June 23--Editor's note: This is Part II of a two-part series. Part I was published Sunday, June 22, in Foster's Sunday Citizen.
ROCHESTER -- After agreeing to sponsor 12-year-old McKenzie Lowe's treatment for terminal cancer, Dr. Terry Bennett of Rochester is having second thoughts. He still thinks there's a chance that the controversial, experimental and non-FDA approved "antineoplaston therapy" performed by Stanislaw Burzynski might work for Lowe, but he's not happy about the costs of the Burzynski Clinic's treatments.
DOES IT WORK?
Supporters claim Burzynski has found a cure for cancer but the medical establishment has been fighting to squelch it for more than three decades to protect conventional cancer treatment profits. They argue that because antineoplaston therapy patients don't purchase traditional medicines, there is little money to be made by anyone other than Burzynski.
"It's all big pharma and that's all there is to it," said LaFountain. "It's all money."
LaFountain has heard multiple accounts of children with his granddaughter's rare DIPG cancer who have survived longer than their prognosis, thanks to Burzynski's therapy
He says he heard of a little boy named Noah, who survived for 40 months with DIPG under Burzynski's care.
He tells about Jessica Ressel, whom he says was diagnosed with DIPG as a child, was treated by Burzynski, and grew up to have kids of her own.
And he cites the case of a nine-month-old infant in Missouri whose DIPG tumor shrunk 33 percent after antineoplaston therapy.
But none of these examples of the treatment's effectiveness have been subjected to scientific or clinical verification.
Skeptics say Burzynki's readily available success stories are the result of other variables, such as incorrect initial diagnoses, delayed chemotherapy responses, and naturally occurring shrinkage of tumors following treatment-induced swelling, according to a USA TODAY article published earlier this year.
Still, to people seeking help for a terminally ill loved one, these success stories serve as an undeniably impressive counterweight to the red flag that is Burzynski's battles with the FDA.
At the same time that LaFountain and the Lowe family were researching these Burzynski success stories, oncologists were telling them that accepted treatments had little chance of curing McKenzie's cancer.
The family began to see antineoplaston therapy treatments as a ray of hope and began petitioning the FDA to allow McKenzie to be treated by Burzynski.
They created a Change.org petition, which attracted nearly 70,000 signatures. A Facebook group was created. LaFountain took a trip to Washington, D.C., for a face-to-face meeting with the FDA. New Hampshire U.S. Sen. Kelly Ayotte wrote a 600-word letter on McKenzie's behalf to the FDA's commissioner.
The family's desperate quest to lobby the FDA attracted national media attention.
Finally in March of this year, after about four months of lobbying by McKenzie's family and supporters, the FDA granted her a compassionate use exception with one condition: A doctor other than Burzynski needed to oversee McKenzie's antineoplaston therapy treatment.
That's when Rochester's Bennett stepped up. He figured there was no harm letting a young girl diagnosed with a terminal illness try for a cure, even if the therapy was controversial.
"It doesn't seem like rocket science," Bennett said. "It's a 12-year-old girl. She's beautiful. She's cute. It struck me as a no-brainier. 'Please how can I help?' "
But there was something Bennett didn't know.
Bennett's decision was based, in part, on a newspaper article that said Burzynski had agreed to donate the medicine required for McKenzie's treatment. But what Bennett didn't know is that Burzynki planned to charge the family for the clinical costs associated with the therapy.
LaFountain said the first month's bill is expected to be $28,000. Every month after that is expected to cost $16,000. The treatment usually lasts eight to 12 months.
And health insurance won't cover a dime of it.
The Lowe family has started a GoFundMe.org (GoFundMe.com/9a4geo) account, which raised over $5,800 as of June 17. And they set up an account with the Digital Federal Credit Union in Hudson that also has been taking donations.
On June 24, a fundraiser will take place at Kendall Pond Pizza from 5 to 8 p.m. And on July 12, a silent auction and raffle fundraiser will take place at the Hudson Fish and Game Club from 2 p.m. to 10 p.m
The family is relying completely on these fundraisers to pay for McKenzie's therapy.
Such fundraising apparently is common practice for Burzynski patients.
In 2012, Brylin Sanders' family raised tens of thousands of dollars for treatment. Chiane Cloete's family raised over $50,000 last year. The family of 3-year-old New Zealander Jesse Bessant raised over $70,000. And Canadian mother Nola Bishop's family started a fundraiser last year hoping to raise $100,000 for Burzynski's treatment.
Bennett said he will not withdraw his sponsorship of McKenzie, despite the cost of treatment. But he's extremely upset over what he calls a very disturbing phone call that he received on May 28.
Bennett says a representative of the Burzynski Clinic called him on that date seeking payment for the first month of McKenzie's therapy. Prior to that, Bennett, who is donating his services, thought Burzynski was doing the same.
Instead, said Bennett, "I'm supposed to be the bag man for all of this. They want me to collect the 30 grand for the family and send it to Burzynski."
But he continues to support the initiative to get McKenzie treatment because he believes there is a possibility that Burzynski's therapy works.
"If I didn't think there was some evidence that it worked, I would not get involved in this," said Bennett. "There is evidence of saves in the past, and we are hoping to get another one. If we do, home run!"
LaFountain agrees. "It is expensive," he said, "but you just can't place a price on a child's life."
The Burzynski clinic did not respond to multiple requests for a detailed breakdown of the costs of McKenzie's treatment.
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