Archive Page 2

18
May
13

None So Blind: The U of MN and Dan Markingson

Yesterday was the ninth anniversary of the death of Dan Markingson, a victim of (at the very least) questionable clinical research at the University of Minnesota Department of Psychiatry. For his mother, Mary Weiss, Dan’s loss must surely be compounded by the knowledge that nothing has changed at the U of MN.  This tragic reality was brought home for me a week ago when I was challenged by U of MN researchers (from an entirely different part of the medical school) about inviting Dr. Carl Elliott to speak to patient advocacy groups about research ethics. They objected strongly to his inclusion on the schedule.  I heard them out–people see things differently and I was interested in their perspective. What bothered me is not that they objected to Dr. Elliott, their fellow faculty member at the U of MN, but why.

This conversation took place in the context of a meeting of investigators who are part of a rare disease clinical research network at NIH. My role in this network is as chair of the patient advocacy group arm of the network, which is focused on patient welfare in the research process, as well as on advocating for research to improve access to therapies. Obviously, there are a number of diverse interests  involved in a network such as this and there can be competing priorities and conflicts of interest. However, the role of the patient advocates should not be murky to anyone.  Our job is to represent the patient interest first and foremost, even it that requires opposition to investigators,  pharma or government interests at times. I assumed this was clearly understood by all.

Which is why it was so odd to have investigators track me down immediately after the meeting to express their concern that I would consider asking Dr. Elliott to speak.  They were crystal clear about where their loyalties lay–‘Dr. Elliott is too anti-pharma and that could jeopardize our current working relationship with ______ .’  They were dismissive, disdainful and made alternative suggestions naming people who have distinguished themselves primarily (IMO) for being ‘ethics for hire’ folks.  One of their suggested speakers is someone who has actually taken the utilitarian ‘bean counter’ position regarding rare disease research, suggesting in writing that it is a waste of funds that could be better used to help diseases that impact more people. Why in the world would rare disease patient groups want such an individual to speak to them (not to mention he was intimately involved in a notorious case of research misconduct involving current researchers in this network)? Why would they assume their deference  to pharma would/should supercede my obligation to the patient groups and, by extension, rare disease patients?

A top-level government staff person involved with the network was present for this conversation.  I was a bit flabbergasted by the position of the U of MN group, so the following day called the staff person to be sure I had accurately interpreted the conversation. I had. It turns out that pharma is essentially controlling the agenda of several of these research consortia in a way that is potentially impeding progress for disease groups that are participating in consortium activities, but whose specific condition is not of interest to  the pharma ‘partner.’ These groups were enticed to participate in a ‘collaborative’ research consortium, only to discover collaboration means accepting whatever research priority pharma dictates.   Researchers have, in effect, surrendered control of their own projects over fear of losing pharma support.  I think most people would call that bullying, yet the researchers from the U of MN seemed completely oblivious to the fact that they had essentially just acknowledged–to a patient advocate no less–that patient interests come second to appeasing pharma.

Happily, most of these consortia have very transparent and productive interaction with their pharmaceutical partners and if other researchers have been threatened with loss of support should the investigators fail to dance to their tune, I am not aware of it. It seems unlikely to be a coincidence that this issue came up with U of MN researchers, however.

The reputation of the U of MN has been tarnished by their handling of Dan Markingson’s case and, if current experiences are any indication, it will not be rehabilitated any time soon.  On the anniversary of this tragedy, my heart bleeds for Mary Weiss and for Dan.

15
Dec
12

Do Guns Kill People? 22 Children Alive in China vs. 20 Dead in CT Says ‘Yes’

Pretty tired of gun-rights enthusiasts smugly trotting out the ‘guns don’t kill people, people do’ catch-phrase as if it is the most clever thing anyone has every come up with. I think they have to repeat this as a mantra in order to rationalize their support for our inexcusably deadly, violent, gun-worshiping culture–one they helped create and continue to support despite massacre after massacre.

Yes, guns do kill people when they are in the hands disturbed individuals, something our current system allows to happen far too often. Let’s not keep acting like we are blind to that fact or that repeating some catchy-sounding phrase changes it. 22 children were stabbed by a nut in China on the same day the Sandy Hook Elementary School massacre happened. All 22 of those children are still alive. In contrast, 20 children and their teachers are dead in CT. The difference was access to guns, so clearly, guns kill people.

That said, I think sane, law-abiding people should be able to own guns. But I don’t think any nutter with a god complex should be able to legally acquire them and I don’t think any individual citizen needs to have a personal arsenal of assault weapons. I think we are a nation growing weary of violence and the excuses for it and the constant focus by gun enthusiasts on their rights over the rights of babies sitting in classrooms not to be killed by a crazy person who should never have been able to get his hands on automatic weapons. This self-serving focus on rights and disregard for responsibilities is wearing pretty thin.

No Constitutional right is absolute. People are not allowed to make human sacrifices to their god despite the fact that the First Amendment guarantees their right to religious freedom. The ‘right’ to life, liberty and the pursuit of happiness’ encapsulated in the Declaration of Independence is waived when we as a society deem that someone is dangerous and needs to be locked up for the protection of others. Why is the Second Amendment alone treated as sacrosanct and not subject to reasonable limitations like all other amendments and founding principles?

Gun worship has  become a mental illness in our society that causes people to deny the evidence of their own eyes. The notion of many gun-enthusiasts that somehow their right to firearms is God-sanctioned and approved is nothing short of creepy and you have to wonder how deeply immersed in the cult of guns one has to be to seriously believe this.  At the very least, these Christians exhibit a serious lack of faith in God’s ability to protect them if they feel they need to be packing at all times. Somehow the irony of professing belief in a pacifist with supernatural powers while paranoid-ly packing heat manages to escape them.

06
Dec
12

Snake Oil–21st Century Style!

Glad this aspect of the meningitis/compounding pharmacy story is finally getting some attention. Compounding pharmacies started in the supplement industry (custom vitamin and supplement blends), a field completely outside of FDA jurisdiction–thanks in large part to elected officials in Congress whose states reap enormous financial benefits from the supplement industry. Over time, compounding pharmacies expanded their market into drugs that were subject to FDA oversight, but elected leaders continued to fight against allowing appropriate FDA regulation of the compounding industry and shifted responsibility primarily to state pharmacy boards. A situation where no one was entirely sure who was responsible for what developed and a disaster was inevitable. Then the same people who refused to allow federal oversight (Congress) of these pharmacies, turned on the FDA for not appropriately ‘regulating.’ Nice gig if you can get it. Create a predictable disaster and then shift blame to the people who warned you there would be a predictable disaster.

If it’s being injected into your body, whatever it is, somebody better be making damn sure it’s safe. Why is this such a difficult concept for Congress? If you don’t like how FDA regulates, then fix it–that is the job of the people we elect to Congress. Don’t exempt snakeoil salesmen from oversight at the expense of the consumer.

13
Nov
12

Call of Booty

Oh good lord.  ‘Middle-aged housewives fight over ancient generals. Hilarity ensues.’

06
Aug
12

Shooting in Wisconsin…

or, We Are All Sikhs Domestic Terrorists Now

Coverage of  the homegrown rightwing domestic terror act unfortunate incident at the Sikh temple in Milwaukee yesterday contained this line from the Milwaukee Journal-Sentinel:

“…which some authorities are describing a domestic terrorist incident. But FBI representatives later backed away from that categorization, saying they were still investigating motive.”

Yes, by all means back off calling this what it undoubtedly is. Heaven knows we can’t sully the name of a God-fearing, America-loving White nutjob by pointing out, rightly, that he is every bit as vile as the people he claimed were ruining the country. Either ‘take it back’ or fear the (seemingly endless) outrage of the God-fearing White Christian power base in this country who will come out with pitchforks (as all true Christians must) and wallow in their imaginary victimization at the hands of brown people, Muslims and liberals.

What a crock. We have a country full of people stuck somewhere in Jr. High emotionally and intellectually, too dumb and too lazy to actually figure out who they hate and why before exercising their Constitutional right to obliterate perceived threats (or even just the threat of perceived threats) with AK-47s, and we all have to pretend these people have serious, legitimate grievances because that’s ‘fair and balanced.’ Purveyors of hate and the millions out there who enable them have blood on their hands and it’s about time someone in a position of authority had the guts to make that absolutely clear without backing down.

04
Dec
10

Wikileaks

I can understand not liking what Wikileaks does, but how exactly is this illegal any more than if a major news outlet publicized the info (which many did)?  It was illegal for the US private who gave the info to Wikileaks to download and share it and the young man who did it (Private Bradley Manning)  is currently awaiting trial on charges of treason. It is not illegal for a private media outlet to publicize it.

It is of far more concern to me, on the ‘burgeoning fascism’ scale, when the government uses its force to control the operations of private American companies like Amazon and PayPal and these private companies agree to capitulate to govt pressure.  Bill Keller of the NYT acknowledged that the govt had ‘advised’ them on which cables should not be made available to the public prior to publication and that the Times took those recommendations to heart.  The govt ‘advised’ them?  Are you kidding me?  In a democracy, the media’s role is to be the watchdog the ensures govt transparency–thus the primary of the FIRST amendment–not to provide marketing consultation for whatever administration is in office. This is the NYT essentially admitting that the fourth estate no longer exists, that independent media take their marching orders from their govt overlords and that the modern American press is simply a PR arm of the US govt.  The founders would be crushed.

Time mag had some pretty good analysis of the ridiculous escalation in the US govt marking everything ‘classified’ or secret.  Much of what was in the cables was already well-known and the cables only confirmed this unspoken common knowledge.  The author rightly points out that the actual problem is secrecy bordering on paranoia and the knee-jerk response of the govt and media (and an illiterate public) that Assange committed treason (he’s not a US citizen and Wikileaks is not based on US soil, so that is not actually even possible).

I agree with several commentators that it’s interesting there is a backlash now. The hideous revelations about troop activities earlier in the year didn’t cause Congress, Amazon and PayPal to punish Wikileaks. The govt had been pre-warned about the current cable leak, yet they didn’t feel the need to pressure PayPal and Amazon to cut off Assange prior to it happening (but are certainly pretending to be outraged now). But with the announcement that the next target is a major US bank, all of the sudden Wikileaks must be cut down at the knees before any information can get out.  Really? Why is it that military incompetence/malfeasance and diplomatic drama are allowed to be leaked, but the potential that a bank’s dirty secrets will be revealed prompts a major effort to destroy this org?  You have to wonder what it is the govt doesn’t want revealed.  Or is it possible that the US govt is now so beholden to private banks they will go to extraordinary efforts to do their bidding?  Thanks to the cowardice of Congress, the Obama administration and companies like Amazon and PayPal’s, we will probably never know.

Again, I am not defending what Wikileaks does. I have no opinion on it one way or the other, but I do know that it is wrong for the US govt to pressure media and private industry to keep govt secrets. That is exactly opposite of the proper role of the media.

Update: Great article in the Atlantic regarding the chilling response of the government to these leaks and the personal attacks on Wikileaks founder, Julian Assange.

 

28
Nov
10

The Real Reason Our Economic Prospects Are Hopeless

It is remarkable that all serious people agree that the best way to deal with struggling economies is to plunge them as deeply into recession as possible and steal money from poor people to cover the bad debts of billionaires.

Duncan Black (aka ‘Atrios’) via Eschaton, in response to the EU bailout of Ireland’s banks.  Apparently, they haven’t been paying attention to how well bailouts worked over here–or maybe they have.  Highest level of unemployment, foreclosure and poverty since the Depression for us regular folks, but the financial sector and corporate America are posting record profits. Maybe the bailouts are indeed working as intended…




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