Derek T. first appeared in the press in June 1993. At the time, he was suffering from a brain tumor and the community was rallying around him (and 2 other kids with cancer) to raise money for the Children’s Wish Foundation. Derek was 6 years old and had been taken to Sea World by the charity. According to his mother, who appeared in the Hamilton Spectator:
Derek’s mother […] was also overwhelmed.
“I just can’t believe how much the community is pulling for us,” she said. “People really didn’t know what to do, so they did this. It has helped the family and I think the trip to Sea World helped Derek’s health.”
Derek’s journey was chronicled by the Hamilton Spectator, so we have a pretty good record of his progress. At the time of the fundraiser for the Children’s Wish Foundation, according to an article that appeared in April of 1994, his tumor was shrinking thanks to radiation treatment. He went back to school in September but, then we hear in the issue from April 18:
But, around Christmas, his flu-like symptoms turned out to be the tumor growing again and pressing on his brain.
‘It happened very fast,’ said his aunt.
Before long, he was confined to a wheelchair. As the condition overtook him, Derek could only shake his head and move his hands to communicate.
That’s when the [family] re-mortgaged their home and decided to ignore the advice of caregivers at McMaster University Medical Centre.
They were on their way to Houston, to the Burzynski Clinic, where they have used an unproven experimental chemotherapy for nearly 40 years under the guise of clinical with no good evidence for efficacy. The Spectator is way out of its league and has basically no idea what the treatment entails as we see in April:
In Houston, he hopes to receive a new treatment involving injections of plasmalike antineoplaston cells through the chest catheter.
No, not even close. If only the Spectator had reviewed the 1982 report by Canadian physicians Blackstein and Bergsagel commissioned by the Ministry of Health in Ontario, which had some damning revelations:
We were left with the impression that either [Dr. Burzynski] knows very little about cancer and the response of different tumors to radiation and hormonal measures, or else he thinks that we are very stupid, and he has tried to hoodwink us. As we look back over the cases were were shown, we are left with the impression that the only patients who are still alive either had slowly growing tumors, or had received effective treatment before being referred to Houston.
The 1982 Canadian report concluded:
After reviewing 20 case reports, selected by Dr. Burzynski as his best examples of clear cut responses to Antineoplastons we were unable to identify a single case in which therapeutic benefit could be attributed to Antineoplaston.
And even more from the 1982 Canadian report:
We believe that it is unethical to administer unproven agents such as Antineoplastons to patients without satisfying the requirements of the FDA and an ethics committee, that the minimum standards for human experimentation are being met. We also believe that it is immoral to charge patients for this unproven, experimental treatment.
So, in April 1994, the family, facing the progressing disease ends up in Houston. Instantly, unnecessary life-threatening complications arise just trying to get Derek on treatment:
His parents […] and his five-year old sister […] flew to Texas last Thursday, when Derek was admitted to hospital for insertion of a catheter in his chest through which the new drug will be pumped. ‘They had trouble inserting the catheter because they couldn’t find a vein, then when they got him stabilized … his heart went wild and started beating 200 times a minute,’ said his aunt […] in a telephone interview yesterday. ‘He has a very low blood count and when your blood count is down you don’t heal properly,’ she added. ‘We’ve been told the next 24 hours are going to be critical.’ The child has already received one blood transfusion and may need another, she said
The doctors objected to antineoplastons for a reason. At the same time, the family is feeling the pinch:
Money, she added, is becoming a major worry for the family. ‘This hospital stay isn’t something we’d planned on,’ she said. ‘OHIP doesn’t cover any of this because it’s an experimental treatment and you pay for your Kleenex and bedpans and everything.’
This is the case at Burzynski’s clinic, though it would probably not be elsewhere. Usually, patients receive medical care in exchange for being on a clinical trials, because the developers intend to make their money when the drug goes to market. R&D is an investment in real drug trials. At the Burzynski Clinic, patients pay dearly to receive experimental treatment.
When Derek was let out of the hospital, he moved into a motel, where they hoped treatment would begin:
‘They figured on Wednesday Derek was stable enough that they could start the treatments, so what’s going to happen is that they’ll set up all the medical equipment they need in the motel so they can do the treatments there rather than having to get Derek to the clinic every day,’ said [Derek’s aunt]. ‘I think someone will be coming over every day to spend a couple of hours to get this treatment into him. ‘We’re told they may be able to come home in two to three weeks, but it could be four to six weeks before they start to see any effect from the treatments,’ she added.
The kid’s too sick to go to the Clinic.
Two days later, we hear:
They have been told the treatments could last six months, or continue indefinitely at a cost of between $3,000 and $10,000 a month. Yesterday, Derek’s aunt […] said: ‘Yesterday was a good day for him, his spirits are up and he seems to be gaining strength. ‘What they’re going to do is continue the treatments for 10 to 14 days and then see about letting him come home. His parents seem to feel better now that the treatments have started. They seem to be a little more up now.’
All the while the community is rallying around Derek to raise money for Burzynski. A few days later, Derek’s uncle returns home and talks to the press:
‘I think our little guy’s getting better,’ [Derek’s uncle] said yesterday afternoon. ‘They’re saying that if he makes it through the next month his chances will improve fantastically.’ ‘I think the next two weeks are going to tell it all,’ he added.
The child is in a pretty horrible state, almost locked in, it seems:
‘Now he’s a lot more alert and staying awake a lot longer,’ he said. ‘They’ve worked out a little sign language to communicate with Derek he looks up for yes and closes his eyes for no.
And in this interview we get a sense of the power of testimonials, which are nearly worthless as evidence of a treatment’s efficacy:
In the weeks before Derek’s parents […] decided to make one last attempt to save their son’s life, they contacted several former and current patients of the clinic to ease their natural suspicion. ‘We had a lot of suspicion before we went down,’ the uncle said. ‘We were asking ourselves should we go or should we just stay here and let Derek die in peace.’ That’s when they started talking to former patients, gathering uniform reports of miracle cures.
‘I sat there on the phone in tears talking to these people and then told John and Brenda they had to make a try,’ he said. ‘Everyone we talked to had a different story, but it was all one miracle after another.’
And that’s the hook. These patients stories are deceptive, and it’s not because the patients are lying (though they are almost certainly wrong in every case). USA Today reporter Liz Szabo documented some of the problems and practices at the Burzynski Clinic that explain the apparent “miracles” without crediting Burzynski.
On May 6, we hear that money has been pouring in for Burzynski on the back of this kid’s suffering. The uncle seems to be hearing that things are going well:
According to Derek’s uncle […], the child is improving every day. ‘He’s starting to move his arms and say things like ‘Mom’ and ‘No.” ‘They’re quite enthusiastic at the clinic about the progress he’s making. ‘Everything sounds really good so far.’
That may sound like a gain, but it also sounds… really, really slight. Almost imperceptible, and you know that the family is scanning and interpreting every grunt and motion as a reflection of what is going on with the tumor. Except the next week, on the 14th, we hear:
The Winona boy, 6, who is undergoing an experimental treatment for the brain stem cancer that threatens his life, was taken to hospital earlier this week for treatment of fatigue and because he wasn’t eating. Derek’s uncle […] said the hospital treatment was needed because the megadoses of the serum he’s receiving frequently left him too tired to eat properly. After two days, however, he was returned to the motel room where he’s staying with his parents. ‘He had a bit of a turn for the worse, but now he’s doing fine again.’
So, by the family’s account, this was a life-threatening side effect of the treatment.
But the fundraising for Burzynski has gone well. By May 25th, some $40,000 in donations have arrived for the treatment. The family is still in Houston. I wonder if he is too sick to move:
In a telephone interview yesterday, Derek’s mother said the child remains weak from the constant flow of drugs he is receiving, but she is learning to take great pleasure in small victories.
“I got really excited yesterday because I heard him laugh a little while he was watching cartoons,” she said. “That was the first time I’d heard him laugh in two months.”
When Derek was discharged from a Hamilton hospital two months ago, his parents were told there was little hope he would survive. That’s when they decided to make a last-ditch stand against the disease.
“When he got out of the hospital in Hamilton, they said his time was limited, but now we’ve celebrated another birthday and that’s got to say something,” [his mom] said. “If you saw him in the hospital when he could barely move his arms, you’d know just how far he’s come.”
Honestly, I’d be interested in seeing what type of anti-inflammatory steroid dose the kid is on. As reported by USA Today, according to an FDA warning letter from April of 2013:
In a written response to FDA inspections sent to the agency in April, Burzynski had argued that patients with brain tumors often need anti-inflammatory drugs, called corticosteroids, to restore normal levels in the body. The FDA did not accept this explanation, however, noting that Burzynski had patients on steroid doses that were five to 64 times higher than the levels that doctors would expect patients to need. [emphasis added]
This does throw into question, as the FDA noted, the reliability of Burzynski’s results. And in reality, things are not going well, as we hear on the 28th of May:
A thousand miles from home, in a tiny motel room on the outskirts of Houston, Tex., [Derek’s parents] pray for a miracle.
On the bed in front of them lies their seven-year-old son Derek, his mouth hanging open, his pale body limp. A tumor the size of a golf ball is pressing on the stem of his brain, paralyzing most of his body and causing pain no child should suffer.
The youngster can’t move his limbs, he can’t talk, and it’s a struggle to even open his eyes. But he is alive.
“As a parent, you can’t just sit there and watch your son die,” [Derek’s mom] says. “You do everything in your power to save his life. You try anything and see anyone who might be able to help because that’s all you can do. You are so desperate.”
Yes. And that’s why the FDA and the TMB need to step up and stop playing ball with predatory alt med peddlers. In the same article, we see the family is having doubts:
At the moment, the [family is] not convinced Dr. Burzynski is Derek’s miracle maker.
It’s costing the [family] as much as $1,000 a day for doctors’ visits, equipment, emergency trips to the hospital, and to keep up the steady flow of Dr. Burzynski’s concoction for their son.
“Sometimes I wonder if maybe we should just hop on a plane and go home,” [Derek’s father] says. “But then the next day we’ll see an improvement and think, this is his only chance.”
And at this point, improvement is indistinguishable from just not getting worse. In some ways, this case is reminiscent of the course of Chase S.’s story. Chase was essentially lying in state for months in his parents’ living room, while the family insisted that he was improving.
The family has been in Houston much longer than the usual 3 weeks, and they are thinking about trying to get Derek home in early June, as we hear on the 4th:
While there’s no evidence yet to show the treatment is working with Derek, [his dad] said they are eager to come home. “We’ve been here quite a while now and we are comfortable administering the medication so we could do all that at home,” he said in an interview yesterday.
There were plans to do an MRI scan on Derek to determine if the brain tumor is shrinking but he’s been too weak the last 10 days to undergo the procedure.
He’s been battling fluid in the lungs and cold-like symptoms; yesterday was his first day back on solid foods in a week.
The father says that Derek is better than when he came down, but how can that be? They plan to return to Canada with a 2-month supply of antineoplastons.
Once the family returns, the paper seems to give us a more frank assessment of Derek’s lack of progress:
“His eyes are much more alert and although he can’t talk, he’s able to communicate with us,” [Derek’s mom] said.
They don’t know for sure if the experimental treatment he received at the clinic - called antineoplastons - has shrunk the boy’s tumor; he has been too weak to undergo the scan that would determine its size.
But they believe the medication has at least stopped the tumor’s growth, based more on what they saw at the clinic than improvements in his physical condition.
“We really truly believe in that clinic,” Derek’s mother said. “We saw so many miracles down there, people coming in real bad shape and walking out of there. We are believers.”
She said seeing those people get better helped keep the two of them going during times when Derek was not doing so well.
“It made us strong and gave us hope,” she said.
“We have no regrets about going down. We’re glad we went and we hope everything works out,” [Derek’s dad] added.
If there is one regret, it’s that they didn’t discover the clinic earlier, when the tumor was smaller, [Derek’s mom] said.
The statement that they “saw so many miracles down there” is curious. It’s too bad they weren’t more explicit about the nature of those “miracles.” They even turn blame back on themselves for why they aren’t seeing improvement, that they did not get their sooner. It probably would have made no difference to anyone but Burzynski’s accounting staff if they had.
Another thing, there’s no evidence that Derek has received palliative care, which is surely indicated. And on June 21st the Spectator headline says it all:
“All we can do is hope, pray,’ says mom: No sign experimental drug is working for Derek”
On September 15th, Derek died. During the intervening time since the last update in the paper, Derek had been in the hospital a lot:
[His mom] explained Derek has been in and out of hospitals in Grimsby and Hamilton for the last five weeks suffering a variety of ailments that included a bleeding ulcer, pneumonia and urinary infections.
And in the end, the family rationalizes why the treatment did not help, as we see in the paper:
Derek’s father […] said they’d been told their son would need to get the antineoplaston treatment, delivered through a catheter inserted in his chest, for a solid six weeks in order to show any benefit.
Because of his recurring health problems, however, the longest stretch they managed was five weeks. “We got the treatment into him, but it was never as much as he needed,” [Derek’s dad] said.
This is the first time that we have heard this “six solid weeks” nonsense. As we know from any number of patient reports, nurses have claimed that it begins working immediately. It’s hard to say why in this case the family would be told this (if that is in fact accurate that they were), but it does give the Clinic an easy out when the boy arrived too sick to even make it to treatment.
As Stanislaw Burzynski heads to court again to answer charges made by the Texas Medical Board on behalf of a variety of patients, he is doubtlessly preparing by getting the testimony of current and former patients. In anticipation of this pony’s one trick, we are telling the stories of patients who have testified on Burzynski’s behalf over the course of his long, dubious career and see where they are now.
Janet C. was diagnosed with neuroblastoma at age five. According to her father, who testified for Burzynski in front of Congress in 1998, two years after her diagnosis:
Over a period of 17 months beginning on February 28, 1996 she has suffered through 10 months of very aggressive chemotherapy, 6 days of ablation chemotherapy, 3 days of total body radiation therapy. Twice each day. And then a very gruesome bone marrow transplant resulting in the doctors telling us on February 17 and 18, 1997 that our daughter had only hours to live […].
She was discharged, in remission only to incur 3 life threatening secondary infections. She has been in relatively good health since August 1997. That may sound like good news, but this disease has 93% rate of recurrence which results in death. Most medical journals do not give survival rates after 2 years. They know what happens.
At this point, we need to understand that Janet has been put in remission by grueling yet effective conventional chemotherapy. She had been given more time, but that is, understandably, not enough for a parent who will see anything but a child living a full life to be a failure. It is at this point, when she is remission, that the family starts looking at Burzynski’s treatment. At this point, in order to receive antineoplastons, Burzynski’s unproven treatment, originally isolated from human urine and blood, Janet will need to be on a clinical trial.
It sounds like Janet’s dad had an awful time getting a timely response or even acknowledgement from the FDA that his daughter’s case was being considered for a clinical trial. This is not to the agency’s credit and is a part of the Congressional record. Once everything is filed, of course, as is usually the case, the reply was back very quickly, according to Janet’s father:
The protocol package was sent to the FDA via fax. It was returned to the Doctor’s office, disapproved in less than five hours. The Doctor’s office called and said the FDA had disapproved the protocol and would not allow the Doctor to treat Janet prophylactically. I was shocked by this response from the FDA.
The important thing here is that Janet’s dad wanted to treat the disease prophylactically. This poses some methodological problems for a clinical trial. Let’s say that Janet doesn’t progress. Does that mean that the antineoplaston worked? Or does it mean that she was one of the 7% who happened to not relapse? Well, you can’t in principle know. But the situation here is even less secure, and it’s understandable to see why the FDA would slap the proposal to pump ANP into Janet down so quickly. It’s not even meant to be used as a prophylactic treatment, but only for present disease. This radical departure from normal protocol more than justifies rejection of this particular proposal (not that Burzynski has ever been particularly scrupulous about adhering to protocols):
The father despaired:
The morning after I called Mr. Zimmerman at this home I received a call from Mr. David Banks, also from the FDA. I cried and begged both of these men to at least give my daughter a fighting chance at life. My pleas fell on deaf ears. Mr. Banks sent me a write-up apparently from the Journal of the American Medical Association by a Dr. Green. It was dated 1992 I recall. It was a smear of the treatment I was seeking and the Doctor who invented it.
I called Mr. Banks back He told me to cal a Dr. Blaney at the Texas Children’s Cancer Center. I was referred to a Dr. Stacey Berg. WE discussed janet’s cancer. Dr. Berg stated that a patient in remission was not eligible to participate in the clinical trial for obvious reasons — nothing to measure.
And there you have it. An eminently reasonable explanation. Further, they explained what one of the most important medical journals had to say about Burzynski. Though to the desperate, that gets waved away as a “smear.” The father goes on to say that this Dr. Berg said that Janet had nothing to lose by going on the ANP. If true, it’s a bad thing to say to a patient’s father. What happens if Janet is in the 7% who do not relapse and she has a toxic event like Josia C’s? Prophylactic treatment might possibly kill her for nothing (presumably safe and effective doses for prophylactic treatment hadn’t been figured out anyway). Or what if she is in the 7% and has one of the numerous toxic events the FDA observed to have been ignored or unreported in Burzynski’s studies in 2013? Quality of life or life itself could easily be lost. With no reason to expect that antineoplaston would have any prophylactic effect, why submit a child (a protected class of patient) to unknown dangers?
Not only did the family appear before the House committee to testify for Burzynski, but the father went on TV with John Stossel to make his case to the public.
STOSSEL: Consider Janet [C]. While she looks healthy, Janet has a form of cancer that’s likely to kill her before she becomes an adult. Her parents want to take her to this Texas clinic, run by Dr Stanislaw Burzynski. He has a treatment that might help her. It’s now being studied by the Food and Drug Administration. But only the FDA gets to decide who can be treated, and the agency turned Janet down. They say it’s not safe if people pursue medical treatments the government hasn’t sanctioned. […]
LYLE [C]: My daughter has a terrible disease called neuroblastoma cancer. I know what the survival rates are, which is essentially zero, and I’m trying to do something that may save my daughter’s life. We have absolutely nothing to lose and everything to gain.
We know, of course, that these last statements are not, strictly speaking, true. Further, there is no mention of the fact that the father wanted to give the drugs in a way that they are not being studied to be given or any sense of real risks that actually exist, which a desperate father would be willing to overlook. By April 15th, 1999, when the interview with Janet’s dad aired, we know that the FDA had caved to the pressure of the Congress. Again. Janet got the antineoplastons.
According to the page that used to be up at the Burzynski Patient Group, but has disgracefully been removed:
Janet is now 8 years old, and she continues to be in remission. After only 6 months of antineoplaston therapy, it is still not certain if she has beaten the odds against cancer. It is known, however, that she and her family have won the fight to decide for themselves how they can best save their child’s life.
[Lyle C.] says, “This was and still is the greatest struggle of our lives. I spent 42 years of my life defending this country, 26 years as a soldier and 16 years as a civilian employee. I find it ironic that I served the same government that attempted to deny my daughter a treatment that may very well save her life.”
It apparently did not save her life. Janet died on October 21, 2001 at age 11.
As Stanislaw Burzynski heads to court again to answer charges made by the Texas Medical Board on behalf of a variety of patients, he is doubtlessly preparing by getting the testimony of current and former patients. In anticipation of this pony’s one trick, we are going to start telling the stories of patients who have testified on Burzynski’s behalf over the course of his long, dubious career and see where they are now.
Douglas W. was a Burzynski superstar. He was a helicopter crew chief in Vietnam and then became a corporate jet pilot. On June 26, 1994, according to a March 6, 1996 report in The Oregonian, Douglas received a bad diagnosis. He had a brain tumor, a glioblastoma. According to the report:
[Douglas’s] life gave way to surgery, 33 radiation treatments and four months of conventional chemotherapy. The worst still was to come.
In January 1995, [Douglas] and his wife, Lola, heard bad news from their oncologist: The tumor still was growing. The doctor told [Douglas] he had three or four months to live.
At this point, Douglas turned to the Burzynski Clinic and went on antineoplaston treatment. It was not cheap:
In the past year, his quest for life has taken him close to the center of a national medical controversy. He’s spent $75,000 traveling to Texas and paying for chemotherapy that his insurance wouldn’t cover.
Antineoplastons are the almost certainly ineffective chemotherapy that cancer quack Stanislaw Burzynski has kept “experimental” for 4 decades. Though the experiments have led to no reputable publications, he sure has managed to charge hundreds of patients top dollar for the drug derived initially from human urine and blood. Essentially, Burzynski posits that cancer is caused by a lack of “antineoplastons” in the blood, that cancer is basically an antineoplaston deficiency syndrome. No other physician on the planet recognizes this as a cause of cancer, and no competent physician says there is evidence of this alternative immune system that is supposed to take care of cancer.
Regardless, the reason why Douglas is a superstar is revealed in the next few paragraphs of the article:
Eleven months after he started a chemotherapy unapproved by the Food and Drug Administration, [Douglas] is in full remission. […]
Last week, [Douglas] testified before a congressional subcommittee investigating the Food and Drug Administration’s obligation to patients with life threatening illnesses. He appeared on “Nightline” with Ted Koppel in defense of Stanislaw R. Burzynski, a Texas doctor who has been giving unorthodox chemotherapy to cancer patients.
In fact, according to the transcript of the May 19, 1995 Nightline episode, Douglas was used as an example of “desperation”:
DAVE MARASH, ABC News: [voice-over] The first thing you feel in the waiting room of Dr. Stanislaw Burzynski’s Houston, Texas cancer clinic is the desperation.
DOUG [W.] My name is Doug [W.], and I’m from Estekay [sp?], Oregon, which is southeast of Portland, and I’ve got a- I don’t know what it is, but it’s a brain-
WIFE: It’s a glio- it’s a glioblastoma.
DOUG [W.] : -glioblastoma, stage IV.
Back to the Oregonian article, where we see some surprising endorsements:
[Douglas] is in the spotlight because his tumor, an aggressive, advanced stage of glioblastoma, no longer makes a blip on a brain scan. His remission amazed his doctors in Portland.
Dr. Gerald L. Warnock, a diagnostic radiologist with the East Portland Imaging Center, has evaluated four or five of [Douglas’s] brain scans in the past year. He said the most recent scan, in January, was totally clear of a tumor.
“I have never seen it happen before,” said Warnock, who has evaluated about 50 patients with brain tumors.
He said [Douglass’s] remission could be a delayed reaction to his conventional treatments, a miracle, or the result of antineoplaston, the drug administered by Burzynski.
Warnock said he is skeptical of unconventional treatments.
“One case doesn’t make a doctor a hero,” he said.
Still, Warnock is impressed with [Douglas’s] remission, because he’s seen his brain scans, both before and after antineoplaston.
“If I had a relative with that particular type of tumor, I think I would send him down there,” he said.
Dr. Bruce Dana, a medical oncologist who treated [Douglas] with FDA approved anticancer drugs, also is impressed with [Douglas’s] remission. He said he has never seen a glioblastoma disappear after earlier scans showed it growing.
By any measure, these doctors are being irresponsible. Going to the press with a data set of one person is irresponsible, especially when the stakes are so high, namely a treatment for an intractable tumor. This is not the last time we’ll hear from Dr. Warnock, however.
Of course, we have seen too much weirdness with Burzynski’s charts in the past (we’re thinking of the time that the FDA got two different sets of records, one from Burzynski’s IRB and a different one from the Clinic, about a child whose death sparked a federal investigation–whoops!) for us to accept the interpretations of anyone who has received records from the Clinic. This is a major reason that the definitive study of ANP can’t possibly come from Burzynski’s outfit. They have shown themselves endlessly incapable of maintaining charts and running clinical trials.
Douglas was out among the 75 patients protesting outside the courthouse as Burzynski faced federal charges in February 1996:
Doug [W], a patient of Burzynski’s, expressed hope that Lake will allow continued treatment. After being on the unorthodox treatments since last summer, [Douglas] said his brain cancer has disappeared.
“I had done everything my doctors in Portland told me to do and then after 33 treatments of chemotherapy and radiation, they told me to give up hope. They said I only had two to three months to live. But I wasn’t ready to give up hope. That’s why I came here.”
On the 29th of February, Douglas was in Washington, D.C. and had five minutes in front of a House committee as patients were paraded in front of congressmen and cameras to beg for their lives.
And here’s why Burzynski and his legal team use patients as human shields. Because patients channel their whole being, their entire hope into the campaign to keep their doctor, who they are allowed to believe is the only thing keeping them alive.
The next time Douglas appears in the media, it’s in the Peoria Journal Star on 5 July 1996, which opened:
Just months after Douglas [W.] went on national television and before Congress to praise an unproven drug for obliterating his brain tumor, he got a shock: The cancer was back.
[Douglas’s] trauma illustrates the contention swirling over “antineoplastons. ” Are they the wonder drugs that desperate patients insist? Or are patients the victims of a fraud charged in a federal indictment of the drugs’ creator, Dr. Stanislaw Burzynski? “There is a long history of promises of miraculous treatments, and they unfortunately generally don’t pan out,” said Dr. Richard Klausner, director of the National Cancer Institute.
[Douglas] even stands by Burzynski, abandoning antineoplastons only when his brain tumor tripled in size. “We believe that treatment did work with Doug for a year,” said his wife, Lola [W], of Estacada, Ore.
It is sad, but entirely to be expected, to see that Douglas supported Burzynski after a clear failure. They believe the treatment works, but from the outside it is impossible to distinguish between a tumor growing steadily but slowly for a year and a tumor growing like crazy only in the last weeks. This is why we need trials. This is why patient testimonials are veridically worthless.
And we’re not the only ones who question the value of Burzynski’s treatment. Dr. Warnock, the radiologist who said that it looked like he would consider sending a family member to the Clinic after he saw Douglas’s scans, has had a come-to-Jesus moment:
The biggest question is how patients fare over the long term.
Take [Douglas], whose brain scans showed in January that his tumor was gone. In April, it was back. Triple antineoplaston doses failed.
[Douglas’s] doctor cannot explain the initial disappearance. But the relapse and a second patient who had “a flagrant progression of the tumor in 60 days” make him “extremely skeptical,” said Dr. Gerald Warnock.
We suspect Warnock has learned to not speculate wildly in public and that’s why he doesn’t explain the initial disappearance. Doctors and other medical professionals who work with Burzynski’s patients have reported being stung when they see what giving him the benefit of the doubt leads to. Take Dr. Bennett, who treated a girl in New Hampshire earlier this year:
Bennett’s decision [to treat the girl] was based, in part, on a newspaper article that said Burzynski had agreed to donate the medicine required for [ML’s] treatment. But what Bennett didn’t know is that Burzynki planned to charge the family for the clinical costs associated with the therapy.
[ML’s grandfather] 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.
Bennett says a representative of the Burzynski Clinic called him on that date seeking payment for the first month of [ML’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.”
“This is a classic bait-and-switch operation,” Bennett said of Burzynski in a recent phone interview. “He suckered me and this family into buying into a very expensive treatment plan.”
Bennett has become dismissive of Burzynski’s alleged treatment.
“His claims have no merit. He has never tested any of it realistically,” said Bennett.
And the IV-certified nurse who visited the Burzynski Clinic was apparently not impressed either:
Bennett noted as an example training for Ariel Dye, a registered nurse from Derry who oversaw the intravenous injections of [ML], which cost many thousands of dollars but provided nothing of value. Neither Bennett nor Dye were paid for their help.
“I went out there and watched the nurse teach a layperson how to work off a central line. It was nothing,” said Dye, who is an IV-certified RN. “It was crazy to me that they charged this.”
“I got little to no instruction saying (things like) if there are major reactions, this is what you’re going to do in this case, in that case,” she said. “They made it seem like it was this big training program they put me through, but they lied and were looking to make money.”
Nonetheless, in the same article, and despite the fact that ML reportedly had a bad reaction to the drugs, her grandfather still supports Burzynski:
But [ML’s grandfather] thinks Burzynski has shown at least anecdotally that his treatment has more promise than anything developed by mainstream medicine.
“If he had more funding, he could come up with answers, but nobody wants to do trials with him,” said [ML’s grandfather], who blames Burzynksi’s patent for the opposition. “Because one individual has controlling interest over this, they can’t make any money from this man.”
[ML’s grandfather] also thinks that if the FDA had allowed [her] to be treated at Burzynski’s clinic in Texas, rather than requiring it to be done in New Hampshire under the oversight of a local doctor, she might have done better.
“I don’t believe any of that nay-saying stuff. I’m not going into this blindly,” said [ML’s grandfather], talking about the months of reading and work and meetings he has held on the topic. If somebody else he knew was diagnosed with DIPG, he’d recommend going to Burzynski.
Even though knowledgeable professionals who have nothing to gain from seeing Burzynski shot down and who clearly want to help cancer patients in any way they can, once they have actually worked with Burzynski very commonly come out entirely disillusioned, the targets of Burzynski’s scheme, the fundraisers and family’s and patients, often cling harder to the Clinic, because the alternative is perhaps too horrible for the healthy mind to contemplate.
According to Douglas W.’s obituary in the Sept 8, 1996 Oregonian, Douglas died on the 6th of September, mere months after he appeared before Congress as an apparent cure to testify for Burzynski. He was 48.