Friday, April 07, 2006

Candidate's Forum

This is a quick report on the Washtenaw County Democracy for America Candidates Forum, held on April 5, 2006, at the Superior Township hall. The purpose of the Forum was to have Democratic Party candidates for State of Michigan offices answer questions about themselves and their campaigns.  This forum was small; there were three candidates there, two for the Attorney General spot, and one for the Secretary of State (SoS).  They invited three attorney general candidates, but only two agreed to come.  Scott Bowen is the one who did not come. Amos Williams and Alexander "Sandy" Lipsey did come.  Geoffrey Fieger also may be running, but nobody even mentioned him.  For reference, here are their campaign sites:


Actually, Fieger's site is not a campaign site, it is the general site for his law practice ("the nation's premier law firm").

Scott Bowen apparently is Grandholm's pick for the AG spot.  The two who were there were asked if they knew why Bowen did not come.  Williams said that the rumor is that Bowen is on vacation in South Carolina.  I don't think anyone knew for sure.  

At the end of the Forum, I found that someone had placed little fliers under the windshield wipers of all the cars.  It was a notice that said that Scott Bowen in pro-life.

Ron Suarez is making a podcast of the Forum; a link should be posted here soon (or here).

I enjoyed the candidate's forum.  Both candidates for attorney general were impressive; I would have no trouble supporting either of them.  Sandy Lipsey is currently a State Representative.  Amos Williams is an attorney, a retired cop, and a military veteran.  Both name civil rights as important issues, although Williams was a little more vocal about that topic.  Both are strongly pro-choice. Lipsey talks a little faster, and gives a better global impression, but Williams comes across as more thoughtful.  He sometimes ran out of time while responding to questions (all candidate's responses were limited to two minutes.)  Both candidates often drew applause from the audience.  Both seem intelligent and well-educated.  Lipsey has a bachelor's degree in physics, graduated for the Kennedy School of Government, and Michigan Law.  Williams graduated from the FBI National Academy, and Detroit College of Law.  Both make an issue of consumer protection.  Both characterized the current AG, Mike Cox, as being excessively pro-business and weak on consumer protection.  They characterized Cox as being a man of little action.  They claim that his centerpiece accomplishment -- the increased aggressiveness in collection of child support -- as an unnecessary duplication of efforts already carried out by individual counties.

The SoS campaign is less interesting.  The site, http://www.uselections.com/mi/mi.htm, lists Mary Waters as the only active Democratic candidate for SoS.  She is hoping to unseat the incumbent, Terri Lynn Land.  She mentioned that one of the reasons she is running, is that people asked her to run.  The other reason she gave is that the current SoS had an important position in Bush's campaign, which is a conflict of interest.  Waters currently is a State Rep, and has asked for legislation that would prevent such conflicts of interest.  The main concern that she expressed was that the SoS in the chief elections officer in the State, and it is important to have someone with no conflicts of interest.  She exhibited some awareness of the current concerns about the integrity of the voting process.  However, I would have preferred to hear from her a greater understanding of the complex issues involved.  

For reference, the current SoS, Terri Lynn Land, was interviewed previously by Jack Lessenberry (1 2).  She has the idea of having picture ID voter registrations, that could be swiped in a machine at the voting precinct.  Her idea is that all of those machines would be connected together, so that all could be machine-verified, and no voter ID could be used more than once on a given day.  That sounds like an expensive proposition to combat voter fraud, when we all know that election fraud is the real problem.

After hearing the interview with Land, I wondered how anyone could propose to set up hundreds of nodes in a secure network on Monday, and expect it all to work at 7AM on Tuesday.  It is one of those things that is a nice idea, but anyone who has tried to set up any large network, not even a secure network, would probably tell you it would be foolish to expect it to work right away.  To expect to be able to set it up and have it be secure, and then to verify the security and functionality, in a short period of time, seems nutty to me.  It might work, but it might not, and what do you do if it doesn't work?  (Not that I am an expert, but I think I know enough to be able to say that much.)   Sure, you could set it up weeks ahead of time, but that gives it more time to fail, and creates a problem of how to make sure no one tampers with it in the meantime.

Is it strange to have two opposing candidates, one named Land, the other Waters?

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Wednesday, April 05, 2006

Collateral Damage in the War on Terrorism
Medical Ethics in Inaction

This post is about the case of a patient with Duchenne Muscular Dystrophy, whose life-prolonging medication was intercepted at the border by Homeland Security agents.  The post includes a long excerpt from the Grand Rapids Press.  I would not ordinarily excerpt so much of an article, but I think the article will disappear behind a firewall in a couple of weeks.
Boys' medicine held up by Homeland Security
Monday, April 03, 2006
By Pat Shellenbarger
The Grand Rapids Press

Tyler Fehsenfeld's doctors said the 6-year-old needs a drug from a company in England to delay his deterioration from muscular dystrophy.

The U.S. Department of Homeland Security said he couldn't have it.

Only after U.S. Rep. Vern Ehlers' office intervened last week did the U.S. Food and Drug Administration release it.

Tyler's parents, Anessa and Scott Fehsenfeld, of Rockford, were relieved but perplexed the federal agencies blocked a medication vital to their son's health.

"I'm choosing to give this drug to my son that a doctor says he needs, and my country says he can't have it," Anessa Fehsenfeld said. "As if the diagnosis isn't bad enough, and then you have this to deal with."

She ordered the drug, Deflazacort, in late January after Tyler's doctor prescribed it to slow rapid muscle decline and perhaps prolong his life. On March 6, the couple received a letter from Homeland Security's border protection division saying it confiscated the medicine because it is not approved by the FDA.

"I was shocked," Fehsenfeld said, frantic that her son soon could lose his ability to walk. "You think of sneaking it over the border. You're willing to do whatever you have to."

Several other parents of boys with an aggressive form of muscular dystrophy called Duchenne received the same form letter. In November, Customs began cracking down on shipments of prescription drugs from outside the United States.

While Deflazacort is available in Canada and throughout Europe, the company that makes it has not sought FDA approval to sell it here. The reason, some doctors and advocates for muscular dystrophy patients believe, is because it is an "orphan drug," with a market too small to be profitable.

An estimated 12,000 U.S. children have Duchenne, which affects only boys, said Pat Furlong, president of nonprofit Parent Project Muscular Dystrophy. [...]

Margaret Wilkinson, of Spring Lake, said she was notified Dec. 23 that the Deflazacort she ordered for her 14-year-old son, Jeffery, was confiscated. The FDA released it a month later after she called U.S. Rep. Pete Hoekstra's office. [...]

Without the drug, Duchenne patients typically lose their ability to walk between the ages of 6 and 12, said Marianne Knue, a nurse practitioner who works with Wong. Since the disease also affects the heart and breathing muscles, they often die in their teens.

"But with Deflazacort, we are finding boys are able to ambulate much longer, well into their teens," Knue said, adding she has patients on the drug still living in their late 20s.

Knue said she has heard from several parents whose Deflazacort orders were impounded. She began calling Customs and the FDA.

"They wouldn't give me a straight answer," she said.

Ehlers had better luck. After a Press reporter called his Washington office this week, a staff member contacted the FDA on the Fehsenfelds' behalf.

Tyler Fehsenfeld is the grandson of Press Publisher Dan Gaydou. [...]
In the USA, a drug can be sold only if it is approved by the FDA.  The approval process is excruciatingly complex, and costs millions of dollars to do.  And the longer the clinical trials take, the more expensive it is.  Because MD develops so slowly, the trials for this drug, in this disease, would take many years.  In order for it to be worthwhile getting the approval, the potential profits from the drug sales would have to be greater that the profits that could be gotten merely by investing those same millions of dollars for the same number of years.  Evidently, the analysis of the potential profits failed that test, so approval was never sought here.

Now, obviously, nobody would have thought that this kind of outcome, bizarre and inhumane as it was, would come from the Global and Perpetual War on Terrorism.  Call it collateral damage.  Still, in any massive, complex undertaking, there are bound to be unanticipated consequences.  

The thing is, intercepting unapproved drugs really has nothing to do with terrorism.  In this case, the War on Terrorism was merely a cover for another part of the Administration's agenda.  The Department of Homeland Security surely has better things to do than confiscating some terminally-ill patients medication.  It is difficult to figure out exactly how this fits in with their mission.  Sure, stopping some overseas drug shipments might protect pharmaceutical industry profits, but that clearly does not apply here, even though it would be consistent with the mission of our current Administration.  Likewise, stopping shipments of abusable drugs would fit in with their puritanical notions, but that clearly does not apply in this case.   No, this case was the result of a mindless power struggle.  

All ethical questions eventually boil down to the central question: who gets to make the decision?  That is, who is in charge here?  Who has the power?  Clearly, the Administration has decided that it has the power.  Not the doctor.  Not the patient.  Rather, some nameless Customs agent who has no idea what the drug is for, or why it is being imported, or whose lives will be affected by the confiscation.  None of that matters.  The only thing that matters is that it is that the Administration has to be in control of all things, at all times.  The War on Terrorism is used to justify this power grab.

In this case, the patient was the grandson of a newspaper publisher.  He eventually got the drug, but you have to wonder what would have happened if he hadn't had such an influential relative, and a Congressman had not gotten involved.  

This case arose from a longstanding problem with the FDA approval process.  The thing is, the system has been broken for a long time, and it still is broken.  It's just that for decades, doctors and their patients acted in accordance with common sense.  The government, rather than fix the broken system, simply looked the other way.  That was a fair solution, until some ideologically-driven zealots decided that they would not look the other way.  Instead, they now insist that the rules be followed, even thought the rules don't make any sense.

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