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Friday, April 12, 2013

Navigating Treatment as Prevention

by Trenton Straube

POZ - Health, Life and HIV

Treatment as prevention (TasP) can refer to several bio-medical strategies. In both pre-exposure prophylaxis (PrEP) and post-exposure prophylaxis (PEP), HIV-negative people take daily regimens of antiretrovirals (ARVs) to reduce the risk of a possible infection. In prevention of mother-to-child transmission (PMTCT), pregnant women with HIV take meds so the virus isn’t passed to their babies.

Last but not least, TasP also can refer to the idea that treating people with HIV not only improves their health but also prevents transmission of the virus. It’s this notion of TasP that most people seem to associate with the phrase—and it’s this aspect that remains the most misunderstood.

The concept has been floating around for years—after all, if ARVs dramatically reduce the virus in bodily fluids, then it follows that HIV is less likely to be spread during sex—but it gained backing five years ago with the so-called “Swiss Statement.” Authored by four of that country’s HIV experts, it claimed that an HIV-positive person on ARVs and with an undetectable viral load and no sexually transmitted infections cannot transmit HIV through sexual contact.

The statement, however, was based on “review of the medical literature and extensive discussion.” In 2011, the supporting data arrived from the HIV Prevention Trials Network when its HPTN 052 trial found that, for heterosexual couples, starting early treatment led to a 96 percent reduction in HIV transmission to the negative partner. The news made global headlines. The journal Science named it “the 2011 Breakthrough of the Year,” and Time magazine listed treatment as prevention as the year’s No. 3 medical breakthrough.

In December 2012, Chinese scientists claimed that TasP indeed prevented infections—but by 26 percent, not 96. So which is it? What’s more, given that anal sex is 10 to 20 times riskier than vaginal sex and that the studies were based on heterosexuals, how do the findings apply to gay men? The flood of recent data might seem overwhelming, but on closer inspection, a clearer picture emerges on the horizon.

HPTN 052 researchers, led by Myron Cohen, MD, the director of the Institute for Global Health and Infectious Diseases at the University of North Carolina, enrolled 1,763 serodiscordant couples—in which one person has HIV and the other doesn’t—in nine countries. The study, which began in 2005, is ongoing. The couples were divided into two groups: In one, the positive partners started treatment immediately; in the other, they waited till their CD4 counts dropped below 250 or they had an AIDS-related illness. Everyone received regular counseling and care—any sexually transmitted infections, for example, were treated—and they were provided with and encouraged to use condoms (although there were more than 200 pregnancies). All HIV-positive participants attained an undetectable viral load.

By February 2011, the study recorded 28 cases of HIV infection linked to the positive partner. An additional 11 negative participants contracted HIV, but the virus was not genetically linked to their positive partner, which illustrates that the couples were not necessarily monogamous. Only one of the 28 cases occurred in the early treatment group, and it took place shortly after the trial began, when the positive person was probably not yet undetectable.

HPTN 052 is a clinical trial following highly motivated and monitored participants. How will its results hold up in the real world? To find out, Chinese scientists looked at already existing data on nearly 39,000 serodiscordant couples from 2003 to 2011. Despite lacking crucial details, such as whether people with HIV were undetectable, the researchers found an overall prevention benefit of 26 percent. Cohen sees this as “a positive message—that at a population level, you still see a benefit.”

On an individual level, the news looks even brighter. In January 2013, the U.K. Health Department published position papers by two leading AIDS groups—the British HIV Association (BHIVA) and England’s Expert Advisory Group on AIDS (EAGA)—stating that when the positive person is on successful treatment and three criteria are met, the risk of transmitting the virus through vaginal transmission is “extremely low”—as in, it’s “as effective as consistent condom use.” Those three conditions, according to what’s already being called “the U.K. Statement,” include:

• There are no sexually transmitted infections (STIs) in either couple.
• The positive person has a viral load below 50 copies/mL (considered to be
undetectable) for more than six months and on the most recent test.
• Viral loads must be tested every three to four months.

Fulfilling these criteria may seem straightforward, but there are caveats. For example, it’s possible to have an STI and not be aware of it. STIs are problematic because they increase inflammation, spurring both the amount of HIV and the number of CD4 cells—the very cells that HIV latches onto.

Similarly, although viral loads are likely to remain undetectable as long as the meds are taken regularly, treatment regimens can fail. “I’ve had my virus break through the medications a number of times,” says Jim Pickett, director of prevention advocacy and gay men’s health at AIDS Foundation of Chicago, who’s been on meds since 1997 and considers himself very adherent. “And yet, when I became detectable I didn’t know until I was tested—you don’t just one day have a headache and then know you’re detectable. You don’t know.” Hence, testing for STIs and viral load are essential.

How does all of this apply to gay men—and to anal sex? (Remember, it’s the sexual act, not the sexual orientation, that poses the HIV risk.) In the United States, men who have sex with men (MSM) comprise 63 percent of new infections, and globally, anal sex among heterosexuals is an often-overlooked driver of the epidemic. Although no TasP studies have concerned gay men or anal sex, Pickett says, we’re accumulating real-world data and their implications. Indeed, a meta-analysis by London researchers found that treatment can reduce the risk of transmission during anal intercourse by up to 99.9 percent. The U.K. Statement reached a similar conclusion.

Treatment as prevention works really well as a strategy for individuals who meet all the requirements. (Think about it: If it weren’t for the single person in HPTN 052, who technically wasn’t on successful treatment yet, that trial would have reached 100 percent success.) As a population strategy, however, myriad challenges—including the cost of the meds—can sink the prevention potential.

Of the 1.1 million people with HIV in the United States, almost 20 percent are unaware of their status. What’s more, only between 60 and 68 percent are linked to care, between 30 and 41 percent remain in care, and a dismal 16 to 34 percent have suppressed viral loads. (This collection of diminishing numbers is often referred to as “the cascade data.”)

To fully realize TasP, HPTN’s Cohen says, “you have to go through the process of testing people, treating them—in my mind, treating them immediately—making sure they remain adherent and making sure that their viral load is suppressed. If you do all that, I suspect transmission will go down to an unbelievably low rate.”

And while TasP may be a pivotal step in reaching the goal of “an AIDS-free generation,” the opportunities for misuse also exist. Leading thinkers such as the Global Network of People Living With HIV/AIDS (GNP+) have raised concerns. For example, will those living with the virus be coerced into starting treatment? Will they always be informed of their options? Will testing remain voluntary and confidential?

“Providing treatment to people living with HIV infection to improve their health must always be the first priority,” notes the Centers for Disease Control and Prevention (CDC) in a January 2013 background brief on TasP. But such statements are expected when it’s understood that placing people on treatment for a public health purpose is a violation of human rights.

“[I’m] very concerned that the priorities have been skewed, in part by pharmaceutical companies seeking larger markets and in part by a political and public health environment looking for an easy way out,” says POZ founder and Sero Project executive director Sean Strub. “It’s like they want to buy a can of pharmaceutical Raid and spray it on everybody to stop the transmission of HIV. But that still leaves all the other circumstances that facilitate HIV’s spread unaddressed, as well as creates a host of new problems.” We can ensure that people with HIV are making empowered decisions, Strub says, by measuring their treatment literacy once they start taking meds.

When to start treatment is another big question. HTPN 052 found a benefit to starting right away, and the U.S. Department of Health and Human Services recommends treatment for everyone, regardless of CD4 count. But others go by different benchmarks. The data for starting therapy when CD4 counts fall below 350 is stronger than that for starting above 350, says Tim Horn, the HIV project director at Treatment Action Group, and it’s even stronger than data for starting above 500—or regardless of CD4s. Nonetheless, Horn concludes: “All of that said, I simply can’t imagine that we’ll find that [starting early] is actually harming people living with HIV on a large scale.”

In 2010—a year before the HPTN 052 results—San Francisco became the first U.S. city to adopt a policy of universal ARV access. In other words, of offering treatment to everyone regardless of CD4 count, which many people view as TasP. The decision, according to Brad Hare, MD, the medical director of the HIV/AIDS Clinic at the San Francisco General Hospital, was based on their own real-world data and on-the-ground experiences as well as the input of community groups such as Project Inform and the state agency that oversees the AIDS Drug Assistance Program (ADAP).

The HIV clinic sees 3,000 patients; it’s a public health setting where none of the clients has private insurance and there are high rates of active substance abuse, homelessness and mental illness. “It’s a tough patient population,” Hare admits. So how’s the new policy panning out? “It’s working pretty well,” says Hare, explaining that 92 percent of clients are prescribed ARVs and of those, 82 percent have undetectable viral loads (this compares with the nationwide average of between 16 and 34 percent). Citywide, new infections are decreasing. In fact, looking at data from 2004 to 2011, researchers writing in the Journal of Acquired Immune Deficiency Syndromes recently concluded: “‘Treatment as Prevention’ may be occurring among [men who have sex with men] in San Francisco.”

However, Hare points out, the successes cannot be attrib-uted solely to the city’s universal ARV policy. San Francisco has also invested in its testing and treating programs, and it offers a health benefits program to people with HIV. Also, MSM comprise 90 percent of the city’s HIV epidemic, and the local activist community remains informed and involved. “San Francisco is a unique place,” Hare says, “and [our policy] may not apply to others. But there are a lot of generalities we can learn. First of all: This can work.”

Hare has observed that his clients decide to start treatment for a variety of reasons. Some hope that the meds will help them maintain cardiovascular health. Others want to stave off mental decline. He recalls one patient who initially declined ARVs because his blood work was good but then changed his mind after two incidences of condom failure resulted in his negative partner taking HIV meds as post-exposure prophylaxis.

When speaking with his patients, Hare stresses that the evidence points to personal health benefits for starting treatment as soon as they’re ready. Then, as if it’s almost a “by the way” aside, he mentions the prevention benefits for their partners and the community. In fact, he says, “I don’t see our policy as written as a treatment as prevention policy. It is clearly based on the benefits of the individual [with HIV].” In other words, it’s treatment as treatment.

Thursday, April 11, 2013

Now that you have tested positive you will need to find at least three kinds of support:

1) A counsellor with some understanding of gay/bi issues and HIV who can help you with the consequences of this for you and your family. Whether you are out or not, or have a supportive environment or not, will all affect your interaction with HIV, and it is best to be prepared for both practical and emotional issues, and a counsellor can help with these.

2) A really up to date and knowledgeable HIV/AIDS specialist. This is harder to find than one might imagine despite the large organisational structure for HIV/AIDS. Most private doctors, quite frankly, know nothing about it and the ones with most experiences are in public hospitals. But these are not the easiest of places to visit and in any case their focus is, rightly, on mass treatment, and not quite geared towards someone who is middle class and able to bear some of the expenses of the treatment. In other words, the government/NGO system focuses, as it must, on large scale, free treatment and cannot be adjusted that much to each individual patient. But ideally with a disease like HIV, where each person's prognosis can be very different, this individualised treatment is needed and if you are in a position to get it, you must.

3) A physician who will treat your regular illnesses with some knowledge of your HIV status. While the physician should treat your illnesses for what they are, it is possible that it might be best if it is known that HIV is a background factor, so you need a doctor with some knowledge of this. This may not be that critical at the moment, since you are most likely quite healthy now and will be for a while, and this will not be an issue. At some point in time though it might, but hopefully by then you will be better networked with the HIV support scene. Getting in touch with a HIV support group is also a good option to consider at a later point.

OK, but for now, you need to relax. What's happened isn't wonderful, but its not the end of the world. The problem with HIV is that it comes with all the stigma and fear and in your case this will be multiplied by concerns about your family. But you need to remind yourself that:

a) It is just a disease, it is not a moral judgement on you.

b) It is not fiercely contagious. The saving thing about HIV is, in fact, that it is a virus that is quite hard to get. You need direct contact of certain kinds of bodily fluid - blood, semen, pre-cum (it is there in saliva but at such low levels you don't need to get worked up about it). The virus also dies quite fast outside the body. So you are not risking infecting people by just being around them. (I need hardly say that you have to be careful about sexual partners and if you have had unprotected sex with anyone recently then you might need to consider telling those partners).

c) You can have a quite normal lifespan. One way to look at it is that you have acquired a medical condition like diabetes. This can be serious and cause all kinds of complications if it is not treated, but it is quite possible to treat it and build that treatment into your life.

At some point you will probably need to start taking the drugs and yes, in the past the side effects were not great. But newer treatment regimens have reduced this to a large extent and if you find a good specialist you should be able to increase the chance that you will get a fairly problem free treatment regimen.

As to when you will have to start treatment that is harder to say and it is why a specialist is needed. Please don't listen when doctors says, as they often do, that you only need to start starting treatment when your CD4s cells drop below 200. This is the norm set by the government in connection to administration of free medicines, and it is no surprise that they have chosen a level that makes optimum sense for them (in terms of total cost) as well as the patient.

But you don't have to be bound by this and can decide what will be the optimum point for you. The tendency in the West now is to start treatment much earlier - specialists may recommend starting when CD4s fall below 350, or if they show a rapid decline. Please don't believe one myth that floats around which is that after starting treatment you only have that many years to live. Such claims are based on mass studies, with people who often don't have access to healthy food and living conditions, and this should not apply to you. I hope I don't need to say that you need to focus very strongly on maintaining your health in general. (Alternate healing practices like yoga can't cure HIV, but they can help here, in improving your general health and reducing stress).

What you will have to start doing now and this unfortunately does involve real costs, far more than that of the drugs themselves, is to start monitoring yourself more often. This involves going to a good path lab - I think its best to stick to the large national chains like Metropolis if that's there where you are - and doing a HIV package which will show two things: 1) virus levels and 2) CD4 levels (and other white blood cells). These will vary inversely, but its not easy analysing them - virus levels in particular can vary alarmingly without it meaning much. This is where the specialist is vital.

The cost of the testing package is around Rs4500 and this is an expense you HAVE to find money for, at least in this initial phase as your body gets used to the presence of the virus in it. I would suggest you do tests every 2-3 months for the first year and then, as you get a sense of how the virus is settling down in your body you can do them less, but once every six months is a minimum. The cost of these tests is the real financial blow with HIV and while there has been some work being done on bringing them down or providing free tests at government hospitals, this is all still a problem.

All this is a lot for you to process so please take your time to go through them. Please consider seeing a counsellor to help you deal with personal issues, as well as a good doctor. You will be surprised, once these are in places and you are taking good care of your health and being aware of, but not obsessing, about your condition, how routine it can come to seem. Never entirely routine, of course, but manageable and certainly no reason not lead a normal life. 


What about telling others about my status?

The most important point to remember is ... you don't need to tell everyone that you are HIV positive. You need to think about who needs to know and how to tell them. Blurting it out all at once is certainly one way of telling others that you're positive. But healthy disclosure is a process that may require many discussions and contemplations.

Think of disclosing your HIV as the beginning of a new dialogue with the ones you most love and trust. Not only will they learn about you through this process, but you'll learn a lot about yourself as well. The starting point may be saying "I have something to tell you-I have HIV." But chances are that isn't going to be the final word.

Setting the stage for disclosure can make a big difference. Think about where you want to tell someone that you're HIV positive-a place where you feel comfortable and safe. If possible, arrange some place safe for you to go after the initial disclosure, like a friend's house or a support group.

Consider bringing a few pamphlets about HIV or an HIV Infoline card for the person you're telling. Not only might they use these resources later, but having them helps that person know you're not alone, that there's support for you-and for them. Consider bringing someone who already knows you're living with HIV.

Remember that their first reaction is not going to be their last. Like you, those whom you love need time to adjust to this new information. Finally, be brave and proud of the decision you've made!

Telling others you're living with HIV can be scary, painful, and difficult. In the long run, it's usually not as hard as the heavy burden of secrecy. While there's no one best way, there are a few things to think about in advance that might help.

Common reasons why some people choose not to disclose is that others may find it hard to accept your HIV status; some may even discriminate against you because of it. Discrimination within one's family or friends can really hurt. Discrimination at work can hurt, too, but it is also illegal.

The pros may be that sharing your status can feel empowering and can foster a new sense of closeness among friends, family and loved ones. Not hiding your HIV status from doctors or other health care providers can help ensure that you get the most appropriate care, too. Disclosure can also reduce the risk of HIV transmission to others, and it can lead to better, healthier sexual relationships.

Wednesday, April 10, 2013

The Walk for Tolerance was not a gay march .......... Out of the closet out of Jamaica

We need to be always careful how we use things or try to rewrite history to agitate for rights and freedoms, subtle dishonesties in the eyes of some no matter how slight we may think they are can obfuscate the struggle and reputations hence wiping out credibility and we have lost alot of that in recent times due to all kinds of skewed strategies and narratives on a shaky premise.

Gay rights campaigners from J-FLAG use the symbolic rainbow sheet in a 'walk of tolerance' on Howard Cooke Boulevard in Montego Bay on July 4, 2010. - File

Photo from the Walk for Tolerance in Montego Bay in 2010 not of JFLAG but of a US group carrying a rainbow flag.

See more scenes here: WFT Scenes & More

Ethics in advocacy is so important and we have been less than open and honest over the years on crisis issues and our own historical data, why I brought this up was that after re-reading an article from the Sunday Gleaner by Dadland Maye on being an asylee in the United States entitles Out of the Closet Out of Jamaica a photo was captioned (above) as prominent as ever to suggest that an older activity in 2010 by Jamaica Aids Support for Life known as a Walk for Tolerance was referred to as a gay march on April 15, 2010 there was a clear article with representatives from JASL as published in the Observer who went at pains to make sure to clear the air on the issue of the walk at the time that it was a pride march in disguise, even if it was it raises serious questions about strategy, programs and methods of engaging the public based on openness and honesty. 

Initial reports that the walk from Montego Bay's Howard Cooke Boulevard to the Dump Up Beach was successful turned ugly hours later with news that anti-homosexual elements were abusing and harassing the participants according to the Observer article.

"It is alleged that some houses between St Ann and St Mary where some of the persons came from, were stoned. But we are yet to get more details on that. There were persons from Mandeville and the St Ann area who were verbally abused. Some of our sex workers have been harrassed... they say people have accused them of marching in support for gays," said Devon Cammock, prevention, treatment and care co-ordinator and chapter manager for Jamaica Aids Support for Life, Montego Bay.

According to Cammock, the prevailing stigma that the JASL is a gay organisation, " is going to hurt persons especially those who need help".

"Our major focus is minority groups because they are the most vulnerable to HIV and Aids and based on the feedback we are getting from the number of persons coming in to us, it was evident we had to do something. Part of what we needed to do in our ongoing campaign about stigma and discrimination was atolerance walk". JASL works with members of the marginalised communities. We work with sex workers, we work with men who have sex with men, we work with hearing impaired, we work with we work with people in general," he said adding that the participants were 'marching for their own rights'.

Among the groups that participated in the walk were:

* The Jamaica Red Cross;

* The Sex Workers Association of Jamaica,

* The Jamaica Forum for Lesbians and Gays (JFLAG);

* Women for Women (WFW) and persons living with HIV.

Nancy Wilson, the openly gay leader of the Metropolitan Community Churches also participated.


The rest of the article by Mr Maye however was relatively OK save and except for the atheistic ambit which I have a huge issue with but for the issues that cause many Jamaicans to leave our shores.

here is an excerpt of the article:

Forgetfulness makes people lose their ability to identify with the life of others who pattern their history. They will still fight, but they might lose the activist passion of prior years. I promised myself I will always try to remember the bad. But I now appreciate that I can recall and love the beautiful memories that had taken second status to the sorrowful ones for so long. I had forgotten those things that made me love Jamaica.

Why do I look forward to Americans asking me, "Where are you from?" Why do I feel at home, even though away from my first home, when I hear our voices speaking in Brooklyn supermarkets, or see bodies wearing the black-green-gold colours of our flag in a Queen's train, or feel a hand touch my shoulder at a Manhattan event only to say, "Yuh dress like one a we. Lawd a mercy! Heh-heh-hey! Are you from Yard?"

Feeling situated in a safer physical space in America and living farther away from painful memories, I am able to reflect on Jamaica and Jamaicans. On the things that united and loved us. Our rich inquisitive culture. Our Patois semantics. Our loving and feisty body languages. Our comedic country life versus the dramatic city life. Our PNP and JLP politrics theatrics. Our privilege of knowing the name/s of every great-grandmama with herbal bushes beneath their pillows, and of the coming-to-no-good children down dat deh yard deh, and the good-brain ones who reap most community smiles.

Our care in showing up at hospitals with grater cake and cornmeal pudding, but not only for family. Our tendency to pack cemeteries to weep, to hold an experienced weeper from tumbling inside another grave, and to 'rockstone' the casket out of love, but not only for family.

Disseminating information of Jamaican pride alongside its horrors is what journalists and activists should deploy in their roles. Increasingly, it concerns me whenever I visit places to speak that audiences expect only doom-and-gloom stories about Jamaica.

"The violence there! How bad is it?

"Will I get killed there?"

"No disrespect, but I will never go to your country. Sorry!"

"They can keep their beaches and all-inclusive hotels to themselves!"

"Aren't you glad you escaped?"

After hearing these comments, I question what damage I, journalists, and other human rights activists have done in representing the Jamaican story. How might we represent it to ensure that it certainly brings attention to horrific human-rights abuses without cultivating a global impression that Jamaica is an island of savages? Activists and journalists should remain concerned about whether our roles to liberate Jamaica might be inadvertently liberating global stereotypes about Jamaicans.


also see this flashback on the controversial Walk in 2010: