Sayen CroWolf

A little bit of a rant on the HIV home testing “breakthrough” #HIV #AIDS

Sayen CroWolf — Thu, 17 May 2012 19:50:21 +0000

I’ve bitten my tongue on this one as long as I can.

Since the FDA gave preliminary approval to the OraQuick HIV Home Test, I’ve watched a number of websites cut/paste/poach the same information over and over and over without REALLY reading through the information to see that there’s more to this than meets the eye. It’s always the same thing: one site puts it out, and then it’s recycled everywhere without sharing what’s really going on with this test.

1. This test that will apparently be slipstreamed to approval is NOT the same test you can get from a professional tester. From one of the very articles copy/pasted on Rod 2.0 (who’s normally a better HIV reporter than this, )

But a trial conducted by the company showed the home test only correctly detected HIV in those carrying the virus 93 percent of the time. The FDA estimated the test would miss about 3,800 HIV-positive people per year, while correctly identifying 45,000, if approved for U.S. consumers. The test could prevent 4,000 new transmissions of the virus annually, though the figure could vary depending on how many people purchase the test. While it’s not clear why the test was less accurate in consumer trials, company researchers said they expected the test’s sensitivity to drop when used by consumers versus professionals.

Panelists stressed that the test’s labeling should state that a negative reading does not automatically mean the person does not have HIV, because of imperfect results. Panelists also stressed the importance of a toll-free number to put those who test positive in touch with counseling and medical care.

That roughs out to about a 1 in 12 chance that you’ll get a wrong result. Roughly, that means you couldn’t use this test on an entire softball team and get everybody an accurate result. Is this test something you want to bet your life on?

2. This test will set you back 60 bucks. Going to a qualified tester? Free.

3. Misuse and abuse: here’s just a few scenarios I can see happening

—Everybody at a sex party “tests” to insure a negative status, and those who might test positive are serosorted out of the pack (on what might be a truly negative result. There you are; a 20 minute HIV stigma test

—Compelling your partner/pickups to test

—Being that person who’s forced TO test.

—Unwelcome circumstances brought down on you for refusing to test or if your test result is not negative. (i.e. physical violence because you told your partner you were negative, you know you are negative, and this test comes back with a positive result.

4. Knowledge level of the person taking the test, and their strict adherence to the instructions. Guess what? If you bought this test and left it in your car for an afternoon on a too hot or too cold day – test results will be blown.

5. People not using the trained counselors attached to the test product. I’ll tell you, I participated on a review panel for a home testing product with about a dozen other HIV advocates, and this is something that I absolutely stomped my feet over. Without compulsory counselor access, this test would do more harm than good – period. I’ve watched some of the comments on the other websites, about how counselors are all too touchy feely and basically a worthless bit of the equation.

Bullshit. If you pop a positive results that you are mentally unprepared for at home on a Friday night, you NEED that person you reach out for to have an encyclopedic knowledge of HIV/AIDS and how to start managing your health immediately. Anyone who says otherwise about the counselors is either a/delusional, b/full of shit, c/negative, or d/never had an HIV test themselves.

6. Testing window. Use this one too soon after exposure, and the result is worthless.

Did I mention that going to the clinic, getting tested by a professional, with a test that’s over 99% accurate is FREE??? I’m not done with this subject, not by a long shot. It’s also amazingly disingenuous to put out a sound bite response saying how great this test is because the black community is being torn apart by new HIV cases year after year.

It’s true. Black men are the highest risk group out there lately.

And that is precisely why they need a test that’s not going to play with their lives. They should have much better advocacy out there issuing press releases that equate to nothing more than “hey, it’s better than nothing, right?”

Coming to Chicago for the NATO summit? Your laptop and cell might be attacked…

Sayen CroWolf — Thu, 17 May 2012 19:12:03 +0000

I know the city is already gearing up for this, because I’ve been caught in a flurry of gridlock, street jams and security. This is an interesting thought, so I wonder how much of it just might come through when the summit convenes:

“….Internet, wireless voice and even electrical outages are possible, and workers and residents should back up their devices.

“Political activism and any type of social unrest manifest themselves first in cyberspace,” said Tom Kellermann, vice president of cybersecurity for Trend Micro, a Cupertino, Calif.-based cybersecurity firm. “Whether it’s an anarchy movement, war opponents, terrorist groups, state-actor groups or criminal groups, they become much more active around these types of events.”

He said he has seen “an exponential increase” in “malware” (malicious software) targeting smartphone and tablets.

“I wouldn’t recommend using Wi-Fi or sharing one’s location via Foursquare near the event,” he said. “(Cybercriminals) can leverage ‘man in the middle’ attacks against Wi-Fi access points in the neighborhood.”

Anyone who gains access to a person’s wireless device knows the person’s location when he is carrying the device, said Kellermann, a former member of the president’s Commission on Cybersecurity who spoke to a cloud computing conference in Chicago last week.

RIP Donna Summer

Sayen CroWolf — Thu, 17 May 2012 18:58:21 +0000

And another part of my gay baby years just passed. Donna Summer died from lung cancer today at the age of 63:

Donna Summer — the Queen of Disco — died this morning after a battle with cancer … TMZ has learned.

We’re told Summer was in Florida at the time of her death. She was 63 years old.

Sources close to Summer tell us … the singer was trying to keep the extent of her illness under wraps. We spoke to someone who was with Summer a couple of weeks ago … who says she didn’t seem too bad.

In fact, we’re told she was focused on trying to finish up an album she had been working on.

Summer was a 5-time Grammy winner who shot to superstardom in the ’70s with iconic hits like “Last Dance,” “Hot Stuff” and “Bad Girls.”

Her music defined so many firsts for me over the years. What was playing when I first lost my virginity (guess which song), which songs were the ones I loved back in my club days, which one(s) I can still sing the hell out of to this day when I’m cleaning the house, Richard and I seeing her in concert – repeatedly

I’ve met and photographed alot of celebrities over the years and she was always one that I wanted to meet and never had the pleasure.

My loss.

And one of her best songs that never went anywhere at all. Richard and I saw her perform this live, and we were both sobbing by the end. It’s a bit of a cheesy song, but you can’t listen to this and deny the phenomenal voice.

FDA approves at home HIV test. I’m looking for the jump-for-joy factor here…#HIV #AIDS

Sayen CroWolf — Tue, 15 May 2012 23:40:29 +0000

On the surface, I really WOULD think that this is a fantastic development. But, two big things that JMG didn’t bother to copy/paste out in his regurgitation of this is are A: this is NOT the same test being used, despite JMG’s comment that it is. The OTC version has a very reduced sensitivity. B: The OTC version has a 93% accuracy rate, versus 99% when conducted professionally. Once again, JMG demonstrates that he’s not particularly bothered with being accurate, so long as he can poach/copy/paste without too much concern for facts.

That’s one false negative for every 13 tests. That to me is unacceptable. (see frame at the bottom)

UPDATE: There’s a big, glaring omission to my coverage of this that I hadn’t considered and this was pointed out to me by a friend. What about all the BAD ways this test can be used?

**Testing someone on the sly: I don’t know if it works on say, saliva found on a toothbrush, but what if it does?? And, what if in this instance they are the one test in 13 that’s not accurate.

**On-demand partner testing. You meet someone wherever and get to the naked and play stage and one partner whips out the test before the good times roll. This one too can be the 1 in 13 test, AND, what happens if partner B decides to not submit to the test partner A is demanding? I can see it now, “You dirty bastard, if you WERE negative you’d take the test, ” he said, reaching for the baseball bat.

This whole thing has disaster written all over it and the committee’s rationale of “well at least 12 people will know their true results” simply is not good enough.

Major talking points at the advisory committee hearing were the test’s sensitivity and specificity. An assay’s sensitivity reflects its ability to prevent false negatives—an HIV antibody-negative result for someone who is infected with the virus. An assay’s specificity reflects its ability to prevent false positives—an HIV antibody-positive results for someone who is not infected with the virus.The OraQuick In-Home HIV Test has strong specificity (99.98 percent). Whereas the OTC test will yield one false-positive result for every 3,750 true-negative results among people who aren’t infected with HIV, the professional oral swab Oraquick test yields one false-positive for every 462 true-negative results.The OTC’s sensitivity, however, averaged only 92.98 percent, compared with the 99 percent sensitivity associated with the professional OraQuick oral swab-based assay. For every 13 “true-positive” results using the In-Home OraQuick test, there may be one false-negative test result—or approximately 3,800 false-negative test results per year—an analysis of the Phase III clinical trial data showed.

Of particular concern to the FDA presenters was the lower end of the estimated sensitivity range in the Phase III clinical trial—the “lower bound of the 95 percent confidence interval” in statistical parlance. Accordingly, the sensitivity may be as low as 86.64 percent, which is significantly lower than the 95 percent that has historically been required by the FDA’s Blood Products Advisory Committee.

PrEP approved by a wide margin. Now, what about those ADAP waiting lists? #HIV #AIDS

Sayen CroWolf — Sun, 13 May 2012 20:06:16 +0000

I’ve been a big advocate of PrEP and Gilead’s Truvada as a preventative course of action. Any solution to me that reduces the number of infections is a good one. A few days ago, the FDA approved Truvada by a huge margin:

The US Food and Drug Administration (FDA) took a decisive step yesterday towards approving the use of combination pill Truvada (tenofovir/FTC) as a prevention method for HIV-negative people.

The FDA’s Antiviral Drugs Advisory Committee (ADAC) voted by a majority of 19 to 3 in favour of recommending Truvada as PrEP (pre-exposure prophylaxis) for men who have sex with men, and by 19 to 2 with one abstention for an approval for use by the HIV-negative partner in serodiscordant couples.

There was a closer vote, however, when it came to recommending its use generally in individuals for people at risk of HIV infection: 12 to 8, with two abstentions, voted for a general recommendation for any person at risk of HIV.

The ADAC decision was taken after an all-day meeting on 10 May. This meeting discussed the findings of a written report and also heard submissions from a large number of community prevention and treatment advocates. Interest was such that the FDA extended the time for submissions from advocates and community members from one hour to two and had to organise a ballot for access to the hearings.

The written report had concluded that concerns about safety and HIV drug resistance were not sufficient to delay the introduction of PrEP. It also decided that concerns about poor adherence levels seen in some randomised controlled trials, and about whether PrEP would negatively influence behaviour to such a degree that people ended up at greater risk of HIV, were beyond the remit of the FDA.

“I don’t think it’s our charge to judge whether people will take the medicine,” panellist Dr Tom Giordano told the Los Angeles Times. “Our charge is to judge whether it works when taken.”

Considerations of cost are also explicitly ruled out of the FDA’s remit when it comes to approving a new drug or indication.

The bolding above is mine; that’s the money shot. Despite all the bellyaching from Michael Weinstein of AIDS Health Organization, the final decision is on it’s way toward approval in June. Furthermore, in comparison to Weinstein’s “it’s not a magic pill mantra” the collection of HIV advocates that are in support of Truvada has been steadily growing. From PR Newswire: (full text of a multi-group letter of support at the bottom of the release)

At the May hearing, an FDA Advisory Committee will consider data from a wide range of safety and efficacy studies, including two pivotal clinical trials of TDF/FTC as PrEP:

The Partners PrEP trial, which found that daily TDF/FTC reduced HIV infections by 73 percent among heterosexual couples in Africa in which one partner was HIV infected and the other was not. Efficacy was 90 percent among those who adhered closely to their daily drug regimen.

An international study called iPrEx found that daily use of the drugs reduced HIV infections by 42 percent among MSM, and by more than 90 percent among participants who took their medication consistently enough for the drug to be detected in their blood.

These studies demonstrate that PrEP was safe, with minimal side effects and no significant risk of drug resistance. These and other trials also indicate that effectiveness of TDF/FTC as PrEP depends greatly on individuals’ adherence to the PrEP regimen. In each trial, when adherence was low, there was low or no protection, pointing to the central importance of strategies to maximize adherence.

“If FDA approves PrEP, we’ll still have a lot of work to do, just as with any other new drug. We’ll have many questions to answer in order to use PrEP effectively to reduce HIV infections,” said David Munar, President and CEO of the AIDS Foundation ofChicago. “The essential next step will be to launch additional demonstration projects in a wide range of populations and settings. These real-world projects will help us understand how to achieve higher levels of adherence, how to best combine PrEP with other approaches, and which specific populations can benefit the most. While a handful of these real-world studies are now being planned, we need to pick up the pace.”

Now, not to throw ants on anyone’s picnic, but lets level the scale for a moment. I’m betting that Truvada makes it’s way through approvals and presto! The price falls through the floor. What’s estimated to about $35 dollars a day per dose (that link is a bit old, but you’ll get the idea) is no doubt going to get cheap. Real cheap. What’s the point of Gilead pushing getting a drug approved that no one can afford, and no insurance plan will cover?

None. It’s business suicide and they know it. Once the approvals process is over I’m going to wager that Truvada is far more accessible than it is currently.

Now – what about those ADAP waiting lists? Hmmm? It’s great that Truvada is on it’s way to becoming a prevention enhancement for people, but what about those who are HIV positive and can’t afford their medications?

ADAP has been a major mess for years now, and while it’s been getting better we are long overdue to eliminate those waiting lists entirely. More than 2700 people currently are on a waiting list in their state (down from 8000, which is great) but it’s still 2,759 people. I can’t speak for you, but that doesn’t work for me. Due to budgetary nightmares both at the state and federal level, the lives of these people get to hit the pause button. Their virus, however keeps progressing.

HIV doesn’t hit a pause button.

In which gay bloggers dogpile on the mentally ill

Sayen CroWolf — Sun, 13 May 2012 16:06:07 +0000

For a few days now, blogs have been having their pile of fun with the Youtube video of Jane Svoboda and her anti-gay rant to the Lincoln City Council

Wow. This is comedy gold. Lincoln, Nebraska is debating a LGBT protection ordinance, and at a public hearing, attendees are treated to a screed that includes why homos are shoplifters, discusses how they shouldn’t work in schools or hospitals, describes an*s-licking and fungus…I couldn’t catalog all of the batsh*ttery, but I hope someone writes up a transcript of this one.

And from JMG:

Enjoy five minutes of the most bizarre cray-cray you’ll hear this year. “Whitney Houston was found without clothes in a bathtub. Every corpse found without clothes has a partner that did away with them.” Also: Did you know that you’ll die within thirty minutes of rimming somebody? This came during the testimony about Lincoln, Nebraska’s proposed LGBT anti-discrimination ordinance.

Any rational person can’t listen to 60 seconds of that clip and NOT realize that Svoboda is mentally ill. And, it turns out, she truly is:

Jane Svoboda, 52, lives at an assisted-living facility in Lincoln and is listed as a protected person, according to court documents. Her brother, Patrick Svoboda of Ogallala, is her conservator because she is incompetent, the documents say. He was unaware of the video’s popularity, but wasn’t surprised — he knew it would be a matter of time before she got in trouble somewhere. He said he’s disappointed the video garnered such attention and jokes without the whole story. “To me, it shows how little society really cares about people with mental health issues,” Patrick Svoboda said. “She does have a very tender heart … but anything she says is certifiably schizophrenic … she’s not some crazy conservative.” He said her family has tried to get her help multiple times, but unless she harms herself or others, there’s not much more they can do.

It wasn’t the first time Svoboda has testified before the council. She also is a registered lobbyist at the Capitol.She usually speaks twice a month during the council’s open mic sessions, where citizens can talk for up to five minutes on any topic. The council sits patiently until she is done. Svoboda has talked about Chinese “subliminals” that come through cellphones and other electronics, paradise on earth and family members being killed by doctors. She once brought in a large stick figure that she said was her mother’s ghost, but the council told her not to bring in props anymore. She’s also well-known on the University of Nebraska-Lincoln campus, where she’s handed out thousands of fliers. Students have dubbed her “Crazy Blue Protesting Lady” because of the blue coat she often wears. A Facebook page about her has nearly 3,000 members.

Thanks in part to JMG’s and PHB’s efforts above, the clip of Svoboda’s rant as of today has 745,000 hits and climbing. Jervis’ justification for putting her on display? Well, she sounds just like the right wing therefore….

How could such a deeply mentally impaired person be allowed to be a registered lobbyist? That’s easy. It’s because such literally insanely deranged people are often indistinguishable from the rank-and-file religious haters that organize against us. How different are Ms. Svoboda’s delusions from those who believe in a God that sends earthquakes to stop gay marriage?

So, let’s take someone who’s obviously mentally ill and make an example out of them? ”See? A person truly crazy sounds just like the right wing, so therefore they ARE crazy!” No, I’m sorry – fuck that.

Svoboda is someone’s mother, or sister, or favourite aunt, and now 745,000+ people know she’s schizophrenic and likes to rant. How would you feel if that were your aunt? For me, I wouldn’t give a shit how her ramblings paralleled those against gay rights in this country. She’s someone who deserves sympathy and understanding, regardless of the content of her “speeches”, and that’s something Jervis, Spaulding and all the other sites that ran that clip haven’t the slightest comprehension of.

I won’t link to Svoboda’s speech and give her illness any more negative publicity. If you go to the clip you can run it down through either of the articles above.

Best place in Europe to be gay? The UK (no surprise to me…)

Sayen CroWolf — Sun, 13 May 2012 15:44:06 +0000

From Gay Star News:

Britain was revealed as the gay rights capital of Europe, according to the first study of its kind to be published on Tuesday (15 May).The European International Lesbian and Gay Association Europe (ILGA-Europe) index, which rates 49 countries on more than 40 categories, rated the UK as the top country for gay, lesbian, bisexual and transgender people to exercise their legal rights.Britain allows same-sex couples to obtain a civil partnership, apply for joint adoption, and discrimination based on sexual orientation is prohibited.Russia was bottom of the list after legalising an anti-gay law in St Petersburg, effectively making people criminals if they discuss homosexuality in public.Other countries to place near the end of the list were Moldova, Ukraine, Belarus, Armenia, Azerbaijan, Turkey, and Macedonia.

I’ve actually been to every country on the bottom of the list (as well as the top as well) and I couldn’t agree more with the entire lot of it. My biggest concerns when I was in Azerbaijan? Not that I was American, because when I travelled to some places it was ALL about telling people that I was Canadian so that they’d never find out and I’d accidentally become disappeared.

It was about the locals finding out I was gay.

(thumb via the linked article)

A quick update on me

Sayen CroWolf — Sun, 13 May 2012 15:26:05 +0000

Hi there,

Yes, I’m still around – albeit a bit exhausted. Work has been ramped up incredibly, to the point I’m averaging 80-90 hours a week, and reduced to posting things on here either on the weekends or via my phone when I can.

As I’ve said before, I’m not about to let this site die. I’ve put too much work into it, and built up too much of a loyal following to stop now. I TRULY appreciate your patience and hanging around waiting for me to get back in the saddle. Things will be returning to normal soon around here I promise.

In the meantime, I’ll put out my usual plea: if you’re one of those folks that has an overwhelming writing itch and want to get some of your work out there, we need to talk. Get in contact with me and we’ll go from there.

Obama supports gay marriage, and yes, my prediction on this was wrong.

Sayen CroWolf — Wed, 09 May 2012 20:08:58 +0000

Unlike the uberbloggers, I do admit when I am wrong.

I’ve said repeatedly that Obama would not change his public position on gay marriage during an election year. Too risky and it’s going to burn too much political capital that he can’t afford.

I was wrong.

Am I upset about that? Not in the slightest. I am not a political operative or analyst, and unlike others I don’t see the need to work my resume into every article I write. What will upset me in the coming weeks are those who’ll sprain every muscle in their body kissing their own asses, claiming credit for today’s announcement.

Does Obama’s announcement mean that we all should be dusting off our copy of Bette Midler singing “Going to the Chapel”? Nope.

What it does mean, in the short term is that Obama just locked down four more years.

Dharun Ravi ramps up to try and dodge his punishment

Sayen CroWolf — Sun, 06 May 2012 18:36:48 +0000

His lawyers are rounding up just about anyone who’ll write a positive-sounding letter for him. Sentencing is coming up on the 21st and his lawyers want him to get probation:

“He loved to joke around with people, though his humor could sometimes be classified as sarcastic,” wrote Mohini Singali in a letter included in court filings by Ravi’s attorneys on Friday asking a judge to sentence him to probation rather than prison. “Not many people were a fan of this, but that is who Dharun was. Never did he have any intentions to injure anyone.”

Ravi, 20, was convicted in March on charges that include bias, intimidation, invasion of privacy and evidence tampering.
Sentencing is scheduled for May 21. The most serious charges each carry a maximum sentence of five to 10 years. As an Indian citizen raised in New Jersey, Ravi may be deported after serving his sentence. If probation is granted, deportation would be less likely, Ravi’s lawyers wrote.

Ravi spied on his roommate, Rutgers freshman Tyler Clementi, 18, with a webcam, watched with another student, then tweeted about it. Clementi leaped to his death from the George Washington Bridge days later.

The letters, many from high school classmates, are part of the ongoing defense campaign to characterize Ravi’s actions as a bad prank gone awry. In Friday’s filing, defense lawyers portray Ravi as an ostracized young man who withered under the blazing glare of the news media.

“Immediately upon arrest, Dharun became the face of cyber-bullying and homophobia in the media,” the defense lawyers wrote in documents submitted to Superior Court in Middlesex County. “As an eighteen year old who has become the subject of scholarly articles, television specials and countless newspaper and magazine articles, he withdrew from his friends and anyone who wanted to keep in contact with him.”

Notice how he continues to blame everybody but himself? He’s the victim, he’s the bullying posterchild and that’s just not fair…..etc., etc.

Except it is. At the end of the day it’s very simple: his actions were the push over the cliff that Tyler Clementi was already standing at the edge of. Done. He became the posterchild of bullies because of the heinous nature of his actions. I don’t feel bad for him in the slightest and I hope he gets buried under the jail.