PROBLEMS, OPPORTUNITIES, AND RECOMMENDATIONS FOR MORE EFFECTIVE HIV CONTROL
An Agenda Offered to the CDC on the 50th Anniversary of the EIS

May 1, 2001 (revision of document presented at CDC 4/23/01)

Beyond AIDS, Inc. and the Beyond AIDS Foundation, in consultation with medical epidemiologists from allied organizations, present the following summary of ongoing problems in HIV Control, new or recent opportunities to address them, and recommendations to the CDC to take advantage of those opportunities.  The goal is to strengthen HIV prevention efforts to the point where those efforts can actually control the HIV epidemic. 

True control requires that the viral reproductive rate be reduced to less than 1, meaning that on average, less than one new infection will be produced during the lifetime of each HIV-infected person.  In our judgment, current strategies are not theoretically capable of accomplishing this, because by the time each person both learns s/he is infected and adopts behaviors that make further transmission unlikely, the virus on average has already been transmitted.  The stabilization of incidence rates in the U.S. may be due in part to a complex overlay of exponentially rising epidemic curves in new populations groups, masked by the downslope of the original urban gay male outbreak from exhaustion of the pool of susceptible persons and die-off of the infected.

Meanwhile, prevalence rates are tending to increase due to longer survival, as a result of treatment, and also at least theoretically due to the selection of less rapidly-lethal virus strains (the latter deserving more study). An optimal control strategy should therefore provide for both infected and exposed persons to be rapidly identified and to adopt behaviors that will eliminate further exposures, and for infected persons to become capable of maintaining such behaviors over a lifetime. The infrastructure and methodologies for such a strategy are not yet systematically in place.

The problem areas are divided into two categories, those in which political considerations have been predominant factors preventing the adoption of stronger and more effective public health strategies, and those in which substantial components of the problems have been related to gaps in internal coordination of the public health system.   Since HHS approval and Congressional authorization are needed for changes in organization, emphasis, and funding, both categories are in a sense political, and will require political will.

Overcoming Political Obstacles to Prevention

PROBLEMS: 

For 20 years, CDC has encountered resistance to some of its formal or informal prevention initiatives or proposals not only from activists in communities at risk, but from within federal administrations.  The tactical approach of including such activists on advisory groups at the federal, state, and local level has not succeeded in co-opting them to support public health strategies that have been used successfully against other communicable diseases, such as name-based reporting, partner notification, routine testing, case management, etc.  Indeed, CDC, state, and local public health departments have often been led, because of strident opposition to traditional public health approaches by members of the advisory groups, to compromise their public health principles.  The epidemic has diversified to affect more women and to disproportionately affect African Americans and other communities of color, but this has not been reflected in their representation on advisory bodies, nor have organizations committed to applying sound public health approaches been so represented. 

HIV has been treated differently from all other communicable diseases, and has been split into two parts (AIDS and non-AIDS) which are treated differently from each other, providing obstacles to a comprehensive approach to HIV disease.  Pre-test counseling and consent requirements can actually constitute barriers to testing and entry to care and case management, as pointed out for prenatal patients by the Institute of Medicine.

Political opposition rather than science has also limited initiatives that work with infected persons to assist them in notification of contacts and in avoiding transmission to others.  In fact, CDC-funded programs have recently been sponsoring activities that would appear to be counter-productive to HIV prevention, such as alleged classes in San Francisco teaching HIV positive persons how to flirt and to attract sexual partners.  Guidelines on Partner Counseling and Referral Services do not indicate a preference for public health involvement in notifying partners, and there is little funding for such notification for private sector cases.   Patient notification of partners appears to be equally acceptable in the guidelines, despite published studies indicating that as many as half of patients do not notify partners and many notify some but not others.  CDC-funded programs for HIV-infected persons have rarely included discussion of personal responsibility to avoid infecting others.

OPPORTUNITIES: 

The new administration in Washington may be more receptive to taking a fresh look at HIV programs, and to more aggressive CDC proposals for prevention.  Bipartisan foundations and organizations are now available and interested in representation on advisory bodies to support CDC efforts for a more effective public health response to HIV.  Women's and ethnic advocacy organizations may be interested in representation as well.

RECOMMENDATIONS:

1) Require that representation on federal, state, and local HIV/AIDS advisory groups "look like the HIV community" with increased representation of minority groups and women including HIV-infected persons from those communities, as a condition of funding, and make an effort to include organizations that support strengthened HIV public health strategies, such as Beyond AIDS, Children's AIDS Fund, organized medicine, and some local health jurisdictions such as Denver.

2) Place  real emphasis rather than token or pilot support for Dr. Rob Janssen's new strategy revealed at the 8th Conference on Retroviruses ("SAFE: Serostatus Approach to Fighting the HIV Epidemic") and on "Prevention for Positives."  For the first time, this places emphasis at controlling HIV infection at the source, as we do with other communicable diseases.  To date, most of the services listed in that strategy (diagnosing all infections, linkages to prevention services, assistance with adherence to treatment, and support for reduction of HIV risk reduction behavior) have been largely non-existent in most areas.

3) Support more explicitly in CDC recommendations and documents the preferences for name-based HIV reporting.  Require accountability as a condition for funding of HIV/AIDS surveillance systems.  Specifically, require that states using non-name methods for non-AIDS cases such as UIs, or that do not retain names at the local health officer level, be able to demonstrate not only effective data but also effective partner notification and referrals to medical, psychosocial services, and prevention services equal to states with name-based reporting.

4) Amend PCRS recommendations to emphasize direct public health outreach to infected persons for contact tracing, and public health assistance with partner notification. Where it is necessary to depend on patients to notify their own contacts, require follow-up to attempt to determine whether notification has been accomplished, and to gather statistics.

5) Fund the cross-training of Ryan White case managers to provide prevention services including assistance with notification of new partners acquired over time (not known to public health departments), and to support patients in adopting and sustaining HIV risk reduction behavior (as per the "SAFE" strategy). 

6) Fund prevention services including long-term counseling for behavior change and referrals to psychosocial services for high-risk persons testing HIV negative.

7) Change the current recommendation (including on pages 15-16 of the October 17, 2000 draft of Revised Guidelines for HIV Counseling, Testing, and Referral) that all states without anonymous testing reconsider their policy.  Instead, recommend that all state and local public health agencies periodically evaluate whether anonymous testing would result in more or less effective risk reduction and referral to appropriate prevention services for persons testing positive; and that all public testing services where anonymous testing is offered also offer confidential testing. Focus on the bottom line of reduction of transmission, not just on numbers of tests.

8) Continue to press HRSA for the release of Ryan White  prevention funds for states, such has those for support of newborn HIV testing, and notify states officially of the special conditions for funding, some of which will require acts of state legislatures.

9) More explicitly encourage states, through recommendation wording and funding incentives, to change laws on consent for HIV testing to permit routine testing, orally-informed and with right of refusal, not only for pregnant patients but for anyone. Reword the statement on page 21 of the October 20, 2000 draft of Revised USPHS Recommendations for HIV Screening of Pregnant Women, and include similar statements in the October 17, 2000 Revised Guidelines for HIV Counseling, Testing, and Referral.

10) Encourage states, through recommendation wording and funding incentives, to change laws to permit HIV testing of newborns without maternal consent, with appropriate confidentiality, if the mother has not been tested for HIV.

11) In recommendations for working with HIV-infected persons, e.g., the "SAFE" strategy, emphasize group support discussion and other methods directed at encouraging the patient to develop a sense of personal responsibility for avoiding the infection of additional persons, and motivation to seek any needed assistance toward this end. 

12) Back up CDC preferences with pressure and funding incentives to the maximum extent permitted by law, and seek legal authority where none currently exists, to make funding conditional on effectiveness of prevention programs.

13) Investigate alleged abuses of CDC HIV prevention funding and on funding for counter-productive activities that might actually encourage sexual activity with new partners by persons with HIV.

Improving Coordination of HIV Prevention Strategies and Recommendations

PROBLEMS: 

There are now many different CDC and other USPHS documents with recommendations, that have been issued over a period of years, on testing, counseling, referrals, surveillance, screening of pregnant women, diagnostic classification for adults and for children, post-exposure prophylaxis, treatment, etc.  Some of these overlap in content, and some are not entirely consistent due to policy shifts in the interim.  It is difficult for public health workers, physicians, and advocacy groups to keep track of where to find recommendations on a given subject, and what is the most recent pertinent reference on a given issue, even though many of the documents can be found on the World Wide Web. 

Moreover, within some given documents, linkages of concepts and strategies is not emphasized to produce a coherent whole.  For example, one of the advantages of name-based surveillance and one of the arguments for its adoption at the state level is that persons testing positive may be more easily contacted by public health representatives for partner notification and referrals to services.  However, CDC recommendations separate these issues.  Testing, counseling, and referrals are discussed in the October 2000 draft document, but the linkages among them are not clear; for example, the relationship between testing and counseling is not addressed, or whether all the counseling can be done after rather than before testing to avoid making pre-test counseling a barrier to testing.  Over the past two decades, numerous organizations have issued contradictory documents and tables on safer sexual practices, which may be confusing to the public. CDC has never adopted its own detailed lists or recommendations on the relative risks of different practices with and without condoms or other barrier techniques.  Fragmentation of CDC recommendations, and failure to make recommendations where a science-based consensus is possible and would be useful, results in the lack of an easily discernable comprehensive and coherent strategy for HIV control and prevention. 

The sum total of CDC recommendations and the relatively stable patterns of CDC funding do not give a clear picture of how the viral reproductive rate can theoretically be reduced to less than one, or how Dr. Gayle's goal of reducing new U.S. infections from 40,000 to 20,000 per year by 2005 might be achieved.  CDC recommendations also fail to take into account the extensive literature and experience indicating that behavior change can rarely be accomplished through a single counseling session, but requires a long-term program.

The combination of HIV, STDs and TB into one center at CDC was laudable, as are efforts to strengthen the public health response to hepatitis C.  But not only is hepatitis C itself a monster of a problem and shockingly underfunded, coinfection with HIV and hepatitis C is today also a huge problem.  Hepatitis C and HIV mutually speed up each other's progression and make treatment of both diseases more problematic, and hepatitis B and C are transmitted similarly to HIV. The current separation in different centers is a barrier to coordinated prevention programs.

Until recently, early referral to medical treatment appeared to be in the interests of both the infected individual and public health.  Reducing the viral load may make patients less infectious, if they do not simultaneously revert to less safe behavior.  Recent NIH treatment guideline changes, however, may delay onset of treatment for years, creating a discrepancy between benefit to the individual and to public health.  As Dr. Gayle has said, prevention is pitted against treatment.  This will require more emphasis on early referrals for psychosocial and prevention services and for medical care and follow-up other than for early HIV treatment, in order to get patients into a system that can help them to avoid transmission.

OPPORTUNITIES:

The World Wide Web provides opportunities for instantly updating summaries of policy and for instant linkages of wording to existing documents.  The new administration in Washington may permit a more rapid approval process for updating of recommendation so that more can be updated within a brief period for better consistency and coordination.  Organizations such as Beyond AIDS, Preventive Medicine academies, and various medical organizations are available to critique the coherence of strategies from the point of view of providers and consumers of services, who must be able to understand and utilize the recommendations.  Aggressive implementation of the SAFE strategy may help to counteract delay in entry of HIV-positive individuals into a care and case management system.

RECOMMENDATIONS:

1) Develop a summary document on the World Wide Web, outlining all parts of the current CDC strategy and recommendations, with instant linkages both from USPHS references and from pertinent wording in the document on various subjects, to the other pertinent documents.  In this document, smooth over apparent contradictions among documents developed at different times, and indicate current trends. Update continually and incrementally; even minor nuance changes can be significantly.

2) In the next revision of each set of recommendations, including the pending October 20, 2000 draft of Revised USPHS Recommendations for HIV Screening of Pregnant Women, and the October 17, 2000 Revised Guidelines for HIV Counseling, Testing, and Referral, include more cross-references to other CDC recommendations, enhancing the unity and coherence of CDC strategy.

3) Emphasize in documents and recommendations on counseling and the difficulty of behavior change and the need for long-term follow-up of patients to assist them in maintaining safe behavior and compliance with treatment.  Combine this with case management recommendations, and summaries of the techniques used in the most effective behavior change programs to date.

4) Develop science-based CDC recommendations on the relative risks of sexual practices to clarify confusion among contradictory "safer sex" recommendations and pamphlets by other organizations.

5) In CDC recommendations dealing with risk screening, including the October 17, 2000 Revised Guidelines for HIV Counseling, Testing, and Referral, add a triage scoring system that includes the client's past difficulties with sexual or drug-related behavior changes and relapse problems.  Clients with these difficulties should receive higher priority for referral to psychosocial services, drug treatment where indicated, and prevention case management.   Also describe referrals to ongoing medical care and follow-up rather than implying that medical referrals are always for treatment, since anti-retroviral treatment may be deferred for a number of years under the latest guidelines.

6) In the next revision of surveillance guidelines, emphasize the relationships of reporting to partner notification and referrals.

7) Develop an advisory group to the CDC that includes organizations and epidemiologists dedicated to sound public health policy toward HIV, specifically to develop strengthened, better coordinated prevention strategies capable of reducing the HIV viral reproductive rate to below 1.  A similar group should be developed to provide practical, coherent recommendations to the WHO and to developing nations, based on their own unique requirements and reduced resources.

8) Publish surveillance data and calculation methods used to generate official CDC estimates of HIV incidence and prevalence rates in the U.S. over the past decade.

9) Move the new division in the CID devoted to hepatitis to the Center for HIV/STD/TB, or increase efforts to coordinate screening, education and counseling, and other prevention services for these diseases and HIV.

Presented to the CDC leadership on behalf of the Beyond AIDS Foundation

Ronald P. Hattis, MD, MPH (EIS 1969)
Vice-President, Beyond AIDS, Inc.
Vice-Chair, Beyond AIDS Foundation
1233 Friar Lane, Redlands, CA 92373
(909) 425-7876
ronhattis@aol.com


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