interest in developing non-name based surveillance
systems that include essential privacy protections, the significant cost associated with the
development of these systems is discouraging for many States.
to be released in
Movement fowards a National HIV Surveillance System. The CDC has developed draft
regulations that would require States to implement HIV surveillance systems by April of 1999.
As presently drafted, these regulations emphasize the importance of State flexibility when
developing a reporting system. They do not require any particular method of surveillance and but
establish performance measures for both names based and non-names based systems.
create l
POLICY DESCRIPTION This proposal world establish a
The President has proposed a three part demonstration project to explore the issues surrounding
non-name based HIV surveillance.
[Questions Competitive?
How many States?
Developing New Surveillance Systems
year
?
Admin-
States willipe provided funding to develop and implement HIV surveillance systems that
istess
use encryption and other non-name based methodologies to track the level of HIV
infection in their State. These systems will would utilize "privacy protection codes" rather than
the names of individuals when forwarding data to the State Department of Health,
ensuring that only patients and health care providers have identifying information on the
HIV status of individuals. Recent evaluations of existing non-name based surveillance
systems indicate that States have higher rates of missing data and may have difficulty
conducting adequate follow-up with infected individuals in order to collect HIV risk
information. States would need to adequately address these issues in their grant
proposals.
2).
Linking Infected Individuals with Critical Health Care and Social Support Services
States must ehhance their current efforts to link infected individuals with critical health
care and social support services. Special outreach efforts to educate individuals about the
condition
new privacy safeguards and the importance of early diagnosis and treatment should be
receiving Federal
undertaken. In addition, strategies to improve referral to primary care sources should be
Funds
implemented for those infected individuals being tested at publicly funded sites.
is
Evaluating the New Surveillance Systems
States would be required to perform a technical evaluation of their new surveillance
systems that focused on rates of record duplication and lost or missing data. They would
also be required to evaluate the success of the outreach, education, and patient referral
strategies in promoting HIV testing and early entry of infected individuals into primary
care.
POLICY RATIONALE
Funding a demonstration project that would assist States in the development and implementation
of non-name based HIV surveillance systems would be advantageous for the following reasons:
Non-name Based Surveillance Systems Provide Greater Privacy Protections
AIDS advocates have come out strongly in favor of non-name based HIV surveillance systems. said
Sharten-
earliar
There is considerable concern that mandatory name based reporting will discourage people from
getting tested and seeking treatment. Advocates believe that non-name based surveillance
systems will reduce the fear of stigma and the loss of confidentiality while enabling the
collection of better data on HIV infection.
Non-name Based Surveillance Systems Protect the Hispanic Community
The AIDS epidemic disproportionately affects the Hispanic population. In 1997, the incidence of
AIDS among Hispanics was 37.7 per 100,000 individuals, almost 4 times the incidence rate for
whites. There is a widespread fear among the Hispanic population that mandatory names
reporting for HIV infection will eventually lead to deportation of infected individuals. This
provides a strong disincentive to request testing or receive care. The implementation of non-
name based surveillance systems will help assure the Hispanic community that their infection
status will not be used by State or Federal immigrantion agencies to discriminate against them
when they apply for citizenship or naturalization.
Provides a Test Case for National Unique Medical Identifiers
There was a great deal of concern when the Administration proposed to implement a national
system of unique medical identifiers. We have since stated that we would not move to implement
such a system until we have passed privacy protection legislation. However, implementing a
non-names based surveillance system to monitor the level of HIV infection differs significantly
from the original Federal proposal. This system would be developed at State option for a limited
subset of individuals who would otherwise be identified by name to State public health agencies.
It is important to note, however, that if States are able to design non-name based surveillance
systems that are able to meet current public health needs and adequately protect the privacy of
HIV infected individuals, they may provide a roadmap towards designing a portable medical
record that uses unique medical identifiers.
BUDGET EFFECTS
Unknown.