Two Cases of Bile (Andy Stephenson, FR and DU)

Stephenson, 43, who could pass for talk-show host Conan O'Brien's brother, became active on voting-rights issues in 2004 when he learned about the security problems with electronic voting. A resident of North Seattle, Stephenson frequented the left-wing Web site Democratic Underground (www.democraticunderground.com). This virtual community led him to Bev Harris of Black Box Voting (www.blackboxvoting.org), a Renton-based, muckraking activist dedicated to exposing the flaws in our nation's voting infrastructure (see "Black Box Backlash," March 10, 2004).

Stephenson brought an in-your-face activism to what had been a sleepy topicâ€”imagine a combination of ACT-UP and the League of Women Voters. He loved to go into elections officials' offices with his camcorder blazing, demanding information on obscure aspects of voting systems and software. In 2004, he ran for Washington Secretary of State as a Democrat against Republican incumbent Sam Reed, promising to clean up the election system, only to drop out before the filing deadline. That same year, he also began working with Harris on her national campaign to make voting more secure. In the process, he established his own national reputation as a voting-rights activist. Stephenson says eventually he and Harris had a falling out, and they are no longer on good terms.

None of these setbacks discouraged Stephenson from pursuing his goal of improving the nation's voting system. In January 2005, he went to Washington, D.C., as part of a grassroots lobbying effort on behalf of the Voting Integrity and Verification Act, sponsored by Republican Sen. John Ensign of Nevada. While in D.C., Stephenson became ill with what he assumed was food poisoning. He flew back to Seattle and noticed his skin had turned yellow. He went to the Country Doctor Community Health Clinic on Capitol Hill and received treatment from Karen Johnson, a nurse practitioner, who became his primary care provider.

Months of illness and diagnoses followed. In April, Johnson says the cause of his illness was determined. "He has pancreatic cancer," says Johnson. After researching the best options for his care, Stephenson chose to have his surgery performed at Johns Hopkins Hospital in Baltimore, Md. "It's the best of the best," says Johnson. "Andy does his research right."

There was one little problem: Stephenson didn't have health insurance or much money. He says the operation cost $50,000, and Hopkins demanded payment in full before the operation for an out-of-state, uninsured patient. (A Hopkins spokesperson would not elaborate on the bill, citing concern for patient confidentiality.)

Enter San Francisco's Elisabeth Ferrari. She has never met Stephenson in person, but had gotten to know him through postings on Democratic Underground. When she became aware of his need, she decided to raise as much money as she could through an Internet appeal. On Friday, April 28, she put out a fund-raising request on Democratic Underground. Other progressive outlets and activists including blogger/author William Rivers Pitt, Sirius Satellite radio's Thom Hartmann, Air America's Mike Malloy, and numerous Web sites picked up the fund-raising message. By Monday, May 9, she had raised all $50,000â€”most in small donations of $25 or less. "Democratic Underground has 60,000 subscribers," says Ferrari. "Andy has many, many friends there. He is a people magnet."

It was a remarkable achievement and a real testament to the power of Stephenson's activism. Country Doctor's Johnson confirms that Stephenson had a Whipple procedureâ€”sometimes called the "Olympics" of surgery because of its duration and difficultyâ€”at Johns Hopkins Hospital at the end of May. The surgeon removed a "golf-ball-sized tumor" from his pancreas, according to Johnson. Stephenson came back to Seattle to recover and prepare for his oncology treatment. Says Johnson, "He needs chemo and radiation probably."

Then came the backlash. The origins of the rumors are murky, but the basic theme was Stephenson was a scam artist who didn't have cancer. The rumor spread like a computer virus across the Internet and soon vitriolic postings were popping up all over the place.

The backlash falls into a couple of general categories. One group appears ideological in nature: Conservatives are attacking Stephenson because he's a progressive activist. "The right wing just went crazy," says Air America's Malloy. "This is one of the sickest things I've ever seen."

Another group appears to be people who are rightfully concerned about Internet scams.

Fred Grady, an accountant from Stanton, Neb., straddles both groups. He pays for a site called Scamdy.com that alleges Stephenson defrauded people. He learned of the controversy through a conservative Web site, Free Republic (www.freerepublic.com), that has an ongoing flame war with Democratic Underground. He is also very concerned that Stephenson's fund-raising was not done properly.

The fund-raising effort for Stephenson was the work of amateur activists, not professional charities. Spontaneous mutual aid has both good and bad characteristics. Stephenson's friends did not provide the kind of checks and balances that are associated with mainstream philanthropy. For instance, the money went directly to Stephensonâ€”there was no board of trustees controlling a third-party account and carefully documenting expenditures and donations.

Meanwhile, Stephenson was readmitted to the hospital because of postsurgical complications on Wednesday, June 22, and remained there at press time on Thursday, June 30. Stephenson says Medicaid is now covering him, so his medical bills are not a cause of concern.

I visited Stephenson in his hospital room at Virginia Mason Medical Center and listened to surgeons, a resident, and nurses discuss his cancer with him.

His spirits rise and fall on an hourly basis with the news of his condition. Through it all, he pushes his political issues, railing to me about decisions at the King County Elections Division.

His current diagnosis and treatment are unclear as the doctors struggle to figure out how best to help him. It is very clearly, however, a matter of life and death. "I am prepared for whatever the outcome is," Stephenson says. "I want to liveâ€”I don't want to dieâ€”but if not I've left a legacy."

Let us not forget what esteemed DUer William Rivers Pitt had to say about his "friend" Andy, not so long ago:

WilliamPitt Donating member (1000+ posts)
Tue May-17-05 01:02 PM
Original message
I'm pretty upset right now, and I need an explanation
Edited on Tue May-17-05 01:09 PM by WilliamPitt

As you all know, I was one of the people who took point on raising money for Andy. I wrote about it for truthout two or three times, and convinced the crew at Progressive Democrats of America as well that we needed to raise a call for help.

This is what I wrote for truthout on May 3rd:

"A few weeks ago, Andy was diagnosed with pancreatic cancer, one of the more dangerous varieties of the disease. His doctors told him he needed a Whipple procedure to get at the tumor, and only a few hospitals in America can perform this complicated procedure with the required competence. To compound the problem, Andy shares the plight of millions of others in our disgusting for-profit health care system and does not have health insurance."

This is what I wrote on the PDA blog, in our call for help, on April 29th:

"Several weeks ago, Andy was diagnosed with pancreatic cancer. He was recently told that he must undergo what is called a Whipple Procedure. This is a very serious surgery that few hospitals in America are skilled enough to perform well, and requires significant time for recovery. Fortunately, some friends managed to get Andy a slot at Johns Hopkins Medical Center, one of the premier hospitals for this type of procedure. He is slated for the procedure in the second week of May. Unfortunately, the hospital requires a $25,000 down-payment before they assent to doing the Whipple, and requires another $25,000 once the procedure is done. They are expecting the down-payment immediately."

The basis for this started way back in February. On the 29th, I posted this truthout blog entry, which I reposted here on the first and fifteenth of every month to help raise money:

"For the last several weeks, Andy has been suffering through a bout of Hepatitis. The word came down yesterday, however, that his situation is far more serious. 'I apparently have a tumor growing around the bile duct where it passes through my pancreas," he wrote. "The tissue sample was consistent with malignancy; it could be benign but I am planning for the worst.'"

Note that here it says 'tumor.' In subsequent weeks I was told that it was pancreatic cancer requiring a Whipple. Note also that the fundraising for Andy did not start a week or so ago, but started three months ago.

I woke up today to this DU thread, in which it was reported:

"fyi: it is a tumour on the duct, not the pancreas themselves. it looks to not have spread at all. it is not pancreatic cancer as others have posted, but if it was not caught early enough, it would have certainly spread there."

"...as others have posted..."

I am one of those "others" who posted it was pancreatic cancer, requiring a Whipple. I posted it here, on truthout, and on PDA. I did so because that is what I was told was the diagnosis, repeatedly, by both Andy and others.

Now that it turns out not to be the case, I have some questions:

1. If it was not the very serious pancreatic cancer, why did the surgery need to be done at Johns Hopkins?

2. If a Whipple was not required, why was $25,000 and then $50,000 needed for this surgery? Andy could have gotten this far-less-serious procedure done back in Seattle for a hell of a lot less money.

3. Why was I personally told this was pancreatic cancer? Why was I allowed to repeat this now-inaccurate diagnosis many times without anyone correcting me?

Understand: I believe Andy has a tumor of some kind, and this requires medical attention. I do not think this entire situation was fabricated from nothing.

But the 400 people who will come into this thread with "Andy doesn't need this stress" can hold your water. Andy is apparently a hell of a lot less ill than I and others were led to believe, and I need some answers. I put my reputation, the reputation of truthout, the reputation of PDA, and the reputations of all the people who work for those organizations on the line not once, not twice, but every day for weeks on this. I have a huge, huge responsibility here, and I am not going to just let that drop.

I have a personal reason for asking these questions over and above everything else. A great and good friend of PDA, activist Damu Smith, was recently diagnosed with advanced colon cancer. There is no ambiguity about this diagnosis. But because I was told Andy had pancreatic cancer requiring a $50,000 Whipple in the best hospital on the Eastern seaboard, I talked PDA into diverting time and resources towards Andy. This wound up diverting time and resources away from Damu.

I would like some answers. No wait and see. I have spent time with Andy, worked with him, thought I knew him well enough to vouch for him in a time of crisis. I am feeling personally betrayed right now, and furthermore I have put far more than my own feelings and standing on the line here.

If you think I'm a bastard for asking, I will live with that. But if this is not explained to a degree I find satisfactory, there is going to be hell to pay.

_________________________________________________________

WilliamPitt
Tue May-17-05 03:29 PM
Original message
'Need an explanation' Thread II

This is thread one, which is getting pretty huge:

http://www.democraticunderground.com/discuss/duboard.ph...

First of all, I'm not going to apologize for asking these questions. Something is not right about all this. Let's be clear:

The very-publicly-proclaimed diagnosis of pancreatic cancer, which I was personally told of, was changed to a thread-buried diagnosis of pancreatitis. The first is deadly dangerous, the second is very much not.

An enormous amount of money was raised in rapid fashion based on the aforementioned first diagnosis. For those who say 'Big deal' about the money raised, understand that it isn't about the money itself, nor is it about 'my ego.'

The organizations I work for, plus a whole bunch of organizations I have never heard of, took 'pancreatic cancer' and raised it to the rooftops. I am getting frightened PMs and emails from representatives of these organizations.

It isn't about the money. It is about the ability of these organizations to fundraise for important causes we all believe in. If this situation is not on the level, the ability for those organizations to do their good work is now imperiled. That hurts each and every one of us.

I believe Andy is sick, and I believe he needs treatment. I believe the compassion showed by DUers and others in rallying to his aid was and remains one of the most remarkable things I have ever seen.

But, based on the aforementioned concerns, I need to know why we were allowed to yell 'pancreatic cancer' and 'Whipple' and 'impending death' from the rooftops for weeks. I need to know why $50,000 was raised for a procedure at Johns Hopkins, when it appears now the diagnosed ailment could have been treated on the cheap in Seattle.

I need to know why I've been allowed to believe Andy was dying, why I was not told that this wasn't the case. Hell, a part of me is massively relieved...but the rest of me is badly hurt and deeply confused. I have called Andy my friend. Friends usually tell friends when they are no longer dying. I never heard that, and had to read it buried in a thread. If you need a personal impetus for my posts, you can have that.

This could all be a vast miscommunication. If so, if all this is on the up-and-up and it is just a matter of a bunch of wires getting crossed, then I will take whatever rap is coming for stirring up a hornet's nest. But I am not going to apologize. Anyone who thinks this is just about me does not appreciate the scope of the issue here. Hundreds of people, a bunch of important organizations and dozens of important causes are on the hook with this.

To answer the question of why I didn't talk to Andy, all I can say is this. I did talk to Andy. Dozens of times. It was from him first that I got the pancreatic cancer/Whipple/Johns Hopkins thing. It was from him first that I got the death-is-impending messages. Dozens of times. It was talking to Andy that started this, and right now, I am not at all comfortable going to Andy for confirmation of anything.

The pancreatic cancer diagnosis, the death-is-impending statements, the need to have all that money and the need for Johns Hopkins were all very publicly proclaimed. The hysteria to get it done was propelled in no small part by threads and posts from Andy himself. Therefore, a demand for an accounting of the vast discrepancies must also be public.

Consider this passage from the Seattle Weekly article:

"The origins of the rumors are murky, but the basic theme was Stephenson was a scam artist who didn't have cancer. The rumor spread like a computer virus across the Internet and soon vitriolic postings were popping up all over the place."

I think we may have a clue where that "rumor" began.

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	Andy Stephenson in happier, healthier days, March 2004 (Karen Steichen)

Two Cases of Bile

Voter activist Andy Stephenson's pancreatic cancer has generated both love and hate on the Internet.