A crowd of about 70 people led by prostate cancer advocates marched and rallied in Washington, D.C. on June 4 to call on the FDA to Approve Provenge Now.

Thomas Farrington of Prostate Health Education Network addressed the group.

Raise a Voice organizer Jan Manarite introduced speakers including Tom Farrington and Dr. Mark Moyad.

The petition campaign was organized by malecare.com.

Visit Joel Nowak’s advancedprostatecancer.net blog,
Provenge Advocacy Hits the News

Organizer Jan Manarite receives a hug

from her son, who carried the message

"Help My Dad Live"

On June 5, campaigners met with FDA director Andrew von Eschenbach.

View ABC-TV video here. See photos of the rally (by brad.wick) and video of Mark Moyad’s speech.

Oncologist Dr. Howard I. Scher has received a death threat for opposing immediate FDA approval of Dendreon’s Provenge therapeutic vaccine for prostate cancer. Another oncologist who opposes approval of Provenge without completion of an ongoing clinical trial, Dr. Maha Hussain, has received unspecified threats.
(full story…)

Charles (Chuck) Maack, a prostate cancer survivor and Program Director, for Wichita, Kansas Chapter Us TOO Intl., Inc., will be attending a meeting in Atlanta this September regarding “IMPaCT” (Innovative Minds in Prostate Cancer Today). Chuck is also spreading the word about the PCRI conference in Los Angeles from September 7-9. Chuck writes:

IMPaCT is a gathering of over 600 research scientists who have received Department of Defense funding for prostate cancer research in the past. It appears this gathering will be to brainstorm innovative ideas for future prostate cancer research.

(full story…)

Jan Manarite of Raise a Voice Campaign writes:

Prostate cancer patients have been watching for the prostate cancer/Provenge story on ABC World News with Charles Gibson. I just got a call from Dr Moyad that ABC called the prostate cancer patient who was interviewed for that story, and informed him that it would air Monday night, June 4th. This appears to be a commitment. Did ABC wait for our June 4th DC rally?

(full story…)

Jim Kiefert, chair of the executive committee of US Too International prostate cancer support group, interviewed yesterday at the American Urological Association (AUA)’s annual meeting by CNBC’s pharmaceuticals reporter Mike Huckman, said some members of his support group wept when they heard FDA had delayed approval of Dendreon’s vaccine for advanced prostate cancer, Provenge. The interview with Kiefert is part of the video at this CNBC link. Meanwhile advocates are signing a petition and plan to demonstrate in Washington D.C. and hope to meet with the head of the FDA.
(full story…)

A site to advocate for “Provenge Now!” has been launched. Provenge is Dendreon’s immunotherapy for prostate cancer, which was approved 17-0 for safety and 13-4 for efficacy by an FDA Advisory Committee vote March 29th this year. On May 9, Dendreon announced that FDA has sent them a “Complete Response Letter,” commonly called an approvable letter, requesting more data. Dendreon CEO Mitchell Gold said “The FDA has requested additional clinical data in support of the efficacy claim.”
(full story…)

Dendreon’s CEO Mitchell Gold traded some of his stock during the high period following the FDA Advisory panel vote on his company’s prostate cancer immunotherapy sipuleucal-T (Provenge). Gold told the WSJ Health blog that he sold “less than 20%” of his holdings in the company following the upbeat FDA advisory panel vote. “It’s all public,” he said, without elaborating.

More of a surprise is to see that Steve Fleischmann, one the patients who spoke passionately to the FDA committee, did the same:

Before the stock tanked some savvy investors cashed in. One of them was businessman Steve Fleischmann, who became a prostate cancer patient, activist and Dendreon shareholder all in the same year. “I bought Dendreon in 2003; I’ve owned it for years,” he told the Health Blog. But he shed some of his shares after Dendreon surged at the end of March on a panel of experts’ recommendation that FDA approve the vaccine. He declined to quantify his holdings or profits, but said, “I wanted to take some of my chips off the table so I wasn’t so invested. It’s natural.”

Still, Fleischmann decried the protracted tug of war among investors in the company: “The sad thing is that Dendreon became more of a stock play than a humanistic play – a game between longs and shorts – and all about padding people’s pockets.”

Wall Street Journal Health Blog

Raise a Voice, an advocacy group for advanced prostate cancer patients, which is calling for patient access to drugs that have passed through Phase I trials, has written a thank you letter to the FDA Advisory Committee on Dendreon’s sipuleucel-T (Provenge). The letter is signed by 19 prostate cancer advocacy groups including US Too International and National Prostate Cancer Coalition.
(full story…)

Unique in Canada, offers right information at right time to men diagnosed with disease
ANDREA MACRAE
The Guardian

The day Norm Fotheringham got his diagnosis he knew only one thing about prostate cancer: that it was deadly.

“My brother was dying of prostate cancer. I had my operation in April and he died in June of that same year. I wouldn’t have had my prostate checked without him. So he basically saved my life.”

That was in 1998 in Ontario. Now Fotheringham helps prostate cancer patients on P.E.I. as chairman of the Prostate Cancer Support Group.

It’s his way of giving something back, he says.
Full story, The Guardian Charlottetown, PEI, Canada

“It was a great shame,” a correspondent writes, “that the lead investigator for the first Provenge pivotal trial, Dr. Eric Small, had his flight cancelled by his airline so he was not able to join the panel in time. Dr. David Penson, however, has been an investigator on all three clinical trials for Provenge. During the public commentary section, he clearly articulated how his patients benefited. Dr. Penson came to the CTGT public commentary meeting of his own accord and did not discuss his testimony with the sponsor.”
(full story…)

Dendreon’s Provenge vaccine now awaits the F. D. A.’s decision following the advisory panel hearing in Washington D. C. March 29.

Provenge is intended as the first treatment of its kind to stimulate a patient’s own immune system against prostate cancer. If it’s approved, analysts say it could generate up to $1 billion in annual sales.

Provenge is made for each individual patient. Scientists take the patient’s own white blood cells, mix them with a genetically engineered protein and reintroduce them into the patient. Specifically, blood is drawn from the patient and dendritic cells are extracted from the blood and loaded in the laboratory with a recombinant fusion protein consisting of prostatic acid phosphatase (PAP) linked to granulocyte-macrophage colony-stimulating factor (GMCSF). This product is infused into the source patient at repeatable intervals; during trials, patients received uo to 3 infusions of vaccine.

In two studies, as we reported March 28 in covering F. D. A.’s questions to its advisory panel, the company failed to demonstrate the product could slow the
(full story…)

Us TOO to host FREE Tele-Conference Call on Intimacy & Prostate Cancer

The Us TOO International Companions & Family Advisory panel will
host the FREE, nationwide teleconference program, “Intimacy and
Prostate Cancer.” This FREE program will take place on February 13th;
9pm ET, 8pm CT, 7pm MT, 6pm PT.

RSVP: This conference will fill quickly, so RSVP today by
contacting Dan Reed at [email protected], or call (800) 808-7966.
You may remain anonymous when you RSVP if you choose, but please
RSVP so we can reserve ample space for all who wish to
participate.
(full story…)

Sex discrimination is being claimed over the B.C. government’s refusal to fund a test to screen men for prostate cancer.

A B.C. human rights tribunal begins today with Victoria lawyer Laurie Armstrong claiming it’s discriminatory to force men like him to pay for the PSA test, a screening test for prostate cancer, when women aren’t charged for Pap smears or mammograms. Full Story Richard Watts, Times Colonist Tuesday, December 12, 2006

Mustaches raised $700,000 dollars to fight prostate cancer in New Zealand this past November, dubbed Movember (reflecting Anglo spelling moustache). The Movember event now takes place in Australia, New Zealand, UK and other spots. For New Zealand info visit the main NZ Movember site and Thank you page.

The 11,000 men participating in this charity event “began with a clean shave on November 1st, then competed for sponsorship dollars and their place in a complex hirsute hierarchy at the end of the month,” reports stuff.co.nz

“Wives and girlfriends complained,” and co-workers scoffed but the annual event raised awareness as well as raising more than $700,000 for the Prostate Cancer Foundation of New Zealand. NZ military grew mustaches as well as individual sympathizers.

This year the Prostate Cancer foundation of Australia split proceeds from theirMovember event mainly between:

Prostate cancer because every year in Australia 2,700 men die of prostate cancer – more than the number of women who die from breast cancer.

Male depression because 1 in 6 men are affected by depression… Most don’t seek help. Untreated depression is a leading risk factor for suicide.

This year’s International Man of Movember 2006, looking very like Borat, is Dean Borret of Brisbane.

Suzanne Carver and Tricia of coastal Maine are going to walk 26.2 miles this September in The Boston Marathon® Jimmy Fund Walk to raise money for the Jimmy Fund and Dana-Farber Cancer Institute. Suzanne writes:

I am doing this marathon in honor of my friend Bill Dyer who is a very special light in this world. His journey with cancer has been nine plus years and counting and he is the living meaning of love and goodness and simply being in his presence reminds me of all that is pure and divine about the human spirit. Please give in honor of Bill and countless others like him. Give as though your loved one’s life depended on it.

You give the money and we’ll pound the pavement!! If I can walk 26.2 miles, surely you can miss a coffee or two for a few weeks, right?

Please visit Suzanne Carver’s Personal Fundraising Page to donate!!

Bill’s wife, Wendy, says they will be posting Bill’s picture on the site. “They are also going to have T-shirts made for the walk with Bill’s picture on the front,” Wendy said.

If you have followed Bill and Wendy’s story from afar since Bill was diagnosed in 1996 or have received Wendy’s help, encouragement, inspiration and support via the many prostate cancer mailing groups in which she takes an active role, this is your chance to give in Bill’s honor while donating to improve cancer care for all.

Canadian firefighter and prostate cancer warrior John Wagontall has cycled a long way since he set out from Victoria, BC in May of 2006 heading for St. John’s, NL (see John Wagontall’s Cycle Across Canada Click the link then look downpage).

A few days ago, June 20, John reached Sudbury Ontario.

Lethbridge firefighter and prostate cancer warrior cyclist John Wagontall (center) had worked up an appetite before he dropped into Sudbury’s number one fire station for spaghetti June 20.

Averaging 150 kilometers a day, Wagontall is cycling across the country from firehouse to firehouse, in a personal tour de force, to raise awareness for prostate cancer.

The 47-year-old spent part of the day on the road, cycling 196 kilometers from Thunder Bay to the Big Nickel, and spent the rest of it talking with people about his personal struggle with prostate cancer.

Diagnosed in 2004, Wagontall’s story does not come with a happy ending.

“I’m dying of prostrate cancer and it’s a needless death,” Wagontall said frankly. “My doctor’s tell me I won’t live to see 55.”

“Prostate cancer has a 95 percent cure rate, yet only three percent of men are being cured. Men need to know they have to be tested in order to catch it early on so they can be treated. In my case, the cancer has already spread to my bladder and lymph system.”
(full story…)

An Early Stretch to Focus on Cancer
By VINCENT M. MALLOZZI
Major League Baseball will announce today that in its effort to raise awareness of prostate cancer, all traditional seventh-inning activities scheduled for Father’s Day will instead be done during the sixth inning, symbolizing the fact that one in every six American men will ultimately develop prostate cancer. . . .
(full story…)

Wary of Backlash, Cancer-Drug Makers Weigh Price Limits
Wall Street Journal
By JOHN CARREYROU and GEETA ANAND
May 10, 2006; Page B1
As high prices of cancer drugs spark the kind of patient outrage that high AIDS-drug prices unleashed more than a decade ago, a few pharmaceutical and biotech companies are weighing caps and other cost-containment measures, before the outcry turns into a public-relations crisis for the industry.

ImClone Systems Inc. and Bristol-Myers Squibb Co., co-marketers of Erbitux, one of the most expensive cancer drugs on the market, are “well down the road” toward establishing an annual patient price cap for the drug if its market expands, says Ronald Martell, senior vice president of commercial operations at ImClone. Such a program would set an annual ceiling on individual patients’ drug-treatment costs, beyond which companies would provide the drug free of charge or at a steep discount. Genentech Corp., of South San Francisco, Calif., is considering cost-containing alternatives for Avastin, which is currently approved for treatment of early-stage colorectal cancer.
While the backlash against cancer-drug prices is nowhere near as big as the one against AIDS-drug prices, ImClone’s Mr. Martell says the industry should make changes in its policies now. “Otherwise, at some point there will be a confluence of events — social pressure, volume of dollars — and something will have to give,” he warns.

Erbitux, priced at $10,000 a month, is currently approved only for patients with metastatic colorectal cancer who have failed a certain kind of chemotherapy. Their average total cost of treatment is currently about $40,000: In most of these patients, the illness has advanced to the point where they are only a few months from death.

But later this year, ImClone and Bristol-Myers, both based in New York, hope to win Food and Drug Administration approval to market Erbitux for patients in earlier stages of colorectal cancer, who have longer life expectancies. Approval for these patients would result in a sharp rise in the average cost of treatment with Erbitux — and a sharp rise in profits.

In the case of Genentech’s Avastin, the current cost of treatment — $4,400 a month, or $52,000 a year — could rise sharply if the FDA approves the drug as a treatment — at double the dose — to treat lung cancer and breast cancer. Such approvals, expected over the next year, could result in thousands of new patients paying, at current prices, more than $100,000 a year to take Avastin.

The Medicare Modernization Act of 2003, which extended prescription-drug benefits to the elderly, has put financial pressure on elderly cancer patients, the age group with the highest rates of the disease. Under the old system, cancer patients receiving drugs intravenously at a hospital in practice often weren’t forced to make their 20% co-payment: The hospital would bill Medicare directly, and the Medicare reimbursement price — as much as 25% above the drugs’ market price — provided a sufficient profit cushion so that hospitals often didn’t collect co-payments.

But now, Medicare reimbursements are in line with drugs’ actual selling prices, and physicians and hospitals can no longer afford to forgive co-payments. As a result, many elderly cancer patients without supplemental prescription-drug insurance end up on the hook for thousands of dollars.

“There’s a groundswell of patients who are outraged,” says Jerry Flanagan, health-care policy director for the Foundation for Taxpayer & Consumer Rights, a Los Angeles watchdog group.

Full story at Wall Street Journal: Wary of Backlash, Cancer-Drug Makers Weigh Price Limits
By JOHN CARREYROU and GEETA ANAND
May 10, 2006; Page B1 May require subscription or initial ad view.

Nicholas DeWolf, inventor, computer expert and philosopher, died Sunday April 12 in a hospital in Aspen, CO age 77 of complications from a stroke and prostate cancer.

Chad Abraham in the Aspen Times, April 17 called Nicholas DeWolf “an extraordinary and exuberant spirit of Aspen whose work in the semiconductor field paved the way for today’s computer industry.”

“He was an engineer, he emphasized in Greg Poschman’s induction video for the Aspen Hall of Fame,” Abraham goes on, “not a scientist.”

“But he was also a husband, father, actor, inventor, photographer and a sensualist; an animal lover who was loved by animals, a provocateur, skier, and an eccentric whose office suffered, or benefited from, legendary disorganization.”

“DeWolf, those close to him say, fought hard for Aspen’s preservation as the perfect world for providing absolute freedom of the discussion of ideas and the ability to mingle across classes, dishwashers to debutantes, Hollywood stars to ski bums.”

Nick DeWolf was diagnosed with prostate cancer in 1996. On a website he created that year, PROSTATE CANCER meets PROTON BEAM ! A Patient’s Experiences, he wrote: “Hmm… Age 68, PSA=12, Gleason Score=7, Stage B1. Determined not to die of Prostate cancer, hoping to preserve sexuality. What to do, where to go?? ”

After researching all treatments available at the time, talking to doctors and to patients and considering effects of hormonal blockade on male sexuality, DeWolf opted for Proton beam radiation at Loma Linda.

Michael Bard, who told us about Nick’s death yesterday, wrote:

“I was deeply saddened to learn of Nick DeWolf’s passing on April 12th. Nick and I never met, but we chatted many times. When I was first diagnosed in 1999, I wrote to Nick and he immediately called me. We had several marathon conversations and he never was too busy to share his compassion and his knowledge.

His joie de vie was infectious. I remember his excitement over recording the Vietnamese hill tribes. Even when he had a recurrence, he continued to support Proton Beam and LLUMC. I put him in touch with men who were exploring salvage options and never dreamed his disease would progress so aggressively.

The Cap community is better for his presence. In the end, none of us can have a better tribute than that they helped their fellow man. I will miss him.”

Links
Nick DeWolf’s websites and photography — Images by Nick DeWolf
Press source including the photo
Computer pioneer dies at 77: Nick DeWolf’s genius illuminated, soaked Aspen. By Chad Abraham, Aspen Times, April 17, 2006

John Wagontall, a Lethbridge, Alberta firefighter, was diagnosed with advanced prostate cancer at 46 years old. In his blog John writes:

I listened to the Urologist tell me the facts and the possible treatments. More tests were scheduled to see if the cancer was contained or if it had spread. I went to see another urologist and a couple of oncologists. It didn’t matter who I saw, they all painted a pretty grave picture of where I was headed. Final diagnoses, adenocarcinoma T4 Gleason 8 (4+4) PSA – 105.5 with a life expectancy of 5 to 7 years.
…. Treatment consisted of Hormone Deprivation Therapy and then 36 external beam radiation treatments in Calgary Alberta at the Tom Baker Cancer Center.

… Throughout the months since diagnoses and treatment, the one thing on my mind most is the fact that men need to be educated on this disease. We must talk openly about it. I have been as open and honest as I can be with the firefighters I work with and anyone else who will listen. They have been open to the information I have passed to them.

I have been an avid cyclist for many years…. In fact, I have ridden a bike to work for many years, rather than driving no matter what the weather. I have ridden in a few team triathlons and a duathlon. I’ve ridden with my sons. It is something I truly enjoy and was unable to do for a few months because of the cancer.

Because I enjoy biking and want to make others aware of prostate cancer, I have decided to do a cross Canada bike ride. The plans are to start in Victoria, BC in May of 2006 and finish in St. John’s, NL hopefully by the end of July 2006. I plan on stopping along the way to visit firefighters and others to share my story and hopefully promote a little more awareness. I am also hoping to raise money for the Canadian Cancer Society ,the Lance Armstrong Foundation and The Prostate Center. These organizations have been very helpful since my diagnoses.

Visit John’s blog and take a good look around. Find out how you can help support his ride across Canada.
http://www.cycleforlife.ca/index.php