First person stories: "Potti was my cancer doc." A Fact Checker exclusive report about people who have gone from "hope" to "hell."

Search words: Anil Potti Duke University

Two posts today; scroll down for Kunshan.

✔Good day, Fellow Dukies. Today, a Fact Checker exclusive. For the first time, three Potti patients speak out, revealing their stories from "hope" to "hell."

Loyal Readers will undoubtedly recall the Agenda I offered for the October meeting of the Trustees, starting with the dismissal of Dr. Anil Potti. At that point, an investigation by the Provost had established Potti had "issues of substantial concern" in his resume, which is to say big fat lies starting with a faked Rhodes Scholarship. Since the Administration saw fit to allow this clown to remain on our faculty, FC suggested the Trustees protect the school's integrity by directing President Brodhead to fire him.

We of course heard nothing in response.

With passage of two months, Potti's mentor Dr. Joseph Nevins concluded there was no validity to their joint work on ovarian cancer and asked that a medical journal article be retracted. Potti scrambled for the exit sign before more retractions are made.

The three patients who have now stepped forward establish the need for direct intervention by Trustees: nothing is being done to keep them informed, nothing to be kind to them, and nothing to help them. This failure is rupturing the good name of all of Duke Medicine. And as important as the wobbly university financial picture and deterioration of the situation in Kunshan are (discussed below), the Potti Mess is paramount.

All three patients tell the same story: they knew nothing of the Potti Mess until last week, just after Duke canceled Potti's clinical trials, which is to say experiments on human beings, and when a short telephone call from a Duke doctor informed them they'd "figure out what to do next" in their upcoming regular appointments.

People who had put their faith in this institution, in one of its leading cancer researchers, people who had been "elated" to be included in his trials, suddenly found themselves pummeled. Let's meet them:

✔ The first has substantial ties to the University family, but has not cleared FC to use her name. Her father was one of Duke's early employees, serving here for two generations and then retiring. The breast cancer patient, herself, formerly worked in medical research at Duke and is believed to be one of the first people enrolled in Potti's trials. Single, she now has to work two jobs despite her frail condition in order to meet her extensive medical bills.

And her brother, who contacted FC and has given consent for use of his name, Michael Allen of Wilmington, N.C., worked at Duke briefly before a 20-year career with the Military Police in the Marine Corps. He told FC "The sad part is that no one has reached out to the patients that are ultimately the most affected people of all." We will return to Mike Allen in a moment.

✔ The second patient is Wendy Cadwell of upstate New York, coming to Duke because of the revolutionary promise of Potti's "discovery" that DNA and RNA held secrets that would reveal what cancer treatment work best in specific individuals. This is the holy grail of genome research, translating laboratory findings into treatments that will help people.

Ironically her husband Bruce, who contacted Fact Checker, is an executive of a company that makes dummies for use in medical experiments and training. He told FC: "We found out about (the Potti mess) by a call from the Duke physician treating her. The call came last week, with the comment we wanted you to hear it from us first" and that "we can discuss at your next visit.... We have received zero in writing from Duke on the subject, just the call."

✔ The third patient contacted FC but has requested that no information be released to identify her. Her story was the most heart-wrenching, her words barely spoken between sobs.

Her mother had breast cancer attributed to a genetic mutation. So did her husband's mother, although the (BRCA1) gene was involved in one, the gene (BRCA2) in the other. She has fears for her two young daughters.

After routine exams turned up a tiny lump, her approach was quite intellectual: do I need more tests? What is the pathology report? What are the treatment options and side effects? And lastly, discussion of a clinical trial that her physician knew about when she asked if there were one treatment that he'd recommend over others."

Dr. Potti gave her hope. Emotional help at least. Encouragement.

He gave her medicine. He gave her bunk. "I was not responding as I had been told I would to the chemotherapy. My doctor seemed to be saying that even with the specific targeting, the chemotherapy I was getting was going to miss its mark sometimes, and I might be that unfortunate person."

"We did not see the stories in the paper about Dr Potti. The first I knew was a phone call.. just before Thanksgiving. There was no help, just a call that the trial I was in was being ended because it would not work out. The doctor seemed to be in a hurry. I did not know about the fraud and I wasn't told."

"It's hell. I would have been better off if my spirits had never been lifted, only to be dropped back because of some one's dishonesty.... How did he get away with it so long. People work with Potti; they must have known. All this is devastating to me and everyone around me."

✔✔ Here is the letter that Mike Allen sent President Brodhead on Tuesday:

"My sister was one of the first patients admitted to this study. She received a phone call from one of the Doctors in the program four nights ago apologizing for the news about Dr. Potti. The next day, we found out that the issue started last July.

"She never received an official notification from Duke, even though she has continued to be seen and treated there since July.

"I find it hard to believe that Dr. Potti credentials were not checked regardless of what the Duke President says.... My sister is devastated because of this mess. I believe that if any of you had a family member or friend go through this, you might look at it differently.

"Technically, I do not care about peer reviews, papers published, lab protocols, face value acceptance of resumes, or, passing the buck. What I do expect is that an institution such as Duke needs to step up.

"I have seen a ton of inter-net stories and after the fact comments concerning this issue with Doctor Potti, Duke University, Eli Lilly, Glaxosmithkline, (Dr. Potti received thousands of dollars numerous times to speak at functions held by these pharmaceutical companies on this genome project) in the last few days. The fingers are pointing everywhere. Yes, this could eventually affect the University, the Potti backers, the Federal grant money applied to the project, reputations of both the University and it's administration.

"I know from personal experience that 99.9% of the general employees and mid-management staff do a great job. Most of them care deeply about providing the best service possible to the public, students and faculty of the University. The sad part is that no one has reached out to the patients that are ultimately the most affected people of all.

"I do not have great assets or influence. I will however do everything in my power to ensure that ultimately someone at Duke is held responsible, and, that all of the patients that were boondoggled by this idiot are not forgotten.

"My sister was under the impression until a few days ago that she was fortunate to be included in this study, that her cancer was being aggressively treated based on the hype that the University and it's staff had given her. She has been in this program since the beginning. My sister has been fighting cancer for about six years total, had surgeries, chemo and everything else prescribed to her based on erroneous data.

"Cancer is a terrible disease and fighting it is hard enough. Add to that the emotional ups and downs that go with it, she did not need this to add to her struggle. Although I was not educated at Duke, I did receive education on the treatment of people. Duke University, this is totally unsatisfactory. Do you intend to right this wrong to the extent possible? Mike Allen"

✔ Today's Chronicle story states the Potti Mess is not on the "official agenda," but is going to come up as a sideshow discussion. That's not good enough.

And Brodhead says the Trustees will be given information that the rest of us cannot have. Yes, the same Uncle Dick who has sent his administrators out to proclaim Duke would be totally "transparent" and its officials "accountable" in the Potti mess, is now telling us there are secrets.

Tell me Dick, how do you decide what to tell us, and how do you decide what to keep secret.

As for the discussion of campus culture, some of the old timers on the board may recall when Uncle Terry wrote students about the Crazy language employed to taunt at basketball games, the response was immediate, with the next game cleaned up.

Dick, how was response to you? You said you'd support students who wanted change. How many have come forward in response to your appointing yourself their Uncle.

Meet me at K-Ville, Mr. President.

✔✔ The Fact Checker essay now continues into other items for the Trustee agenda this weekend.

The most critical element, in my evaluation, will be the briefing that Executive VP Trask gives to the budget committee. It does not concern the value of the endowment, which has occupied the spotlight since the meltdown two years ago, but rather what we are earning on the endowment.

The ten year average has been slipping and slipping -- but an incredible 58.2 percent return during the dot.com boom of 1999-2000 hid the bad news. This fall that aberration was dropped from the ten year average.

The new calculation: for the past decade, Duke has averaged 6.5 percent return on its money. We budgeted for 8.5 percent.

The 8.5 percent assumed we would spend 5.5 percent and salt away 3 percent to protect the endowment against long term erosion of purchasing power. The Trustees have been cheating --- robbing that portion that we are supposed to be saving and spending it; last year, the general endowment is being tapped not for 5.5 percent but 5.8 percent. And to sustain need-blind undergraduate admissions, we are tapping endowment for financial aid at 7.2 percent. This academic year's numbers are secret until next October.

In recent years, the endowment has given us as much as 19 percent of the annual operating income for the educational part of Duke. Even with the higher, irresponsible withdrawals, that has slipped, down to a projected 15 and 16 percent. If we must cut again because the sustained earnings are below expectations, the FC estimate is the endowment may only provide 9.8 percent, which would mean a real crimp on this place.

✔ Next, employee raises after a two year freeze. It is apparent to FC that any raise will add about $30 or $35 million to a projected deficit already running at around $35 million for next year. Do we do it or not? And if so, do all employees share equally, or do some of the higher paid employees have to sacrifice a bit more to accord lower level employees who are really stretched some relief.

✔ Finally, the Trustees have to get serious about a long range fund-raising drive. There are 36 colleges and universities currently seeking to raise $1 billion or more. The leader is Stanford at $4.3 billion, an amount just achieved. Columbia and Cornell are seeking $4 billion, with Columbia in strong position to succeed and Cornell less so by the deadline of Dec 31, 2011. The point is, our $300 million Financial Aid Initiative which started in January 2005 and ended in December 2008, is paltry, not in that league at all, and those other schools will be setting a pace we cannot keep up with.

The Trustees must realistically examine if Uncle Dick will be able to see us through all stages of the campaign. At age 63, will he be available to wait out the current hard times, begin a year long quiet campaign and then a five or six year long drive? Total time likely to be a decade.

✔ Unless I am missing something, the trustee discussion of "entrepreneurship" will be like their bus trip around the more pleasant sections of Durham: fiddling while Rome burns.

My analysis of the falling apart of our Kunshan deal appears as a comment linked to the separate Chronicle story on that.

Thank you for reading Fact Checker.

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