Department of Health and Human Services 

OFFICE OF 

INSPECTOR GENERAL 

JUNE GIBBS BROWN 

Inspector General 

AUGUST 1999 

OEI-05-98-00391 

THE RYAN WHITE CARE ACT 

Implementation of the Spousal 

Notification Requirement 
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 
EXECUTIVE SUMMARY 

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 CDC’s 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. 

Ryan White CARE Act: Spousal Notification 1 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. 

Ryan White CARE Act: Spousal Notification 2 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 issue’s 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. 

Ryan White CARE Act: Spousal Notification 3 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. 

Ryan White CARE Act: Spousal Notification 4 OEI-05-98-00391 
TABLE OF CONTENTS 

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

Ryan White CARE Act: Spousal Notification 5 OEI-05-98-00391 
INTRODUCTION 

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. 

Ryan White CARE Act: Spousal Notification 6 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 agency’s 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 CDC’s 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 

Ryan White CARE Act: Spousal Notification 7 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, CDC’s 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 CDC’s 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. 

1

Also see Appendix B for examples of “good faith effort” principles and practices that CDC provided to 

State public health officials. 

Ryan White CARE Act: Spousal Notification 8 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. 

Ryan White CARE Act: Spousal Notification 9 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 State’s 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 President’s Council on Integrity and Efficiency. 

Ryan White CARE Act: Spousal Notification 10 OEI-05-98-00391 
FINDINGS 

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 individual’s diagnosis is discussed. An HIV counselor may be employed by the State, 

local health department or a private agency. 

2

For further information on the activities States describe in their applications, see Table 1: “State Spousal 

Notification Efforts - Actions Described in Certifications” in Appendix C. 

Ryan White CARE Act: Spousal Notification 11 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 

State’s 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 client’s 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 patient’s spouse, that physician is required to give the 

spouse’s 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 case’s permission if the 

provider knows the spouse’s 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. 

Ryan White CARE Act: Spousal Notification 12 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 State’s AIDS office, in conjunction with the sexually transmitted disease control 

program’s 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. 

Ryan White CARE Act: Spousal Notification 13 OEI-05-98-00391 
States are responding to common barriers3 

Legislative and administrative issues 

State laws limit who may be informed of an individual’s 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 spouse’s 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 patient’s 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 spouse’s 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 

3

Also see Table 2: “Barriers to Spousal Notification and State Solutions” in Appendix C. 

Ryan White CARE Act: Spousal Notification 14 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 

State’s 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. 

Ryan White CARE Act: Spousal Notification 15 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 patient’s 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 individual’s 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. 

Ryan White CARE Act: Spousal Notification 16 OEI-05-98-00391 
Patients 

HIV spouse and partner notification can usually only proceed with the patient’s 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. 

Ryan White CARE Act: Spousal Notification 17 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. 

Ryan White CARE Act: Spousal Notification 18 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 partner’s 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 case’s 

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 

4

For information on what types of data States collect, see Table 3: “Data Collection in the 11 Sampled 

States” in Appendix C. 

Ryan White CARE Act: Spousal Notification 19 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. 

Ryan White CARE Act: Spousal Notification 20 OEI-05-98-00391 
RECOMMENDATIONS 

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. 

Ryan White CARE Act: Spousal Notification 21 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 provider’s 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 message’s acceptance will hinge on the speaker’s 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 issue’s 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. 

Ryan White CARE Act: Spousal Notification 22 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. 

Ryan White CARE Act: Spousal Notification 23 OEI-05-98-00391 
Encourage the establishment of data collection systems 

Data can be a useful part of a State’s 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 

individual’s 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 

Ryan White CARE Act: Spousal Notification 24 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 OIG’s 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. 

Ryan White CARE Act: Spousal Notification 25 OEI-05-98-00391 
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. 

Ryan White CARE Act: Spousal Notification 26 OEI-05-98-00391 
APPENDIX A 

Centers for Disease Control and Prevention 

Comments on the Draft Report

Ryan White CARE Act: Spousal Notification 27 OEI-05-98-00391 
APPENDIX A 

Centers for Disease Control and Prevention 

Comments on the Draft Report

Ryan White CARE Act: Spousal Notification 28 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. 

Ryan White CARE Act: Spousal Notification 29 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 HIVinfected 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 HIVinfected individual reported by such providers for purposes of spousal notification. 

Table 1: State Spousal Notification Efforts - Actions Described in Certifications ........... 32 

Ryan White CARE Act: Spousal Notification 30 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

Ryan White CARE Act: Spousal Notification 31 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 

This includes: freedom from liability 

for notification and active 

responsibility to make a good faith 

effort to notify or facilitate 

notification. 

Legislative AL AZ CT DE GA HI ID IL IN IA 

KS KY LA ME MD MI MS MO 

NH NY OH RI SC TN UT VA WI 

WY 

Administrative AL AK AZ AR CA CO DE DC FL 

IN MA MN MT NE NV NH NJ NM 

NY NC ND OK OR PA SD TX VT 

WA WV 

REQUIRE OR OFFER COUNSELING 

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 

notification counseling, but not all 

have noted these policies in their 

certifications. 

Legislative AL FL MD MS NY VA 

Administrative AL AK AR CO CT DE DC GA HI 

IL IN IA KS MA MI MN MO MT 

NV NH NJ NM OH OK OR SD TN 

TX UT VT WA WV WI 

OUTLINE PROVIDER AND PUBLIC 

HEALTH STAFF PARTICIPATION 

Some States put an affirmative duty 

on the public health department, 

private physicians or the person 

performing post-test counseling to 

carry out notification. 

Legislative AL AK CT ID MD MI MS NV NH 

NC SC WY 

Administrative AZ CO DE DC FL HI IN IA KS KY 

LA ME MA MN MT NV NH NJ 

NM NC ND OH OK SD TX UT VT 

VA WY WI 

5

This 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. 

Ryan White CARE Act: Spousal Notification 32 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 

HEALTH PARTNER NOTIFICATION 

FOLLOW UP 

Legislative AK MS MO NY6 

Administrative CO CT IA MN NH OK SC SD 7 

WV WI 8 

REQUIRE VERIFICATION OF A 

NOTIFICATION PERFORMED BY AN 

INDEX CASE 

Legislative OK 

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, 

FORMS 

Administrative AL AK AR ID NH 

REVISE NOTIFICATION LAWS, 

POLICIES, GUIDELINES TO 

ADDRESS SPOUSAL 

REQUIREMENTS 

Legislative MD 

Administrative AK AZ CA CO DE FL IA KS KY 9 

NE LA MA MI MO MT NV NH 

NM NY ND OR PA RI SC TX UT 

WA WV WI WY 

6

This is part of the new law under implementation in New York. 

7

Verification is performed if the HIV-positive individual agrees to participate in notification and wants to 

notify their spouse/partner on their own. 

8

Follow-up occurs for persons tested in the private sector. Persons tested in the public sector 

automatically receive notification counseling. 

9

The State encourages local programs to change the language in their guidelines, policies, etc. to address 

spousal notification issues. 

Ryan White CARE Act: Spousal Notification 33 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 

These State certifications specifically 

indicate that HIV counseling 

includes discussion of both 

individuals’ partners and spouses 

and notification issues generally.10 

Administrative AL AK AR CO CT DE DC FL HI 

IL IN IA KS KY LA ME MA MI 

MN MS MO MT NE NV NH NJ 

NM ND OH OK OR SD TN TX VA 

WA WV WI 

AMEND CONTRACTS AND 

MEMORANDAS OF 

UNDERSTANDING (MOUS) 

Administrative AL AK AZ CA CO CT DC FL HI 

ID IL IN KS LA MA MO MT NE 

NV NH NM ND OH OR PA TX 

UT WV WI 

PUBLICIZE RULES, LAWS, 

POLICIES 

Administrative AL AK AZ AR CA CO CT DE DC 

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 

MATERIALS 

Administrative AK AZ CA IN KY MA NV NM NY 

RI TX WA 

10Although State programs generally require or encourage this in their counseling guidelines, not all 

States mentioned it in their certifications. 

Ryan White CARE Act: Spousal Notification 34 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 

Administrative 

Barriers 

State laws (including patient 

confidentiality laws) limit who may 

be informed of a person’s HIV status 

and how such notification can occur. 

Most States require that the identity 

of the index case not be revealed 

through HIV notification. 

Some States’ administrative rules or 

policies disallow partner notification 

without patient consent. 

Address both patient confidentiality concerns 

and public health protection by involving 

newly diagnosed individuals in the notification 

process. 

Require counselors and providers to first try to 

gain patient consent before proceeding with 

notification without patient consent. 

If a tested individual refuses to cooperate, the 

provider must inform the person that they will 

notify. The patient’s wishes regarding 

whether the provider or State public health 

staff will conduct the notification must also be 

followed. 

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. 

Designing a program without taking 

local issues, strengths and 

weaknesses into account will hinder 

program success. 

States with high HIV prevalence: Structure the 

notification program around existing service 

providers and testing sites. With many 

HIV-positive individuals, the cost of a 

program not tied to existing structures may 

States with low HIV prevalence: Augment 

efforts by State-funded staff with private HIV 

test site counselors trained to elicit names. 

otherwise be prohibitive. 

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. 

Ryan White CARE Act: Spousal Notification 35 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 

Elicitation 

The Hippocratic oath orders 

physicians to “tell no secret” obtained 

through the therapeutic relationship. 

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. 

Encourage physician participation by 

following up with providers who test 

individuals for HIV. Ask providers to return 

State-hired nurses who conduct follow-up 

work with physicians reporting HIV cases. 

Offer HIV counseling training to private and 

public counseling and testing staff. Make 

for anyone providing HIV counseling and 

testing. Encourage participation in the 

notification process by increasing providers’ 

notification-related knowledge and skill base. 

forms indicating their elicitation efforts. 

completion of a training program mandatory 

Counselors and 

Elicitation 

Many HIV counselors are hesitant to 

push patients to elicit partners, as 

they do not want to alienate the 

patient. 

Many counselors do not want to 

broach topics which may impact the 

patient’s willingness to return for 

services. 

Some providers may not entirely 

understand the partner notification 

process. 

Stress counselor training and a “corporate 

culture” in which partner notification is 

understood and valued. 

test facilities must recognize the importance of 

partner notification and understand the central 

role elicitation plays in that process. 

establish with the community are key to 

successful notification efforts. A skilled 

counselor establishes a rapport with a client 

Counselors, physicians and those managing 

Counselors’ skills and the relationships they 

and clearly explains the benefits of 

notification. This can greatly improve the 

affected individual’s willingness to reveal 

behaviors and names to an individual the 

client has just met. 

Ryan White CARE Act: Spousal Notification 36 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 

proceed with the client’s consent and 

cooperation. A client may not be able 

or willing to discuss partners while 

digesting HIV test results. 

Patients may lack information about 

partners from longer time periods or 

may refuse to identify spouses due to 

domestic violence concerns. 

Clearly identify notification as a voluntary 

process. Market spouse and partner 

notification as a service rather than an 

imposition. Require post-test counseling to 

include a discussion of the benefits of 

an explanation of available services and 

participation options. 

notification, a description of the process and 

Ryan White CARE Act: Spousal Notification 37 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. 

Ryan White CARE Act: Spousal Notification 38 OEI-05-98-00391