Today’s post will be relatively brief (for an Orac post, that is). The reason is that it’s some very sad news that depresses me greatly. It’s also because I don’t want to distract too much from the announcement I’d like to highlight. About a month and a half ago, around the same time that Stanislaw Burzynski managed to get off on a technicality, with the Texas Medical Board agreeing to dismiss its case against Burzynski because it apparently couldn’t go after him for treatment decisions made by doctors he hired, I met an unfortunate girl named Amelia Saunders. Amelia had been diagnosed with a brain tumor back in February, specifically an inoperable grade 2 diffuse astrocytoma. Somehow, Amelia’s parents found Stanislaw Burzynski, as so many cancer patients do. Given the massive costs associated with Burzynski’s antineoplaston treatment, using a combination of the Amelia’s Miracle website and impressive hustle and marketing, Amelia’s family managed to raise £250,000 to travel to Houston and begin treatment at the Burzynski Clinic with his “antineoplastons,” a treatment that, as I’ve explained, has no convincing evidence supporting its efficacy.
In one of my posts, I explained how Dr. Burzynski’s explanation for cysts that formed in Amelia’s tumor in which he claimed that this was evidence that his treatment was working was completely off-base. This resulted in Amelia’s father commenting on my blog, a comment that I couldn’t ignore and had to respond to. So I did. Unfortunately, Amelia was clearly getting worse, and I feared that the end was near. Knowing what the Saunders family would go through made that knowledge even more painful, and it was clear that even the Saunders were coming to the realization that Amelia was getting worse.
Unfortunately, yesterday the end came, and Mr. Saunders posted this to Amelia’s facebook page:
This is the update we hoped we would never have to write.
Amelia, our beautiful little girl, left us this morning at 9.50am, holding both our hands as she took one last breath. It was peaceful, quiet and without pain or suffering. Chantal and I had told her only minutes before that it was OK for her to go, to be free.
Now she is.
Although there is a huge hole left in our lives, Chan and I will be strong and support each other through this awful time. Charlotte will have all our love as our daughter, and when she is older we can tell her about the amazing big sister she once had.
Our hearts are shattered into a thousand pieces.
Thank you, everyone, for your love and support. Our lives will never be the same again.
Richard (Amelia’s dad) x
There’s nothing to say other than to offer to the Saunders my sincerest sympathy. I have only the vaguest inkling of how horrible it is to lose a child, and there’s nothing that can be said to ease the pain right now. I also realize that this was inevitable and would have happened even if the Saunders had not sought out Stanislaw Burzynski. None of my anger or contempt is directed at the Saunders. In fact, contemplating the pain they must feel breaks my heart. On the other hand, contemplating the man who gave them false hope and enticed them into spending so much time raising money and subjecting their child to antineoplaston infusions fills me with outrage. That’s right. I’m talking about Stanislaw Burzynski.
That’s why I like the idea of the campaign that Bob Baskiewicz has come up with to wish Dr. Burzynski a happy birthday this year, skeptic style:
In honor of Dr. Stanislaw Burzynski’s 70th birthday on January 23rd, 2013, the Skeptics for the Protection of Cancer Patients are fundraising for St. Jude Children’s Hospital. Our goal is to raise at least $30,000 by Burzynski’s birthday, the approximate cost of entering one of his clinical trials of antineoplaston therapy. On his birthday, we will deliver a present to the Clinic, a challenge to Dr. Burzynski to match the total sum donated by skeptics, science advocates, and others who value good research into devastating forms of childhood cancer. The more you give, the more we ask of Burzynski.
Please visit http://www.crowdrise.com/fightchildhoodcancer/ and donate to St. Jude, a fantastic organization that does not turn away patients who cannot pay.
As I’ve heard it said, if Burzynski actually agreed to do this, it would be the only good thing he’s ever done for cancer patients in his entire miserable career. Do it in Amelia’s memory. Do it in the memory of all the patients over the years for whom Burzynski has promised to do so much better than conventional therapy and has never succeeded.
In the meantime, for those who come across this blog, remember that I’m not doing this to attack patients or their families. I’m doing it because, as a cancer surgeon and researcher, I hate it when patients are charged tens or hundreds of thousands of dollars to be enrolled in dubious phase II clinical trials that he never publishes in a form that has enough detail for scientists to tell if there is any evidence of efficacy. I can’t stand it when someone like Burzynski holds out false hope. That’s why I’m joining P.Z. Myers in asking you to help make Stanislaw Burzynski pay cold hard cash to a worthy cause.
He won’t, of course. He has no shame. But at least we can raise money for a worthy cause while at the same time bringing attention to Stanislaw Burzynski and what I consider to be his incredibly unethical behavior.
More on Burzynski:
- Burzynski The Movie: Is Stanislaw Burzynski a pioneering cancer researcher or a quack?
- When “personalized gene-targeted cancer therapy” really means “making it up as you go along”
- What Dr. Stanislaw Burzynski doesn’t want you to know about antineoplastons
- Dr. Burzynski and the cult of personality of the “brave maverick cancer doctor”
- Stanislaw Burzynski: Kind-hearted strangers and a failure of medical journalism
- Stanislaw Burzynski versus regulations protecting human research subjects
- Stanislaw Burzynski and “clarity” from the FDA
- Eric Merola apparently doesn’t like what Orac writes about Stanislaw Burzynski
- Stanislaw Burzynski gets off on a technicality
- Stanislaw Burzynski: On the arrogance of ignorance about cancer and targeted therapies