BEYOND AIDS MEETING PLEDGES POLITICAL, SCIENTIFIC ACTION FOR 2011

On December 12, 2010, Beyond AIDS held an Annual Meeting, with its hub in Ventura, California and conference call participants from across the country. Later the same day, in conjunction with this gathering, the Boards of Directors of Beyond AIDS and its subsidiary Beyond AIDS Foundation, and the Executive Committee of an allied group, Physicians for HIV Control, also met in Ventura.  Each meeting charted courses of action for 2011 to achieve further advance in HIV control and prevention.

Drs. Dennis Thompson, Peter Kerndt, and Cary Savitch confer in Ventura, 12/12/10

DECLARATIONS OF PRINCIPLES

Beyond AIDS updated its declarations of principles, which had originally been developed in 1998-99. These were organized under three basic statements:

• Decades into the HIV/AIDS epidemic, victory is not yet in sight and therefore better approaches are needed for better results.

• All of humanity is threatened by HIV/AIDS and should be involved in the struggle to control it. 

• Public Health, healthcare providers, and people with HIV share responsibility for control and reversal of the epidemic.

The organization's ultimate mission remains the reversal of the course of the HIV epidemic, through sound public health policy. For the complete listing of principles, along with the organizations's goals, and objectives, see Beyond AIDS Mission and Principles.

LEGISLATIVE VICTORIES AND SHORTFALLS, CALIFORNIA AND NEW YORK

The Beyond AIDS membership celebrated the passage of bills in California and New York that the organization had strongly supported. At the same time, disappointment was expressed about the limitations imposed by watered-down final language in both bills.

California's Assembly Bill 2541, initiated by the AIDS Healthcare Foundation, will make it easier for public health departments to discuss treatment and prevention with patients and their physicians. The legality of such communication had been in question because of strict confidentiality requirements and fines for unauthorized disclosure of information. This bill is an advance toward overcoming barriers to communication. However, because of objections by civil liberties groups including the ACLU, some intended wording was deleted, making it appear that the bill might only apply to cases in which a patient has both HIV and tuberculosis or a second sexually transmitted infection. 

Beyond AIDS believes in direct communication and interventions where indicated, by public health workers and healthcare providers. The organization wants to assure the availability, for all persons with HIV, of partner notification services, assistance in changing behavior so as to prevent further transmission, and referrals to medical care and other services. At the meeting, the organization voted to seek further legislation if needed to assure that free communication can apply to all HIV cases.

New York's bill A11487 was intended to allow HIV testing without written consent. It was a partial victory in a multi-year effort by Beyond AIDS' Vice-President Nettie Mayersohn, a member of the state Assembly, to promote routine HIV testing. Unfortunately, this bill was similarly watered down, so that in the end it did not enable opt-out routine testing, and only eliminated the requirement for written consent in the case of rapid testing, where the result can be available within an hour of specimen collection. Clinics or phlebotomy stations drawing a blood specimen to be sent out for later testing, and laboratories not offering rapid testing, must still use a written consent form. 

One positive provision in the bill, not present in any other state's legislation to our knowledge, is that health care providers must offer an HIV test at least once, to every patient ages 13-64 who might be at risk of acquiring the disease. The bill provides for an evaluation process of its effectiveness. At the meeting, Beyond AIDS voted to await this evaluation, and then to press for any needed legislation to enable opt-out testing without written consent in all health care settings.

PUBLIC POLICY INITIATIVES: SAFER SEX IN PORN FILMS, HELP WITH HIV TESTING

The Beyond AIDS Foundation has been taking an active role on a committee advising the California Occupational Safety and Health Administration (Cal/OSHA) on regulations to protect worker safety in the adult film industry. Denise Bleak and Ron Hattis have alternated in representing the Foundation at meetings in Los Angeles and Oakland. Beyond AIDS is advocating for mandatory condom use, expanded screening for sexually transmitted and bloodborne infections, and coverage of treatment for such infections under Workers Compensation. The industry has been resisting such requirements. The membership meeting, as well as the Foundation Board, endorsed continued participation and efforts on this project.

The Foundation has also submitted a draft checklist to facilitate compliance with California's HIV testing law, which does permit opt-out testing without written consent, but imposes some detailed informing and documentation requirements that many physicians are not aware of. The California Department of Public Health is reviewing the form and may post a version on its Web site. Follow-up on this effort was endorsed by the membership and by the Foundation Board.

AWARDS ANNOUNCED

The "Nettie" Awards for 2010 went to two of Beyond AIDS' own, Denise Bleak and Yvonne Pover. The selection of award honorees is made each year by the Beyond AIDS Foundation Board. 

Bleak was honored "for tireless advocacy of improved public policies for the control of HIV infections." Over the past several years, she has contributed her own resources to travel to Washington, DC for meetings with government officials, and more recently to state advisory meetings on the adult film industry issue in Los Angeles and Oakland (see "Public Policy Initiatives," above). As an authority on infection control, she adds credibility to many of our positions, and is an effective spokesperson for Beyond AIDS. She is also a former Secretary of the organization, and services on the Advisory Council. 

Pover was recognized "for continued devotion of graphics, communications, and fiscal services to the cause of HIV prevention." A dental hygienist by training, as well as an accomplished graphics artist and actress, she is a founding member of Beyond AIDS. Pover developed the organization's logos and other graphics, produced the Lifeline newsletter 1999-2003, and has served for many years as Treasurer.

Denise Bleak (L) and Yvonne Pover (R) with Beyond AIDS President Ron Hattis, Alexandria, VA

For descriptions of past awards 2001-2009, see Beyond AIDS Awards.

SCIENTIFIC ISSUES

The Beyond AIDS Foundation Board reaffirmed the following as topics of interest. The Beyond AIDS Scientific Committee serves the Foundation and will consider these issues as indicated. 

• The role and safety of immediate onset of treatment (as soon as infection is identified) as a component in strategy for HIV transmission control
  

• The role of pre-exposure prophylaxis for prevention of HIV infectionThe development of lab test panels for multiple bloodborne and sexually transmitted diseases 

• The development of panels of laboratory tests for multiple bloodborne and sexually transmitted infections 

PHYSICIANS FOR HIV CONTROL

The Executive Committee of Physicians for HIV Control (PHC), on the afternoon of December 12, 2010, voted to work together with Beyond AIDS on a number of issues. A motion was passed to support "clean-up" legislation in 2011 in California to simplify testing requirements and to assure the legality of communication among public health staff, physicians, and patients about HIV cases, to facilitate prevention, control, epidemiological investigations, referrals to care, and assurance of adequate treatment and adherence.

Another motion was passed to support regulation or legislation for the adult film industry, to require condoms and other worker safety precautions.

The groups also voted to follow the issues of test panels for multiple bloodborne and sexually transmitted infections, and early treatment and pre-exposure prophylaxis for HIV, in cooperation with the Beyond AIDS Scientific Committee.

WORKING IN THREE STATES FOR ROUTINE HIV TESTING

In September 2006, the Centers for Disease Control and Prevention (CDC) recommended routine opt-out HIV testing in health care settings without written consent (see http://www.cdc.gov/mmwr/pdf/rr/rr5514.pdf ).  After all this time, the laws of several states still conflict with these recommendations or make them difficult to apply.  A summary current and pending state-by-state legislation on testing can be found at http://www.nccc.ucsf.edu/consultation_library/state_hiv_testing_laws/)  Beyond AIDS has been working to achieve the CDC standards for simpler HIV testing in New York, Massachusetts, and California.

NEW YORK
Beyond AIDS backed a successful New York State bill (A. 11487, Gottfried), that will eliminate the requirement in that state for written consent, but only for rapid testing where results are available within an hour of specimen collection (see article at http://www.queenscampaigner.com/2010/07/mayersohn-bill-expands-hiv-testing-access-for-new-yorkers/).  That will facilitate the testing process at special HIV testing sites and at laboratories that offer the rapid test, but will not help physicians' offices or clinics that draw blood and send it to outside labs. In the circumstances where written consent is not required, specific oral consent is needed, as opposed to "opt-out" routine testing as recommended by the Centers for Disease Control and Prevention (CDC).  A limited amount of pre-test informing of the patient must be provided.

The bill was passed by both houses and signed by Governor Paterson in July 2010, toward the end of the legislative session.  The new law also mandates the offering of HIV testing in health care settings.  Passage of this bill is the first success in a four-year effort spearheaded by bill co-sponsor Nettie Mayersohn, a state Assembly Member who is also Vice-President of Beyond AIDS. An evaluation process on the success of the bill in increasing testing is part of the bill. Beyond AIDS will be watching for the results, and will be prepared to ask for a follow-up bill to correct the deficiencies we expect will be revealed in the evaluation.

Assembly Members Nettie Mayersohn (left) and Barbara Clark (right), with Ron Hattis and Monica Sweeney in New York

MASSACHUSETTS
Beyond AIDS also worked with former national AIDS policy director Scott Evertz and others, in an attempt to keep a similar bill for HIV testing without the need for written consent, SB 2416, alive in the Massachusetts State Senate. Unfortunately, the bill failed to pass by the end of the legislative session on July 31, 2010. It will be necessary to start over in the new legislative session.

CALIFORNIA

Obtaining a blood specimen for HIV testing

In California, a bill backed by Beyond AIDS (AB 682, Berg), that permits opt-out testing without prior counseling or written consent, became law in 2008. However, this law includes complex informing and documentation requirements, that have limited its utilization and consequently its ability to increase testing.

Beyond AIDS has been invited by the state's Office of AIDS (a part of the state Department of Public Health) to provide some assistance in making it easier for physicians and other healthcare providers to follow the law's requirements. The organization's Beyond AIDS Foundation has proposed a simple checklist to assist providers in following the requirements and in documenting compliance, and is asking that this be posted on the Web site of the Department of Public Health.

A resolution that will be pending before the California Medical Association (CMA) House of Delegates in October 2010, calls for increased availability of patient information sheets that can fulfill the informing requirements of the law. The resolution, which was authored by Beyond AIDS President Ronald Hattis, MD and will be introduced by the California Academy of Preventive Medicine, also calls for CMA to work with the Department of Public Health to assist physicians (e.g., by means of checklists) to comply with the legal requirements of California's testing law.

BACKGROUND
For most of the first 20 years after the HIV antibody test became available in 1985, the official philosophy of most AIDS organizations and public health authorities was that testing should be preceded by counseling to explain the nature of HIV and of the test. Unique written consent requirements were written into laws or regulations in a number of states, due to concerns by activists that people might be pressured into testing, with the potential of discrimination against persons testing positive if the information leaked out.  But by the turn of the century, it was gradually becoming apparent that special consent and pre-test counseling were barriers to more routine testing.

The September CDC recommendations noted the vast scope of HIV testing nationwide. By 2002, at least 38% of all adults in the United States were estimated to have been tested for HIV, and 16–22 million persons aged 18–64 years were being tested annually for HIV.

Nevertheless, at the end of 2003, an estimated 250-300,000 Americans who were HIV positive were unaware of being infected. This amounted to about a quarter of the approximately 1.0–1.2 million persons estimated to be living with HIV in the United States. People who know they have HIV are more likely to avoid high-risk behavior that could pass on the virus, and can receive medical care for the disease to avoid deterioration of the immune system and life-threatening opportunistic infections.

CDC began looking for ways to encourage the people with undiagnosed infection to be tested. In 2003, CDC introduced an initiative to make HIV testing a routine part of medical care on the same voluntary basis as other diagnostic and screening tests. There was particular emphasis on making testing of pregnant women a universal practice, since the infection of newborns can be prevented by treating the mother and the baby.  Rapid testing was recommended during delivery if the woman had not been tested prenatally.

Self-collecting an oral specimen for rapid testing

CDC by 2003 acknowledged that pre-test counseling might not be appropriate or feasible in all settings, and that some providers perceived requirements for such counseling and for written
informed consent as a barrier to routine counseling. The initiative advocated "streamlined approaches" to counseling and testing, which had substantially increased acceptance of routine prenatal testing. Finally, in the 2006 guidelines, CDC spelled out these approaches more clearly, including elimination of requirements for written consent; making HIV testing an "opt-out" rather than "opt-in" process (i.e., patients should be told of the intent to test and may refuse, rather than requiring them to actively request testing); and doing the counseling post-test, in the course of explaining results.

CURRENT STATE REQUIREMENTS NATIONWIDE
As of 2010, according to the compendium (http://www.nccc.ucsf.edu/consultation_library/state_hiv_testing_laws), Massachusetts, Michigan, Nebraska, and Pennsylvania still required written consent for HIV testing; and as noted above, written consent will still be required in New York under its new law, except when a rapid testing method is employed. Pre-test counseling or specific pre-test informing were required by California (in latest law described above), Georgia, Illinois, Maryland, Michigan, Missouri, Montana, New York (in the latest law described above), Pennsylvania, Rhode Island, and Wisconsin.  Many other states required specific informed consent for HIV testing that may be done orally, but but not on an "opt-out" basis. In addition, many states required post-test counseling, which at least should not serve as a hurdle before testing can be performed, unless it discourages some providers from ordering the test. Beyond AIDS will be looking for opportunities to simplify testing requirements wherever these impede routine testing.

Safe handling of a blood specimen for HIV testing

BEYOND AIDS LEADERSHIP FOR 2012 AND 2013

In its biennial election on November 19, 2011, Beyond AIDS has selected the following officers to serve during 2012 and 2013:

President: Ronald P. Hattis, MD, MPH (California)
Vice-President: Monica M. Sweeney, MD, MPH (New York)
Secretary: Deanna C. Stover, PhD, FNP (California)
Treasurer: Yvonne W. Pover, RDH (Virginia)
Immediate Past-President: Cary Savitch, MD (California)
Directors: Franklyn N. Judson, MD (Colorado)
                Elizabeth Kidder, MPH (Washington, DC)
                Nettie Mayersohn, Retired Assembly Member (New York)               
                Dennis P. Thompson, MD (California)

Yvonne Pover and Elizabeth Kidder, at meeting in Virginia

The Advisory Council will consist of:
Denise Bleak, MSN, PHN
I. Jean Davis, PA, DC
Frank E. Hayes, Health Educator   
Peter Kerndt, MD, MPH
Evette Oszyk, BA
Gary A. Richwald, MD
                                       

The Public Policy Committee will be chaired by Dr. Hattis.
    
The subsidiary Beyond AIDS Foundation, a 501(c)3 charitable corporation, will be governed by the following Board (appointed by the Board of Beyond AIDS):

President:  Deanna C. Stover, PhD, FNP
Vice-President: Cary Savitch, MD
Secretary: Ronald P. Hattis, MD, MPH
Treasurer: Yvonne W. Pover, RDH
Directors: Franklyn N. Judson, MD
                Elizabeth Kidder, MPH
                Nettie Mayersohn, Retired Assembly Member
                Monica M. Sweeney, MD, MPH
                Dennis P. Thompson, MD

The Foundation's Scientific Committee will be co-chaired by Drs. Franklyn Judson and Monica Sweeney.

Cary Savitch, Monica Sweeney, and Pamela Savitch in New York

MEDICARE FINALLY COVERS HIV SCREENING (WITH NUDGE FROM BEYOND AIDS)

On December 8, 2009, the Centers for Medicare and Medicaid Services (CMS) announced that Medicare would be expanding coverage for preventive services to include HIV screening. Behind this there is a story.

When Medicare was established in 1965, it was purely a program to pay for treatment, not prevention. It took a long time before preventive services began being added, a little at a time, and each one literally required an act of Congress.  For example, mammography coverage began in 1988, Pap testing in 1989. But as of 2009, 28 years into the HIV/AIDS epidemic, HIV testing was still only approved as a diagnostic measure after symptoms had already developed or following an exposure.

In 2008, Congress finally passed a bill that enabled CMS to issue rules covering additional preventive services, without going back to Congress, provided that the services were recommended by the U.S. Preventive Services Task Force. One such preventive service recommended by the Task Force was HIV screening. In spring, 2009, CMS staff were working on plans to post on the Web in September a proposal to make HIV screening the first new preventive service to be covered under this act, and were soliciting public comment. Beyond AIDS was initially unaware of this plan.

Hattis on temporary USPHS duty on a NOAA research vessel, passing an iceberg over the mid-Atlantic ridge, June 2009

However, in August 2009, Beyond AIDS President Ron Hattis, who had recently become eligible for Medicare, happened to need an HIV test as part of a physical exam for renewing his reserve status in the U.S. Public Health Service.

Hattis was shocked to get a bill for $77.00 from the laboratory, and called CMS to find out why Medicare did not cover HIV screening.  He learned that Medicare had never covered HIV screening, but that this was a timely issue being considered due to the 2008 legislation.  Hattis quickly engaged Beyond AIDS to provide testimony during the brief comment period, and to solicit the support of additional organizations.

Beyond AIDS initially feared that the Medicare proposal would leave off persons 65 and older, who are the vast majority of Medicare beneficiaries, and would not provide for more than one test a year under any circumstances. That was because the Task Force recommendation on HIV screening had been silent on the issues of age and repeat testing; and CDC's testing recommendations of September 2006 had recommended testing only for ages 13-64 and "at least" once a year for high risk individuals. When the proposal was posted in September, it fortunately did not include an age restriction, but did have a limitation of one test per year. Beyond AIDS posted testimony during the brief public comment period, and succeeded in soliciting similar testimony from the California Medical Association and the California Academy of Preventive Medicine, urging adoption of the proposal. All three organizations urged coverage of up to three tests per year, noting a number of indications for testing more than once in a year (such as pregnant women, persons with recent or ongoing exposure, and those whose Western Blot confirmatory tests are indeterminate).

Testimony was overwhelmingly positive for expanding Medicare to cover HIV testing, but Beyond AIDS and its allies were almost alone in suggesting flexibility in the one test a year limitation. In the final rule issued December 8 after consideration of all the testimony, HIV screening for all beneficiaries was covered, and additional tests for pregnant women were authorized, a partial victory for Beyond AIDS.

Hopefully, CMS will proceed with similar proposals for additional prevention services recommended by the Task Force. The Obama administration has since announced, on July 14, 2010, its intent to require other types of health insurance operating under the new health care reform plan to cover all preventive services recommended by the Task Force, at no cost to patients.

BEYOND AIDS MEETINGS WITH WASHINGTON OFFICIALS

On July 20, 2009, one day after a productive Annual Meeting of Beyond AIDS in Alexandria, Virginia hosted by Yvonne Pover (Treasurer), representatives of the organization met with top government officials in charge of HIV/AIDS policy.  A Beyond AIDS delegation consisting of N.Y. Assemblywoman Nettie Mayersohn (Vice-President), Michael Simanowitz, and Harry Dunsker from New York, and Ron Hattis (President) and Denise Bleak (Secretary) from California, provided input to two key Obama Administration leaders for the development of a National HIV/AIDS Strategy.  A document entitled "Making a Difference in the Control of HIV Transmission: Policy Recommendations for the Administration and Congress," was presented to both administration and congressional offices. It emphasized early identification of HIV infections through routine testing; linkage of  HIV reporting to prevention services; adequate inclusion of HIV screening, prevention, and treatment in healthcare reform legislation; special programs for HIV prevention for African American and other minority populations; and an equitable distribution formula for Ryan White CARE Act funding among the states and municipal area.

From left to right: Dunsker, Mayersohn, Bates, Bleak, Hattis at Humphrey Building, Washington, DC

The delegation first renewed contact with Christopher Bates, HIV/AIDS Policy Director for Health and Human Services, who was continued in that role by Obama and had previously met several times with Beyond AIDS officials during the Bush Administration.  Mr. Bates indicated that over the years his views had converged toward those of Beyond AIDS on a number of key issues. such as reporting and partner services. He reviewed some initiatives being taken by the Administration and accepted the list of recommendations to consider in the future. The visit was cordial.

Left to right: Mayersohn, Crowley, Bleak, Dunsker, and Simonawitz, at White House

Later that day, they met at the White House Executive Office Building with Jeffrey Crowley, Director of National AIDS Policy. Mr. Crowley had been assigned primary responsibility for drafting the President's National HIV/AIDS Strategy. The delegation emphasized that control of HIV at the source, i.e., the infected person, should be a key element in national strategy, and suggested that some funding for entitlements for AIDS patients might be better directed toward new prevention services working with HIV positives. Mr. Crowley defended the entitlements and did not agree with all of the positions suggested by Beyond AIDS, but listened courteously.

Later in the afternoon, Congress members from New York and California were visited by delegation members. These visits were part of the ongoing efforts of Beyond AIDS to influence the direction of HIV/AIDS prevention policy at the national level.