Being told you don’t exist and being ignored by lawmakers can make one feel invisible, but on a cool Austin morning in early May, cancer survivor Jessica Ressel was determined to be seen.
Flanked by her parents, who joined from their home in Springfield, MO, the Ressels held signs condemning the Texas Medical Board and blended into an eclectic group of protestors. Among them were others supporting their doctor, whose medical license hung in the balance in the 15th St. state building behind them.
Ressel, now 30 years old, was diagnosed in fifth grade with an inoperable Diffused Intrinsic Pontine Glioma (DIPG) brain tumor1 2, a disease so sinister that conventional medicine’s only acceptable option, radiation, never actually cured a tumor like Ressel’s. After learning she’d only live eight to eighteen months, even with the treatment and its devastating side effects, her family rejected conventional treatment.
“[Doctors] could not give us any references of anybody who has survived,” Jessica’s father, Dan Ressel said.
But survive she did, thanks to a Houston doctor, inventor, and polish immigrant named Stanislaw Burzynksi.
Today, Ressel shows no ill effects from her treatment other than minor scarring on her chest, where a medical device delivered a patented drug called antineoplaston, which most cancer patients never learn about because most oncologists aren’t aware of it and it’s not approved by the Food and Drug Administration (FDA). As she grew up and told her story, social media responded with venomous disbelief.
“[They said] I was made up, I didn’t exist, my story was fake, and I’m a liar,” Ressel said. “But I have the scars to prove it.”
Today, the lack of knowledge of Ressel’s recovery, and others her doctor miraculously cured, still exists even in the medical profession. For instance, a doctor was featured in May on the Humans of New York Facebook page saying he’s been researching a cure for 17 years and that DIPG kills 100 percent of the children who have it3. He’s obviously never met Jessica Ressel.
The public’s disbelief is understandable. After all, if there was a “real” cure for the heinous disease, every oncologist in the country would know about it and it’d supported by the TMB, right? If only it were that simple.
Despite publishing his work more than 300 times4 and having hundreds of former patients with “incurable diseases” survive for more than five years from the start of treatment5, the TMB, with the aid of taxpayer dollars, has launched dozens of investigations toward Burzynski. Several were closed after investigation due to lack of evidence while others were dismissed by judges after costly hearings6.
Critics claim Burzynski hasn’t published his findings in credible scientific journals, however much of his work, including brain stem glioma five-plus year survivals, have been published from FDA Phase II Clinical Trials7 8 9 10 11 12 13 14 15. Some of his published work includes survival rates for Diffuse Intrinsic Brainstem Gliomas with complete responses in over 20 percent of his patients16.
“TMB should concentrate on criminal and immoral behavior of physicians and not interfere in scientific accomplishments,” Burzynski said. “TMB works against the will of American people in the war on cancer and is slowing down medical research. They should be seriously reformed.”
The hearing (Nov. 19-25 and May 3-13) Jessica attended is unresolved. At press time, the two presiding State Office of Administrative Hearings (SOAH) judges haven’t recommended if Burzynski’s medical license should be revoked. If it is, it would deal an indirect death sentence to some current and future DIPG patients.
TMB’s claims against Dr. Burzynski range from billing issues by his staff, communication with patients about who on staff was a licensed physician, and that he had “inadequate informed consent” from patients.17 TMB also claims Burzynski didn’t disclose to some patients he was the owner of the treatment he was recommending. Those in the Burzynski camp describe TMB’s strategy as an inaccurate machine gun approach, partly designed to damage credibility.
“The strategy of the TMB, at least in the Burzynski cases, has been to throw a thousand things up in the air and see if anything sticks,” said a high-level Burzynski employee who wished to remain anonymous. “A ‘death by a thousand cuts’ strategy to deplete you financially, psychologically, intimidate you, and give a maximum possible punishment.”
Seven former patient cases were showcased in the TMB’s most recent attack against Dr. Burzynski, who testified that more than 10,000 patients have passed through his doors. The TMB claims Burzynski charged patients an “exorbitant” amount for drugs and medical services.18 Burzynski’s services are typically not covered by health insurances.
Burzynski argues that, even if TMB’s allegations were true, he was not the treating physician and thus shouldn’t be held responsible. TMB argues that because he oversaw four different oncologists on his staff, he was ultimately practicing medicine and responsible for their actions.
His former patients have designed a website (burzynskipatientgroup.org) with the tagline “We are living proof,” featuring success stories. The website features the names of more than 30 individuals said to be cured of brain cancer as well as lupus and various other cancers. Some feature videos and encourage visitors to contact them.
Burzynski detractors started a website (theotherburzynskipatientgroup.wordpress.com), apparently in response to the pro-Burzynski page, highlighting patients who died under Burzynski’s care. The website’s tag is “Their silence is deafening.” The website also shares quotes from supposed former patients commenting on the smell of the clinic and long wait times. In his third movie on this topic, documentary filmmaker Eric Merola details his claim that the anti-Burzynski movement is “Astroturf” or a “fake grassroots movement” meant to mislead the public into thinking there’s less scientific and human support for Burzynski than there actually is. Regardless of how “real” either side is, the two groups regularly engage in a social media information war that’s readily accessible to cancer patients searching for answers.
When the TMB sets its sights on a target, it’s like David versus Goliath, but David has no slingshot and Goliath has an endless supply of taxpayer resources. In fact, SOAH judges only issue a proposal for a decision and TMB’s enforcement process conveniently leaves room for it to revoke medical licenses even when judges rule in favor of the defendant.19
TMB apparently has no limit on how much it can pay its expert witnesses, and calling some of the witnesses experts, may even be a stretch. Taxpayers paid over $20,000 for one witness to assist the TMB. Another witness was a pediatric oncologist, not involved in private practice, who had never treated colon, pancreatic, kidney cancers or malignant mesothelioma or adult brain tumors (those listed in the TMB complaint).
Burzynski’s witnesses featured five cured cancer patients or family members of patients, all of whom paid to fly to Austin and testify. Montana’s Mary Susan McGhee testified that in 2011 that Dr. Joseph Murray at the Mayo Clinic, said her best option was to go home and die after diagnosing her with Stage IV esophageal cancer.20 According to McGhee, Dr. Nieva, the Chair of Oncology at the Billings Clinic, also told her to just go on hospice and added, “You may think you’re going to beat this, but you’re not.”
“I saw the PET scan,” McGhee said under oath. “It was everywhere. I mean, my whole body lit up.”
Literally, left for dead by doctors, McGhee’s children read about Burzynski in a Suzanne Somers book and insisted she fly to Houston. After about four months, her cancer was nearly gone. She continues to get PET scans every three months and remains cancer free five years later.
Jessica Ressel’s mother Robin testified about Jessica’s comeback. Mary Jo Siegel testified she’s cancer free after her 1991 Stage IV Non-Hodgkins Lymphoma.21 Siegel’s type of lymphoma wasn’t treatable by TMB approved “standard of care” methods. Margaret Manning mentioned Burzynski cured her of Stage IV Mantle Cell Non-Hodgkins Lymphoma in 2009. Mary Michaels testified her son Paul was cured of an inoperable optic-hypothalamic glioma astrocytoma.22 All patients entered the clinic with confirmed diagnosis and grim outlooks from independent hospitals and today are thriving.
Other former patients who didn’t testify, still traveled to Austin to share their stories with a growing group of Austin residents who became interested in the TMB after Merola hosted a showing of “Burzynski” at the Alamo Drafthouse on South Lamar a week prior to the SOAH hearing.
Minnesota resident Mariann Kunnari, who testified about Dr. Burzynski during a 1996 Congressional Subcommittee Hearing, was among the protesters. Kunnari’s testimony, available on YouTube23, features her four-year old son Dustin on her lap. In May, that nearly unrecognizable 25-year-old brain tumor survivor, chanted and held signs in downtown Austin trying to give a hero’s welcome to the man who saved his life. A typically soft-spoken and mild-mannered firefighter, Dustin couldn’t help himself when he saw the TMB’s recently promoted senior staff attorney Amy Swanholm.
“I saw her in the hallway and I felt like I had to say something,” he explained. “I approached her and asked if she knew who I was, she said she didn’t. It was on break, I didn’t have a lot of time, but told her, ‘I’m Dustin Kunnari, I was healed by Dr. Burzynski 20 years ago, and I’ve been in remission for 20 years. I just want you to know who you’re trying to take the license away from, and if you shut [Burzynski] down, there will be people that are going to die.’”
“I wish I had more time to talk to her,” he added. “But she told me, ‘Oh, I understand,’ and she shook her head in agreement. She understood.”
The core of TMB’s case against Burzynski centered on “Standard of Care,” a term in H.B. 21, the “Right to Try Act,”24 25 which one Texas lawmaker’s staff member said was passed as a result of a lobbyist “who everyone liked” and wasn’t able to receive the cancer treatment she wanted. The bill specifically limits TMB’s power to sanction doctors like Burzynski, unless the doctor isn’t following their standard, making alternative and innovative health options easy targets. Burzynski says “Standard of Care” treatments for many of the cancers he sees (radiation, chemo, surgery) will result in death or simply don’t exist. Futhermore, Burzynski is expected to honor his Hippocratic Oath to treat patients to this best of his ability.
Antineoplaston therapy, based on chemical compounds typically found in blood and urine of healthy individuals, can now only be obtained by entering FDA clinical trials. Burzynski continues to see positive results however with gene-targeted therapy, which requires analysis of a specific patient’s genes and a carefully selected cocktail of off-label medications. Unlike Antineoplastons, this approach isn’t unique to Burzynski’s work and is growing in popularity across the United Stated.
With the marathon hearing in its final minutes, Judge Roy Scudday put his hands over his face, and sparked a chilling conversation with Swanholm.26
Scudday: “Is it the (TMB) Board’s position that if there is a cutting-edge treatment such as what we’ve heard, (like) gene-targeted therapy, (and) at the time that they are utilizing that, it’s not been accepted, but that it then is subsequently accepted, is the TMB’s position that they violated, ‘Standard of Care’ by following that?”
Swanholm: Yes. The standard of care is subject to what is the standard of care at the time the patient is treated, what the rationale was that the physician had in creating the treatment decisions.
Scudday: (With large noticeable grin) So, is it the (TMB) Board’s position that they don’t encourage innovative therapy?
Swanholm: Absolutely not. Obviously there are people above my pay grade that should discuss current policy…but the way that the rules are laid out is you have rules that govern the standard of care…
The people above Swanholm’s pay grade with the ability to hold TMB accountable are in the Texas Sunset Commission Advisory Commission, which is currently reviewing the TMB. Made up of 12 members (five state senators, five state representatives and two public members), nine of their offices received a hard copy of a letter outlining significant concerns with the TMB and requested a meeting. All of them received phone calls. As of press time, only four members responded. The Sunset Commission administrative staff (email@example.com) has been responsive.
TMB’s Open Records Department stated, “We do not have an estimate of how much each hearing cost(s).”27 However, one lawmaker acknowledged from his capitol office, after learning details of the Burzynski ordeal for the first time, the math doesn’t add up for TMB to spend “that kind of money” in each of their other hearings (600-700 per year28 29 ). It turns out “that kind of money” is upwards of $177,868.95, the amount the TMB acknowledged they’ve spent on the current SOAH hearing with Burzynski.30 When asked to “show their math,” the TMB with an itemized breakdown leading to that figure, the TMB said that would likely take longer than 10 business days.31 Five more current or former Burzynski staff members, are likely headed to Austin for SOAH showdowns with TMB.
Since the TMB has been investigating Burzynski for nearly three decades, the overall taxpayer tab for TMB’s pursuit of his license isn’t known. It’s curious though, that the TMB spends so much on one man while apparently struggling to answer public phone calls for monetary reasons. Throughout the summer, calls to the TMB were met with an automated recording directing people to their website. One lawmaker and Sunset Advisory Commission member said TMB should be answering phone calls from the public and speculated that TMB was likely frustrated their budget remained stagnant while responsibilities increased.
The TMB brags that about 90 percent of cases are resolved before SOAH hearings become necessary32 and says, “The process is very fair, affording physicians 15 steps of due process.”33 But when asked if someone would be willing to answer questions on the record about their controversial enforcement, TMB said twice in June the request was forwarded to information office Jarrett Schneider, and a response was forthcoming, however it never came.34
In 2007, taxpayers funded a hearing vs. Dr. Robert Kuhne entirely over an $81 bill that should have only been $39 by TMB rules.35 Judges ruled in favor of Kuhne, but TMB still fined him $2,000 and required a “Medical Jurisprudence Examination.” Outcomes like this being public, combined with expensive legal defense costs and time away from the office, may explain why many Texas doctors quickly accept TMB sanctions rather than defend themselves in SOAH hearings versus Goliath.
If policy relief for cancer doctors is to come from outside of Texas, it might be from Vice President Joe Biden who recently bragged, “I’ve been to most every major cancer institution in the country” at his June Cancer Moonshot Summit.36 Dr. Burzynski joked there must be a lunar eclipse over his 100,000 square foot Houston facility which employs three Board Certified Oncologists, three internists, and a family practitioner. Biden has only entered the doors of that facility in the dreams of Burzynski’s former patients.
Privately, Dr. Burzynski questions if the TMB is spending as much money going after him as they are doctors accused of sexual abuse or overprescribing painkillers and other medications. When asked for numbers involving investigations or hearings regarding those matters during their last two fiscal years, TMB could only produce 15 examples from October 2013 to August 2015 in which it was successful in pulling a doctor’s license after similar accusations.37
TMB could be fertile ground for conflicts of interest via large pharmaceutical companies influencing board members who have the opportunity to suppress medical advances that would hurt pharmaceutical profits. For instance, TMB members Stanley Wang and George Willeford received a combined 229 financial contributions from various pharmaceutical companies in 2014 and 2015 alone. The money was in the form of mostly “food and beverage” transactions totaling $3,486.08.38 Another member, Karl Swann, was as an owner of Biomedical Enterprises, until 2014.39 All three members are on the 10-person disciplinary process review committee.40 There’s no evidence of wrongdoing by the distinguished trio, however with such little oversight, the potential exists for current or future board members to exploit the system with help from the hand that feeds them so well.
On June 3, 2011 Dr. Stanley Jones of Houston-based biotech Celltex, presented for an hour about stem cell treatment41, also not a “standard of care” treatment option. A year later, the FDA sent Celltex, a warning letter outlining 29 concerns.42 43 The TMB, apparently didn’t have similar concerns, and adopted stem-cell-friendly rules 10 months after Jones’ presentation.44
Jones injected his friend Rick Perry’s back with cells a month after presenting to the TMB45 46. Today, Perry’s back appears okay and his picture hangs proudly in the capitol for thousands of visitors to see. Meanwhile, Jessica Ressel and others, left for dead by the medical establishment, are still struggling to be seen and wondering who has their backs.
1Jessica Ressel’s Medical Records (Legally Obtained). Mid Atlantic Open MRI of Springfield (August 17, 1998), Missouri Eye Institute [May 29, 1997], Burzynski Clinic [May, 1996], St. Louis Children’s Hospital (April, 1996), Springfield Clinic (May, 1997)
3Humans of New York Facebook page [https://www.facebook.com/humansofnewyork/photos/a.102107073196735.4429.102099916530784/1257969297610501/?type=3&theater]
4Journal of Drug Research and Development (2003), 4 (2), P. 91-101
5Burzynski treatment records (with confidential patient identifying information removed)
6Texas Medical Board [http://www.tmb.state.tx.us/page/look-up-a-license]
7Children’s Nervous System (2014), 30 (12). P. 2051-2061
8Journal of Cancer Therapy (2015), 6, P. 334-344
9Cancer and Clinical Oncology (2015), 4 (2), P. 15-23
10Journal for the Society for Neuro-Oncology (2008), 10 (5), P. 821
11Journal of Cancer Therapy (2007), 5, P. 375-390
12Journal of Cancer Therapy (2015), 6 (12), P. 1063-1074
13Cancer and Clinical Oncology (2015), 4 (2), P. 13-23
14Cancer and Clinical Oncology (2015), 4 (1), P. 28-38
15Journal of Cancer Therapy (2014), 5, P. 946-956
16Journal of Pediatric Drugs (2006), 8 (3), P. 172
17Texas Medical Board [http://www.tmb.state.tx.us/page/look-up-a-license]
18Texas Medical Board [http://www.tmb.state.tx.us/page/look-up-a-license]
19Texas Medical Board [http://www.tmb.state.tx.us/page/enforcement]
20YouTube (2016) SOAH hearing footage [https://www.youtube.com/watch?v=txcaS79QbJw]
21YouTube (2016) SOAH hearing footage [https://www.youtube.com/watch?v=Kl1K_1YUTsA]
22Youtube (2016) SOAH hearing footage [https://www.youtube.com/watch?v=5V8UJA3MZh0]
23Youtube (1996) Congressional Subcommittee Hearing Footage [https://www.youtube.com/watch?v=cd3o57ZkX1U]
24Texas Capitol Website, H.B. No 21 “Right to Try Act” [http://www.capitol.state.tx.us/tlodocs/84R/billtext/pdf/HB00021F.pdf]
25Texas Tribune, April 21, 2015 [https://www.texastribune.org/2015/04/21/house-passes-right-try-bill/]
26YoutTube (2016) SOAH hearing footage [https://www.youtube.com/watch?v=Yf38-g2jYnY]
27Texas Medical Board, Email, May 31, 2016 from Christine Rodriguez at firstname.lastname@example.org
28Texas Medical Board [http://www.tmb.state.tx.us/dl/8B0AE62B-B621-1246-47D2-9C9B2752307C]
29Texas Medical Board, Email, May 31, 2016 from Christine Rodriguez at email@example.com
30Texas Medical Board, Email, July 15, 2016 from Christine Rodriguez at firstname.lastname@example.org
31Texas Medical Board, Email, July 21, 2016 from Christine Rodriguez at email@example.com
32Texas Medical Board [http://www.tmb.state.tx.us/page/enforcement]
33Texas Medical Board, Email, June 27 2016, from PRC Department at verification.CIC@tmb.state.tx.us
34Texas Medical Board, Emails, June 27 & June 30, 2016 from PRC Department at verification.CIC@tmb.state.tx.us
35State Office of Administrative Hearing Letter, May 11, 2007. Letter from SOAH Administrative Law Judge Wendy Harvel to Donald Patrick at TMB.
36The White House Youtube Channel [https://www.youtube.com/watch?v=qQRdxHPFGV0]
37Texas Medical Board, Email, July 20, 2016 from Christine Rodriguez at firstname.lastname@example.org
38Government Website [https://openpaymentsdata.cms.gov/]
39Government Website [https://openpaymentsdata.cms.gov/]
40Texas Medical Board [http://www.tmb.state.tx.us/idl/3BD87E95-1C6C-277F-0B6C-F4E57C802E68]
41Texas Medical Board, June 3, Meeting Minutes [http://www.tmb.state.tx.us/dl/5B546330-02DE-4632-0914-8869E085E080]
42Food and Drug Administration [http://www.fda.gov/ICECI/EnforcementActions/WarningLetters/2012/ucm323853.htm]
44Texas Tribune, April 13, 2012 [https://www.texastribune.org/2012/04/13/medical-board-adopts-controversial-stem-cell-rules/]
45ABC News, April 4, 2011 [http://abcnews.go.com/Politics/texas-gov-rick-perry-received-experimental-stem-cell/story?id=14232057].
46Texas Tribune, April 3, 2011 [https://www.texastribune.org/2011/08/03/perrys-surgery-included-experimental-stem-cell-the/)