Sign Petition, Save A Life

amother

Thu, Jan 02 2014, 4:28 pm

chavamom wrote:

Interesting that amother has so much inner knowledge of the Burzynski clinic and his purported clinical trials. FTR, the most recent ones were halted due to safety concerns after a child died from hyponatremia, a known side effect of the drugs he is peddling.

yes, according to the USA Today article, which got it's information from . . . the NCI. Is that where you get your info? Why are you so apt to believe this side without even reading the other side? What about all the patients he has cured (and they have released portions of their medical files to be shown in public on his documentary)?

I have no inside information. I just watched the two documentaries that I posted earlier which are available for free on youtube and it made me start to shake, literally, to think that he might actually have a leg to stand on and that everything I had read about him from sources I had trusted might be wrong. Then when I watched a third documentary on the history of other cancer treatments from non-pharmaceutical sources, I saw a pattern of behavior that made me sick to my stomach. Please do not trust me! Don't take my word for it! Just spend a motzei shabbos in front of the computer with a box of tissues and hear out the other side.

MommyZ

Thu, Jan 02 2014, 4:36 pm

amother wrote:

The NCI is biased, but we should trust documentaries he made about himself?

amother

Thu, Jan 02 2014, 4:56 pm

MommyZ wrote:

The NCI is biased, but we should trust documentaries he made about himself?

Absolutely not! Just as you shouldn't trust what the NCI says about itself! You should watch it, with a grain of salt, and decide for yourself what you think is most compelling. You can never know anything for certain unless you are personally involved. It's a judgement call. I'm just saying that it's impossible to make an informed judgement without hearing both sides. I have no idea who you are or what sort of health crises you've ever dealt with, but for me, personally, as a Jewish woman, and a scientist (in fact, I'm still working in that field) I felt the rug swept from underneath me as I watched the videos. I cannot vouch that antineoplastons work, but I have lost faith in the integrity of his accusers.

Honestly, the parts of the films that were most convincing to me were the snapshots of direct communication (letters, emails) between him and the FDA/NCI/Mayo Clinic and their responses, as well as the court testimony and Congressional testimonies, which are more fact than opinion/interpretation.

amother

Thu, Jan 02 2014, 5:11 pm

this isn't about him, personally, being poverty-stricken. It's about a potentially lucrative treatment that could mount some serious competition to other pharmaceuticals on the market. He charges about the same amount as a hospital charges for a c-section! And he has accepted every patient the FDA has allowed him to treat, including offering many free treatments. The FDA has restricted his patient access to those who already have been treated with "conventional" methods -- so of course all his patients come to him already having had chemo, radiation and surgery! All of his results necessarily include this prior treatment -- this was never a secret.

If you want to hear from people who have been personally cured by him, you can google the Congressional testimonies (or watch the videos). Hundreds of families showed up to support him with their survivors. There are tons of interviews with Thomas Navarro's family, through their battle trying to get the Navarro Act passed in Congress. (The documentary "Cut Poison Burn" follows their story.)

The American Cancer Society is no different than the NCI in this case. Don't trust what they say without verifying it first for yourself.

Barbara

Thu, Jan 02 2014, 5:31 pm

amother wrote:

Well, he grossed $40 million from 1988 to 1994, so I guess you're right about it being lucrative.

But its really not worthwhile discussing this with you. Any evidence that suggests that this alleged therapy is unproven at best, and perhaps quackery, is dismissed by you because its from mainstream sources. You even dismiss Dr. Weil's condemnation. The only thing you want to listen to is Burzynski himself, and any alleged patients that he selected.

amother

Thu, Jan 02 2014, 5:47 pm

Barbara wrote:

Why are patients who testified in court and in front of Congress 'alleged'? Especially when they show their medical files? And I have certainly heard the FDA's testimony. I have also seen exactly where it has fallen apart in their communications with him. If the judge didn't trust them, why are you so quick to do so?

I don't "trust" Burzynski. I simply don't trust the sources you are quoting against him. And I don't understand why someone would presume to affect a child's life and death decision (by not signing a petition) without hearing both sides.

amother

Thu, Jan 02 2014, 5:50 pm

Barbara wrote:

You forget the Japanese researchers who are corroborating his results on antineoplastons. yeah, I trust them over Dr. Weil because Dr. Weil doesn't have any first-hand knowledge of this research.

Barbara

Thu, Jan 02 2014, 6:03 pm

amother wrote:

You believe that "hearing both sides" means rejecting everything against Burzynski. Others have considered both sides and think he's a snake oil salesman, raking in millions of dollars by playing on the fears of people who have been diagnosed with cancer.

As I said, its useless to have a conversation wtih you, as you refuse to consider any position but your own.

But FTR, the so-called Japanese testing consisted of 3 patients who were treated with conventional chemo and radiation as well as antineoplastons.

amother

Thu, Jan 02 2014, 10:38 pm

Barbara wrote:

Yes, after considering both sides I do tend to believe that this treatment has potential that is being ignored by the FDA. But what bothers me is that I seem to be the only one who has seen Burzynski's side! All the arguments here against him seem to ignore the responses he has given, and when I mention them I am accused of having "inside information". It's not "inside info" -- it's publicly available in multiple forms that few on this forum seem to be aware of!

If you say that you have heard his side and came to a different conclusion, I will agree to disagree. We'll call it a hung jury. But based on everything you've written thus far, I find it hard to believe that you've examined all the available evidence. It's the ignorance that bothers me much more than the difference in conclusion.

If you're interested, here's a link to one (of many) documents that I found compelling. It's the Chairman of the Subcommittee of Oversight and Investigations (US Congress) writing to the attorney general of the US (Janet Reno) asking her to investigate the FDA's persecution of Burzynski.

http://www.burzynskimovie.com/.....e.pdf

"It is extraordinarily rare for a grand jury to fail to indict at the request of the U.S. Attorney. As
far as I know, a grand jury failing to indict some three to four times on essentially the same base of
facts is virtually unprecedented. It would appear that the FDA and the Justice Department are
abusing the grand jury process to harass and punish Dr. Burzynski for persuading a federal judge
that he is not violating the law by practicing medicine within the State of Texas.

The Subcommittee will be conducting its own investigation of the role of the FDA and the
Department of Health and Human Services in what appears to be an egregious violation of the rights
of Dr. Burzynski. By copy of this letter, including the attachments, I am referring the matter to the
Judiciary Committees of the Congress for their consideration of the role of the Department of Justice
in this case."

A quick search on pubmed for "antineoplaston + Japan" shows 15 papers from 4 different journals. And again, the FDA only allowed this experimental treatment to be tried AFTER conventional chemo/radiation. (The Japanese may have similar rules.) You do the best experiment you can within the limits of the law.

gold21

Fri, Jan 03 2014, 12:05 am

I don't care about the Dr Burzynski controversy. I just want this little boy to be OK. If we truly believe in Hashem, which is what our lives are based on, then we believe He has the ability to heal this boy through whichever venue He chooses. I definitely look down at anyone who refused to sign- because this boy does not seem to have any other options on the table at this moment. Who are you to decide that his parents should not try every single option possible until they find a cure for their child? If you have a better option to offer the parents, so please contact them ASAP. But if you have no other suggestions for them, it is cruel to deny them a signature.

You know what they say- Empathize, don't sympathize. Imagine yourself in another person's shoes, don't just "tsk tsk" from afar.

farm

Fri, Jan 03 2014, 12:03 pm

amother wrote:

Of course. But you do not need FDA approval for R&D. It is the manufacturer with the patent who submits an application to the FDA for approval.

What does that have to do with anything? We were addressing your point (assuming this is the same amother throughout the thread) that there is a whole complicated maze of ABC gov't agencies with miles of red tape that need to be cut before a drug can be approved. I was answering that somehow, dozens and dozens of individual scientists discover or synthesize molecular entities, patent them, get backing from R&D companies (big and small and everything in between), get FDA approval to start phase I trials, then phase II if phase I goes well, then phase III and then FDA approval for use in the USA with years and years of post marketing surveillance. You are making it sound like this is bizarre and impossible. It is not. It happens. Commonly enough. All the time. You do not hear about conspiracy theories and closed court files and families begging to get their loved ones Remicade for Crohn's. Because Janssen pharmaceuticals went through the proper channels and got Remicade approved for Crohn's. So anyone can have a doctor prescribe it if necessary. The end.

farm

Fri, Jan 03 2014, 12:07 pm

amother wrote:

which drugs are not from pharmaceutical companies? It costs millions of dollars to bring a drug to the market -- are there private individuals and small companies that have those resources?

"I have never and will never approve a 'new drug' to an individual, but only to a large pharmaceutical firm with unlimited finances." - FDA, Bureau of Drugs Director, Dr. J. Richard Crout, 1982.

Yes. There are plenty of private individuals and small companies that have those resources. Off the top of my head, going back to the FDA approved oncology drugs in 2013, 2 of the companies to date have exactly one FDA approved product to their name. Their 1 oncology drug that was approved in 2013. Pharmacyclics and Ceptaris Therapeutics. Ever heard of them before? Before today, neither did I.
And FYI, Dr. Crout left the FDA in 1982.

PinkFridge

Fri, Jan 03 2014, 12:09 pm

farm wrote:

It took time though for Remicade. I wonder about that point where it was approved for RA, but not yet understood as an option for IBD.

I do get your point though. Personally, I signed the petition to give chizuk to the parents. I see both sides.

farm

Fri, Jan 03 2014, 12:44 pm

PinkFridge wrote:

Of course it took time. Lots of it (10-20 years usually). That's why they get a nice, long, exclusive patent before other companies can start making generics. Burzynski's clinic was founded in 1976, I believe. More than enough time for him to have followed standard procedure and have his miracle FDA approved by now.
The time between approval for one indication and not another is when it can be used off-label for the unapproved indication.

May the parents have 120 years of good health and nachas from this child and any others they might have.