I am Dr. Helene Gayle, Director of the National Center for
HIV, STD, and TB Prevention at the Centers for Disease
Control and Prevention. Thank you for the opportunity to
testify today about issues related to HIV prevention partner
counseling and referral services in the context of H.R. 4431,
the HIV Partner Protection Act. I'm especially happy to be
here because it's an opportunity for me to share with you
CDC's updated guidance on HIV partner counseling and
referral services -- which has just been released for public
comment.
However, before we focus on partner counseling and referral
services, let me briefly describe the major goal of HIV
prevention in this country and the sound public health
approaches that we think are needed to achieve this goal. Our
goal is to prevent HIV infection by reducing behaviors likely to
transmit the virus and assisting individuals at risk or already
infected in gaining access to prevention services, medical care,
and other needed services. This ambitious goal can be
achieved only by using a comprehensive strategy. Elements of
this strategy must include monitoring the epidemic; informing
the public regarding risk and modes of transmission;
conducting health education and risk-reduction activities,
including school-based education efforts for youth; promoting
and implementing HIV prevention counseling and testing;
providing referrals for medical treatment as well as prevention
and social services; and promoting and implementing STD
screening and treatment. An essential component of HIV
counseling and testing is reaching out to and counseling sex
and needle-sharing partners of persons identified as HIV
positive. These partners are often unaware that they have been
exposed to HIV and some may already be infected. All must
have access to counseling, testing, and other prevention or
treatment services. Each of these elements contributes to
preventing the spread of HIV. Together, they become a
powerful prevention strategy. No single activity, by itself, will
achieve the overall goal of preventing new HIV infections.
I will briefly describe CDC's current recommendations for
partner counseling and referral services, or PCRS, and our
current requirements for programs providing these services.
The goals of PCRS are, first, to provide services to sex and
needle-sharing partners of HIV-infected individuals so they can
avoid infection or, if already infected, can prevent transmission
of HIV to others; second, to help HIV-infected partners gain
earlier access to counseling, medical evaluation, and other
prevention, treatment, and support services. CDC has required
States to establish standards and implement procedures for
PCRS since 1988, when it was referred to as "partner
notification."
PCRS is a process that begins when people receive HIV
prevention counseling and testing and is carried out by
different health professionals in a wide range of counseling and
testing settings. If a person tests positive, the PCRS provider
and client together formulate a plan for reaching any sex or
needle-sharing partners. The plan should be one that will result
in each partner's being informed of possible exposure to HIV
and provided with accurate information and counseling about
HIV transmission and prevention. Next, the HIV-infected
client voluntarily discloses identifying information about
partners, and the client and/or the provider informs each partner
of possible exposure to HIV. The next step is really the core of
PCRS practice: assisting the partner in accessing additional
counseling, testing, medical care, and other support services.
Throughout this process, the confidentiality of the infected
person's identity and that of their partners must be preserved.
The ability to successfully identify the exposed individual is
directly dependent on establishing trust with the infected
person. This is a critical point that has always been a
cornerstone of partner services for HIV and all other STDs.
The PCRS process, by its nature, is a voluntary one on the part
of the client. A client who tests positive for HIV or any other
STDs cannot be mandated to reveal names of partners. In the
wake of receiving an HIV-positive test result, clients may fear
discrimination, abuse, or domestic violence; they may fear the
loss of a job, health insurance, housing, or the loss of
important personal relationships. The success of the PCRS
process absolutely hinges on the trust and cooperation of the
person living with HIV, their partners, and their communities.
We know that people will cooperate if they believe that their
confidentiality will be protected; otherwise they may avoid the
system altogether. The way to maximize the public health
benefit is to have a valuable service -- one with skilled
counselors fully supported by adequate resources -- that people
perceive as beneficial and easy-to-use.
Partner counseling and referral services related to HIV
infection have evolved from similar services, known as
"contact tracing," that were begun in this country in the 1930s
as a method of preventing the spread of syphilis. This
prevention effort was called contact tracing because public
health workers would, and still do, conduct analyses to
determine which sex partners were most likely to be infected
and then make confidential efforts to locate them and provide
treatment. Contact tracing services later expanded to include
partners of persons infected with gonorrhea and other sexually
transmitted diseases, including HIV, and came to be known as
"partner notification" in the 1980s. Today, the term "HIV
partner counseling and referral services" more accurately
reflects the range of services available to HIV-infected persons,
their partners, and affected communities through this essential
public health activity.
But of necessity, PCRS for HIV differs from partner services
for other STDs. The primary difference is that, despite recent
advances in treatment, we do not yet have a cure for AIDS, so
HIV, unlike syphilis and gonorrhea, remains a life-long issue
for those affected. For HIV-infected persons, PCRS needs to
be continuously available. The process begins as soon as an
HIV-infected person learns their serostatus, and it continues
throughout that person's counseling and treatment. Also,
because society frequently stigmatizes and sometimes
discriminates against HIV-infected persons and their families
and friends, counseling and support must be provided for
clients who choose to notify their own partners. For exposed
partners who test positive for HIV, PCRS provides assistance
in reducing risks posed to others and accessing medical
evaluation, treatment, and other prevention and support
services to prolong life. As new prevention tools emerge, such
as vaccines, better behavioral interventions, and more effective
antiretroviral therapies, PCRS will almost certainly become an
even more important prevention tool.
States, territories, and local areas contribute to a national data
system maintained by CDC that includes information on more
than two million HIV tests reported annually from nearly
10,000 publicly funded counseling and testing sites. While this
system does not differentiate spouses from others who are sex
or needle-sharing partners, it does record the reasons for
seeking HIV counseling and testing services, including
referrals by partners and health departments. In 1996, 81,999
tests were conducted for people who were referred from a
variety of health care delivery settings for PCRS; of these,
35,260 (43 percent) were referred by their partners, and 46,739
(57 percent) were referred by the health department. More than
half of all the people referred were female. Many of these
persons did not realize they might have been exposed to HIV
and thus did not consider themselves at risk for infection until
they received the referral. Nationally in 1996, 4 percent of
these referred partners tested HIV seropositive, and in some
areas up to 15 to 20 percent were HIV positive. This represents
a much higher rate than the national average of 1.5 percent who
tested HIV positive at publicly funded test sites that year.
These data underscore the importance of the PCRS process in
reaching high-risk populations and providing individuals with
the critical linkage to appropriate prevention and treatment
services. The data also illustrate the degree of success PCRS
has already demonstrated.
Concerning the effectiveness of PCRS, we know that, in
general, HIV-infected persons and their partners readily accept
PCRS and, with appropriate counseling, will not only provide
confidential and very sensitive information, but will actively
assist in finding and encouraging partners and spouses to
receive counseling and testing. Also, when located, sex
partners are generally receptive to confidential notification by
the client or the health department and will usually seek HIV
testing. Another indication of the efficacy of PCRS is the fact
that many people at high risk for infection are linked by this
process to prevention services that have been proven to be
effective.
Notwithstanding these benefits to public health, it is also
important to note the practical limitations of PCRS. Frequently
it is difficult or impossible to determine exactly when a person
became infected with HIV and when specific sex or needle-sharing partners were exposed to the
virus. During the
potentially long period during which the virus could have been
transmitted, the HIV-infected person may have had many
partners. In addition, the HIV-infected person may not be able
to identify all partners or know how to reach others who are
known. Because of the long time periods involved, often it is
difficult for the client or health department to locate all the
partners, especially those exposed years earlier. Also, while
many HIV-infected persons willingly participate in PCRS, fear
or misunderstanding of health department policies and
practices may keep some HIV-infected persons from coming
forward or revealing information needed to reach partners and
spouses. A climate of trust, confidentiality, and understanding
is essential; without it, this highly effective and targeted
intervention is jeopardized. Another limitation is the lack of
human and financial resources in the public health arena
necessary to carry out this important prevention activity.
Let me now describe some of the numerous ways that CDC has
been working to further strengthen and enhance PCRS
activities. As a result of the reauthorization of the Ryan White
legislation, each State is required to certify to CDC in writing
the State's intent to comply with the spousal notification
requirements contained in the legislation. Programmatic and
legal staff of CDC and the Health Resources and Services
Administration have developed procedures and criteria for
certifying each State's compliance with Ryan White CARE Act
requirements that mandate that States make a good faith effort
to notify spouses of known HIV-infected individuals. All
States certified compliance by February 1997 and have taken
action to implement spousal notification. No State opposed the
requirements.
In addition to the specific activities related to spousal
notification, CDC also provides technical assistance and
guidance to help States achieve optimal performance in their
PCRS programs. Spousal and partner notification requirements
have been reviewed and emphasized by CDC at numerous
meetings, conferences, and workshops involving State and
local HIV prevention programs and national organizations.
CDC has published scientific articles on HIV prevention
partner notification in peer-reviewed journals, emphasizing its
importance, especially as it relates to primary prevention and
linkage of HIV-infected persons to treatment. CDC has
delivered training on PCRS through a satellite video conference
and at national conferences, and training is currently being
conducted at State and local health departments for staff who
implement PCRS programs.
As I mentioned at the beginning, CDC, with input from a wide
range of public health and professional partners, also has
developed comprehensive guidelines for HIV PCRS and
recently mailed the draft to all State health departments for
comment. The HIV Partner Protection Act of 1998 and this
new PCRS Guidance do share important goals of notifying
partners, including spouses, who may have been exposed to
HIV and linking them to appropriate prevention and medical
services. CDC believes that the new PCRS Guidance improves
and refines current practices and elevates partner counseling
and referral services to a higher standard of public health
practice and a greater degree of potential effectiveness. We
will receive comments on the Guidance and will then finalize
and implement it.
Let me now briefly address some other issues related to the
HIV Partner Protection Act. The Act departs from the CDC
Guidelines and science-based public health practice by
mandating reporting of all HIV-positive tests, by client name,
without any provision to support the continuation of
anonymous testing. The resulting effect will be to discourage
and drastically reduce anonymous testing opportunities.
Anonymous testing has been strongly encouraged by CDC
Guidelines and is integral to public health practice because it
has been proven to bring people for testing earlier in the course
of infection and also bring in people who might never access
such services or who might access them only when symptoms
of disease develop. CDC currently recommends that people
who test positive in anonymous settings be linked with medical
care so they can receive life-prolonging clinical services. It is
also through this medical delivery system that clients develop
the trusting relationships that facilitate the identification of
exposed partners not revealed with the initial inquiry. In States
that require name reporting, the names of clients who tested
positive anonymously are reported to State health departments
at the point of interacting with medical care providers.
In addition, we are concerned that directive legislation may
inadvertently constrain the application of sound public health
activities that require greater flexibility. For example, studies
have shown that clients might fear having their partners
notified because they have reason to anticipate a violent
reaction from the partner. Domestic violence is a well-documented reality in the lives of many
newly diagnosed
individuals, especially women. Providers must be sensitive to
the threat of violence and other issues of concern to the client.
PCRS providers should have the flexibility to make an
assessment prior to notifying the partner and seek expert
consultation before proceeding with notification. Legislative
mandates could decrease the flexibility that public health staff
require to apply sound judgment in complicated situations, as
are frequently encountered when providing PCRS, especially
those situations involving the potential for interpersonal
violence. Passage of this or other legislation that might reduce
this flexibility could prevent clients who fear such violence
from seeking counseling and testing for HIV.
What then are our recommendations? We would like to have
the opportunity to implement the new PCRS Guidance and then
evaluate its outcomes and impact. CDC will provide technical
assistance to State and local programs to build the service
delivery capacity of PCRS programs and will continually
assess PCRS practice across the country as programs are
further developed and strengthened. Knowing the
subcommittee's interest and concern, we would be happy to
provide a progress report six months from the date the
Guidance is finalized.
CDC is committed to strengthening HIV prevention efforts in
reaching sex and needle-sharing partners, providing them with
counseling about prevention, and, if they are infected, linking
them to medical care and treatment. For this to be
accomplished, CDC could support State and local health
departments in expanding counseling and testing services,
increasing the number of skilled counselors who establish that
all-important trust with clients, providing more access to
antiretroviral treatment and other needed services, and
establishing new data collection systems.
Thank you for the opportunity to present our views on this
important public health topic. I will be glad to respond to any
questions you or other members of the subcommittee may
have.
