We have created a new series called “Voices From the Front Line” for our blog and Update our newsletter. With these profiles we’re letting you hear from AIDS Action’s people who do the work every day that prevents new infections and who connect people living with HIV to care, support and services In this installment we check in with Emerson Miller AAC’s Peer Support Coordinator.

Emerson joined the staff of AIDS Action about 18 months ago. In his role of Peer Service Coordinator, he works alongside a dedicated team to support the long term health and well being of our clients. We spoke briefly about his work:

When someone is newly diagnosed and comes to AAC for support, do you find that they have a good deal of information about HIV/AIDS already or are they starting from square one?

You know it really varies; each person has a unique set of circumstances that brings them to seek our services – so it’s difficult to answer without acknowledging that. I will say though, I am seeing a higher number of people who are presenting sick. In other words, people seeking support for their new knowledge of their HIV status but at the same time, dealing with an immediate health issue as well. Facing a difficult health situation often makes the job of counseling more challenging, as the client usually has a more immediate need to get healthy. At the same time we also work with them to get them involved with the Peer Support programs.

How prevalent is misinformation amongst our clients about HIV/AIDS?

Again, especially with our Newly Diagnosed Group, I see some misinformation. As some members had gone to the doctor for a health issue that initially they wouldn’t attribute to HIV, their positive diagnosis is often unexpected. And being unexpected, it comes with a lot of questions, oftentimes pretty basic ones.

How and where do you steer people who approach AIDS Action for support?

We have eight different support groups that our team runs here at AAC as well as being able to offer individual counseling around mental health and substance abuse issues. Heidi Bright who is our Manager of Peer and Clinical Programming is amazing, while Pat Regan does a great job with the coordination of the individual counseling requests. Additionally we have 5 volunteer group facilitators and have recently added two new limited part time paid positions for peer advocates who are HIV positive. Our department also acts as a resource to provide information about the variety of other support options that exist in the Greater Boston and Metro West areas. Once someone approaches us for help, it’s the job of our team to work with that client to get them support; either getting them involved with one of our groups, or with a group run by another organization that might be easier for them to access.

Are their studies that show the importance of peer support groups?

A great number of studies have been done that looked at the positive impact groups can have for people facing health challenges. When one conducted by Suffolk University was presented at the Planning Council a while ago, it showed that the overall health of group participants was 200% better than those that did not utilize peer support. That’s an amazing statistic.

In a world where budget and staff weren’t an issue, how much would you like to see the Peer Services programs expanded?

Obviously, without funding issues, I’d like to see ALL of the programs at AAC expanded and our services and prevention efforts available to everyone that would seek them out. In the short term though, I’d really like to be able to add more meetings of all of our support groups, especially the Newly Diagnosed Group – presently we offer a series of three weekly meetings for that group every other month. If the need is there, I’d like to see that group be able to meet every month.

How about volunteers, are there opportunities within the Peer Services area for someone who has some free time and wants to help out?

We do get a lot of requests from graduate and undergraduate students who are studying mental health and counseling and want to do work with our groups, helping out while gaining experience and exposure to working with clients. But the vast majorities are only looking for a short term commitment and that’s just not beneficial to a group that only meets weekly or in some cases, only once or twice a month. It’s important that it be a consistent ongoing experience for the members of the group. We do have a great need for someone that has administrative skills to help us out though, just 20 hours a week would help out the entire Peer Support team tremendously with the basic computer and office tasks we need to keep on top of all the time.

Two other programs of the Peer Services Department are the Community Lunches meeting as well as the Whole Health Forum Dinner meeting. Tell me about those monthly get-togethers.

The Community Lunches group is really an amazing program. It’s very informal and totally run by the participants, who are HIV positive. We provide a great lunch and the forum is wide open for discussion of any and all topics. At the conclusion of each month’s lunch, we poll those in attendance and have the group set a topic that they’d like to discuss for the next lunch. In March, the group asked for a focus on spirituality at the lunch in April, so we worked to set that up.

The other program, a more structured meeting, is the Whole Health Forum which is a dinner program that we call “Beyond the Numbers”. This forum evolved from one of our weekly long term survivors’ groups. Here the group gathers for a presentation by a noted medical professional or expert on a topic and then there is a roundtable dinner and discussion focused on specific and general health issues. The programs are fascinating and members of this group are not exclusively those living with HIV/AIDS. It’s an opportunity for all of us to learn more and I really encourage everyone to attend sometime.

What power do our clients find in our support groups?

It seems simple, but the idea of “I am not alone” seems to be one of the most important things that many take away from a support group meeting. We recently had a member of our Men’s Support Group who was hospitalized for AIDS related cancer. This group of 10-15 guys has grown very close in the course of their time together. As this client was being released from the hospital, he really needed to feel that he could go home after such an emotionally and physically demanding time. But with no real family to turn to, instead of going home to an empty apartment, he came directly from the hospital to the group meeting that evening. The group is his family, and he was not alone because of them.

Check out our last profile on AAC’s longest-term staff member, Chris Wittke.

Some past posts include:

·   AIDS Walk Boston Goes Green – articles featuring our new email option and environmentally friendly tote bag incentive.

·   Learn More About: The HIV Library – one of the many programs your fundraising dollars support

·   AIDS Walk Boston Goes to Paris – Dr. Jim Haber participated in AIDS Walk Boston 2007 from Paris! Find out more and see his inspiring pictures.

·   Visit the Resource Center – Information about our extensive resource center including downloads, FAQs and the Extra Mile Club

The blog is updated almost daily so keep checking back for new and exciting information about AIDS Walk Boston!

As CDC quietly releases figures revealing an 80% boost in HIV in Black gay youth, advocates are calling for a national AIDS strategy, adequate funding, and political leadership. Launched with much fanfare in March 2007, the Centers for Disease Control & Prevention’s (CDC) A Heightened National Response to the HIV/AIDS Crisis Among African-Americans called for “expanding the reach of prevention services; increasing opportunities for diagnosing and treating HIV; developing new, effective prevention interventions, and; mobilizing broader community action.”

One year later, the Heightened National Response (HNR) effort has been marked by shifting leadership, lack of communication to local leaders and community organizations, and no new funding for any initiatives that are not restricted to HIV testing. It is now widely believed that Madeline Sutton, MD, MPH, CDC Acting Director of Partnerships in the Department of HIV/AIDS Prevention, the latest in a series of individuals responsible for HNR, will once again restructure the initiative in an attempt to address its significant shortfalls.

Read more at LifeLube. 

To estimate the number of prevented infections, the researchers relied on information from the Centers for Disease Control and Prevention (CDC). According to CDC, the proportion of HIV-infected persons in the U.S. who were aware of their HIV status increased from about 70.5% in 2001 to 74.2% in 2004.

This increased awareness of HIV status is important, because HIV-infected persons who are aware of their status are more likely to take steps to prevent transmission than HIV-infected persons who are unaware of their status. In addition, when HIV-infected persons know their status, they can seek the medical care needed to maintain or improve their health and quality of life.

Another important number that the researchers used for their calculation was CDC’s estimate of the number of new HIV infections per year. That estimate is 40,000 infections per year – or a total of 120,000 infections between 2002 and 2004. (It’s worth noting here that CDC is expected to issue a revised – and many expect higher – estimate of new infections in the near future.)

Using a mathematical model, the researchers then calculated the number of new infections that were prevented by increased awareness of HIV status. They came up with a best estimate of about 6,000 prevented infections – although the actual number might be as low as 4,000 or as high as 8,700. They also calculated that these prevented infections would save more than $5 billion by avoiding HIV-related medical costs and allowing people to continue working.

These are impressive benefits from a relatively small (3.7%) increase in awareness of HIV status. Unfortunately, the reason for this increased awareness is not known. The researchers speculated, however, that “Overall increases in testing rates and increased use of testing services by at-risk subgroups may have contributed to the reported increase.” They also noted that “other prevention initiatives likely helped as well” in preventing a rise in new HIV infections, despite the fact that the total number of people living with HIV increased by about 90,000 between 2002 and 2004.

At the end of their paper, the researchers make several insightful comments. They write: “One can argue that the incidence of HIV in the United States remains unacceptably high and that this indicates a failure of HIV prevention.” They then acknowledge that the first assertion – that infection rates remain unacceptably high – may be true. But they note that the second assertion – that HIV prevention has failed – goes against the facts. According to their calculations, if there had been no change in awareness of HIV status, the number of new infections per year would have risen from 40,000 in 2001 to more than 43,000 in 2004.

They conclude: “Although additional prevention activities are needed to reduce HIV incidence to lower than current levels, the success of past prevention efforts should not be overlooked.”

The campaign’s message focuses on the loss that happens when meth addiction takes over, a story that is all too familiar to many of us who have seen this drug bring down friends and loved ones.  If there’s one thing I have learned in my years in the gay nightlife scene, not a single person who is addicted to this drug ever thought they’d get to that point.  You may be smart, you may think you’ve got a stronger ability to resist its frequent use, but this drug has nothing to do with either of those.  It’s insidious – and even its casual use can be all too dangerous.

This is far from the end for microbicides, or HIV prevention research in general. We’re just making history. Carraguard was the first new microbicide candidate to enter clinical trials (in 1996) and the first to complete a Phase 3 trial. Other Phase 3 trials were stopped early for various reasons. These large-scale trials rely on participants to use the product consistently over a long period of time. Over 6,000 women participated in the Carraguard trial for up to two years, proving that such trials can be done with scientific rigor and ethical integrity.

More will be learned from this trial beyond Carraguard’s (lack of) efficacy as a gel that would allow women say in protecting themselves against HIV. What happened in these three South African sites where over 6,000 women volunteered their bodies and their sex lives for the greater good was a glimpse into their bedroom behaviors and the role research plays in the health of a community. Findings that may be considered ancillary to the research’s aim are perhaps the groundbreakers for advocates working with communities at risk, including those in South Africa: condom use by trial participants DOUBLED during the trial and STI rates decreased.

Add this to the reality that the presence of research infrastructure in these communities means increased access to health services for the trial volunteers, their partners and those who get screened but are not involved in the trial (over 9,000 people were screened in connection to this trial).

Opponents of research based on ethical concerns should have no issue with the Carraguard trial. The efforts by the researchers, by the advocates who relentless push for truly informed consent and access to care (think “No Woman Left Behind”) related to these trials, and by the women from the communities where the trial happened who fight stigma, sexual violence, and a lack of power in their primary relationships, all demonstrate how research can be the catalyst for a bigger intervention just awaiting the resources needed to make it happen.

Microbicide advocates have not run out of things to do. Three more candidate products are now in late clinical trials that will produce results soon. Developing new tools to prevent HIV– particularly among women – is an urgent priority. According to UNAIDS, approximately 3,500 women are becoming infected with HIV each day. Microbicide advocates have been actively, visibly and vocally involved in the process of microbicide research and development from the very beginning. Our involvement will continue until the goal in achieved – and safe, effective, accessible and affordable microbicides are in the hands of all who need them.

Annual recognitions such as this, and this one in particular, remind us to mark our location in our battle to end AIDS in America, demand bold and calculated action and seize special opportunities that get us closer to stopping new infections and ending HIV/AIDS in the African-American community and throughout the U.S.

Where are we in America? AIDS is still a leading cause of death for African-Americans and the leading cause of death for African-American women aged 24-34. Half of new HIV infections each year are among young people, and 56 percent of them are African-American. The President’s FY2009 budget is shameful in its recommended funding reductions. We still have no National AIDS Strategy although we require countries that receive U.S. funds for HIV/AIDS to have national plans. Infection rates of HIV are ramping up among African-American people, especially African-American gay and bisexual men and in some cities including New York and D.C., young African-American gay men.

What can we do in America? In this election year, we call for the next President to create a National AIDS Strategy with measurable outcomes, a specific timeline and adequate funding to address HIV/AIDS as a domestic priority. And we call for head-on action to address stigma, discrimination and denial that inhibit enacting the most effective interventions to deal directly with HIV prevention, education, testing, treatment, care and research, especially to curb the devastating effect of this disease on people in Black communities.

How can we seize special opportunities in America? Both of the Democratic and one of the three leading Republican Presidential candidates have committed to creating a National AIDS Strategy. Visit www.NationalAIDSstrategy.org to learn what you can do to help. Also, on National Black HIV/AIDS Awareness Day, more than 800 communities across the country are hosting informative and inspiring events to honor this day. Find one near you and support it. For example, in Los Angeles tonight, Black AIDS Institute hosts an event recognizing honorees as part of “Heroes in the Struggle,” a photographic tribute to African-Americans who have made outstanding contributions in the fight against HIV/AIDS. Established on World AIDS Day, Dec. 1, 2001, the traveling exhibit has raised awareness, challenged people and communities to be involved and recommit to ending HIV/AIDS in the U.S., and it has inspired needed dialogue about HIV testing and treatment. Visit www.BlackAIDSday.org to find an event near you.

Before going into more detail, I think it’s important to note that some other expert groups have disagreed with the Swiss group’s conclusions. The U.S. Centers for Disease Control and Prevention (CDC) issued a brief statement, saying that the CDC “underscores its recommendation that people living with HIV who are sexually active use condoms consistently and correctly with all sex partners.” Likewise, UNAIDS and the World Health Organization stated that, to prevent transmission of HIV, they “strongly recommend a comprehensive package of HIV prevention approaches, including correct and consistent use of condoms.”

So, what exactly did the Swiss experts say? And why is it controversial?

In brief: Based on their review of several medical studies, the Swiss group concluded that an HIV-infected person who is on HIV treatment and has a consistently undetectable viral load “is not sexually infectious, that is, cannot transmit HIV through sexual contact.”

However, according to their statement, the following conditions must also be met:

The Swiss group also acknowledges that “medical and biologic data available today do not permit proof that HIV infection during effective antiretroviral therapy is impossible,” but they believe that the risk is “negligibly small.”

Critics of the Swiss statement have emphasized that research on HIV transmission and viral load has focused on heterosexual couples and vaginal intercourse – and does not necessarily apply to anal intercourse.

A number of people have also pointed out that, even if the Swiss experts are right, their conclusions about unprotected sex would apply to only a small number of HIV-infected persons: people who have excellent adherence to their HIV regimen, a consistently undetectable viral load, and no other STIs.

Practically speaking, the “no STIs” restriction could probably be met only within a monogamous relationship in which both partners were tested for STIs before stopping condom use. STI testing would be essential, because many people with STIs have no symptoms.

The bottom line for me:
Several studies have shown that reducing a person’s HIV viral load tends to reduce their risk of transmitting the virus. This is very heartening, but it does not mean that people with undetectable viral loads have no risk of transmitting the virus.

Given the limitations of current data, I personally believe it would be unwise to endorse a “no-condoms-needed-if-your-viral-load-is-undetectable” approach.

However, recent studies on viral load and HIV transmission give reason to hope that, if effective HIV treatment were widely available worldwide and properly used, the number of new HIV infections could be substantially reduced.

Universal access to treatment could be an important element in a comprehensive HIV prevention strategy that would include widespread access to HIV testing, use of the full range of existing prevention techniques and technologies, and the continued research and development of new prevention technologies, including microbicides and vaccines.

If you’d like to read more about this topic, check out the following links:
“Swiss experts say individuals with undetectable viral load and no STI cannot transmit HIV during sex.” - This article from the aidsmap.com website has a detailed summary of the Swiss experts’ statement.
“CDC underscores current recommendation for preventing HIV transmission.” - This is the brief CDC statement made in response to the Swiss report.
“Statement by WHO and UNAIDS: Antiretroviral therapy and sexual transmission of HIV.” - This is the WHO and UNAIDS response to the Swiss report.
“Experts say positive people on effective HIV meds aren’t sexually infectious.” - This is POZ’s article about the Swiss statement. The many comments posted after the article express a wide range of opinions about this news.
“Reactions to the Swiss news about ARV’s.” – This blog item contains a number of reactions to the Swiss statement. The Lifelube blog also has another posting worth looking at: “Swiss deconstruction - Undetectable = safe?”

In 2006, La Rue opted to terminate a lucrative contract with Vivid Video, a major production company for heterosexual erotic movies. After releasing three years’ worth of La Rue-directed straight videos with condom-clad performers, Vivid decided to make condoms optional for its performers. Finding this arrangement incompatible with the La Rue philosophy, Chi Chi left Vivid and has since focused on gay condom-mandatory productions.

Presumably, a rise in the number of bareback titles available to gay video consumers motivated La Rue to create the public service announcement, featured prominently on a new website. What’s particularly notable about the PSA is how many different issues it touches upon, from testing to the blurry lines between fantasy and reality (especially when the fantasies star real live people) to the place of consumers in the “food chain” of bareback video production.

There’s a case to be made that sex without condoms is often a very pleasurable experience, and La Rue doesn’t take on that aspect of the discussion. But what’s remarkable at this stage of the game is that somebody is talking about the issue at all, when folklore is telling us that people are “over” talking about safe sex.

I’m writing this as a person who has been HIV+ for more years that I choose to count, but knowing it is close to 15 yrs. At some point during that time I went from being “positive” to having “advanced HIV” (which for me is really just an easier way to say that I have reached the stage of full blown AIDS). I don’t tell you this about me looking for pity but rather to give you a sense of my reality and how I can really share and appreciate how someone could go on national television and tell the world about their circumstances around being HIV+.

What I am referring to here is the amazing courage that Jack Mackenroth had when exposing his life of “living with” HIV on the show Project Runway. I remember all too well: I was sitting in my living room glued to the TV. This is a regular thing each week for my partner and I as we are avid fans of the show. In a recent episode Jack made an important yet difficult decision to let the world know that he was leaving the show due to an infection in his face and nose. I know the world must have sat in amazement wondering how this guy was going to make it when he seemed to already have a compromised immune system and now he was to battle this!

I on the other hand sat on my floor with tears in my eyes, but not for the reasons that most may have. I was choked up because I was so proud that someone like myself, who looked so healthy and stood so strong, was truly stronger than life, by being able to share all of this with the world. I thought how amazing it was that someone was given such a gift to break the stigma surrounding HIV & AIDS! Jack became a hero that day in my book and one that has shown strength and courage that so many of us can learn from.

It’s truly refreshing to see how times have changed and how perspectives are being transformed about those of us living with HIV & AIDS. Like Jack, I myself live a relatively healthy life and with new medications my viral load has become undetected and my t-cells are the highest they have been in over 6 years! Jack’s courage to make his situation known is what has enabled me to share my story via blogging. I only hope that the media continues to cover the lives of the many of us that are living with HIV and enlightens those that think that life is over when you find out you’re positive. Again a message to Jack, a great big thank you from someone who really shares in what you represent on Project Runway!

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EJ Mandigo has been a long term supporter and volunteer for the AIDS Action Committee and other AIDS organizations and has contributed many hours and services to the AIDS Walk, Mass Red Ribbon Ride and to the Harbor to the Bay Bike Ride.