Legislative Advocacy

Beyond AIDS Urges Changes in Ryan White Care Act As Reauthorization Approaches

[The following letter has been sent on behalf of Beyond AIDS to Senator Michael Enzi, author of this year's Ryan White Care Act Reauthorization Bill. It contains specific recommendations to strengthen the act with respect to HIV prevention. See also article below on hearing conducted by Senator Tom Coburn, on funding inequities and other problems under the current act.]

September 11, 2005

Reply to:
Beyond AIDS, Inland Empire
1540 Barton Road #435
Redlands, CA 92373

Honorable Senator Michael Enzi
United States Senate
Fax: (202) 228-0359
172 Russell Building
Washington, DC 20510

RE: Ryan White CARE Act Renewal: Important Recommendations to Improve the Control of HIV Transmission

Dear Senator Enzi:

We are writing on behalf of the Board of Beyond AIDS, to commend your work to date on crafting the Ryan White CARE Act 2005 reauthorization, to provide you with five specific recommendations to improve the bill from a public health perspective for prevention of HIV/AIDS transmission, and to endorse several additional recommendations from the Administration. Beyond AIDS is a national non-partisan organization of health professionals and concerned citizens, dedicated to reversing the course of the HIV epidemic by implementing sound public health policy.

In the 2000 amendments, thanks in large part to Republican leadership, the Ryan White CARE Act incorporated wording that created a strong fiscal incentive to states to adopt HIV reporting that meets federal standards, no later than FY 2007. The only HIV state reporting systems that have been found adequate by the Centers for Disease Control and Prevention (CDC) are those of some 38 states, which use reporting by name. Beyond AIDS strongly supports name-based HIV reporting, not only to obtain accurate, timely, and unduplicated information on the progress of the epidemic, but because the names reported can be used for life-saving preventive public health measures.


It is of the utmost importance that the deadline for adequate HIV reporting be maintained, and that there be no softening of the requirement or the penalty for failure to comply.

We are pleased that the Administration is supporting the maintenance of this important requirement.

We urge that you not yield to any entreaties from legislators from the handful of states that still employ ineffective reporting system utilizing secret codes.

During the past few months, Beyond AIDS was involved with a coalition of AIDS and public health agencies (including the California Health Officers Association, the County of Los Angeles, and the AIDS Healthcare Foundation), in a major effort to get an HIV reporting bill passed by the California Legislature. That bill, SB 945, was killed in committee by a handful of state legislators who challenged the resolve of Congress to maintain the HIV reporting requirement. They vowed not to permit an HIV reporting bill to pass in California unless Congress reaffirms the requirement and deadline of the 2000 amendments. This leaves California with a reporting system for HIV infections that have not progressed to AIDS, which requires secret 17-digit codes, which almost everyone (especially public health departments) admits does not work, and which is a barrier to partner notification and “prevention for positives.”

Many of the AIDS organizations that joined in supporting the California HIV reporting bill did so only to assure continued Ryan White funding, because of the language in the 2000 amendments. They were betting that Congress would maintain its resolve, in contrast to the legislators who were betting against that. But everyone agrees that California will remain without an adequate HIV reporting system unless the 2005 amendments maintain the requirement related to HIV reporting.


An alarming possibility developed during the development of the California bill. Until the last minute, the draft for SB 945 included wording that would have prohibited the names of reported HIV-infected persons from being used for any other purpose such as partner notification. No other states have adopted such language, but this type of legal provision could surface again in California or other states, and would be a terrible blow to public health. It would mean that a public health officer would know who was infected, but could not do any outreach or communication to help stop the chain of transmission, or even to refer patients to treatment services. It is of great importance that this year’s Ryan White renewal include a new amendment that denies all funding to any state that makes it illegal to use information from HIV prevention for partner notification or other prevention strategies.


In addition, we strongly urge CDC be required to develop guidelines, to be issued no later than the beginning of FY 2007, for specifically linking HIV reporting with contact tracing and partner notification, and with “prevention for positives” efforts such as prevention case management.

CDC’s guidelines to date have been ambiguous and inconsistent. One draft CDC document actually recommended against such linkage, while another draft document on partner notification agrees that partner notification is an essential activity.

Special CDC funding has been going recently to “prevention for positives” activities, yet CDC has never made it clear that public health departments may confidentially contact persons whose infections have been reported, to recruit them to participate in such activities. In contrast, for tuberculosis and syphilis, CDC has guidelines calling for persons reported as infected to be contacted by public health to identify potential contacts who should be tested, to encourage safe behavior that will not spread the infections, and to refer these persons to necessary services.


We also strongly urge that a significant and specific amount of prevention funding be reserved for grants to states and cities, administered through CDC, for developing linkages between HIV reporting and prevention strategies, including but not limited to contact tracing, partner notification, and prevention case management.

These grants should be for activities that are consistent with the required guidelines to be developed by CDC, and issuance should commence during FY 2007 and continue annually thereafter. Grants for innovative programs and demonstration projects should also be available during FY 2006, pending the CDC guidelines.


For many years, the Ryan White CARE Act has funded case management services. Case managers meet with infected persons to discuss housing, sustenance, access to medication, etc. But funding has not been specifically provided, nor has there been any requirement, for these Ryan White case managers to deal with prevention aspects of case management, e.g., helping infected persons to change unsafe behavior so as to avoid endangering others, and querying them periodically about past or new sexual or needle-sharing contacts who should be notified.

To help slow the development of drug resistance, helping clients to achieve medication regimen adherence should also be a topic of such case management. In many cases, a close rapport and trust develops between clients and case managers, making the latter an ideal group to address ongoing prevention issues. In this role, they would be an adjunct to public health departments, which are in general unfunded for HIV case management and do not have the advantage of the trust and rapport with clients. Contacts elicited by case managers over time could be reported to public health for notification services. Such activities and relationships are being successfully used in some local jurisdictions, and it is time that they the be federally funded and applied nationwide.

We recommend for this year’s renewal bill, that Congress authorize the use of case management money to train existing and new case managers to perform contact interviews, to counsel clients on behavior change and avoidance of high-risk behavior that may foster transmission, and to advise clients on methods of enhancing treatment adherence. Guidelines for this should be developed by HHS with CDC participation, during FY 2006. Beginning in FY 2008, prevention case management should be a mandatory component of Ryan White case management.

In addition to our five recommendations, we also support the following proposals from the Administration for this year’s Ryan White reauthorization:

Thank you for considering our recommendations. They are essential to finally control this epidemic of HIV infections, which far from being controlled, is actually increasing, with more than a million infected persons estimated by CDC as of December 2003. Hundreds of millions of dollars have been spent each year on prevention, with the amount approaching a billion dollars annually, yet we seem to be falling further behind. Clearly, new initiatives and new strategies are essential, yet they must also be evidence-based. The five proposals outlined above are consistent with successful evidence-based strategies used for the control of tuberculosis and syphilis, and programs implementing recommendations 4 and 5 have been successfully utilized for HIV in localized public health programs. Congress should adopt all of them and assure that they are incorporated into the 2005 Ryan White CARE Act renewal


Cary Savitch, MD, President
Ronald Hattis, MD, MPH, Secretary
Yvonne Pover, RDH, Treasurer

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