More “Voices from the Front Line” - Emerson Miller

Blog Category: HIV Health, volunteerism, counseling — Blogged by: Keith on April 14, 2008 at 11:34 am

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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.

(Read on …)

If my viral load is undetectable, do I have to use condoms?

Blog Category: HIV prevention, CDC, HIV Health — Blogged by: eric on February 6, 2008 at 11:58 am

In my work in AIDS Action’s Health Library, I’m often asked this question.
Last week, a group of Swiss HIV experts issued a statement basically saying: “No, condom use isn’t necessary – provided that certain other conditions are met.” [Emphasis mine]

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 person must adhere to their HIV treatment, and the effectiveness of that treatment must be regularly evaluated by their doctor.
• Their viral load must be undetectable (<40 copies) for at least 6 months.
• The person must have no other sexually transmitted infections (STIs).

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.

(Read on …)

Thinking Positive+

Blog Category: HIV Health, media — Blogged by: admin on February 1, 2008 at 11:25 am

Thinking Positive
By EJ Mandigo

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!


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.

Bad Reporting of MRSA Study in Gay Men

Blog Category: HIV Health, media — Blogged by: eric on January 18, 2008 at 12:01 pm

I’m blogging to vent about what I consider shoddy reporting on the occurrence of MRSA infections among gay men. MRSA is short for “methicillin-resistant Staphyloccus aureus.” It is a type of bacteria that is resistant to the antibiotic methicillin, which is commonly used to treat Staphyloccus (staph) infections. Some strains of MRSA are multi-drug-resistant (MDR), meaning that they are also resistant to other antibiotics.

Clusters of MRSA cases among gay men aren’t new. They’ve been the subject of research reports and news stories for several years. The most recent stories were sparked by a study in the Annals of Internal Medicine. In a nutshell, the study found high rates of a particular strain of MRSA called USA300 among gay men in Boston and San Francisco. The USA300 strain includes an MDR type that is resistant to many antibiotics.

This is very troubling news that deserves media attention. MRSA is a major cause of serious illness not just in gay men, but in the general population. During 2005, MRSA accounted for more than 94,000 life-threatening infections and nearly 19,000 deaths in the U.S.

But from reading some of the recent headlines, you might have thought that the end of the world was at hand – and that gay men were the bringers of doom.

Of the press coverage I’ve seen, my vote for the worst headline goes to the British tabloid Metro, which proclaimed: “Strain of superbug may be new HIV.” I detest the word “superbug,” whether it is applied to HIV, MRSA, or any other germ. What makes a germ a superbug? Drug resistance? Ease or speed of transmission? Serious health consequences? Or simply the fact that it is new or difficult to treat? The word has no consistent or practical meaning. Its main effect is to incite fear and sell newspapers. And, by the way, there’s no evidence whatsoever that the USA300 strain is the “new HIV”: It’s not a virus, it doesn’t specifically attack the immune system, etc.

The British Telegraph’s headline was also outrageously overblown: “’Flesh-eating’ MRSA strain threatens Britain.” Interestingly, the Telegraph article noted that a grand total of two cases of the MDR USA300 strain have been recorded in England. Leading the headline with the words “flesh-eating” is certainly an attention-grabber. This lurid term is all too often used to refer to a severe skin and tissue infection called necrotizing fasciitis, which can destroy soft tissue.

Like many other types of bacteria – including both nonresistant and drug-resistant staph – the USA300 MRSA strain can, in severe cases, cause necrotizing fasciitis if it is not recognized and treated properly. But there is nothing inherently “flesh-eating” about USA300 MRSA. The New York Times also earns a dishonorable mention for its alarmist description of the MRSA strain as “flesh-eating” in the lead sentence of its story.

The Philadelphia Inquirer’s headline was also far from stellar: “Possible MRSA link to gay sex seen.” Granted, it’s less alarming. But what do they mean by “gay sex”? Anal intercourse? Fellatio? Last I heard, straight and gay folks alike engage in these and a broad spectrum of sexual activities. Of course, there’s nothing like a little “gay sex” in a headline to stoke people’s imagination and get fundamentalists all riled up.

Both the Inquirer and Times articles also failed to mention that the USA300 strain has been reported in athletes, military recruits, and heterosexual couples. Simply mentioning this fact might have helped reduce the tendency for people to blame gay men or “gay sex” for this health concern.

Oh, and if you read the research study, you’ll find that “anal sex” (no specific type mentioned) is just one of the possible explanations given for the high rates of USA300 MRSA seen among gay men in Boston and San Francisco. Other possibilities include “skin-abrading sexual practices” (rough sex? body shaving?) and “increased frequency of intimate skin-to-skin contact.”

But I suppose the Inquirer’s headline could have been worse: How about this one?: “Possible MRSA link to intimate touching.” That headline might have led to generalized panic rather than gay panic.

So what’s the bottom line about MRSA in general, and multi-drug-resistant staph among gay men in particular?

• The recent reports of multi-drug-resistant MRSA in gay men deserve our attention. But they should not be a cause for panic. Nor should they be used as an excuse to stigmatize gay men or demonize “gay sex.”

• MRSA infections are a serious health concern. If you have signs of a skin infection, such as pimples, boils, or rashes, see your doctor promptly. They can diagnose the condition and provide appropriate treatment. If a particular treatment doesn’t appear to be working as it should, let your doctor know.

• Washing with soap and water is the best way to keep from getting or spreading staph infections, including MRSA.

According to a fact sheet from the Massachusetts Department of Public Health, other ways to prevent infection, include:
• Avoiding contact with other people’s wounds or bandages.
• Keeping scrapes and cuts clean and covered with bandages until they have healed.
• Avoiding the sharing of personal items, such as towels and washcloths, which can transfer staph from one person to another.
• Keeping your skin healthy. Healthy skin helps keep any staph on the surface of the skin from causing an infection beneath the skin.

Here are a few other links with additional background on MRSA:

MRSA – an on-line fact sheet from The Fenway Institute with links to other resources

For other critiques of media coverage on the recent MRSA study, you can check out the following blog items:

Shock horror, superbug fears greatly exaggerated

Gay Sex Panic and Drug Resistant Staph

If you’d like more information about MRSA, please contact AIDS Action’s HIV Health Library. We have compiled a set of reliable articles and fact sheets about MRSA in general, as well as the USA300 strain in gay men.

More Evidence that “Housing Is Health Care”

Blog Category: HIV Health, homeless — Blogged by: eric on November 30, 2007 at 1:28 pm

At AIDS Action, I let people know about HIV treatment advances and new approaches to prevent the spread of the virus. As exciting as these developments can be, it’s also essential to recognize the critical importance of support services for persons living with HIV.

There is extensive evidence that a person’s housing status – whether stably housed or homeless – has a huge impact on their health. The latest addition to this growing body of research is a special supplement to this month’s AIDS and Behavior journal. The supplement contains 18 peer-reviewed articles focusing on the relationship between housing status and a range of HIV-related health outcomes.

Several of these studies found that having stable housing reduces the likelihood that persons will engage in behaviors – such as sharing needles, having unprotected sex, or exchanging sex for drugs – that place them at high risk for becoming infected with HIV or transmitting the virus to others.

A group of Canadian researchers reviewed nearly 30 studies evaluating the effects of housing on health-related outcomes. These studies showed that, in addition to reducing risk behavior, stable housing helps HIV+ persons:

  • Enter medical care and remain in care
  • Access social services, including mental health and substance use programs
  • Take their medications more consistently (better adherence)

Researchers in Chicago and San Francisco have found that programs providing stable housing for chronically homeless persons significantly reduce the number of emergency room visits and hospitalizations, as well as the length of time people spend in hospitals or nursing homes.

Taken together, these studies support the contention that housing itself independently reduces the risk of acquiring or transmitting HIV infection and improves the health of persons living with HIV.

“The findings reported here suggest that the condition of homelessness, and not simply traits of homeless individuals, influences risk behaviors and health care utilization,” according to Dr. Angela Aidala of the Columbia University Mailman School of Public Health. “This points to housing as a strategic target for intervention – a potentially exciting new tool to end the AIDS epidemic in America.”

FDA Approves First Integrase Inhibitor to Fight HIV

Blog Category: HIV Health — Blogged by: eric on October 23, 2007 at 8:55 am

Last week, the US Food and Drug Administration (FDA) approved the new HIV drug raltegravir, which is being marketed under the name Isentress. Raltegravir is the first approved drug in a new class of HIV meds known as integrase inhibitors. Drugs in this class fight the virus in a different way from the other classes of HIV meds. When HIV makes copies of itself, it uses the chemical integrase to insert (integrate) its genetic material (DNA) into the cell’s control center, called the nucleus. Once HIV’s genetic material has been integrated into the cell’s own DNA, the cell can become a mini-factory for making new HIV. Integrase inhibitors disrupt this process by interfering with – inhibiting – the activity of integrase.

FDA’s recent action marks its second approval of a new HIV med in a new drug class during recent months. In August, FDA approved the drug maraviroc (marketed as Selzentry), which is in a drug class called CCR5 blockers. CCR5 blockers are designed to stop HIV from entering CD4 T-cells by preventing the virus from binding to a protein called CCR5 on the cell’s surface.

The availability of new drugs in new classes is an important advance in HIV treatment. Drugs in new classes are particularly valuable for people infected with a virus that is resistant to many of the existing HIV drugs – since they offer a fresh shot at controlling the virus. However, like other HIV meds, neither raltegravir nor maraviroc can completely control the virus on their own. To be fully effective, these drugs must be given with other HIV meds as part of a combination regimen.

Direct-to-patient marketing of a genetic test to predict HIV disease progression

Blog Category: HIV prevention, HIV Health, HIV Testing — Blogged by: eric on October 4, 2007 at 10:36 am

During the past month, some staff members at the AIDS Action Committee in Boston have been repeatedly contacted by sales reps from a company called Smart Genetics, which makes a test called HIVmirror. They’ve been asking for community input and help to spread the word about the HIVmirror.

The test analyzes the genetic structure of a person’s DNA to look for two specific mutations known as CCR5-Delta 32 and CCR2-64I.

In persons who are already infected with HIV, these mutations have been associated with slower-than-usual progression of HIV infection to AIDS. The mutations may also reduce the chances that an HIV-negative person will become infected.

Smart Genetics is marketing the HIVmirror test directly to consumers for $99. Their sales angle is that people will have additional “peace of mind” if they know they have genes that would slow the progression of HIV infection.

However, I have some serious concerns about the test and its marketing:

1) First, I don’t see any reason why a person should order this test on their own, without consulting a doctor. The test doesn’t indicate whether a person is HIV-positive or HIV-negative, so the concerns about confidentiality and stigma that motivate people to have anonymous HIV antibody tests wouldn’t apply here. There’s no stigma about having genes that might make a person a slow progressor.

2) Perhaps more important: What practical use would this information have to a person?

For HIV-positive persons: Although the presence of one or both genes might slow HIV progression, an HIV-positive person would still need to see their doctor regularly, have CD4 and viral load tests several times a year, and follow the guidelines for when to start or change HIV treatment. One danger is that, if an HIV-positive person concluded from the test that they were a “slow progressor,” they might decide to go it alone and not see a doctor regularly nor start treatment in a timely way.

For HIV-negative persons: If a person learned that they had one or both of these mutations, they might mistakenly think they were “immune” to being infected with the virus. This might lead to greater risk-taking that could ultimately increase their risk of becoming infected.

3) If a person were to have this test, I think they should do it under a doctor’s guidance. The doctor could provide context for the results, with the appropriate cautions for both HIV-positive and HIV-negative persons. But my guess is that most doctors would view the test as unnecessary, since it has few, if any, practical implications for preventing or treating HIV. That may be the reason why Smart Genetics has chosen to market direct to consumers – if you can’t find a compelling reason for a doctor to order a test, try marketing to the patient.

The POZ web site has an article from earlier this year about the HIVmirror test, with more opinions about the concerns that have been raised about it. Here’s the link.

Reuters Article Reports HIV Patients Can Build “Normal” Immune Strength

Blog Category: HIV Health — Blogged by: eric on July 20, 2007 at 11:45 am

Lancet study reports that HIV treatment can “normalize” CD4 counts

A recent study in the “The Lancet” medical journal found that some HIV+ people who receive antiretroviral therapy can achieve normal CD4 T-cell counts. Although this is an encouraging result, I have some concerns about the way it was reported in the popular press, particularly by the Reuters news service

Before I critique the Reuters article, let me give you a brief summary of the study’s main findings:

1) When HIV+ persons go on antiretroviral therapy (ART) and maintain undetectable HIV levels for long periods of time, their CD4 T cell counts often rise significantly - sometimes to the normal range. 
2)  The increase in CD4 cells can occur even in persons who start treatment with low CD4 counts.
3)  However, to protect the immune system and get the maximum CD4 boost, it’s best to start treatment before counts fall to low levels. 

Each of these three main findings has already been reported in many other studies in the years since effective ART  became available over a decade ago. Although it was fine for Reuters to report on this study, the writer should have noted that it merely confirmed the current thinking about HIV. There was nothing particularly surprising or groundbreaking about the results.

It’s also important to emphasize that, if a person with an AIDS diagnosis achieves a high CD4 count on treatment, they must stay on treatment to maintain that high count.  The Reuters article lacked this important information.

My second beef with the Reuter’s article concerns its headline: “HIV patients build normal immune strength in study.” This headline makes a claim that goes far beyond the scope of the Lancet study, and is frankly misleading. Previous research has shown that, if people stop taking their HIV meds, their CD4 counts generally drop quickly toward their lowest-ever level.  For people with an AIDS diagnosis, this means that, off treatment, their CD4 count may rapidly fall to point where they are at risk for serious illness.

This fact indicates that, even when a person’s CD4 count returns to a normal level, there is residual damage to the immune system that isn’t adequately reflected in their CD4 count.  So there’s NOT sufficient justification for the Reuters headline that HIV patients can “build normal immune strength” through long-term antiretroviral treatment. 

At present, starting effective ART before HIV infection has progressed to AIDS is the best way to protect a person’s immune system.  Ongoing research into therapies that actively boost immune function - likely used in combination with ART - may someday lead to a more complete immune recovery in people living with HIV.

Does Counseling Matter in the Context of HIV Testing?

Blog Category: HIV Health, HIV Testing, counseling — Blogged by: diego on April 16, 2007 at 2:08 pm

Talk about perspective.  Right now, you can get a thoughtful view HIV counseling from someone who’s been in both the HIV counselor’s chair and in the client’s, being told of an HIV positive diagnosis.  Stewart Landers, JD, MCP, a long-time expert on issues of HIV/AIDS, LGBTI health and substance treatment, selflessly peels away the surface and takes time to share his experienced lens.  Read the full piece on LifeLube.org’s Blog.

—Diego

I think it’s not a coincidence that the move to reduce or eliminate counseling as part of HIV testing comes at the same time many are pushing for “routine” or other forms of expanded HIV testing.

The main barrier to widespread HIV testing has been providers’ discomfort or lack of willingness to “go there.” That is many do not want to talk to their patients about a stigmatized disease that may suggest behaviors they (the provider) are uncomfortable discussing or providing counseling or other information about.

Getting a positive test result for HIV is still a shocking piece of news for most people. It changes the course of their lives - how they think about partnering, parenting, sexuality, survival, work and much more. While I’m all for the mainstreaming of AIDS care and the de-stigmatization of the illness, I often find myself in a quandary about how we do that and still acknowledge all the life changing aspects of the illness.

—Stewart  (read full post)

Beyond the Numbers

Blog Category: action, HIV Health — Blogged by: Emerson on March 22, 2007 at 8:11 am

We offer many support groups at AIDS Action Committee. From the members of these groups we have gathered that their health concerns are moving beyond those of just T cell counts and viral loads. This is not to say that HIV is not foremost in my mind when I am speaking with a client. This disease is still killing people every day and it will continue to do so until we stop this epidemic

However, many of our clients have been successfully managing their HIV and are now incurring other medical issues. Unfortunately it seems that HIV docs are not responding in an appropriate manner. Many clients at AIDS Action have expressed frustration. Many feel like numbers rather than patients. I realize how difficult it was for docs in the first 15 years of this epidemic. However with increasingly safer, efficacious drugs now available it is time for doctors to stop treating HIV solely and to start treating patients as human beings again. I think it is time for HIV docs to be HIV docs and let Primary Care docs take care of the rest.

I owe my life to HIV docs. Throughout the years, through their dedication I have survived. Now I am living and aging. I am no longer consumed with HIV and all its baggage. Until this is over my primary purpose will always be to end this epidemic. For now I want to live as normal as possible. Routinely I will see my HIV doc four times a year. The rest of the time I will live.

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