Department of Health and Human Services 
OFFICE OF 
INSPECTOR GENERAL 
THE RYAN WHITE CARE ACT 
Implementation of the Spousal 
Notification Requirement 
JUNE GIBBS BROWN 
Inspector General 
AUGUST 1999 
OEI-05-98-00391  OFFICE OF INSPECTOR GENERAL 
The mission of the Office of Inspector General (OIG), as mandated by Public Law 95-452, is to 
protect the integrity of the Department of Health and Human Services programs as well as the 
health and welfare of beneficiaries served by them.  This statutory mission is carried out through a 
nationwide program of audits, investigations, inspections, sanctions, and fraud alerts.  The 
Inspector General informs the Secretary of program and management problems and recommends 
legislative, regulatory, and operational approaches to correct them. 
Office of Evaluation and Inspections 
The Office of Evaluation and Inspections (OEI) is one of several components of the Office of 
Inspector General.  It conducts short-term management and program evaluations (called 
inspections) that focus on issues of concern to the Department, the Congress, and the public.  The 
inspection reports provide findings and recommendations on the efficiency, vulnerability, and 
effectiveness of departmental programs. 
OEI's Region V prepared this report under the direction of William Moran, Regional Inspector 
General and Natalie Coen, Deputy Regional Inspector General.  Principal OEI staff included: 
REGION  HEADQUARTERS 
William Moran, Regional Inspector General Elise Stein, Program Specialist 
Nora Leibowitz, Project Leader 
To obtain copies of this report, please call the Chicago Regional Office at (312) 353-4124. 
Reports are also available on the World Wide Web at our home page address: 
http://www.dhhs.gov/progorg/oei  E X E C U T I V E   S U M M A R Y  
PURPOSE 
To identify whether States are implementing their approved plans to ensure a good faith 
effort is made to notify spouses of persons infected with HIV of their possible exposure. 
BACKGROUND 
Section 8 of the Ryan White Comprehensive AIDS Resources Emergency (CARE) Act 
requires that any State receiving Ryan White Title II funding take administrative or 
legislative action to require a good faith effort be made to notify current and former 
spouses of known HIV-infected patients of possible exposure.  A State that does not 
comply with this requirement will lose its Title II funding.  Title II provides funds to States 
for health care and support services for those with HIV and AIDS.  The total Title II 
appropriation for FY 1999 was over $709 million. 
The requirement for States to make a good faith effort does not mandate that all 
spouses of HIV-positive individuals be notified, but does require States to establish 
procedures which facilitate faithful attempts to notify all impacted spouses. 
States have administered HIV and STD partner notification programs which included 
spouses for many years.  The activities to which States certified were both ongoing efforts 
and additions to their Partner Counseling and Referral Services programs that were 
designed to specifically address spousal notification requirements. 
Each State provided the Centers for Disease Control and Prevention (CDC) with 
information on existing or planned legislative and/or administrative actions in order to 
comply with Section 8 requirements.  The CDC approved the certifications of compliance 
submitted by all 50 States, the District of Columbia and U.S. territories.  We reviewed all 
51 State certifications in order to gain a firm understanding of the details of this program. 
However, for the purposes of this study, we assumed that CDCs approval of 
certifications indicates State activities constitute a good faith effort as required. 
We focused on determining whether States were implementing the programs that CDC 
had certified. To accomplish this goal, we collected documentation and conducted site 
visits with State public health staff and HIV test site counselors in six States with high 
prevalence of HIV cases.  Additionally, we interviewed and collected documentation from 
State public health staff in five randomly selected States. 
This evaluation was conducted at the request of Congressman Thomas Coburn. 
1 
Ryan White CARE Act: Spousal Notification  OEI-05-98-00391  FINDINGS 
The 11 Sampled States Have Taken Action on Their Approved Plans 
All sampled States have followed up on certified activities, including revising counseling 
guidelines and contract language, updating training materials, retraining counselors and 
informing providers about changes due to Section 8 of the Ryan White CARE Act.  Some 
States have initiated additional notification activities not contained in their original 
certifications. 
States Are Responding to Common Barriers 
Efforts to notify spouses and partners of persons with HIV are hampered by legislative 
and administrative barriers, by the structure of State and local governments and by 
physician, counselor and patient concerns.  States have responded to barriers by offering 
freedom from liability for providers who notify, and by organizing elicitation and 
notification programs to fit into existing governmental and health care structures.  Some 
States offer training for physicians and counselors, and make efforts to explain the process 
and benefits of notification to persons newly diagnosed with HIV. 
Several States Are Undertaking Promising Notification Efforts 
While all sampled States have done what they certified to, several States have taken 
actions which appear particularly useful or successful.  Several States have made efforts 
regarding provider and counselor training, data utilization and notification that balance 
informing partners and maintaining confidentiality for index cases. 
Data Collection Is Limited and Uneven 
Five sampled States collect data on partner notification.  However, none of the 11 
sampled States collects data specifically on the number of spouses who have been notified 
of their HIV exposure risk.  The six others currently do not collect notification data as 
part of their programmatic efforts.  Three of these States are currently developing or 
piloting data systems.  In at least one State which does not collect data at the statewide 
level, some counties collect local data on notification. 
RECOMMENDATIONS 
While States have taken action on their certifications, their efforts do not completely 
ensure that vulnerable people are always made aware of their possible exposure to HIV. 
Based on our findings, additional efforts need to be undertaken to ensure maximum 
notification while ensuring confidentiality and meeting patients needs. 
2 
Ryan White CARE Act: Spousal Notification  OEI-05-98-00391  Continue to Facilitate Understanding of Notification Efforts Through Publicity, 
Education and Training 
The CDC currently engages in public education efforts on a number of HIV-related issues. 
To increase knowledge for all parties, we recommend that CDC augment its current 
efforts by facilitating targeted education campaigns and provider trainings. 
Establish and continue efforts to publicize notification goals, efforts and benefits. 
Publicizing information about notification and other Partner Counseling and Referral 
Services activities can increase awareness and broaden acceptance of the purpose and 
benefits of informing spouses and partners about their HIV risk.  We recommend that 
CDC establish targeted public affairs efforts for providers, HIV advocacy groups and 
persons at high risk of contracting HIV.  Spouse and partner notification should be 
addressed at senior levels in the department, and information about State efforts should be 
conveyed to interested parties in a manner that increases the issues acceptability. 
. 
Facilitate local cooperation and collaboration We recommend that CDC facilitate 
local level collaboration between State and local public health departments and private 
providers.  Over 80 percent of HIV tests are conducted in the private sector.  Training, 
technical assistance and other written and oral guidance can help public health 
departments and private providers understand the process of spouse and partner 
notification, their roles in the process and the benefits of partner notification. 
Share Good Practices, Replicable Efforts 
We recommend that CDC facilitate the sharing of information about successful State 
notification practices, including training, data collection and other efforts which enhance 
spouse and partner notification outcomes.  The CDC should sponsor multi-State meetings 
on notification issues and efforts, and encourage the spread of promising practices. 
3 
Ryan White CARE Act: Spousal Notification  OEI-05-98-00391  Encourage the Establishment of Data Collection Systems 
We recommend that CDC encourage the development and use of data collection systems 
to monitor State spouse and partner elicitation and notification efforts.  Information 
collected provides a snapshot of efforts that are working and those that may need more 
attention.  The agency should facilitate the development of pilot and full-scale data 
collection programs, identifying successful State data collection efforts and facilitating 
information sharing between States on notification data collection issues.  Data on 
elicitation and notification can be aggregate information which does not require States to 
collect and store identifying information on partners or index cases.  Due to the substantial 
costs involved in data collection, the above recommendation is contingent on the 
availability of funding. 
AGENCY COMMENTS 
We would like to thank the Centers for Disease Control and Prevention and the Health 
Resources and Services Administration for commenting on the draft of this report. 
The Centers for Disease Control and Prevention suggested some additions and a change to 
the first recommendation.  Based on their comments, some changes and clarifications were 
made to this report.  In particular, at their suggestion we have attached their guidance to 
State public health officials regarding certification of compliance with the spousal 
notification requirement. These guidelines provide examples of principles and practices 
that constitute a good faith effort for certification. The full text of their comments is 
attached. 
The Health Resources and Services Administration concurred with our recommendations 
and had no additional comments. 
4 
Ryan White CARE Act: Spousal Notification  OEI-05-98-00391  T A B L E   O F   C O N T E N T S  
PAGE 
EXECUTIVE SUMMARY  . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  1

INTRODUCTION  . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  6

FINDINGS

States Have Taken Action  . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  11

States Are Responding to Common Barriers  . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  14

Several States Are Undertaking Promising Notification Efforts  . . . . . . . . . . . . . . . . .  17

Data Collection Is Limited and Uneven  . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  19

RECOMMENDATIONS  . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  21

AGENCY COMMENTS . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  26

APPENDICES

A: Centers for Disease Control and Prevention Comments . . . . . . . . . . . . . . . . . . . .  27

B: Centers for Disease Control and Prevention Guidance to States . . . . . . . . . . . . . .  29

C: Spouse and Partner Notification Activities: State Level Data . . . . . . . . . . . . . . . . .  31

Table 1: State Spousal Notification Efforts - Actions Described 

in Certifications . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  32

Table 2: Barriers to Spousal Notification and State Solutions  . . . . . . . . . . . . .  35

Table 3: Data Collection in the 11 Sampled States  . . . . . . . . . . . . . . . . . . . . .  38

5 
Ryan White CARE Act: Spousal Notification  OEI-05-98-00391  I N T R O D U C T I O N  
PURPOSE 
To identify whether States are implementing their approved plans to ensure a good faith 
effort is made to notify spouses of persons infected with HIV of their possible exposure. 
BACKGROUND 
The Ryan White CARE Act 
In response to the HIV epidemic and its impact on individuals, families, communities,

cities and States, Congress passed the Ryan White Comprehensive AIDS Resources

Emergency (CARE) Act in 1990.  Ryan White programs provide health care and support

services to persons with HIV and AIDS who would otherwise not have access to care. 

The Ryan White Act, which was re-authorized in 1996 through the year 2000, has four

titles: 

C  Title I: HIV emergency relief grant program for cities 

C  Title II: HIV care grants to States 

C  Title III: Early intervention services 

C  Title IV: Pediatric care and reports and evaluations 

Through its HIV/AIDS Bureau, the Health Resources and Services Administration

(HRSA) administers the Ryan White program.  The HIV/AIDS Bureau conducts

programs to benefit low-income, uninsured and under-insured individuals and families

affected by HIV/AIDS.  Total appropriations for HRSA-funded CARE Act programs is

$1.41 billion for fiscal year 1999.

Section 8 of the Ryan White CARE Act 
Section 8 of the Ryan White reauthorization requires that any State receiving Ryan White 
Title II funding take administrative or legislative action to require a good faith effort be 
made to notify current and former spouses of known HIV-infected patients of possible 
exposure.  A State that does not comply with Section 8 of the 1996 reauthorization of the 
Ryan White Act will lose its Title II funding.  The requirement for States to make a good 
faith effort does not mandate that all spouses of HIV-positive individuals be notified, but 
does require States to establish procedures which facilitate faithful attempts to notify all 
impacted spouses. 
6 
Ryan White CARE Act: Spousal Notification  OEI-05-98-00391  While HRSA-administered Ryan White Title II funding is at risk for States which fail to 
comply with Section 8 of the Act, spousal notification falls under the purview of the 
Centers for Disease Control and Prevention (CDC).  The CDC directly funds HIV/AIDS 
prevention activities through the agencys HIV Prevention Projects.  These programs 
assist public health departments (1) to reduce or prevent the transmission of HIV by 
reducing or preventing behaviors or practices that place persons at risk for HIV infection; 
and (2) to reduce associated morbidity and mortality of HIV-infected persons by 
increasing access to early medical intervention.  This funding is the primary source of HIV 
prevention funding for all State health departments and six city health departments. 
Officials at HRSA have noted that States that fail to comply with Section 8 requirements 
will lose their Title II funding, despite the fact that CDC administers partner notification 
and other HIV prevention activities.  Just as different Federal agencies administer Ryan 
White and HIV prevention programs, the agency administering Ryan White Title II funds 
at the State level is often different from the one conducting HIV and AIDS partner 
notification.  Thus, the State agency responsible for funding health care and social services 
for persons with HIV may be forced to respond to a loss of funds without having any 
authority to fix the problem which caused the loss.  A State that does not make a good 
faith effort to notify spouses and partners loses funds earmarked for HIV health and 
ancillary care services not money directed for prevention. 
CDC Approval Process 
In December 1996, CDC asked States and Territories to certify that they were taking 
legislative and/or administrative steps to ensure compliance with Section 8 of the Ryan 
White CARE Act (P.L. 104-146).  The CDC Guidance to State Public Health Officials 
Regarding Certifications of Compliance With Public Law 104-146" describing what 
constitutes a good faith effort accompanied the CDC request for State certification 
information.  This document is included in Appendix B of this report. All States responded 
in January and February 1997.  Each State provided CDC with information on existing or 
planned legislative and/or administrative actions.  The CDC reviewed the documents and 
approved those found to be acceptable.  The CDC worked with States whose 
certifications did not appear to meet compliance standards in order to develop compliance 
plans which would ensure a good faith effort.  In letters sent on February 13, 1997, CDC 
acknowledged State certifications. 
In our analysis of the steps States have taken to fulfill promises made in the certifications, 
we assumed that CDCs approval of certifications indicated State activities constituted a 
good faith effort as required. 
All States: Certifications 
The CDC has approved the certifications of compliance with P.L. 104-146 submitted by 
all 50 States, the District of Columbia, and U.S. Territories.  The certifications indicated 
7 
Ryan White CARE Act: Spousal Notification  OEI-05-98-00391  what laws and policies each State currently had in place or intended to implement. 
Certifications cited existing State law, recently passed legislation and planned legislative 
changes as well as current policy, planned policy changes and current or planned attempts 
to publicize laws and policies. 
Thirty State certifications made reference to current law or planned legislation which 
addressed spousal notification requirements.  Forty-six States described policies and 
guidelines which were in place or which the State planned to implement.  In addition, 20 
States specifically described language regarding spousal notification which was already 
required for contracts and memoranda of understanding or which they intended to insert 
into such agreements. 
Partner Notification in Context 
States have administered Partner Counseling and Referral Services (PCRS) programs for 
many years.  While these efforts include notification of spouses and other partners, they 
are not limited to such activities.  The activities to which States certified were both 
ongoing efforts and additions to their PCRS programs which were designed to specifically 
address spousal notification requirements.1 
In December 1998, CDCs National Center for HIV, STD and TB Prevention published a 
revised HIV Partner Counseling and Referral Services guidance document.  The 
guidance provides information on availability of PCRS, advises programs developing a 
PCRS plan gives direction on locating and notifying partners, collecting and analyzing 
PCRS data and ensuring the quality of PCRS.  While previous to this guidance States had 
their own guidelines and program rules for spouse and partner notification, many States 
run their programs and update their procedures using CDCs ongoing guidance. 
Health departments and other organizations which provide PCRS to their clients offer 
services based on a number of core PCRS principles.  As CDC indicates in their 1998 
guidance document, PCRS must be voluntary, confidential and culturally sensitive.  A 
PCRS program is one component of a comprehensive HIV prevention system, and is 
based on client-centered counseling which makes use of multiple support services and 
diverse referral options. 
While this report focuses on two aspects of PCRS (elicitation of partner names and 
notification of those partners of their possible exposure to HIV), these elements are 
understood to be part of a comprehensive PCRS program.  As CDC stresses in their 
guidance, counseling is the key to successful efforts to reduce HIV transmission and 
improve the health of currently infected persons. 
1Also see Appendix B for examples of good faith effort principles and practices that CDC provided to 
State public health officials. 
8 
Ryan White CARE Act: Spousal Notification  OEI-05-98-00391  Eliciting names of spouses, sex partners and intravenous drug needle-sharing partners 
often takes place during post-test counseling, or at a session held shortly after diagnosis. 
Notification is generally, though not exclusively, carried out by State or local public health 
employees.  It is always conducted in person and never involves identification of the index 
case to notified partners or other individuals.  Elicitation may be performed by the same 
person who notifies spouses or partners, but this is not always the case. 
Defining Index Cases and Partners 
In the elicitation and notification process that is started when an individual tests positive 
for HIV, State public health staff often refer to the person tested as an index case.  This 
designation helps define the individual as someone who has tested positive for HIV and 
who is asked to name spouses and partners at the start of the notification process. 
Many States certifications do not specifically define partners, though many define 
spouse by referring to language used in Section 8 of the Ryan White CARE Act.  States 
which do explicitly define partners in their certifications include spouses, non-spouse sex 
partners and individuals with whom persons share intravenous drugs and needles. 
Notification of Spouses 
None of the States in our sample or in the larger group of States and Territories which 
certified to the CDC runs a notification program which only notifies spouses about 
possible HIV exposure, but does not notify other sex or needle-sharing partners.  Even 
States which made legislative and/or policy changes in order to comply with Section 8 of 
the Ryan White CARE Act already ran previously existing partner notification programs. 
To ensure compliance, States made changes to law and/or policy with regard to spousal 
notification specifically.  Several States added language to their partner notification 
policies to specifically address Section 8 requirements. 
This evaluation was conducted at the request of Congressman Thomas Coburn. 
9 
Ryan White CARE Act: Spousal Notification  OEI-05-98-00391  METHODOLOGY 
We examined approved certifications from the 50 States and the District of Columbia. We 
reviewed the administrative and legislative actions each State had taken or planned to take 
to ensure compliance with Section 8 of the Ryan White CARE Act.  We conducted on-site 
interviews with six higher prevalence HIV States (California, the District of Columbia, 
Florida, Illinois, New Jersey and New York).  The site visits included discussions with 
State staff responsible for spouse and partner notification activities and with individuals 
directly involved in HIV counseling and testing at the local level.  In addition, we 
conducted telephone interviews with State staff responsible for spouse and partner 
notification activities in five randomly selected States (Kansas, Missouri, North Carolina, 
Washington and West Virginia). 
In each of the 11 States where we conducted on-site or telephone interviews, we 
discussed the States current spouse and partner notification policies and laws.  We also 
asked each State about the planned actions in their certifications to identify whether the 
State had taken action on these items.  We collected documents regarding States 
implementation of spousal notification programs. 
We conducted our review in accordance with the Quality Standards for Inspections issued 
by the Presidents Council on Integrity and Efficiency. 
10 
Ryan White CARE Act: Spousal Notification  OEI-05-98-00391  F I N D I N G S  
The 11 sampled States have taken action on their approved 
plans 
All 11 States certified to planned activities 
Each State certification describes existing and planned administrative policies.2  Six of the 
11 States cite laws that specifically refer to the notification of spouses of persons 
diagnosed with HIV.  Certifications in six States outline where language regarding spousal 
notification was inserted into contracts and memoranda of understanding; seven States 
certifications describe current or planned attempts to publicize notification rules and 
policies. 
All sampled States have followed up on planned activities, including revising counseling 
and testing guidelines and contract language, updating training materials, retraining 
counselors and informing public and private providers about changes due to Section 8 of 
the Ryan White CARE Act. 
Eliciting spouse and partner names from index cases 
State or local health department employees are specifically employed to elicit names in 
seven sampled States.  In these States, staff eliciting spouse and partner names may either 
be stationed at the counseling site or may contact the original patient using information 
provided by the physician or counselor.  The latter is generally employed when a private 
provider has conducted an HIV test for a patient.  Although elicitation is often performed 
by State or local public health staff in these seven States, it is the sole responsibility of the 
public health department in only one of them. 
In four States, names are primarily elicited by physicians and HIV counselors at the time 
an individuals diagnosis is discussed.  An HIV counselor may be employed by the State, 
local health department or a private agency. 
2For further information on the activities States describe in their applications, see Table 1: State Spousal 
Notification Efforts - Actions Described in Certifications in Appendix C. 
11 
Ryan White CARE Act: Spousal Notification  OEI-05-98-00391  Notification duties and State partner notification staff 
State or local health department staff have primary responsibility for notifying spouses and 
partners in all 11 sampled States.  In over half the sampled States, physicians and HIV 
counseling staff may notify spouses and partners, although they do not usually have 
primary responsibility for this activity.  In one State, the attending physician is responsible 
for ensuring that notification occurs, whether or not he performs this activity. In another 
State, providers are encouraged but not required to elicit names and notify spouses.  This 
States certification notes that State law frees them from liability whether they choose to 
notify or not. 
The role of counseling in the elicitation and notification process 
Respondents at the State and local level indicated that good counseling is the key to 
eliciting partner names and successfully educating partners about their risk and steps they 
can take whether or not they test positive for HIV.  Counseling activities for both the 
HIV-positive individual and his or her partners are extremely important.  Thorough 
counseling outlines the clients risk and facilitates the development of strategies to prevent 
further transmission of HIV.  As CDC indicates, counseling takes substantial time, effort, 
training and resources.  These investments are worthwhile, because clients who 
understands their risks and the possible danger they pose to others are more likely to fully 
participate in partner notification activities.  State respondents indicated that counseling 
sites with more developed programs and better trained staff are more successful at 
eliciting partner names from their HIV-positive clients. 
Spouses and notification without patient consent 
Due to confidentiality laws, five States in our sample require patient consent for a provider 
to notify a spouse.  In one State, a physician may personally notify a spouse only with 
patient consent, but can facilitate notification without consent.  If a physician knows the 
identity of his HIV-positive patients spouse, that physician is required to give the 
spouses name to State staff responsible for notification.  For non-spouse partners, patient 
cooperation with elicitation and notification is required. 
While confidentiality laws restrict some State notification efforts, 8 of the 11 sampled 
States allow providers to notify spouses without the index cases permission if the 
provider knows the spouses identity.  Public health staff or the notifying physician are 
generally required to contact the index case and try to gain their consent before 
proceeding with notification. 
12 
Ryan White CARE Act: Spousal Notification  OEI-05-98-00391  Steps beyond certifications 
In discussions with States about compliance with their spousal notification activities, 
respondents in four States described actions they have initiated since receiving approval of 
their certifications.  One State is currently implementing a more formal notification 
process than the one for which it was certified.  The old process relied on counselors and 
physicians to send spouse and partner names to the notification assistance staff, while the 
new process gives this staff more authority to initiate notification discussions with 
providers.  The new process also puts more responsibility on counselors and physicians to 
elicit names or to initiate the elicitation/notification process through the State or local 
notification office. 
One State, which already required providers to elicit names in post-test interviews, 
established an active surveillance program.  Nurses hired by the State visit providers who 
have sent in names of new positives.  They discuss spouse and partner name elicitation as 
well as appropriate patient care and available services with physicians.  Providers 
document notification discussions in their case notes, and nurses encourage physicians to 
discuss notification with patients on an ongoing basis.  The program is being expanded 
with nurses providing ongoing follow-up with physicians. 
State public health staff in another State not only notify spouses and partners of potential 
exposure, but also offer to perform an HIV test for notified spouses and partners in their 
residence.  This facilitates the elicitation of a second round of partners from an original 
index case.  State notification staff have been very successful at eliciting names from the 
field cases they post-test counsel, increasing the number of potentially impacted 
individuals who can be notified. 
Another State is currently piloting a counselor training program and data collection 
system.  Using several of its larger counties as test sites, the State is training HIV 
counselors and local notification staff.  This improves participants ability to perform 
effective elicitation and notification as well as increasing their knowledge about HIV 
treatment and available services. 
The States AIDS office, in conjunction with the sexually transmitted disease control 
programs training center, provides the training to local public health departments.  In 
addition to running a training program, the State helps localities to develop goals and 
objectives based on State expectations.  After staff at publicly funded sites are trained, 
private providers and counselors may access the free training as well.  Once providers, 
counselors and notification staff in the pilot counties have been trained, the program will 
be expanded to the rest of the State. 
13 
Ryan White CARE Act: Spousal Notification  OEI-05-98-00391  States are responding to common barriers3 
Legislative and administrative issues 
State laws limit who may be informed of an individuals HIV status and how such 
notification can occur.  Several States have patient confidentiality laws which restrict the 
ability of providers or others with information about infected individuals to inform 
partners of potential exposure to HIV.  Even when notification is not restricted for 
spouses, States require that confidentiality be upheld for the index client.  Other States 
administrative rules or policies disallow partner notification without patient consent. 
Despite rules that limit notification without patient consent, the majority of sampled States 
do allow providers to notify known spouses of their potential HIV exposure.  Eight States 
in our sample provide freedom from liability for providers who notify spouses of persons 
with HIV that they may have been exposed.  The majority of these States allow 
notification of all partners; only two States grant freedom from liability for spousal 
notifications only.  The rules surrounding such notifications vary among States, but 
providers are generally required to discuss notification with the patient and attempt to 
convince the individual to participate in the process before taking action to notify a 
spouse.  Some States limit notification without patient consent to cases in which the 
provider knows the spouses identity. 
One way that States have tried to address the dual concerns of patient confidentiality and 
public health protection is to involve newly diagnosed individuals in the notification 
process.  Some States that allow spousal notification without patient consent require 
counselors and providers to first try to gain patient consent before proceeding.  If a tested 
individual still refuses to cooperate, providers in at least one State must inform the person 
that they will notify.  The patients wishes regarding whether the provider or State public 
health staff will conduct the notification must also be followed.  In another State, patient 
consent is necessary for the physician to notify a spouse, but consent is not required for 
the physician to provide the spouses name to the public health department. 
Fitting notification into State structure 
States partner elicitation and notification programs are often shaped by States HIV 
prevalence and the structure of their State and local governments.  In one State with high 
HIV prevalence, HIV prevention staff decided that the most effective strategy was to 
place notification activities within the context of ongoing service provision.  Rather than 
develop a parallel infrastructure, the State developed an elicitation and notification 
program structured around existing service providers and testing sites.  State staff 
indicated that they wanted notification to fit into a larger system of care.  They wanted 
3Also see Table 2: Barriers to Spousal Notification and State Solutions in Appendix C. 
14 
Ryan White CARE Act: Spousal Notification  OEI-05-98-00391 people to see notification as a service rather than a burden.  In addition, with such a large 
number of HIV-positive individuals, public health staff determined that the cost of a 
program not tied to existing structures would have been prohibitive. 
Several sampled States have large areas with low HIV prevalence.  Some of these States 
have decided that it is not economical for disease intervention staff to be stationed in every 
public testing site throughout the State.  In two States, higher prevalence areas are staffed 
by State-funded staff, who are called in when needed to counsel individuals in other areas. 
Counselors at HIV test sites are also trained to elicit spouse and partner names.  These 
counselors, as well as private physicians, are able to counsel individuals about the value of 
notifying partners. 
In several States, the counties have a fair amount of autonomy regarding the 
administration of their health and social services.  This county orientation can impede 
State attempts to use one program structure that runs identically in every locality.  One 
States notification program was developed as a framework within which each county can 
develop program details that fit the locality.  To accommodate the county independence, 
the State allows each county to design its own notification program, but offers training to 
local HIV counselors and notification staff.  Training includes information on what 
elicitation should entail as well as how to conduct notification and what notifiers should 
know about HIV treatment and available services. 
Physicians and elicitation 
While many people seek HIV testing from public health clinics, CDC estimates that over 
80 percent of HIV tests are conducted in the private sector - by private providers using 
private laboratories.  With a large percentage of HIV tests conducted by private providers 
such as physicians, barriers to physician participation in HIV spouse and partner 
notification can have a large impact on the success of a state notification program. 
Physicians may fail to elicit partner names from their HIV-positive patients for several 
reasons.  Physicians vary in their ability and motivation to ask patients about their 
partners; many private physicians do not have the time or inclination to elicit names. 
Many physicians test only a few patients a year and are not practiced in HIV counseling 
and name elicitation. 
Respondents indicated that physicians may not see a role for themselves in HIV partner 
notification in part because they are used to the sexually transmitted disease (STD) 
notification model.  Public health officers conducting STD elicitation and notification do 
not rely heavily on participation by private physicians.  There is no established working 
relationship between the two groups, and physicians may not understand that their role is 
different with regard to HIV notification than it is with STDs. 
15 
Ryan White CARE Act: Spousal Notification  OEI-05-98-00391  Several States in our sample encourage physician participation by following up with 
providers who test individuals for HIV.  Two States ask providers to return forms 
indicating their elicitation efforts.  Another State employs nurses who conduct follow-up 
work with physicians reporting HIV cases. 
Most States offer HIV counseling training to both private and public counseling and 
testing staff, and many make completion of a training program mandatory for anyone 
providing HIV counseling and testing.  Although this may not ensure participation, it 
encourages it by increasing providers notification-related knowledge and skill base. 
Counselors and elicitation 
Many HIV counselors are hesitant to push patients to engage in partner elicitation, as they 
do not want to alienate the patients.  Many counselors are primarily concerned that an 
individual diagnosed with HIV seek needed services.  They may not want to broach topics 
which may impact the patients willingness to return for services.  In addition, some 
providers may not entirely understand the partner notification process.  They can not pass 
on correct information about confidentiality, voluntary notification and other issues if they 
are not clear about what is required or allowed in their State. 
Many of our respondents at the State and local level indicated that the keys to successful 
partner elicitation are training and a corporate culture in which partner notification is 
valued.  Counselors, physicians and those managing test facilities must recognize the 
importance of partner notification and understand the central role elicitation plays in that 
process.  Public health staff in one State indicated that variance in testing sites success at 
convincing individuals to supply partner names was based in part on the motivation 
provided by site managers.  They suggested that while all counselors received the same 
State-sponsored trainings, some managers stressed elicitation more than others and 
created an organization-wide sense that elicitation is important and achievable. 
Respondents from another State noted that counselors skills, as well as their relationships 
with the communities they serve, are key to successful notification efforts.  A skilled 
counselor who establishes a rapport with a client and clearly explains the benefits of 
notification can greatly improve the affected individuals willingness to reveal behaviors 
and names to an individual the client has just met. 
Notifiers 
All 11 States appear to do a good job with the actual notification of partners and spouses. 
Each State we interviewed has motivated, well trained notification staff.  They have few 
problems locating and notifying the individuals on whom they receive information.  Many 
States rely on HIV notification staff who have previously worked in sexually transmitted 
disease (STD) units.  These individuals transfer their knowledge and many of their 
protocols from the STD field to HIV notification. 
16 
Ryan White CARE Act: Spousal Notification  OEI-05-98-00391  Patients 
HIV spouse and partner notification can usually only proceed with the patients consent 
and cooperation.  Even an accommodating individual may not be able or willing to discuss 
partners when he is digesting the news of his HIV status.  In addition, patients may lack 
information about partners from longer time periods.  The tested individual may not have 
good information about an ex-spouse or partner he or she has not seen in years.  Other 
patients may refuse to identify spouses due to domestic violence concerns. 
A number of States have addressed patient cooperation issues by clearly identifying 
notification as a voluntary process.  Several States make efforts to market spouse and 
partner notification as a service rather than an imposition.  Most States require post-test 
counseling to include a discussion of the benefits of notification, a description of the 
process and an explanation of available services and participation options. 
Several States are undertaking promising notification efforts 
While all sampled States have taken action on the activities to which they certified, several 
States have taken actions which appear particularly useful or successful.  In particular, 
several States have made efforts regarding provider and counselor training, data utilization 
and notification which balance informing partners and maintaining confidentiality for index 
cases. 
Training 
Respondents in several States indicated that training is a key to successful elicitation and 
notification efforts.  While all State notification programs require their staff to be trained, 
some States take the additional step of requiring all HIV counselors involved in elicitation 
and notification to undergo State sponsored training in this area.  One State which 
requires training for all HIV counselors indicates that this allows the State partner 
notification program to ensure that all counselors learn why notification is beneficial, how 
the process works and how to perform their part of the process. 
Another State ensures participation by private providers through its program of active 
surveillance.  Public health staff visit providers who report cases of HIV.  They discuss 
notification and other HIV related issues.  During these meetings providers are 
encouraged to participate in notification activities.  Active surveillance visits can serve a 
dual purpose, training private providers to participate in spouse and partner notification 
and improving relationships between public health staff and private medical providers. 
Working together, the two parties can better understand the issues each one faces and help 
one another with the elicitation and notification process. 
17 
Ryan White CARE Act: Spousal Notification  OEI-05-98-00391  Utilizing data 
Of the five States that currently collect information on partner notification activities, two 
States stand out in terms of the data they collect and the way they use it.  These States 
collect a large amount of information about their notification efforts, including the number 
of index cases interviewed, the number of partners elicited and the results of partner 
notification efforts.  This information is aggregate data intended to assess trends rather 
than track individual cases.  The data helps partner notification staff monitor their success 
and determine areas in need of improvement. 
These States take the additional step of monitoring the results of notification efforts in 
terms of whether notified partners agree to have an HIV test, whether partners have been 
tested in the past and the results of previous and new tests.  The data collected is 
aggregated to help State notification programs assess whether a broad approach to partner 
notification is effective in identifying new cases of HIV.  A high percentage of notified 
partners identified as never previously tested or previous negative test, new positive 
test would suggest that notification efforts are successfully locating previously 
unidentified cases of HIV.  If many notified partners test negative for HIV, this could 
suggest that the public health department may want to further target its HIV identification 
efforts. 
One of the two States that collects a lot of notification data also gathers information on 
the success of elicitation efforts.  Elicitation is primarily performed by counselors at HIV 
testing sites, and some sites receive State grants for their testing efforts.  The State 
monitors the success of counselors at each site in eliciting partner names from persons 
newly diagnosed with HIV.  Each site that receives State funding is required to maintain a 
1.0 partner index, meaning that on average, each site must elicit at least one partner name 
from each interviewed patient.  Collecting this information allows the State partner 
notification program to assess which sites are successful at partner elicitation.  The State 
program can help less successful sites perform better by offering or mandating retraining 
sessions for counselors and suggesting that lagging sites emulate practices utilized by the 
more successful sites. 
18 
Ryan White CARE Act: Spousal Notification  OEI-05-98-00391  Balancing public health and confidentiality concerns 
While some States use their HIV name reporting system to initiate spouse and partner 
notification efforts, partner notification can be conducted without linking it to a State 
surveillance program.  In one sampled State, the public health department conducts a 
strong HIV spouse and partner notification program not connected to surveillance efforts. 
This State appears to have success notifying spouses and partners of their possible 
exposure to HIV by developed a program that balances the public health need to notify 
partners of possible exposure and the concern that confidentiality is assured for index 
cases.  Although the State employs name reporting of HIV, the partner notification 
program is administered separately from the name reporting program.  The separation 
allows notification staff to assure index clients that any information they provide about 
partners can not be linked back to them.  Partner names and locating information are 
separated from patient information by testing site staff and given to the State health 
department staff responsible for notification. The notification field staff never learn the 
names of the individuals who provided the partner names, so they are not able to pass 
those names along even if they wanted to. 
Data collection is limited and uneven 
Although public health notification staff have a sense of their success at elicitation and 
notification, States often do not collect data in this area.  None of the sampled States 
collects information on whether elicited partners are spouses or ex-spouses of index 
patients.  Demographic information linking contacts to the index cases who name them is 
not collected in many States.  One reason data on a partners relationship to an index case 
is not collected is that this information could jeopardize confidentiality for the index case. 
One sampled State collects information on how many notified individuals are currently 
married, but their confidential notification system does not allow them to link partners and 
index cases.  Partner information is collected at the HIV test site and transferred to the 
partner notification field staff without any information about the index case.  If an 
individual is recorded as the spouse of the index case who named him, the index cases 
identity can be readily discerned. 
Five of the 11 sampled States collect data on partner notification.4  Although each State 
collects somewhat different information, most of these States monitor the number of 
referred cases which result in a notification discussion, the number which result in 
spouse/partner elicitation, total contacts elicited and average contact index.  Two States 
also collect information on the disposition of the notified case, including whether the 
4For information on what types of data States collect, see Table 3: Data Collection in the 11 Sampled 
States in Appendix C. 
19 
Ryan White CARE Act: Spousal Notification  OEI-05-98-00391  partner or spouse had been previously tested and whether notification led them to get 
tested.  The six other States in our sample currently do not collect data on spouse and 
partner notification as part of their programmatic efforts.  Three of these six States are 
currently developing or piloting data systems.  In at least one of the States which does not 
currently collect data at the statewide level, some counties do collect local information on 
notification activities. 
20 
Ryan White CARE Act: Spousal Notification  OEI-05-98-00391  R E C O M M E N D A T I O N S  
States have been conducting spouse and partner HIV notification as part of PCRS and 
other counseling programs for many years; some programs were established in the mid 
1980s.  The planned and ongoing efforts States described in their 1997 certifications to 
CDC stemmed from States larger public health mission to protect both HIV-infected 
persons and their partners.  The certified activities were actions the States planned on 
implementing, and we found that the States in our sample have taken action on their 
certified activities. 
This does not mean that spousal and partner notification has achieved its goal of ensuring 
that vulnerable people are always made aware of their possible exposure to HIV.  Based 
on our findings, additional efforts need to be undertaken to ensure maximum notification 
while ensuring confidentiality. 
As States have primary responsibility for public health issues and private physicians have 
primary responsibility for testing and initiating the notification process, we make the 
following recommendations to CDC: 
Continue to facilitate understanding of notification efforts 
through publicity, education and training 
The goals of partner notification are prevention of HIV transmission and improvement of 
HIV-infected persons access to care.  For partner notification to work, it requires 
participation by all parties - counselors, physicians, patients.  This is most likely to occur 
when participants are educated about the process and benefits of partner notification.  The 
benefits for providers, counselors, HIV-positive individuals and their partners should be 
stressed. 
The CDC currently engages in public education efforts on a number of HIV-related issues. 
To increase knowledge on all sides, we recommend that CDC augment its current efforts 
by facilitating targeted education campaigns and provider training opportunities. 
Establish and continue efforts to publicize notification goals, efforts and benefits 
Misconceptions about spouse and partner notification are often due to lack of information. 
Providing information on notification and other elements of PCRS can increase awareness 
about the intent and benefits of informing spouses and partners about their HIV risk. 
Increased knowledge is key to clearing up the misconceptions, fears and mistrust that 
hamper participation by providers and patients. 
21 
Ryan White CARE Act: Spousal Notification  OEI-05-98-00391  Information about notification efforts and processes should be tailored to specific 
audiences.  Specifically, physicians and other providers should be educated about their role 
in eliciting partner names and notifying affected persons.  Providers need information 
about what spouse and partner notification entails, how it occurs in the providers State, 
what its benefits are and the ways in which providers can participate. 
Educational efforts should also be aimed at organizations which represent and advocate 
for persons affected by HIV and AIDS.  As these organizations communicate with the 
HIV/AIDS community and with subgroups within the larger affected population, 
increasing knowledge at the organizational level can improve individuals understanding of 
notification efforts and willingness to participate in the process. 
For information on spouse and partner notification to be heard and accepted by the 
population at large, it must come from individuals who command respect by a given 
population.  The messages acceptance will hinge on the speakers legitimacy with the 
listeners.  In addition, efforts to publicize this information must be targeted, the message 
clear.  A message that is simple, easy to comprehend and explained by a trusted speaker 
has the best chance of convincing individuals to participate in spouse and partner 
notification for HIV. 
In order to publicize the process and benefits of spouse and partner notification, we 
recommend that CDC establish targeted public affairs efforts.  Spouse and partner 
notification should be addressed at senior levels in the department, and information about 
State efforts should be conveyed to interested and affected parties in a manner that 
increases the issues acceptability.  Programs should complement CDC and other efforts 
currently underway. 
The CDC currently funds State efforts to increase individuals knowledge of their HIV 
status.  Much of the funds go to health departments to support the development of new 
and innovative early identification strategies to reach high risk populations and create 
linkages with care.  Special emphasis is placed on projects that target minority 
populations, including women and adolescents.  Funded activities may include coalition 
building, product development, outreach activities, and evaluation of effective 
interventions. 
The funds are also used to promote risk reduction interventions to help those uninfected 
to stay that way, and to encourage those infected to practice safe behaviors to prevent the 
spread to others. The Secretary's Emergency Fund for HIV/AIDS funds such projects. 
Facilitate local cooperation and collaboration 
Respondents at the national, State and local levels indicated that cooperation between 
State health departments, private groups and individuals is necessary for a successful 
notification program.  Cooperative efforts require good working relationships. 
22 
Ryan White CARE Act: Spousal Notification  OEI-05-98-00391  Unfortunately, several respondents indicated that private and public health professionals in 
many States do not have strong relationships. Efforts to strengthen these relationships and 
improve knowledge can greatly improve outcomes for elicitation and notification efforts. 
We recommend that CDC facilitate local level collaboration between State and local 
public health and private providers through State medical societies, nurse practitioner 
groups and other provider groups.  The CDC can encourage State and local public health 
agencies to facilitate this process by continuing to offer guidance and training to public 
health departments.  Private providers should be encouraged to participate in trainings and 
other information sharing efforts.  This is especially important as at least 80 percent of 
HIV tests are conducted in the private sector, yet these providers are often not linked to 
the State or local notification systems.  Trainings, technical assistance and other written 
and oral guidance can help public health departments and private providers understand the 
process of spouse and partner notification, their roles in the process and the benefits of 
spouse and partner notification.  Such efforts can also encourage public health and private 
providers to work together to improve their relationships in ways which smooth the 
process of notification. 
Share good practices, replicable efforts 
While each State has unique issues which stem from governmental structure, program 
needs, affected population and State laws, some public health practices can be successfully 
utilized in multiple locales with only small variations.  We recommend that CDC facilitate 
the sharing of information about successful State notification practices, including training, 
data collection and other efforts which enhance spouse and partner notification outcomes. 
The CDC should sponsor multi-State meetings on notification issues and efforts, and 
encourage the spread of promising practices.  As this is an area in which CDC has 
experience, current conferences and meetings can be utilized for information sharing 
purposes. 
23 
Ryan White CARE Act: Spousal Notification  OEI-05-98-00391  Encourage the establishment of data collection systems 
Data can be a useful part of a States spouse and partner notification program. 
Information collected on elicitation and notification efforts provide a snapshot of what 
efforts are working and which areas may need more attention.  Data can encourage HIV 
counselors, private providers and public health staff who are successful at eliciting and 
notifying spouses and partners.  It can also be used to provide benchmarks against which 
struggling providers and programs can measure themselves. 
There may be reasons why a successful notification program may elicit and notify few 
partners.  Some newly identified HIV cases may elicit few contacts because the individual 
may have had a limited number of partners.  Similarly, notification efforts are affected by 
the quality of elicited information, which is impacted by the time period between an 
individuals last contact with a partner and the date they are asked for information. 
Memory is fallible, and people move, change names and die. 
The fallibility of data aside, data collection can help recognize successful efforts, 
encourage providers, counselors and others involved with notification, and help identify 
areas for improvement in elicitation and notification. 
We recommend that CDC encourage the development and use of data collection systems 
for spouse and partner elicitation and notification.  The agency should facilitate the 
development of pilot and full-scale data collection programs by informing States of key 
data elements and collection procedures, by identifying successful State data collection 
efforts and by facilitating information sharing between States on notification data 
collection issues. 
Although some States do conduct their notification programs in conjunction with their 
HIV surveillance efforts, data collection does not require the collection and storage of 
partner names or identifying information.  Most States which collect elicitation and 
notification data aggregate their information in order to get a sense of trends and 
successes.  Analysis of this data does not call for personal information on index cases or 
partners, as indicated by the work of one State which completely separates its HIV 
surveillance data from its elicitation and notification information. 
Comments on implementation costs 
The OIG recognizes that our recommendations have costs to States and the Federal 
government.  The publicity and trainings we recommend require State and local partner 
notification staff to be hired and trained and private providers to be trained and included in 
public program efforts.  Successful public awareness programs will increase costs 
associated both with locating, counseling and interviewing HIV-infected persons and their 
24 
Ryan White CARE Act: Spousal Notification  OEI-05-98-00391  partners and with program administration.  Successful campaigns will encourage more 
providers to refer patients to participate in partner notification efforts.  Additionally, 
instituting data collection programs could significantly increase costs to local, State and 
Federal governments. 
We are uncertain of the cost of fully implementing the recommendations we have made. 
Few cost estimates exist on partner notification.  In 1997, CDC estimated that fully 
implementing partner notification services using existing notification guidelines would 
require an additional national outlay of at least $20-30 million.  This amount does not 
include the cost of establishing State data collection systems or conducting targeted public 
awareness campaigns.  Additionally, CDC notes that resources to perform a 
comprehensive PCRS program are inadequate to meet current needs.  The CDC estimates 
that the cost of implementing OIGs above recommendations would require an outlay 
which is two to three times current resources. 
The OIG recognizes the substantial costs involved in the development and use of data 
collection systems and the implementation of public awareness campaigns.  Our 
recommendations are contingent on the availability of funding for such efforts. 
25 
Ryan White CARE Act: Spousal Notification  OEI-05-98-00391  A G E N C Y  C O M M E N T S  
We would like to thank the Centers for Disease Control and Prevention and the Health Resources 
and Services Administration for commenting on the draft of this report. 
The Centers for Disease Control and Prevention suggested some additions and a change to the 
first recommendation.  Based on their comments, some changes and clarifications were made to 
this report.  In particular, at their suggestion we have attached their guidance to State public 
health officials regarding certification of compliance with the spousal notification requirement. 
These guidelines provide examples of principles and practices that constitute a good faith effort 
for certification. The full text of their comments is attached. 
The Health Resources and Services Administration concurred with our recommendations and had 
no additional comments. 
26 
Ryan White CARE Act: Spousal Notification  OEI-05-98-00391  APPENDIX A 
Centers for Disease Control and Prevention 

Comments on the Draft Report

27 
Ryan White CARE Act: Spousal Notification  OEI-05-98-00391  APPENDIX A 
Centers for Disease Control and Prevention 

Comments on the Draft Report

28 
Ryan White CARE Act: Spousal Notification  OEI-05-98-00391  APPENDIX B 
CDC Guidance to State Public Health Officials Regarding

Certifications of Compliance with Public Law 104-146

Centers for Disease Control and Prevention (CDC) and Health Resources and Services 
Administration (HRSA) 
Examples of Principles and Practices Regarding HIV Spousal Notification that Constitute 
a Good Faith Effort 
SUMMARY: On May 20, 1996, the Ryan White CARE Reauthorization Act was signed into law 
(P.L. 104-146).  Section 8(a) requires that States take administrative or legislative action to 
require that a good faith effort be made to notify a spouse of a known HIV-infected patient that 
such spouse may have been exposed to the human immunodeficiency virus and should seek 
testing.  Under this section, States that fail to take administrative or legislative action will be 
ineligible to receive grant funds under Part B of the Ryan White CARE Act administered by 
HRSA. 
Currently, CDC requires all health department recipients of HIV prevention funding to establish 
standards and implement procedures for partner notification consistent with State/local needs, 
priorities, and resource availability. 
States must certify to CDC that they have taken the administrative or legislative actions necessary 
to require a good faith effort to ensure that spouses of known HIV-infected individuals are 
notified of their possible exposure to HIV and referred for testing. 
All identifying information regarding HIV-infected patients and spouses must be kept confidential. 
No personally identifying information shall be disclosed unless required by State law or political 
subdivision, or unless the individual provides written, voluntary informed consent.  Anonymous 
HIV testing does not preclude effective partner or spousal notification.  Unless prohibited by 
State law or regulation, reasonable opportunities to receive HIV-antibody counseling and testing 
services anonymously should continue to be offered.  Anonymous testing services may encourage 
some persons at risk of HIV, who might otherwise be reluctant to be tested, to seek testing. 
The following are examples of public health principles and practices that constitute a good faith 
spousal notification effort by States.  States should review these examples, but are not limited to 
them in considering which policies, systems, or actions will be appropriate for their jurisdictions. 
29 
Ryan White CARE Act: Spousal Notification  OEI-05-98-00391  APPENDIX C 
Spouse and Partner Notification Activities: State Level Data

1.	 Individuals reported to the State on or after April 1, 1997, as diagnosed with AIDS (or 
HIV infection in States requiring HIV-infection reporting by law or regulation), if not 
already determined by the reporting health care provider, each such individual shall be a) 
asked if they have, or have had, a spouse (defined by this law as any individual who is the 
marriage partner of an HIV-infected patient, or who has been the marriage partner of that 
patient at any time within the 10-year period prior to diagnosis of HIV infection), and b) 
informed that he or she should notify their spouse, or former spouse(s), of the potential 
exposure to HIV. 
2.	 Reasonable efforts must be made to determine if each HIV-infected individual intends to 
notify his or her spouse of their possible exposure to HIV or agrees to have a qualified 
health care provider notify them.  In situations where the HIV-infected individual reports 
that he or she intends to notify the spouse, culturally competent counseling and 
educational services on the following issues should be available--how to make the 
notification, how to preserve confidentiality of both the individual and the spouse, how 
HIV infection and transmission can be prevented, and how the spouse can access testing, 
other prevention services, and treatment.  If the HIV-infected individual is unable or 
unwilling to notify his or her spouse, culturally competent services should be available 
from the provider or the health department to do so.  Unless covered by existing law, 
policy, or regulation, States should develop policies that address situations involving HIV-
infected individuals who do not plan to notify their spouses and who refuse health 
department assistance.  In developing these laws, policies, or regulations, States should 
consider guidance contained in Guide to Public Health Practice: HIV Partner 
Notification Strategies (Association of State and Territorial Health Officials, et. al., 1988). 
Notification is not necessary in situations where, in the judgement of public health 
officials, there has been no sexual exposure of a spouse to a known HIV-infected 
individual during the relevant time frame. 
3.	 Reasonable procedures to ensure that notified spouses receive referrals for HIV testing, 
other prevention services, and treatment should be implemented. 
4.	 Health departments that document spousal notification policies and practices of public and 
private health care providers reporting AIDS and HIV that meet State requirements or 
establish agreements with them for this purpose need not directly contact every HIV-
infected individual reported by such providers for purposes of spousal notification. 
Table 1:  State Spousal Notification Efforts - Actions Described in Certifications . . . . . . . . . . .  32 
30 
Ryan White CARE Act: Spousal Notification  OEI-05-98-00391  APPENDIX C 
Spouse and Partner Notification Activities: State Level Data

Table 2:  Barriers to Spousal Notification and State Solutions  . . . . . . . . . . . . . . . . . . . . . . . . . 35

Table 3:  Data Collection in the 11 Sampled States  . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 38

31 
Ryan White CARE Act: Spousal Notification  OEI-05-98-00391  APPENDIX C 
Spouse and Partner Notification Activities: State Level Data

Table 1:  State Spousal Notification Efforts - Actions Described in Certifications5 
Action Description  Action Type  State/States 
ALLOW NOTIFICATION  Legislative  AL AZ CT DE GA HI ID IL IN IA 
This includes: freedom from liability  KS KY LA ME MD MI MS MO 
for notification and active  NH NY OH RI SC TN UT VA WI 
responsibility to make a good faith  WY 
effort to notify or facilitate 
Administrative  AL AK AZ AR CA CO DE DC FL 
notification. 
IN MA MN MT NE NV NH NJ NM 
NY NC ND OK OR PA SD TX VT 
WA WV 
REQUIRE OR OFFER COUNSELING  Legislative  AL FL MD MS NY VA 
ON NOTIFICATION 
Most, if not all, States appear to do 
this to some degree, but not all 
States codify this in law.  Other 
States have policies regarding  Administrative  AL AK AR CO CT DE DC GA HI 
notification counseling, but not all  IL IN IA KS MA MI MN MO MT 
have noted these policies in their  NV NH NJ NM OH OK OR SD TN 
certifications.  TX UT VT WA WV WI 
OUTLINE PROVIDER AND PUBLIC  Legislative  AL AK CT ID MD MI MS NV NH 
HEALTH STAFF PARTICIPATION  NC SC WY 
Some States put an affirmative duty 
on the public health department, 
private physicians or the person  Administrative  AZ CO DE DC FL HI IN IA KS KY 
performing post-test counseling to  LA ME MA MN MT NV NH NJ 
carry out notification.  NM NC ND OH OK SD TX UT VT 
VA WY WI 
5This table is based on information provided to the CDC by States. Some State certifications contained 
attachments which were not available to OIG during our analysis. Any information contained in such an 
attachment may be missing from the information provided in this table. 
32 
Ryan White CARE Act: Spousal Notification  OEI-05-98-00391  APPENDIX C 
Spouse and Partner Notification Activities: State Level Data

Table 1:  State Spousal Notification Efforts - Actions Described in Certifications, continued 
Action Description  Action Type  State/States 
REPORT HIV CASES FOR PUBLIC  Legislative  AK MS MO NY6 
HEALTH PARTNER NOTIFICATION 
FOLLOW UP  Administrative  CO7  CT IA MN NH OK SC SD
WV8  WI
REQUIRE VERIFICATION OF A  Legislative  OK 
NOTIFICATION PERFORMED BY AN 
INDEX CASE  Administrative  AL CO MN TN WV WI 
ENSURE CONFIDENTIALITY  Legislative  CA CT NY VA 
Administrative  CO DE DC ID LA MA MT NJ NM 
NC OH OK SD TN TX WY 
UTILIZE CDC GUIDELINES,  Administrative  AL AK AR ID NH 
FORMS 
REVISE NOTIFICATION LAWS,  Legislative  MD 
POLICIES, GUIDELINES TO 
ADDRESS SPOUSAL  Administrative  AK AZ CA9  CO DE FL IA KS KY
REQUIREMENTS  NE LA MA MI MO MT NV NH 
NM NY ND OR PA RI SC TX UT 
WA WV WI WY 
6This is part of the new law under implementation in New York. 
7Verification is performed if the HIV-positive individual agrees to participate in notification and wants to 
notify their spouse/partner on their own. 
8Follow-up occurs for persons tested in the private sector. Persons tested in the public sector 
automatically receive notification counseling. 
9The State encourages local programs to change the language in their guidelines, policies, etc. to address 
spousal notification issues. 
33 
Ryan White CARE Act: Spousal Notification  OEI-05-98-00391  APPENDIX C 
Spouse and Partner Notification Activities: State Level Data

Table 1:  State Spousal Notification Efforts - Actions Described in Certifications, continued 
Action Description  Action Type  State/States 
DISCUSS SPOUSES AND PARTNERS  Administrative  AL AK AR CO CT DE DC FL HI 
These State certifications specifically  IL IN IA KS KY LA ME MA MI 
indicate that HIV counseling  MN MS MO MT NE NV NH NJ 
includes discussion of both  NM ND OH OK OR SD TN TX VA 
individuals partners and spouses  WA WV WI 
and notification issues generally.10 
AMEND CONTRACTS AND  Administrative  AL AK AZ CA CO CT DC FL HI 
MEMORANDAS OF  ID IL IN KS LA MA MO MT NE 
UNDERSTANDING (MOUS)  NV NH NM ND OH OR PA TX 
UT WV WI 
PUBLICIZE RULES, LAWS,  Administrative  AL AK AZ AR CA CO CT DE DC 
POLICIES  FL HI IL IN KS KY LA ME MD 
MI MN MS MT NE NV NH NM 
NY ND OH OR PA TX UT WV WI 
REVISE TRAINING AND TRAINING  Administrative  AK AZ CA IN KY MA NV NM NY 
MATERIALS  RI TX WA 
10Although State programs generally require or encourage this in their counseling guidelines, not all 
States mentioned it in their certifications. 
34 
Ryan White CARE Act: Spousal Notification  OEI-05-98-00391  APPENDIX C 
Spouse and Partner Notification Activities: State Level Data

Table 2:  Barriers to Spousal Notification and State Solutions 
Issue  Description  State Solutions 
Legislative and  State laws (including patient  Address both patient confidentiality concerns 
Administrative  confidentiality laws) limit who may  and public health protection by involving 
be informed of a persons HIV status  newly diagnosed individuals in the notification 
Barriers 
and how such notification can occur.  process. 
Most States require that the identity  Require counselors and providers to first try to 
of the index case not be revealed  gain patient consent before proceeding with 
through HIV notification.  notification without patient consent. 
Some States administrative rules or  If a tested individual refuses to cooperate, the 
policies disallow partner notification  provider must inform the person that they will 
without patient consent.  notify. The patients wishes regarding 
whether the provider or State public health 
staff will conduct the notification must also be 
followed. 
Fitting  States partner elicitation and  States with high HIV prevalence: Structure the 
Notification into  notification programs are often  notification program around existing service 
shaped by States HIV prevalence and  providers and testing sites. With many 
State Structure 
the structure of their State and local  HIV-positive individuals, the cost of a 
governments.  program not tied to existing structures may 
otherwise be prohibitive. 
Designing a program without taking 
local issues, strengths and  States with low HIV prevalence: Augment 
weaknesses into account will hinder  efforts by State-funded staff with private HIV 
program success.  test site counselors trained to elicit names. 
County autonomy: Develop a framework 
notification program within which each 
county can develop program details to fit the 
locality. Each county designs its notification 
program; the State can offer training to local 
HIV counselors and notification staff. 
35 
Ryan White CARE Act: Spousal Notification  OEI-05-98-00391  APPENDIX C 
Spouse and Partner Notification Activities: State Level Data

Table 2:  Barriers to Spousal Notification and State Solutions, continued 
Issue  Description  State Solutions 
Physicians and  The Hippocratic oath orders  Encourage physician participation by 
Elicitation  physicians to tell no secret obtained  following up with providers who test 
through the therapeutic relationship.  individuals for HIV. Ask providers to return 
forms indicating their elicitation efforts. 
Physicians vary in their ability and  State-hired nurses who conduct follow-up 
motivation to ask patients about their  work with physicians reporting HIV cases. 
partners; many private physicians do 
not have the time or inclination to  Offer HIV counseling training to private and 
elicit names.  public counseling and testing staff. Make 
completion of a training program mandatory 
Many physicians test only a few  for anyone providing HIV counseling and 
patients a year and are not practiced  testing. Encourage participation in the 
in HIV counseling and name  notification process by increasing providers 
elicitation.  notification-related knowledge and skill base. 
Counselors and  Many HIV counselors are hesitant to  Stress counselor training and a corporate 
Elicitation  push patients to elicit partners, as  culture in which partner notification is 
they do not want to alienate the  understood and valued. 
patient. 
Counselors, physicians and those managing 
Many counselors do not want to  test facilities must recognize the importance of 
broach topics which may impact the  partner notification and understand the central 
patients willingness to return for  role elicitation plays in that process. 
services. 
Counselors skills and the relationships they 
Some providers may not entirely  establish with the community are key to 
understand the partner notification  successful notification efforts. A skilled 
process.  counselor establishes a rapport with a client 
and clearly explains the benefits of 
notification. This can greatly improve the 
affected individuals willingness to reveal 
behaviors and names to an individual the 
client has just met. 
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Ryan White CARE Act: Spousal Notification  OEI-05-98-00391  APPENDIX C 
Spouse and Partner Notification Activities: State Level Data

Table 2:  Barriers to Spousal Notification and State Solutions, continued 
Issue  Description  State Solutions 
Patients  HIV notification can usually only  Clearly identify notification as a voluntary 
proceed with the clients consent and  process. Market spouse and partner 
cooperation. A client may not be able  notification as a service rather than an 
or willing to discuss partners while  imposition. Require post-test counseling to 
digesting HIV test results.  include a discussion of the benefits of 
notification, a description of the process and 
Patients may lack information about  an explanation of available services and 
partners from longer time periods or  participation options. 
may refuse to identify spouses due to 
domestic violence concerns. 
37 
Ryan White CARE Act: Spousal Notification  OEI-05-98-00391  APPENDIX C 
Spouse and Partner Notification Activities: State Level Data

Table 3:  Data Collection in the 11 Sampled States 
Type of Data Collected  States 
Number of newly identified index cases eligible for post-test interview  FL MO NJ NC 
Number of index cases which result in a notification discussion  FL MO NJ NY 
NC 
Number of index cases which result in spouse or partner elicitation*  FL NJ NC 
Number of contact notifications that were spousal notifications  NJ 
Number of index cases interviewed within specific time frames  FL NC 
Average contact index (average number of contacts elicited per interview)  MO NJ NC 
Total number of contacts elicited from all interviews  FL MO NJ NC 
Number of elicited partners who were notified within a certain time period  FL NJ NC 
Number of elicited partners who were not contacted or notified  FL NJ NC 
Disposition of HIV test administered to a notified spouse or partner  FL NJ 
Notes:

*This category differs from the previous one in that Missouri and New York monitor whether a notification

discussion occurred, not whether contacts were elicited. It can be assumed that if contacts were elicited, a

discussion occurred. Thus, some States listed as tracking information in this category are also listed as tracking

information in the Number of cases which result in a notification discussion category.

Florida - Cases are tracked by closed cases only. Cases which do not result in an interview are sorted by reason

for lack of interview - refused interview, unable to locate and other. The State also notes how many contacts

are new partners. Of the new partners, the interview activity report records how many have had a previous

negative HIV test, how many have not been tested and how many refused to be tested.

Missouri - A new case is one which has not been previously reported to the State. All newly reported HIV cases

are interviewed, unless a physician specifically indicates that the patient should not be contacted. The interview

consists of spouse and partner elicitation and referral to HIV care services. 

North Carolina - Monthly Epidemiologic Case Reports also track the number of cases which do not result in an

elicitation interview and the number of cases with no contacts named. All the information is tracked for HIV cases

and AIDS cases. The data is also broken out by gender of the index case. 

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Ryan White CARE Act: Spousal Notification  OEI-05-98-00391