People cling to their little rafts. Don’t rile the water. People might drown.
Newsflash: People have been drowning for a very long time. There is little evidence that the change and the hope that has received professional spin is real. Step back. Take a look around you. Do you really need some evil court jester like me to say to you. Look here. Look under this rock. Look over here.
In the drowning, people cling to their little rafts because they have to. I get it. This is just a more or less stupid, and inarticulate, frequently outraged voice saying: look here.
This is significant.
A scientific study was released yesterday, and it’s an important one. Let me put it here. This from MedPub today. Headlined:
Treating HIV in the first weeks and months of infection is associated with slower disease progression and better recovery of the immune system, according to two studies in the Jan. 17 issue of the New England Journal of Medicine.
In the so-called SPARTAC trial, researchers found that 48 weeks of antiretroviral therapy started within 6 months of infection significantly slowed HIV progression compared with no treatment.
In a second study, investigators found that starting therapy during a transient immune system rebound, usually seen about 4 months after infection, was associated with a more robust recovery of the immune system than delayed treatment.
Taken together, the studies add “more fuel to the fire” of increased interest in early treatment, commented Michael Saag, MD, the director of the division of infectious diseases at the University of Alabama at Birmingham.
The bottom line, he told MedPage Today in a video interview, is that “these studies underscore that by starting (treatment) early, especially in the setting of acute or recent infection, you can get a lot of clinical benefit.”
The question of when to start therapy has long vexed HIV clinicians and patients, especially in the early years of highly active antiretroviral therapy (HAART), when drug treatment was often associated with serious adverse events.
But in recent years, drugs have improved and the tendency has been to recommend therapy earlier in the disease course, especially with mounting evidence of both better health for individuals and a beneficial effect on HIV transmission rates.
The most recent recommendations of the International Antiviral Society–USA, issued last July, urge that anyone with HIV get treatment, regardless of the state of his or her immune system.
In that context, the SPARTAC trial showed that early treatment of HIV had a clear impact on two important markers of HIV, according to Jonathan Weber, FRCP, of Imperial College in London, and colleagues.
They were looking at the possible long-term effects of a short burst of anti-HIV therapy soon after infection – the trial’s acronym stands for Short Pulse Antiretroviral Therapy at Seroconversion.
The 366 participants, whose median count of CD4-positive T cells was 599 per cubic millimeter of blood, were randomly assigned to 12 or 48 weeks of triple-drug treatment or to no therapy, which was the standard of care.
The primary endpoint of the trial was a composite of reaching a CD4 count of 350 or having to begin anti-HIV therapy if it had been stopped or never started.
Weber and colleagues found that, after an average follow-up of 4.2 years, half of those who got 48 weeks of treatment had reached the primary endpoint, compared with 61% in each of the other two groups.
That yielded a hazard ratio for the primary endpoint with 48-week treatment of 0.63 compared with standard care (95% CI 0.45 to 0.90, P=0.01). The hazard ratio with 12-week treatment compared with standard care was not significant.
The median time for those on 48-week treatment to reach the primary endpoint was longer by 65 weeks than with standard care, Weber and colleagues reported.
They also found a benefit in terms of the level of HIV – 36 weeks after stopping therapy, plasma viral loads in the 48-week group were lower by 0.44 log10 copies/mL than were viral loads in the standard care group 36 weeks after they were randomized.
The other study, by Sunil Ahuja, MD, of the South Texas Veterans Health Care System in San Antonio, and colleagues, looked at the “trajectory” of CD4 cell counts over a 48-week period in 468 patients with acute or early HIV infection.
The primary endpoint of the study was the likelihood of reaching a plasma CD4 cell count of 900 cells per cubic millimeter within 48 months of starting HAART.
In the absence of therapy, they found a transient increase in the CD4 count from the level at study entry at about 4 months after infection – from a median of 495 cells per cubic millimeter to a median peak of 763 cells before resuming a decline.
When patients started triple-drug therapy during that period, Ahuja and colleagues reported, their CD4 counts rebounded to a much higher point than if treatment were delayed.
Specifically, 64% of those treated within 4 months after infection reached 900 or more CD4 cells per cubic millimeter within 48 months, compared with 34% of those whose initial treatment was delayed beyond 4 months.
Taken together, both studies offer evidence of a greater CD4 cell recovery associated with earlier initiation of therapy, according to Bruce Walker, MD, and Martin Hirsch, MD, both of Massachusetts General Hospital in Boston.
However, they noted in an accompanying editorial, “both fall short of defining a clear clinical benefit for such early treatment.”
The studies support current recommendations for immediate treatment but do not “provide ironclad proof” that such treatment offers health benefits for patients, they wrote.
Saag, for his part, told MedPage Today that evidence of clinical benefit is unlikely to be observed in such short-term studies. “For that benefit to be seen,” he said, “you’re going to have to follow patients for 10, 15, 20 years.”
The study by Le et al. had support from Veterans Affairs Center for AIDS and HIV Infection, the VA Center for Personalized Medicine of the South Texas Veterans Health Care System, the NIH, the International AIDS Vaccine Initiative, the California HIV/AIDS Research Program, the National Health and Medical Research Council of Australia, the Doris Duke Distinguished Clinical Scientist Awards, the Elizabeth Glaser Pediatric AIDS Foundation, Burroughs Welcome, and the Max and Minnie Tomerlin Voelcker Fund.
Ahuja did not report any financial links with industry.
The SPARTAC study had support from the Wellcome Trust.
Weber made no financial disclosures but several other authors reported financial links with several pharmaceutical companies.
Editorial author Walker reported financial links with Boehringer Ingelheim and BMS.
Now, allow me to publish my response.
Look here.
Thirty years.
I work with/teach young boys who do sex work who have HIV. These are street kids. Although that is disingenuous. They can come from anywhere. They’re hard to reach. I have always assumed that they were expendable. Society hates these children. Mainly because they put sex and sexuality for sale in everyone’s face. I have lost all of my friends. Every last one of them. The deaths I have attended in the past thirty years have been horrific. The culture never cared about them much, either, although they tended to be professionals; some of them lived a double life because they had to. And this study is coming out now? It’s thirty years too late. MILLIONS are dead. People who could have and were making contributions to this planet. You are telling me what I already know, and I already know it on a very intense anecdotal basis. This will not go unnoticed. NOT what the study concludes. But that it took THIRTY YEARS and millions dead before the medical community could announce: you should really take your pills. Do you THINK!
“Oh, he’s being emotional.” You bet I am. I am a member of ACT UP, and we were right all along. Indifference equals hate, and indifference equals death. I used to blame a virus. The medical community was only responding to a crisis. But this one, this study, is a game changer, and it’s the dates that count. We already know to take the medication. People can fight that reality and do fight it, and in the end, they usually lose. That, too, does not go unnoticed. WHY did it take thirty years to conclude this.
Internal dialogue: Look here: At the institutions who participated in this study, and who were funded to do exactly that. Thirty years, and what the suits are saying is take your pills. Why are you an AIDS activist. Because the institutions do not really CARE. The operant word they use of the street is care. They don’t care about us and they never will.
External dialogue: We did everything we could. Enormous money was spent.
Internal dialogue: Be calm. Don’t let them see you cry. They didn’t care ENOUGH.
Thirty years.
Internal dialogue: Why am I doing this. You are doing this because they even deny these boys exist. That is indifference. That is how it works. That it takes institutions thirty years to address a problem only after tens of millions of people are dead? What people. You know what people.
Hey, the pills work.
Once again in HIV/AIDS, I am stunned. I am tired. Every day I question whether I can keep doing this. The boys will say, and they do say: They do not care. Not enough. NOW you’re telling me we can put a bandaid on a virus that has outclassed us at every turn. There are few, few, few people I trust in this battle with this virus. I look for anecdotal signs. I am a student of human behavior because I have to be. Watch the nonverbals. Watch what people really say. Anthony Fauci is very even-keeled. I’m not. But he is. The NIH plods along. He uses the word hopeful a lot. “We are hopeful, but don’t get your hopes up too high.” The message is a contradiction in terms. Be hopeful but don’t be hopeful. What is he really saying. This is where I study the face. This is where the eyes go grim. This is where Fauci’s professional jaw clenches. He’s not giving you PR spin. AIDS is a disease virtually filled with PR spin. To get through it, you have to take a very hard look at what people are saying. Fauci is really saying: When you get angry, and you chain yourselves to our doors, it makes our work more difficult, please be patient. Please be patient.
How much more patient can I be.
The undocumented boys I work with can’t even get the medication. First, they’re incarcerated in detention centers where they are allowed to walk around a basketball court for one hour. There is virtually no testing because we don’t want to pay Big Pharma for it. Enormous greed even outweighs indifference. People are RICH from AIDS. Then, after weeks or months of this, the boys are put on the bus. Why are you putting children with HIV on a bus and telling the ones who appear to be sick that there’s a hospice in Tijuana. A hospice that has nothing and can’t even get food.
These medication that you’re telling us are so necessary aren’t for everyone. For all the progress rahrahs, the reality is that considering the totality of the numbers we can’t even visualize, it’s a drop in the bucket. If I had to stand there in a uniform and tell sick children that there’s a hospice they can hitch-hike to that can’t even feed them, well, there is just so much indifference I can stomach.
We run a program called Show Me Your Life. It’s in eighteen countries. In the past year, ten children are now dead. But they’ve left a record of their lives, and it’s on video because we give them video cameras. Some of those lives are very difficult to look at. The Russian kids tell us that there are social scientists (yes, they are scientists, too) who are saying: “It’s for the better that Russian AIDS is skyrocketing because it will clean out the gene pool.”
Clean out the gene pool. The operant word is skyrocketing.
The operant word on the street is care. Indifference equals death. We’re expendable.
Thirty years.
***
It was almost surreal that the second I typed the last period of the previous inarticulate rant that I received a message from the IT GETS BETTER campaign to take the pledge. What pledge. A pledge where we look children in the eye and we lie to them and we say: It gets better.
Dear It Gets Better,
Tell it to the trafficked kids I teach. Tell it to the kid who is surviving on the street doing survival sex that it gets better. Go ahead, look him in the eye and tell him. Do not expect the trafficked kids to look you in the eye because mainly what they look at is the floor. None of us believe it gets better. It can get far, far worse. If we are already twisting in the wind, how does that make it any better if we go from twisting in the wind to twisting in the wind a little faster.
I wish I could take your pledge, but there is only so much hurt I can inflict on kids. They are not a theory. They are not an issue. They are human, and frequently, they are lost.
It gets better is rhetoric. It’s a slogan. It has pissed off the kids I work with because they know differently. Boys doing survival sex on the street are n-o-t stupid enough or unsuspicious enough to not comprehend a slogan when they see one. It is an easy out. Adults with easy outs is what they know. Adults who lie to them is what they expect.
It can get worse.
Maybe it can get better for very privileged people. Bust most of us are out here just trying to survive, and we know that everything kids might have; your confidence, your ability to take your HIV medication when you are living on the street, your integrity as an individual fucking and sucking married men in the backseat of cars, your health, your sanity, your addictions, and your self-image, can all fall into a very real tailspin, and the issue is survival, and we know this: It’s not a day-to-day proposition. It’s a moment to moment reality.
Being that intensely alert on a moment-to-moment basis that you are at imminent risk of dying, and not dying well, takes a toll on any human body. It can all fall apart in the next breath.
We’re not talking about kids who have the kind of support system where they can defer reinforcement for twenty-five years, and they can finally leave school (the kids I work with have usually left school a long time ago), and enter the job market.
I do not know any kid like that. Not one.
The kids I know and work with tell me often that they wish they were dead. Suicide ideation is very real. I cannot sit there in my comfortable office and say: It gets better. It might not, and they are very aware of that reality. I would be laughed into the street they live on.
External dialogue. But what can we tell them so they do not kill themselves.
Internal dialogue: We can start respecting them enough to tell them the truth. It will be a truth they already know. But their battered internal dialogues will say: they’re being honest with us; maybe they care.
But that dialogue of mine is internal.
Because if I go against the politically correct grain, they will flay my guts out in every publication from Los Angeles to New York, and the work I do with these kids will be held up to ridicule, and so will with the kids themselves be held up to ridicule, and shame.
Your campaign now exists at the level of an institution. Maybe it’s not run by suits. Maybe it is; I would not know. It’s irrelevant. What I do know is that when I get a computerized message that says — take the It Just Gets Better pledge — I am joining an institutional effort that let’s adults off the hook. I’m with my kids. When you start building a culture that doesn’t throw kids into the street, when you develop a culture that gets people the medications they need to survive, when you do not bankrupt people, when you treat an undocumented kid the same way as you treat me — let us know. Maybe we could join you then. But those things are not happening, and when kids kill themselves, it’s for a reason. Those reasons cannot be and must not be obfuscated by the reality that many kids out there lead lives filled with doubt, terror, and the very real issues of clinical depression.
External dialogue: You, young people, who do not believe it gets better. You do not listen. To us. We are the adults. You fail. We will marginalize you. You are a threat to our core values.
We already know that, too.
We are not the ones who have failed you. You have failed us.
It’s not worth being here.
I am tired of hearing that litany wherever it comes from day after day after day after day. It gets better. Not necessarily. Look here. Look under this rock. Terror can come in many forms.
