Posted to Jewish News on
by Sandy Eller - VIN News
Devorah Cohen with her son Elisha. Photo: VIN News.

Mother Pleads with FDA to Allow Treatment for Son

A Houston Orthodox Jewish family has launched a petition to the Obama administration in an effort to get the Food and Drug Administration to allow their six year old son access to a treatment that they hope will cure his aggressive brain cancer.

Elisha Cohen was diagnosed with anaplastic medulloblastoma in October of 2012 and since that time has undergone neurosurgery and high dose chemotherapy to treat his cancer.  While tests showed that the treatments had initially eradicated the tumor, it returned several months later and was deemed by doctors to be untreatable.

“The doctors told me to go home, to take my son to Disneyland,” Elisha’s mother, Devorah Cohen told VIN News.  “But Jewish people don’t give up.  It is not what we do.”

With all conventional treatments exhausted, Mrs. Cohen and her husband Yaakov have been working with researchers and pursuing trial drugs to help find a cure for Elisha, her fifth and second to youngest child.

One promising lead they uncovered is an alternative treatment that is in use at the Burzynski Clinic, located just fourteen miles from their home, called antineoplaston therapy.

While the FDA pulled its approval for the treatment in July of 2012 pending further clinical trials and no longer permits the clinic to enroll any new participants, the Cohens are hoping that the FDA will grant Elisha a “compassionate use exemption” something that has been done 247 times in the past.

Antineoplaston therapy, which uses synthetic chemicals to induce cancer cells to stop growing and to develop features that resemble normal cells, has been a source of controversy for many years. Developed by Dr. Stanislaw Burzynski in the 1970’s, the treatment is only available in the United States at Burzynski’s clinic.

According to a report on the American Cancer Society’s website, the National Cancer Institute has found no convincing evidence that antineoplaston therapy is effective in treating cancer and Memorial Sloan Kettering Cancer Center’s website warns “there is no conclusive evidence to support the antineoplaston theory.”

Dr. Burzynski, who has offered to treat Elisha at no charge should the FDA grant the compassionate use exemption, disagreed with those findings, saying that the fourteen trials treating patients with malignant brain tumors have had good results and that the only impediment to FDA approval of Phase 3 trials of antineoplaston theory is paperwork.

“It is a bureaucracy,” said Dr. Burzynski.  “This child is dying of a malignant tumor. I believe that saving the lives of children should take precedence over bureaucracy but there are those in Washington who feel that paperwork is more important than kids’ lives.”

For the Cohens, any chance at all of saving Elisha’s life is well worth pursuing.

“I know that this is a controversial treatment that has serious side effects,” explained Mrs. Cohen.  “This isn’t like giving my son candy, but there are people I spoke to who were told by doctors that they weren’t going to make it who are alive today after having antineoplaston therapy.  I want the opportunity to give Elisha a chance to live.”

The Cohens are hoping that by getting required 100,000 signatures on their petition the White House will appoint an outside committee to consider granting Elisha the compassionate exemption he needs to take part in the Burzynski Clinic trials.

Just eight days after its launch, the petition has already garnered over 42,000 signatures.

“This isn’t even about the signatures as much as it is about getting 100,000 people to pray for Elisha, which is the most important thing,” said Mrs. Cohen.  “This is about achdus, about asking the Jewish people to unite and asking Hashem for the right eitza.”

So far the Houston community has banded together to support the Cohen family, with nightly Tehillim groups at the Cohen home, challah baking and fundraisers, including one to be held this Motzei Shabbos at Congregation Beth Rambam in Southwest Houston.

A website dedicated to raising funds for Elisha has already raised $73,526. Mrs. Cohen estimates that the nine trial drugs that Elisha is currently taking cost over $9,000 per month.

“We are so good at forwarding jokes and stupid things,” said Mrs. Cohen.  “Let’s take a minute and forward the petition.

It only takes a few minutes to fill out and anyone over age 13 can sign, even if they are not a US citizen.  But most importantly, please daven for Refael Elisha Meir ben Devora.  Hashem can hear my son right now and we know that Hashem can bring Elisha a yeshua.”

To sign the petition, click here.

To donate to the family, click here.

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37 Comments

  • Mottel

    I don’t like reposting articles from multiple places – but I think this issue is important enough to say it here as well:

    I can not blame the parents, G-d only knows the struggles they go through, but Yidden:
    Burzynski is a FRAUD! The man is a charlatan that sells snake-oil and false hopes. He originally synthesized his sodium-rich drugs from blood and URINE — the urine collected from public parks, bars and penitentiaries. His treatments cost tens of thousands of dollars and are not scientifically backed at all. Please – do not legitimize his sick work of preying on the suffering of others!
    See more:
    http://www.usatoday.com/story/news/nation/2013/11/15/stanislaw-burzynski-cancer-controversy/2994561/

    • Bitachon

      You’re way off base here. Whether Dr. Burzynski is a fraud or not is irrelevant since the boy is gravely ill and he’s offering to treat him for free. Had you bothered to read the article you would’ve known this. There’s no good reason to dissuade people from signing the petition. These poor parents have exhausted all other means and you want to discourage people from supporting the one outside chance that could help save their son? SHAME ON YOU!

      Everyone, PLEASE SIGN – It’s easy and could help save a life!!!

    • Mottel

      To Bitachon: SHAME ON YOU!
      This is a case beyond that of anyone person. You’re asking a regulating body that is there to keep us safe, to prevent poison from getting into our food and medicine and hurting us, to allow something that is untested and unsafe. Antineoplaston therapy, it can lead to swelling of the brain and comas, but even more so – it gives people false hope. Burzynski may give them free treatment, if desperate parents can sway the Jewish community to do his legal work for him. Once he’s in business again, he’ll take money from people trying to save their loved-ones.
      Read the article. I think the parents should be supported, emotionally and in all matters, my prayers are with Elisha – it breaks my heart to even think of what they all must be going through . . . but I will not endanger people around the world to give people false hope.

    • Milhouse

      The FDA does not “keep us safe, to prevent poison from getting into our food and medicine and hurting us”. It has killed many many more people than it has saved, by preventing them from getting treatments that would have saved them.

      The FDA is set up with a bias against approving anything; each bureaucrat there knows that if they approve a drug that hurts 1000 people they will personally get the blame, but if they block one that would have saved 10,000 or 20,000 nobody will know whom to blame.

      When you get right down to it, what right does the FDA have to stop a fully informed patient from choosing to take a chance on something that might not work, or might be unsafe? It’s the patient’s body, it’s the patient’s life, who gave the FDA the right to say no?

    • Milhouse

      This is a case beyond that of anyone person.

      So this little boy should die, for the “bigger picture”. Nice.

      Burzynski may give them free treatment, if desperate parents can sway the Jewish community to do his legal work for him. Once he’s in business again, he’ll take money from people trying to save their loved-ones.

      They’re asking for a compassionate use exemption from the ban. How could that hurt anyone else? How will that put the fellow back in business?

    • Bitachon

      Mottel, you’re not a well man, that’s quite clear from your tone and disposition. Nevertheless, I’m compelled to respond for the sake of others who are inclined to help this little boy.

      First, you’re “broken heart” is not with this family; if it were, you’d show more interest in proposing a practical solution to Elisha’s medical issue than to “exposing” its political implications. To this end, your behavior is beneath contempt. Worse yet, you publish such drivel under a Yiddish name. Disgraceful.

      Second, the parents are not asking the FDA to approve a treatment that will either directly or indirectly harm Americans; rather, they’re asking for an exemption that would allow their son to receive Antineoplaston therapy. If the FDA were to comply, it would not establish any precedent for “charlatans” like Dr. Burzynski to further push their agendas. On the contrary, if he’s granted permission and chas v’shalom fails, his credibility would be tarnished. Politically speaking this may not be to their benefit but, practically speaking, it could be to Elisha’s.

      Furthermore, you’re paranoid assertion that the general populace would somehow be endangered if the FDA were to grant an exemption is rooted in some neurotic hatred for Dr. Burzynski, not in any deep love or respect for your fellow man. Again, if it were, you’d show more interest in proposing treatment for Elisha than discrediting Dr. Burzynski.

      In all fairness to the parents, I couldn’t care less what gives them hope at this point, as long as they trust in Hashem and do whatever they practically can to help their son. It takes a desperate, evil mindset to discourage people from assisting them in this regard. For acting upon these thoughts, Hashem should have mercy on you.

      Everyone, PLEASE SIGN the petition– Here’s the link again:

      https://petitions.whitehouse.gov/petition/authorize-fda-grant-compassionate-use-exemption-refael-elisha-cohen-antineoplaston-therapy/BVSP1ZkW

      It took me less than a minute and B”H they’re almost halfway there!

    • chaim

      Technically you are 100% Correct. Burzynski is a fraud and his treatment is useless (and dangerous)

      At the same time, not everything is black and white. As others have mentioned, you have a mother here going through the worst nightmare, imagine the comfort she’ll take knowing that 100,000 people sympathized with her and supported her.

      I understand that you are worried that Burzynski is using this case to get his snake oil back on the market, and that once it’s there he will con other desperate patients.

      That is a legitimate concern but I believe that no one is going into treatment with Burzynski blindly. Anyone who injects something into their body and spends tens of thousands on treatment does some basic research. and you can be sure that when they ask their primary physician they are warned that this is a false treatment.

      They are aware of the claims against this treatment but believe what they want to believe to make themselves feel better. If they didn’t go to Burzynski they would go to another quack.

      I signed because I think the benefits of signing are greater than the potential negatives.

      At the same time. I hope the uneducated in the frum community don’t pull another “Martin Grossman” and start screaming that the FDA (and Obama?) are heartless you know whats etc. The FDA is doing the right thing here.

    • Mottel

      Bitachon,
      You are the one who is obviously not well. How else can I explain that you purport to have telepathic powers – to claim to know that I don’t care for the family and the child, to bring in Judaism and impinge on what Yiddishkeit is . . . when you start taking your meds again, then perhaps we can talk.

      Milhouse,
      This isn’t about the FDA, it’s about medical experts, people who dedicate their lives to the research of cancer in a very brave attempt to treat the sick, that have issues with Burzynski. Look at the USA today article, and then we’ll talk.

    • Milhouse

      Mottel, this is precisely about the FDA, not about the medical experts. The medical experts are not preventing this child from getting the treatment. They advise against it, but they have neither the power nor the will to force the family to take their advice. It’s only the FDA that is using brute force to prevent it; the only thing standing between this child and the treatment (however ineffective it might be) is the fact that the FDA will send armed policemen to prevent it, and to arrest anyone who tries to provide it. And that’s what this petition is about. It’s the parents’ right, having read all the information, to decide that they want to do this anyway. The FDA does not have the right to stop them. And the petition asks them to make at least this one exception, and remove the policemen and armed guards from the way of this child’s treatment, no matter how useless they think it is.

  • It's easy to sign!

    Please everyone….it’s so easy to sign…it takes less than 30 seconds to join the WH list, then you’re automatically signed into this petition! It’s that easy!!!

  • To Mottel

    I’m certain you are an educated man, with a PhD in G-d only knows what, and have been formally educated to trust the sole purveyor of truth: the media.

    Get a handle on reality and realize that the FDA — and the USA Today, and practically the rest of the media — are in a drooling relationship. They can’t get enough of each other, and the only thing they love more than each other is to further each others propaganda.

    For every one article on the Internet, there’s surely another one to counter. Watch this video and then re-think your comment: http://www.youtube.com/watch?v=rBUGVkmmwbk

    • Mottel

      Dear Number 5,

      Your tinfoil hat must have slipped a little, because those media brain waves from the black helicopters must be getting to you again.

      I trust science, because I know it is in the very fabric of the world the Aibershter created. It is at the heart of what the Torah tells us: “ורפא ירפא.” It is through clinical trial and peer-review, that we are able to find the cures for the diseases that killed our great-grandparents, that caused generations of people to grow up blind or crippled or maimed. Instead of sending me in-house propaganda from Burzynski, why not look at what doctors, experts from the NCI and other places of repute, say.

  • to #1

    i’ve never heard of the fellow, but if everyone else is saying there’s nothing else to do for him, then this can’t be worse than nothing else, so i signed it, because even just this little bit of possibility can be the tool for the miracle that HaShem will make to bring this little boy back to health!

  • Duke Medical Center

    what about trying to go to Duke Medical Center. They are known to be top with Brain tumors. the Shliach Rabbi Bluming has connections with the Drs. there and can try to help you out. call him 919 630-5129. I know people that were really helped from there.

  • DaasTorah

    Burzynski is clearly fraudulent in his promises that he can cure cancer. He is a charlatan.

  • To #5

    As a practicing provider I was skeptical (to say the least) of any ‘alternative’ cures, but for the past 10 years have come to realize the corruption of the FDA, CDC and the rest.of the 4 trillion dollars- a- year- industry. Mottel may have some problem with this idea, but I treat patients daily and can say there is something behind many of these doctors’ cures that cannot pass the FDA- but with the video you posted the reason is clear. (Mottel can view it to see why it caused encephalitis.)
    1 patient of mine said her child was a patient of Burzynski and it did not help. Another is avoiding chemo and the rest and is doing great months later.
    Hashem is the healer and nobody, including doctors, can decide what will work. At this point stay away from arguing and either sign or don’t, but let the parents decide what to do.
    Refuah Sheleima to all.

    • Mottel

      Number #14: Please don’t obfuscate. you are a practicing provider of what? Are your a doctor – as legally recognized by the state of New York? Or a message therapist?

  • Duke Medical Center

    We have been to Duke and they have one of the best Brain Tumors centers in the world!

  • David Kahn, MD

    Dr. Burzynski is a fraud. He has made a lot of money off of desperate patients and their families. It is unfortunate that conventional therapies have not worked for Elisha. However, antineoplaston therapy does not work and is dangerous. It is beyond the scope of the comment section to go into details about Dr. Burzynski’s long-running scam. The FDA should be shutting this “clinic” down and not be offering compassionate use exemption. Compassionate use exemptions are used for drugs that have shown efficacy in phase I and II trials were no effective treatment is available. After thirty to forty years Dr. Burzynski has not proven the effectiveness of antineoplastons because there is none.

  • to Mottel

    You might be 100% correct, and you may even be trying to help.

    That said, I would imagine that this family has gone through enough already, and I’m sure the decision to try Burzynski’s treatment was not a decision that was made lightly and with little thought.

    One thing they do not need right now is an Internet know-it-all with only a first name telling them what to do.

    You might be right, and you might even mean well, but if you really want to help, be quiet and let these parents do what they have decided is best for THEIR child.

  • preying on the vulnerable

    I don’t understand the attack on Mottel – he is right. The most dangerous thing is offering someone treatment – something that has never been proven – when that person is most desperate. This doctor – who is not board certified or trained in the US – has published no data on any of his “trials.” If you go to his website his credentials are vague – never good for a doctor. Rationale doesn’t enter the picture when someone has cancer – especially when a child is involved. Unfortunately they are plenty of people in this world who are willing and actively take advantage of people in their time of desperation. Milhouse is off base concerning the FDA, he doesn’t understand the basic history why the FDA was established in the first place. Yes it is not perfect, and the clinical trial process if exhaustive – but you want it to be exhaustive. The worst thing that could happen would be for a drug to be released with no efficacy or safety established. Some times its important to realize when to stop continuing treatment. A good doctor is not someone who is willing to treat half haphazardly at any given chance – a good doctor is one who understands when not to treat – when the treatment itself could be harmful for the patient. Saying Tehilllim or going to givrei Tzaddikim (in our case the Ohel) would be more beneficial – we all say it together on Rosh Hashana and Yom Kippur (“Torah, Tefillah, Tzedakkah maviring as roah hagezirah).

    • Milhouse

      I know exactly why the FDA was established in the first place — populist politicians playing into an uninformed panic.

      the clinical trial process if exhaustive – but you want it to be exhaustive

      No, I do not. An exhaustive process means that you are guaranteeing that some people will be denied help that they could have got. You are deliberately setting up a system that will kill people, by denying them the drugs that could save them. Every time you determine, after ten years of testing, that a drug is safe and effective, you have effectively admitted that you killed all the people who died for lack of that drug over the past ten years. As soon as testing shows that it’s more likely that a drug will save people than that it will kill them, it should be released. If further testing shows otherwise, it can be recalled.

      The worst thing that could happen would be for a drug to be released with no efficacy or safety established

      No, the worst thing is not for a drug to be released with no efficacy or safety established. Preventing a useful drug from reaching the market is every bit as harmful as allowing a harmful one through.

      The whole model the FDA works on is that drugs are presumed harmful and ineffective, until they are proven otherwise. That is a literally insane model; it’s obvious that it does not reflect reality, and that’s the definition of insanity. It’s obvious that in reality some drugs are useful and harmless, others are useless and/or harmful, and there’s no reason a priori to suppose a particular drug to be in one category rather than another.

      A sane model would approach each drug making no presumptions at all. Tabula rasa. Which means that the default for any new drug is that it should be legal to sell it, with the caution that it’s not yet tested, so patients and doctors should be aware that it might be harmful, ineffective, or both. Then testing should begin, and if it proves harmful it can be banned, or at least a strong warning should be put out; if it proves ineffective, the FDA should put out a statement saying so; and if it proves useful and effective the FDA can give it a “stamp of approval”.

  • reader

    It is unkind to sell people false hope and it is unhealthy to support an adult’s wishful thinking. Thank you, Mottel and Dr. Kahn for speaking up. I don’t understand how your comments can be perceived as “uncompassionate.” Not believing in a fraudulent doctor does not indicate lack of faith in Hashem: it indicates sound thinking.

    • Milhouse

      In this case the fellow is not selling false hope; at worst he’s giving it away, so what harm can it do? What’s more than unkind, what’s actually inhuman, is to forcibly prevent a desperate parent from trying something that can do no harm, even if you’re fairly sure it can’t help either. And who knows? Maybe the snake oil will actually work.

  • Conventional Oncology EXPOSED!

    im not surprised at all that conventional MD training is fighting and suppressing BURZINSKY’s SHATTERING discoveries, and HOW IT THREATENS the very foundations the entire 39 yr wasted paradigm of the mainstream attempts to find a cure!!

  • Yaakov

    Questions to think about

    1) Are there any oncologists in the whole world who are convinced Dr Burzinski’s methods have merit, who are making any attempt to administer it in their respective countries? (even bad oncologists who just care about money)
    2) Why doesn’t Dr Burzinski open up a clinic in a “friendlier” country to administer his methods; maybe Poland where he was born and was educated?
    3) Do people realize how many clinics have moved to Mexico, China, etc to sell their wares, rather than have the chutzpah to stay in the US and play “victim to the FDA?”
    4) Do the American Cancer Association and Sloan Kettering have axes to grind?

  • WHat motive can there be for Covention Cancer Society to SUPPRESS?? PLENTY!! here it comes!!

    1. For over 30 years Dozens of Major Pharma Companies have invested 100s of Billions (yes that’s not a typo) in designing and developing “delivery systems” for radiation aka Chemo.

    2. The more evidence grows (and it is steadily and rapidly mounting) that Burzinsky’s paradigm is effective at eradicating this disease, the more obsolete conventional Oncology becomes, along with ALL ITS TEXT BOOKS, PATENTS, DRUGS, FACILITIES, etc etc!! Many many Billions wasted!

    3. Traditional Oncology will also have a major blow to its honor and soul, HOW MANY LIVES COULD HAVE BEEN SAVED, IF THEY WOULD HAVE BEEN LESS COMBATIVE AND MORE OPEN TO BURZINSKY 25 yrs ago, (when the FDA failed 12x to sue, jail and shut down, make go away, Burzinsky, Yes he won each and every smear and attack in court!)

    4. Suddely, Every Oncology is (training and all) Useless and Jobless!!!!!

    ONCOLOGY and BIG PHARMA have every possible motivation to resist, ignore, suppress, deny, the mounting evidence in favor of Dr B’s discoveries

    • Milhouse

      That’s ridiculous. It’s stark-staring paranoia. If there is a better cure for cancer, everyone would embrace it. If they reject it it’s because the evidence is not there. And yet, if this family wants to try it, and the provider is willing to do it for free, the FDA should not stand in the way.

  • Whoever thinks there cannot be Curruption in big Pharma

    whoever naively thinks that there cant be bias by those who invested ALL their training and Billions of invested wont be reluctant to discover that their entire paradigm has been Fundamentally found to be flawed and obsolete, YOU DONT THINK THAT ADVENT CAN BE MET WITH STEEP (overt and unconscious) cognitive discordance??

    shoichad yeaver (afilu) einei CHACHOMIM,

  • You limited mortals:

    The same Torah which said to see a doctor also said not to worship the doctor and to believe that the cure comes from whoever made the doctor and can come in any form possible even if the doctor can’t see how.

    If you resort to the keili theory – that God heals and we have to make a “vessel”, and therefore worship a human God in the form of an expert, all-knowing human, or body of humans, than you are a copout, non thinking person who struggles between faith and reality.

    If you believe then you believe, if you don’t you don’t. Any sophisticated compromise leaves you one foot in monotheism and the other in Baal.

    If my patient has faith in God, and I mock him for his blasphemy of the god of science, than i’m destroying lives and not healing people.

    I think God could not care less whether his cure would come in the form of a Burzunsky god or an FDA goddess. If there are enough prayers, and if the prayers are real, it will come in whichever way the family thinks it will come.