Partner notification law opens prevention door
States have till February to comply or lose funds
A spousal notification requirement included in the Ryan White CARE Reauthorization Act has been attacked as poor public-health legislation, yet it has prompted a renewed commitment to contact the partners of HIV-infected people, say federal health officials.
"This legislation doesn’t make a lot of sense on the face of it, in terms of its effectiveness, by limiting it to spouses. That is the bad news," says Mark Smith, MD, MPH, vice president of the Henry Kaiser Family Foundation, a nonprofit health research organization in Menlo Park, CA. "The good news is that the overlap between people truly at risk and the people targeted [by the act] is probably not a big resource issue. This is an opportunity to maximize the positive benefits of partner notification and minimize the potential for wasting resources."
The Centers for Disease Control and Prevention presented its response to the new law during the November meeting of the CDC’s Advisory Committee for HIV/STD Prevention. In discussing the requirements, committee chairman Smith and other members concurred with CDC officials that the act was more political than public-health oriented, but they added that it provided an opportunity to re-evaluate and revise partner notification efforts.
"The reality is someone felt strongly enough about it that it got passed, and we have an obligation to comply with it," says Helene Gayle, MD, MPH, director of the CDC’s Center for HIV, STD, and TB Prevention. "Our feeling is, that being the case, let’s look more broadly in this area and see if we can’t make policies that do have public-health impact given that this one probably doesn’t."
An amendment attached to the act, which provides the bulk of federal AIDS funding to states and was up for renewal last year, requires states certify to the CDC "a good-faith effort for notification of known HIV-infected individuals. States must also summarize actions taken and relevant actions that are planned." States that don’t complete the certification by Feb. 1, 1997, face suspension of Ryan White Title II funding, which will begin in April.
A spouse is identified as any legal marriage partner within 10 years prior to diagnosis of HIV. Although CDC officials could not estimate the number of HIV-positive people who are married, they say it would be a relatively small portion of the HIV population and that the requirement has limited scope.
By limiting partner notification to spouses only, the law has left out the majority of couples who are at highest risk for HIV transmission. Not including all high-risk couples in partner notification efforts amounts to "medical malpractice in a sense," said committee member Neil Schram, MD, an AIDS physician with the Southern California Permanente Medical Group in Harbor City.
Partner notification receives the largest slice of HIV counseling and testing funding provided by the federal government, and yet there has been little evaluation of its effectiveness. There is no national standard or model for partner notification of HIV-positive people, primarily because laws vary state to state regarding what type of notification is legal.
"Partner notification is perceived as something that is practiced in a very diverse and variable way throughout the states, and there is a lack of consensus about what effective partner notification is," Gayle says.
Four years ago, the advisory committee issued a report highly critical of the CDC’s partner notification program. One criticism was that partners were notified but were not given adequate counseling on HIV prevention or provided with HIV services. Only recently, however, has the program received much attention, prompted in part by the Ryan White Act requirement and a report from the Washington, DC-based Institute of Medicine calling for a national campaign to fight sexually transmitted diseases (See related story on the campaign, p. 7.)
"We have felt for some time there was more we needed to know about how to do partner notification in a more optimal way," says Judith Wasserheit, MD, director of the CDC’s division of STD prevention. "You have got to do it in the most effective and cost-effective way, and our feeling is there is room for improvement."
Toward that end, a working group of CDC staff and 50 consultants met in October and compiled recommendations on partner notification program policy and research issues. (See information on what the CDC considers good partner notification, p. 3.) As a result of that meeting, the CDC plans to survey states about spousal notification efforts, develop quality assurance standards and guidelines, and re-examine and develop process indicators more relevant to partner notification.
Research priorities include answering such long-standing questions as: What are current practices for partner notification? What are partner notification intervention indicators? What does partner notification cost, and what are the attributable outcomes? What happens to people after partner notification? What alternatives are there to partner notification? And how can people be empowered to tell their partners?
"Part of what we are trying to understand about partner notification is what determines the motivation of people to act on the knowledge that they have been exposed to an infection," says Wasserheit. "It is logical that some of the factors may differ depending on whether you are talking about a curable or incurable disease."
The working group issued several general points that partner notification programs need to consider:
• Programs must recognize that the idea or perception of partner notification may scare people away from HIV prevention services.
• Significant differences may exist between the traditional STD partner notification model and the partner notification model for HIV.
• Local flexibility is needed in implementing partner notification activities to accommodate needs, circumstances, roles, and goals of these activities within different programs.
• Partner notification activities should be brought into the community planning process, both to assess effectiveness in meeting goals and to determine intervention priorities.
The working group also concluded that partner notification activities are labor-intensive and require more resources. Also, staff who implement partner notification are often entry-level, while the tasks as envisioned are complex.
More immediately, the CDC will provide additional resources for technical assistance and training so states can meet the spousal notification requirements. The agency has not yet approved the methods for how it will monitor compliance to the law.
The language of the spousal notification law is vague on the point of what constitutes "a good faith effort." Hoping to clarify that term’s meaning, the working group provided four examples of minimal polices and practices that would meet the intention of the act:
1. Beginning on or before April 1, 1997, people reported to a state as diagnosed with AIDS (or HIV in states requiring HIV reporting) shall be asked if not already determined by the reporting health care provider two questions:
first, if they have or have had a spouse as defined by the law;
second, if they have informed their spouse or former spouse of their potential exposure to HIV.
2. Reasonable effort must be made to determine whether each HIV-positive person intends to notify his or her spouse of possible HIV exposure or agrees to have a qualified health care provider notify the spouse. Notification is not necessary in cases in which public health officials judge a spouse has not been sexually exposed to a known HIV-positive person during the relevant time frame.
3. Reasonable procedures should be implemented assuring that notified spouses receive referrals for HIV testing, other prevention services, and treatment.
4. Health departments that document spousal notification policies need not directly contact each and every HIV-positive person reported for purposes of spousal notification.
Another ambiguous piece of phrasing in the legislation is "known HIV-infected individuals." CDC officials say the wording was chosen to limit the law to those states where HIV name reporting is required. Currently more than half the states require such reporting. Although the law applies only to public facilities, the CDC urges private physicians to offer partner notification to their patients as well.
Special Report: Microbicides