*Congressional feedback submission form is at the bottom of this page*
Now that Burzynski’s failure to help patients has been thoroughly documented by USA Today, it is important that skeptics and patient advocates seize the opportunity to press Capitol Hill to take action and investigate how it was that a quack like Burzynski was able to charge patients, their families, and their communities for an unproven and supremely unpromising therapy for decades.
To do this, you must write your representatives in the House and Senate and ask them to launch an investigation. We don’t mean “send them an email.” We need you to send in an actual physical letter to their office and follow it up with a phone call or a visit to their local office. Usually their contact info is on their office website. You may want to send your letters to your reps’ DISTRICT offices, as there may be delays of several weeks sending letters to Capitol Hill due to security screenings. Alternately you may fax them.
We are providing a couple of documents for your convenience, and we hope you use them. First, we have a draft letter to your congressperson you can use, but you should tailor it to your representative. Go to their website and find out which committees that they are on. If they are on a science, research, or oversight committee, you want to make the case that their committee has a stake in the outcome. Also, check their Wikipedia biography to see if they are a cancer survivor. This is crucial, as we will follow up on promising leads. Also, when you report in, note which staffer in the representative’s office you’ve been referred to and any details about them that you think might help us craft persuasive communications (for instance, a family member with cancer, if they mention it). You can send all that info to skepticsprotect [at] gmail [dot] com.
Besides your modified, personalized letter, we ask you to send along a physical copy the 483s, the FDA’s documentation of all the Clinic’s research protocol and ethics violations for the last decade. Lastly we ask you to include the most recent warning letters that were sent to Burzynski and to his Institutional Research Board. We want those documents and the horrors they contain in the hands of our representatives. And we want them to act.
In your letter, ask for an investigation and remember to set aside time on your calendar in two weeks to call your representative and follow up. Ask specifically if they will support an investigation of how the FDA allowed Burzynski’s research to go unimpeded for decades despite ample warnings and horrific site reviews.
Please check the Childhood Cancer Caucus to see if your representative is a member. Burzynski has claimed that his antineoplastons can cure even the most devastating and difficult childhood brain tumors, including brain stem tumors. His track record of experimentation on children–and his lack of results to show for it–should be investigated, and these congresspersons will be crucial.
The key committee regarding this matter in the House is the Committee on Oversight and Government Reform, and we certainly recommend that you look and see if your representative is on that committee. But you can also approach the committee itself (or the Subcommittee on Energy, Health Care and Entitlements) for an investigation into the FDA’s continued approval of Burzynski’s catastrophically flawed trials. Send your documents here:
Committee on Oversight and Government Reform
2157 Rayburn House Office Building,
Washington, DC 20515
Phone: (202) 225-5074 Fax: (202) 225-3974
In the Senate, your best bet is the Committee on Health, Education, Labor and Pensions. If your senator (listed below) is on one of these committees, please take special action and write to them.
Committee on Health, Education, Labor and Pensions
428 Senate Dirksen Office Building
Washington, DC 20510
Democrats by Rank
Tom Harkin (IA)
Barbara A. Mikulski (MD)
Patty Murray (WA)
Bernard Sanders (I) (VT)
Robert P. Casey, Jr. (PA)
Kay R. Hagan (NC)
Al Franken (MN)
Michael F. Bennet (CO)
Sheldon Whitehouse (RI)
Tammy Baldwin (WI)
Christopher S. Murphy (CT)
Elizabeth Warren (MA)
Republicans by Rank
Lamar Alexander (TN)
Michael B. Enzi (WY)
Richard Burr (NC)
Johnny Isakson (GA)
Rand Paul (KY)
Orrin G. Hatch (UT)
Pat Roberts (KS)
Lisa Murkowski (AK)
Mark Kirk (IL)
Tim Scott (SC)
During the upcoming winter recess, you might want to stop by your representatives’ district offices. From experience, I know that these offices are congenial places and the staff is genuinely interested in hearing from constituents. It would be positively outstanding of you to sit down with a staff member and walk them through the FDA documents.
When you have contacted your reps, fill out this form to report on your interaction with your representative so we can follow up in the best way possible. One submission per congressional office contacted, please. Send questions and supporting documents to rjblaskiewicz [@T] gmail [d0t] com.
(*UPDATE* We are getting reports that people who are submitting their letters via the web are generally not able to attach the documents and are being shrugged aside. This is why we are asking you to send the documents via snail mail.)
- If you are not too familiar with the Burzynski case, for the layman’s introduction, please read: http://disinfo.com/2012/11/stanislaw-burzynski-and-the-antineoplaston-scam/
- For an introduction to what was released last week, read David Gorski’s: http://scienceblogs.com/insolence/2013/11/11/the-fda-reports-on-its-investigation-of-the-burzynski-clinic-and-burzynski-research-institute/
- For a semi-technical intro to Burzynski’s cash cow, antineoplastons, read: http://scienceblogs.com/insolence/2011/12/12/what-dr-stanislaw-burzynski-doesnt-want/
- Gorski’s review of the original Burzynski Movie is also extremely useful for understanding how the Clinic operates: http://scienceblogs.com/insolence/2011/11/29/burzynski-the-movie-subtle-its-not/
- The best summary of what we’ve found as we’ve researched the stories of patients who did not make it is this TAM talk: http://www.youtube.com/watch?v=NqA5eWjr4pk
- Lastly, we have collected all of the patient stories that we have been able to find at The OTHER Burzynski Patient Group. For a representative case that summarizes some truly, truly disturbing behavior, please see the case of Levi G.
To skeptics outside of the US who want to help, you can write about Burzynski. We have a page that shows how to boost good information into the searches that Burzynski ranks well in. Please use those same strategies to link to the USA Today article. Another possibility is for skeptics with expertise in languages other than English to contact Susan Gerbic’s Guerrilla Skepticism on Wikipedia to see if they need anyone to translate the Burzynski page into those languages–Burzynski appeals to desperate people all over the world. If you know someone who could translate his page into Chinese, for instance, that would be wonderful.
Any questions can be can be directed to skepticsprotect [at] gmail [dot] com. You can leave tips in the comments of this page.
Thank you in advance for all you are going to do.
Pingback: Burzynski blogs: My Master List | Josephine Jones
Pingback: Refael Elisha Cohen: A Family’s Misery Exploited | Skeptical Humanities
Pingback: The Skeptics for the Protection of Cancer Patients need your help « Science-Based Medicine
Pingback: Stanislaw Burzynski: Using 1990s techniques to battle the FDA today « Science-Based Medicine