RED RIBBONS NOT ENOUGH: BEYOND AIDS STATEMENT ON WORLD AIDS DAY, 12/1/11

PRESS RELEASE: December 1, 2011 (World AIDS Day)

CONTACT:                                                                                                                               

Beyond AIDS, Inc., Inland California Region
1554 Barton Road #401, Redlands, CA 92373   
www.beyondaids.org

WHEN RED RIBBONS ARE NOT ENOUGH:

ONE ORGANIZATION, BEYOND AIDS, INSISTS THAT POLITICS HAS OBSTRUCTED AN ADEQUATE PUBLIC HEALTH RESPONSE TO HIV

Redlands and San Bernardino, CA:

World AIDS Day has been observed every December 1st since 1988, but the leaders of Beyond AIDS say there is too little to celebrate. Thirty years into the AIDS epidemic, the number of new infections is not decreasing.overall, and in some populations it has been rising. Over 2.5 million new cases occur each year, including over 40,000 in the U.S.  The number of persons living with the virus exceeds 30  million worldwide, with an estimated 1.2 million in the U.S. Worldwide, well over one and a half million deaths still occurring each year. Over 16 million children have been left as AIDS orphans. (Statistics from Centers for Disease Control and Prevention and World Health Organization)

If we wish to reverse these trends and see a steady reduction in cases and a decrease in the severity of the epidemic, the organization maintains, we will have to do some things differently.

The problem, says Dr. Ronald Hattis, President of Beyond AIDS and a physician in Redlands, California, is that the public health response HIV/AIDS has been partially obstructed by politics. For example, he points out, "until 2006, HIV infections that had not progressed to the late stage of AIDS were not even reportable to public health in California and some other states in the same manner as other communicable diseases. And even now, although the information about new cases is reported by laboratories and physicians, it is still not routinely utilized by health departments to find and test persons who may have been exposed and to stop further transmission, as is done with tuberculosis and syphilis. Until 2008, HIV testing in California required special written consent and could not be easily combined with panels of other lab tests, and that is still the case in some other states. And even now, California law includes special informing requirements that do not apply to any other medical lab testing."
  

 

Dr. Ron Hattis

"Every year, on World AIDS Day, red ribbons are displayed, but they do not prevent the spread of HIV," continues Hattis. "It is time that we treat HIV/AIDS as the infectious disease that it is, and that we change our policies and laws so that we can apply the most effective techniques that work with other infections.  It spreads in ways very similar to a number of other diseases, by blood and sexual fluids. It is not the only disease that takes years until it causes symptoms, or that is incurable (for example, hepatitis C shares these qualities). However, what is truly unique about HIV/AIDS is how we have treated it politically, and how we have tied the hands of our physicians and public health workers to reduce their ability to control it."  

So how could HIV/AIDS be more effectively controlled? Hattis says that the disease epidemic could be stopped in its tracks, if everyone with HIV were identified by testing, then referred for immediate treatment, and meanwhile the persons they had exposed were identified, testing, and also treated if infected.

Published studies have shown that the infectiousness of people on effective treatment decreases by 96%. Treatment combined with consistent condom use and avoidance of needle sharing could reduce the number of new cases to a negligible number. But this would require changes in both public policy and in treatment guidelines. Testing would need to be more widespread and routine, as would notification of exposed partners. Currently, most patients are unaware for a long time that they have the virus, and then have to wait for years after infection, until the number of their CD4 white blood cells drops in half, before treatment is started. In the meantime, they may have unknowingly infected other people.

Earlier treatment would protect public health, but studies are showing that it would also be good for patients’ health. Already, guidelines are beginning to change, and more patients are being treated at CD4 counts of under 500 per milliliter of blood, rather than under 350 as in the past. However, Hattis notes, it can still take years for those counts to drop from initial normal values of 800-1000, and that can translate to both a weaker immune system that never fully recovers, and the potential for more people exposed to each infected person to contract the infection. Beyond AIDS urges further research that could lead to a standard of universal testing and immediate treatment.

Dr. Cary Savitch

"HIV remains a public health emergency, but it has unfortunately been managed as a public health exception," agrees Dr. Cary Savitch, an infectious disease physician from Ventura, California.who wrote a book on this issue in 1997 ("The Nutcracker is Already Dancing"). Savitch  first convened the group that founded Beyond AIDS in 1998, and served as its first president. Beyond AIDS was founded to combat "AIDS exceptionalism." Savitch explains. The organization has been in the leadership of nationwide efforts to improve the public health response to HIV/AIDS ever since, he continues, including the long, ultimately successful struggle to achieve name-based HIV reporting, and the more recent fight to eliminate the written consent requirement. The ultimate grand mission of Beyond AIDS, according to its Web site, is "to reverse the course of the global HIV epidemic through sound public health policy."  Beyond AIDS also operates a tax-deductible foundation dedicated to education and research on HIV/AIDS prevention, including an internship program. 

Web references:

http://en.wikipedia.org/wiki/List_of_countries_by_HIV/AIDS_adult_prevalence_rate

http://www.avert.org/worlstatinfo.htm

http://articles.latimes.com/2011/may/13/health/la-he-aids-prevention-20110513
http://www.cdc.gov/hiv/topics/surveillance/basic.htm#incidence 

SEX AND SAFETY: BEYOND AIDS WEIGHS IN ON CONDOMS FOR PORN FILM ACTORS

Since HIV/AIDS is transmitted by sex, it was inevitable that Beyond AIDS would be drawn into rather hot issues involving sex, including an industry in which sex is performed for profit. Since 2010, Beyond AIDS has been actively involved in the controversy about whether porn film actors should be required to use condoms.

Beyond AIDS has had policy in place to support legislation to require condom use in the industry, but in spite of a California legislative hearing in 2004, no such legislation has been introduced. Instead, regulations are now being considered pursuant to current federal law on worker safety, and Beyond AIDS has seized that opportunity to become involved.

Most of the film production has been centered in Los Angeles County, where it is a multi-billion dollar a year industry. As a result, that area and the state of California have become the crucibles of what has become both a political and economic fight of major proportions. Though many conservatives may prefer that the entire industry be banned, its legality, at least in California, is not in question, having been confirmed by the California Supreme Court in 1987, with denial of reconsideration by Justice Sandra Day O'Connor of the U.S. Supreme Court.

The issue of preventing HIV and other infections in the porn film industry probably first came to largescale public attention when an HIV outbreak occurred among porn workers in the 1980s, ultimately causing a number of deaths. That outbreak led to the creation of the Adult Industry Medical (AIM) Healthcare Foundation, which set up a program of testing porn actors in Southern California every 30 days for HIV and several other STDs, with exclusion of infected workers. Nevertheless, positive tests among actors in 1998, 2004, 2009, and 2010 showed that risk had not been eliminated (the L.A. Times claimed in June 2009 that 22 workers had been infected since 2004). The AIM testing program operated until the clinic was shut down in late 2010 for licensing deficiencies. Compounding that setback was an unauthorized disclosure of actor testing results by Porn Wikileaks in 2010, leading to a class action lawsuit against AIM. The foundation was dissolved entirely in May 2011; Porn Wikileaks itself was closed down soon afterward, in July 2011.

The issue continued to simmer until the AIDS Healthcare Foundation (AHF) brought it to the fore in 2009, first by filing a lawsuit against the Los Angeles County Department of Public Health, to take vigorous enforcement action against the industry. AHF accused the department of paying insufficient attention to increased numbers of both HIV and other STD cases among adult-film performers, but the department denied that it had authority to take enforcement action. By June 2011, an appeals court reaffirmed a lower court ruling that declined to overrule the discretion of L.A. county health officer Jonathan Fielding. (An appeal to the California Supreme Court is planned.)

At the end of 2009, AHF tried another approach, proposing that the California Occupational Safety Administration (Cal/OSHA) expand its regulations for the health care industry that require barriers (e.g., gloves) to protect workers against bloodborne pathogens, so as to require condoms as protective barriers for worker safety in the adult film industry. The theory is that the porn industry is similar to the healthcare industry in that workers are unavoidably exposed to certain pathogens (disease-causing agents) unless barriers and other precautions are used. Beyond AIDS has participated since 2010 in the advisory committee set up by Cal/OSHA to advise that agency regarding the development of possible regulations. The Los Angeles Department of Public Health is also supporting a condom regulation, contending that the issue must be addressed at the state level (thus making the county a "strange bedfellow" with the organization that has been suing it).

A consultation group to the industry called the Free Speech Coalition, and AIM (until its dissolution), have countered that the testing program has been relatively effective, keeping sexually transmitted diseases to rates comparable to those of sexually active people with demographics similar to the actors. Irate producers and some vocal actors have also spoken up at meetings and hearings to oppose mandatory condoms, citing economic concerns. They fear that films and videos using condoms will attract fewer customers than those without, causing closure of businesses, loss of jobs, and driving off the business to unregulated countries or underground filmmakers who do not do testing and have fewer protections for workers. Interestingly, though, condom use has become the standard for the production of gay films (which continue to sell well), but not for those depicting heterosexual activity (for which the few films that do show condoms tend to sell poorly).
 
Not all porn actors oppose mandatory condoms, however. Notable is their advocacy by former actor Derrick Burts, who has emphasized that he contracted HIV despite the testing program. A number of former actresses have testified before Cal/OSHA of abusive conditions, especially for women in the industry, and of contracting multiple infections. One such actress has founded the Pink Cross Foundation to reach out to workers who wish to leave the industry.

 

Derrick Burts, former porn actor infected with HIV in October 2010, who supports a condom requirement

Denise Bleak, an experienced infection control nurse, has been the lead representative of Beyond AIDS in the advisory meetings, assisted by Ron Hattis, MD, the organization's president. A series of meetings has been attended in Oakland and Los Angeles, and the organization issued a position paper in October 2010. The approach of Beyond AIDS has been to attempt to assure a reasoned, science-based approach in an often emotional debate. Dr. Ron Hattis has emphasized the value for prevention of both screening through tests for HIV infection (which has kept the rates of HIV and other bloodborne infections from blood transfusions extremely low) and utilizing condoms (which is a mainstay of HIV and STD prevention worldwide). He cites protocols used by the legal brothels of Nevada, which have almost totally eliminated HIV and other STD transmission. Those protocols require both condom use and frequent testing of the prostitutes.

One of the reasons that Beyond AIDS would like to see condoms used in porn film production, over and above worker safety, is that millions of sexually active people view these films every year, and the unsafe sex that is protrayed produces a bad role model for prevention. Unlike the actors, the customers are not being tested for HIV and other STDs every month. Beyond AIDS supports both the reestablishment of a screening program for the actors and the addition of a requirement for condom use. Protocols for how to manage actors infected with a variety of STDs, including specific restrictions and precautions, have also been suggested.

 Denise Bleak, Beyond AIDS lead representative on Cal/OSHA advisory committee 

Denise Bleak has openly challenged the actors and producers with provocative appeals at the Cal/OSHA-sponsored meeting. "I ask again, what is the performers' definition of the perfect storm, as far as transmission of infectious diseases, in this venue? It is safer to use what our (infection control) colleagues envision for you, as we watch you (perform)" she has stated. She suggests that condom use and other safety precautions can be utilized in a sexually enticing way. "Think. Imagine, also. Clear condom? Vivid red condoms? Even fake (semen)? In colors? Can there be refinement in the performance for more teasing and less 'pounding and grinding' as one seasoned individual put it?" She noted that condoms could be omitted if both partners were confirmed to have the same diseases, however "the public will likely not enjoy HIV on HIV sex to view." In a reference to the statements in film credits that no animals were harmed in the creation of a movie, she asked that porn films be produced in a manner that could permit a similar statement for humans. "The parallel is for film industry to begin protecting all warm blooded creatures on film, not just the four legged kind. So get it together folks," she said.

Ms. Bleak reflects on the work so far as she continues to appeal to the industry: "Despite my trying to avoid double entendre, some of the work we did at the hearings was unavoidably fun and fulfilling, with the higher purpose in mind, to protect you all and love you a little bit." She has enjoyed being "an equal partner at the table" as a representative of Beyond AIDS.

As of the date of this blog post, Cal/OSHA has not yet issued final regulations, but the draft regulations developed so far focus heavily on condoms and ignore the entire issue of screening tests. The agency explains that its mandate is limited to barrier protection, as originally authorized by federal OSHA for health care workers and delegated within the state of California to Cal/OSHA. Beyond AIDS will continue to follow the issue.

LEGISLATIVE VICTORY IN CALIFORNIA: HELP WITH HIV PARTNER NOTIFICATION

A bill to help physicians obtain public health assistance with HIV contact tracing and partner notification has passed the California legislature. Governor Brown signed  Senate Bill 422 into law on August 1, 2011. The bill was sponsored by Beyond AIDS, and introduced by Senator Roderick Wright.  It will take effect in January 2012.

Roderick Wright (center), holding Beyond AIDS award for previous HIV legislation, with Presdient Ron Hattis (left) and Past-President Cary Savitch (right)

The new law will allow a physician, with the patient's consent, to inform local public health staff that the patient may have exposed other persons to HIV. The public health staff can then interview the patient, elicit information on partners and details on how they can be reached, and can help assure that these exposed persons are notified, counseled, and referred for testing and follow-up. The local public health agency will be able to retain information about the partners until those services are complete. Both the physician and the local public health staff will be protected from liability.

Up to now, it has been illegal for a California physician to identify a patient, who may have exposed others to HIV, to local public health agency staff. As a result, physicians have not been able to request that the patient be interviewed to identify possible exposed partners by trained public health staff. A physician who has wished partners to be notified of their exposure has had to perform the interview him or herself. The physician could name the identified partners to the local health officer (it was unclear whether other public health staff were covered under that term), but could not pass on information about who the infected patient was and how that person could be reached.

Partner services include coaxing infected patients to reveal their sexual and needle-sharing partners, eliciting information on how to reach those persons, and performing the actual notification, counseling, and referrals. Most physicians do not have the time or the special training and experience to perform partner services, and any such services are not compensated by insurance or any other funding source. As a result, partner services, including the actual notification and referral of the exposed partners, are greatly under-utilized as a prevention tool.  Local public health agencies do have trained staff assigned to this function, but due to the limitations of the law, in many counties few partners are notified. Most of the patients whose partners have been notified by public health staff have been those who are being treated in clinics operated of the local public health agency itself.

When public health staff notify a partner, the name of the infected source is not revealed. Because of this,  patients may often be willing to reveal to public health staff the identity of partners and how to reach them, even though they would be unwilling to tell the partners themselves. Some patients also would be embarrassed to reveal all their partners to their physicians, but would do so to neutral public health workers pledged to confidentiality.

While some patients notify their own partners and refer them for testing, studies have shown that this does not happen most of the time. There may be well-founded fears of rejection by the partner, or even fears of physical abuse. Frequently, partners have been anonymous or have moved on and been lost to follow-up, so that a patient cannot reach them even if he or she wants to; but with enough information on where the partners "hang out" and their descriptions, public health staff may be able to locate and notify them.

If performed effectively, partner services can help stop HIV transmission. If an exposed partner tests negative for HIV and is lucky enough not to have already been infected, precautions can be taken to avoid infection. If the partner tests positive, he or she can be promptly directed to medical care and follow-up, and assisted in not infecting anyone further. Thus, the chain of infections can be interrupted.

SB 422 is expected to be a step toward better communication between physicians and local public health staff about HIV exposures, and an advance in efforts to stop HIV transmission. This is part of the mission of Beyond AIDS.

The bill as passed was somewhat of a compromise. Several additional provisions proposed by Beyond AIDS were opposed by the American Civil Liberties Union and could have resulted in the bill's defeat, so they were not included. Among these were expanding the bill to include nurse practitioners and physician assistants as well as physicians, and to permit the bill to also deal with exposures to blood or other infectious substances of infected persons other than needle sharing, as in trauma situations or surgical accidents. Beyond AIDS also wished to eliminate the need for written consent by the patient for referrals to public health, since all cases should have already been reported to public health and thus should not be new disclosures of the patient's infected status. Beyond AIDS will evaluate whether there is sufficient political support for an expanded bill in 2012.

Beyond AIDS President Ron Hattis has expressed the organization's appreciation and recognition to Stan DiOrio, Senator Wright's tireless Legislative Director, without whom the new law could never have become a reality. This is the fourth bill related to HIV prevention that Roderick Wright has introduced for Beyond AIDS (earlier as an Assembly Member, and now as a Senator), and the second one signed into law. The California Academy of Preventive Medicine, Infectious Disease Association of California, AIDS Healthcare Foundation, and California Medical Association provided supporting letters and testimony.

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 2010 AND 2011

In its biennial election, Beyond AIDS has selected the following officers to serve during 2010 and 201l:

President: Ronald P. Hattis, MD, MPH (California)
Vice-President: Nettie Mayersohn, Assemblywoman (New York)
Treasurer: Yvonne Pover, RDH (Virginia)
Immediate Past-President: Cary Savitch, MD (California)
Directors: Franklyn Judson, MD (Colorado)
                Elizabeth Kidder, MPH (Washington, DC)
                Monica Sweeney, MD, MPH (New York) 
                Dennis Thompson, MD (California)

Yvonne Pover and Elizabeth Kidder, at meeting in Virginia

The Advisory Council will consist of:
                Denise Bleak, RN
                Chloe Cummings, RN, PHN
                Condessa Curley, MD
                Brian Johnston, MD                                
                Peter Kerndt, MD, MPH
                Evette Oszyk, BA
                Pamela Savitch, RN                        

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: Cary Savitch, MD
Vice-President: Nettie Mayersohn, Assemblywoman
Secretary: Ronald P. Hattis, MD, MPH
Treasurer: Yvonne Pover, RDH
Directors: Franklyn Judson, MD
                Elizabeth Kidder, MPH
                Evette Olszyk, BA
                Monica Sweeney, MD, MPH
                Dennis 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.