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Thursday, August 30, 2012

BEHIND THE SCENES: VOLUNTEERS ARE KEY TO AIDS CONFERENCE SUCCESS


Hayes distributing conference bags and programs
Frank E. Hayes is not a youngster or college student. He has an important full-time job at the Washington State Health Department, as the Coordinator for Health Education and Risk Reduction for HIV and Hepatitis. In his spare time, he also serves as a member of the Advisory Council of Beyond AIDS.  But when he heard at the beginning of April 2012 that volunteers were being sought to work at the upcoming International AIDS Conference in July in the other Washington (DC), for no pay and no travel reimbursement, he rushed to sign up. So many other people did too, mostly from the U.S. but also from other countries, that volunteer registration was closed after only two weeks.



Hayes checking badges for security
1500 volunteers were initially sought, and about 1000 actually served throughout the conference. The received yellow T-shirts, but transportation and housing were at their own expense.

Volunteers filled many essential roles, including helping to plan the conference and to coordinate activities, assisting with registration, greeting visiting delegates and assuring security by verifying proper credentials. They also acted as guides, staffed various offices and activities, and assisted in a display area known as the Global Village. Only occasionally were they free to attend actual conference sessions. However, they bonded socially, and many new friendships developed.


Volunteers cheer for photo near end of conference
Judging from discussions with Hayes and other volunteers during the conference, morale and esprit de corps was excellent. Many gathered on the last day for a group photo, at which they were heard to whoop and cheer.

These volunteers were the unsung heroes who made the conference run smoothly. They were a key to its success, and indirectly, to the spirit of global unity that was evident during the conference.

For a more complete report on the XIX International AIDS Conference from the perspective of Beyond AIDS' President, see next posting.

SAD POSTSCRIPT: The following message was received from Justin Hahn, a colleague of Frank Hayes at the Washington State Health Department, on July 25, 2013, when we inquired about his welfare, since we had not heard from him in some months:

"I am so sorry to say that Frank Hayes passed away on February 18, 2013.  Frank was diagnosed with a malignant brain tumor shortly after returning home from the International AIDS Conference last year. Frank was enjoyed and loved by his friends and co-workers. His laugh could be heard across a large room. Some of us at the office spent considerable time with Frank in the hospital and later in the care facility where he made his transition. I personally got to know Frank so much better during this time and I feel so lucky for it. Frank was a loving and generous man."

REPORT ON XIX INTERNATIONAL AIDS CONFERENCE, WASHINGTON, D.C.: BEYOND AIDS PRESSES FOR EFFECTIVE CONTROL STRATEGY

The Beyond AIDS Foundation actively participated in the XIX International AIDS Conference, which was held in Washington, DC, July 23-27, 2012 with a theme of "Turning the Tide Together."  Ron Hattis, who is Secretary of the Foundation (as well as President of the Beyond AIDS membership organization), was the main official Beyond AIDS delegate. He met with a series of government HIV/AIDS officials and participated actively in sessions on "treatment as prevention," early treatment, linkage of testing to prevention, interrupting drug-related transmission, etc. as well as scientific sessions on antirival resistance and new drug development.  Hattis used these opportunities to promote and distribute the new Beyond AIDS position statement and recommendations on how to control the U.S. epidemic, which had just been approved by the Board and Scientific Committee (see next posting on this blog).

Sweeney and Hattis confer during conference
Vice-President Monica Sweeney, who also is Deputy Health Commissioner for HIV Prevention and Control at the New York City Health Department, attended associated national meetings both before and during the conference. The two Beyond AIDS leaders touched bases as they pursued separate tracks.

Advisory Council member Frank Hayes participated in a different role, as one of almost 1,000 volunteers helping the conference to run smoothly (see separate posting above).

This was the fist international AIDS conference to be held in the U.S. since the sixth one in 1990, which Hattis had also attended 22 years earlier. Since then, conferences had been held biennially all around the world, but the U.S. had been boycotted because of American visa requirements obstructing entry of HIV positive individuals. Those restrictions were ended by President Obama, which once again made the U.S. eligible to host the conference. Over 20,000 delegates reportedly attended, from all over the world, including many with HIV.

President Obama did not personally appear at the conference, which disappointed many participants. However, he provided a video message, hosted a reception at the White House honoring persons living with HIV, and his administration was represented by HHS Secretary Katherine Sibelius, Secretary of State Hillary Clinton,and others. Former President Bill Clinton also made an appearance, representing his foundation, which has done a great deal to make HIV/AIDS drugs available at more affordable cost to populations in developing countries.

MEETINGS AND TESTIMONY
  
Since several of the Beyond AIDS recommendations are directed at the Centers for Disease Control and Prevention (CDC), the National Institutes of Health (NIH), and Health and Human Services administration (HHS), Hattis arranged meetings with leaders of those agencies.   

Fauci and Hattis discuss NIH and Beyond AIDS recommendations
Dr. Anthony Fauci has headed the center at NIH in charge of AIDS since 1984, and his remarkable career has included research into how HIV destroys the immune system, and oversight over the development of effective drugs to fight the disease. Fauci agreed with Hattis on potential drawbacks such as potential drug resistance, that might occur with largescale use of pre-exposure prophylaxis (PrEP) to treat uninfected persons at risk of exposure. They also agreed that the greatest opportunity to reduce HIV transmission rested with earlier and more widespread treatment of persons who are actually infected. Hattis asked for greater publicity of new treatment recommendations endorsed and posted by NIH, which permit treatment of all HIV-infected persons regardless of CD4 counts; but Fauci did not think that getting the word out was an NIH responsibility.               
In fact, it turned out that the leaders of each agency thought that another agency should do this. Beyond AIDS will need to continue to work to encourage a joint effort for this publicity and physician education.

Fenton chats with Hattis at CDC display area
CDC officials, including Dr. Kevin Fenton, director of the center that includes HIV/AIDS, and Dr. Jonathan Mermin, who is in charge of CDC's HIV/AIDS prevention divisions, claimed that they agreed with and were already working on several of the Beyond AIDS recommendations. These include using case reports to trigger prevention outreach for new HIV positives, targeting screening and prevention toward groups which the the most recent cases have been detected, better monitoring of partner services nationwide, and screening for hepatitis C and other STDs along with HIV. Fenton and Mermin asked that Beyond AIDS acknowledge this progress. Accordingly, the Beyond AIDS recommendations were amended after the conference to add in several places that "we applaud and encourage the intent of CDC leaders as communicated to us, to proceed in this direction." However, Beyond AIDS has not been able to find any CDC recommendations to date that have yet implemented these approaches, and will look for actual proof of accomplishments by 2013.

PACHA members hear testimony, July 25, 2012
Hattis also testified before a special public "community engagement" session of the Presidential Advisory Council on HIV/AIDS (PACHA), calling for that council to support the Beyond AIDS recommendations, which were distributed to the members. Two current Beyond AIDS Foundation leaders, Sweeney and Dr. Frank Judson, are former members of the council. 

The PACHA hearing was also an opportunity for a brief introduction to Dr. Grant Colfax, the new Director of National AIDS Policy at the White House, who will be responsible for updates to the National AIDS Strategy.  Dr. Colfax's last employer had been the San Francisco Department of Public Health, which received an award from Beyond AIDS in 2008 for innovations during Dr. Colfax's tenure. Two previous directors of that office, Jeffrey Crowley and Dr. Joseph O'Neill, were also contacted during the conference.


Hattis meets with Valdiserri on HHS coordination for HIV/AIDS
Another valuable meeting was with Dr. Ron Valdiserri, a former CDC official who is now Deputy Assistant Secretary for Health and Infectious Diseases at HHS. This role includes overseeing HIV/AIDS policy at the HHS headquarters level. For those duties, he is the successor to Christopher Bates, with whom Beyond AIDS had met several times over the years. PACHA is staffed by Valdiserri's office. Many points of agreement on strategy for controlling the U.S. epidemic were reached, and the Beyond AIDS relationship with HHS at this level was renewed.

OPTIMISM AND CAUTION

Many of the speakers at the conference spoke optimistically of "a generation without HIV," based on progress in a number of countries (though not so far in the U.S.) in reducing HIV incidence; and also on the promise of "treatment as prevention." The concept that treatment could help control the epidemic had actually first been written up some 15 years earlier by Hattis as a faculty member at Loma Linda University, together with one of his medical residents, Dr. Holly Jason Kibble (see posted articles on the Beyond AIDS Web site of 1996 and 1997, and history of of concept in the Beyond AIDS position statement). Over just the last few years, increasing evidence has built up that adequate treatment indeed can reduce infectiousness to the point that it can be a powerful weapon in stopping the spread of the disease.

Condom Demonstration and Display at AIDS Conference
The Beyond AIDS statement notes, however, that for "treatment as prevention" to work, infected persons must be identified before they have passed on the virus. As soon as persons with new infections are discovered by screening, they should be referred for immediate treatment, interviewed for contacts/partners who likewise need testing (and treatment if already infected), and helped to discontinue transmission-prone behavior. Some of those additional elements in what could be a highly successful strategy were little heard at the conference, and the Beyond AIDS Foundation will continue to press for them.

POLITICAL CONTROVERSIES AND ISSUES

Every international AIDS conference has involved political protests and expression by activists, mostly from the gay communities in the U.S. and a few other countries. Beyond AIDS has often disagreed with some of the positions of these activists, while agreeing with others. In the early years, activists had demanded more rapid development of effective drugs for AIDS, which was laudable. However, they had also opposed HIV reporting, an area of strong disagreement. Beyond AIDS was in the forefront of a ten-year political struggle, ultimately successful, to achieve HIV reporting in all 50 states. 

At this year's conference, there seemed to be four main political protest issues that were frequently heard, and the first two of them (but not the last two) run counter to Beyond AIDS philosophy: 

1) So-called "criminalization of HIV." This related to complaints about cases in which some HIV positive persons have been prosecuted for intentional transmission or for exposure of others without either informing their partner or taking precautions. The argument was that this would deter HIV testing (just as activists once claimed that reporting would deter testing, a prophecy which did not come true). The slogan was "Take a test, risk arrest," which ironically discourages that very testing. Sean Strub, the founder of Poz Magazine, advisor to the Positive Justice Project, and maker of a film entitled "HIV is Not a Crime," was the leading advocate of this position.   
Beyond AIDS takes exception to this stance. Beyond AIDS has long advocated that HIV positive individuals, "after appropriate notification and counseling, be held accountable for preventing transmission to others." By analogy, having a driver's license and a car does not risk arrest, but driving drunk or negligently or intentionally running someone over does, and driving is not deterred by that requirement. Similarly, gun ownership is not deterred by the fact that using a gun to murder someone is a crime. On the other hand, anecdotes suggested that some prosecutions may have been unfair. Laws should take into account an infected person's efforts to protect partners, and criminal prosecution should be reserved for the most egregious cases that endanger lives.

2) Fear that an emphasis on treatment as a public health measure would result in mandated treatment, with forced exposure to toxic drugs. Ironically, some of the same activists who demonstrated years ago for research and development of effective drugs are now afraid of being corralled into taking them. Strub even called for written consent before anyone could receive treatment for HIV/AIDS.  

Fortunately, this issue seemed to be a significant concern of only a small minority at the conference. Beyond AIDS strongly supports encouraging patients to start on treatment as soon as possible, both for their own benefit and to prevent transmission. On the other hand, there was general agreement at the conference that treatment ultimately remains voluntary and an issue to be discussed by patients and their health care providers; and that "human rights" concerns should be considered in developing policies on mass early treatment as a prevention strategy.

3) U.S. visa restrictions that still prohibit persons who have been sex workers or used injection drugs within the last ten years. There was general consensus that this prevented attendance by some potential international delegates who might have provided insight about dealing with those populations, and a group of sex workers from India held their own conference in protest. Beyond AIDS has no policy opposing  easing or allowing exceptions to this restriction, which seems excessive.

4) Laws in many countries that make homosexual behavior illegal, forcing gays underground and making it difficult for public health programs to reach them and to enlist their support for testing and treatment. Beyond AIDS opposes discrimination or stigmatization for either sexual orientation or HIV infection.

Weinstein, flanked by West and Smiley, at AHF Rally
AIDS Quilts, with Rally Stage in Background
There was another political push that appeared to be a consensus issue typical of AIDS conferences, for more money for treatment and prevention. This year, there was particular concern that the U.S. and other countries across the world might decrease their HIV/AIDS budgets because of global recession. 

The AIDS Healthcare Foundation (AHF) staged a rally at the Washington Monument on July 22, under the leadership of its President Michael Weinstein, the day before the conference began. The theme was "Keep the Promise," implying that the federal government should maintain and increase the support of HIV treatment just when it needed to be expanded and could be the key to reversing the epidemic. 

A large stage was erected, large swaths of AIDS quilts were on display, and an impressive array of speakers including Andrew Young, Al Sharpton, Tavis Smiley, and Cornel West; and entertainers Margaret Cho and Wyclef Jean. Unfortunately, the rally drew only hundreds rather than the hoped-for thousands of participants. However, the crowd was enthusiastic, and carried that spirit forward to the conference that followed.