Doctor accused of selling false hope to families

The 6-year-old boy had been fighting an inoperable brain tumor for 10
months. When his mother, Niasia Cotto, found him in his bed,
unresponsive and unable to open his eyes, "we knew there was nothing
else that we could do," she said.

An ambulance took Josia to a hospice room at a local hospital. His
parents covered him in a soft, blue-and-white blanket, hugged him and
held his small hand for the last time.

"We told him the choice was his, whether to keep fighting or be in
peace with God," said his mother. "He chose."

Josia's parents would have paid any price to save him.
A Texas doctor, two months, earlier, had given them one: $25,000
upfront, by cash or check.

Clinging to hope, the Linden, N.J., couple took Josia to see Stanislaw
Burzynski, a Houston doctor claiming to be able to do what no one else
can: cure inoperable pediatric brainstem tumors.

Virtually any other doctor might have recited the same sad statistics:
Although doctors can now cure 83% of pediatric cancers in the U.S.,
there is usually no hope for kids with Josia's tumor. Perhaps 5%
survive five years.

Burzynski — an internist with no board certification or formal training
in oncology — has said publicly that he can cure half of the estimated
200 children a year diagnosed with brainstem tumors. The Cottos were
told that treatment could cost over $100,000, mostly out of pocket,
because insurance plans often refuse to cover Burzynski Clinic
treatments.

Burzynski, 70, calls his drugs "antineoplastons" and says he has given
them to more than 8,000 patients since 1977.

He originally synthesized these sodium-rich drugs from blood and urine
— the urine collected from public parks, bars and penitentiaries.
Although they've been made in a lab since 1980, they still carry a
distinctive and unpleasant odor. And while the experimental drugs have
not been approved by the Food and Drug Administration, Burzynski has
described them like the holy grail of cancer therapy: safe, natural and
highly effective. He has also prescribed them as a treatment for AIDS,
lupus and other conditions.

Some patients are convinced that he saved their lives.

Mary Jo Siegel of Ventura, Calif., says she believes Burzynski cured
her lymphoma. James Treadwell from Coronado, Calif., credits Burzynski
with curing his brain tumor. Jenny Gettino of Syracuse, N.Y., says
Burzynski cured her daughter of an infant brain tumor.

Yet the National Cancer Institute says there is no evidence that
Burzynski has cured a single patient, or even helped one live longer.
He has not backed up his claims by publishing results from a
randomized, controlled trial — considered the gold standard of medical
evidence — in a respected, peer-reviewed journal.

And Burzynski's drugs pose a risk of serious harm, including coma,
swelling near the brain and death, according to the NCI and informed
consent documents that patients sign before beginning treatment. While
Burzynski has touted his treatments as an alternative to chemotherapy,
a 1999 NCI study found that antineoplastons can cause many of the same
side effects as conventional chemo: nausea, vomiting, headaches, muscle
pain, confusion and seizures.

Many blame the system for failing to protect patients.

"He's a snake oil salesman," says pediatric oncologist Peter Adamson, a
professor of pediatrics and pharmacology at Children's Hospital of
Philadelphia. "This has gone on for so many years, it's really
unbelievable."

For 36 years, critics say, Burzynski has been selling false hope to
desperate families at the most vulnerable time of their lives.

"When you want so hard to believe something, you end up listening to
your heart and not your head," says Lisa Merritt of Armuchee, Ga.,
whose husband, Wayne, was treated briefly by Burzynski in 2009. The
couple say that Burzynski misled them about the type of treatment that
would be offered, as well as the cost. Burzynski, she says, is "the
worst kind of predator."

There are many reasons why Burzynski has been able to stay in business
so long. He has benefited from state laws that limit the Texas Medical
Board's authority to remove his license, as well as the ability of
terminally ill patients to collect damages. His devoted followers are
willing to fight for him. He also has exploited the public's growing
fascination with alternative medicine and suspicion of the medical
establishment.

At times, Burzynski also has had an especially influential ally: the
Food and Drug Administration.

FDA CHANGES COURSE

Although "there were some stormy relations with the FDA" in the past,
Burzynski said in an interview, "now, we have a productive
relationship."

For years, the FDA tried to prevent Burzynski from prescribing
unapproved drugs.

In 1995, a federal grand jury indicted Burzynski on 75 felony charges,
including criminal contempt, mail fraud and violations of the Food,
Drug and Cosmetic Act. As a condition of his bail, a judge ordered him
to stop prescribing antineoplastons. For a time, it looked as if
Burzynski might never treat another patient.

Dozens of Burzynski's patients flocked to Washington to defend him,
arguing that taking away antineoplastons was akin to a death sentence.
Siegel, who credits Burzynski with curing her lymphoma 22 years ago,
has testified on his behalf five times — once at his criminal trial and
four times at hearings on Capitol Hill.

Facing both a political and public relations firestorm, the FDA in 1996
abruptly changed course. It offered to allow Burzynski to continue
treating patients, but only through an official trial.

"With one stroke of the pen, the FDA made legal what it had previously
said was illegal," says Burzynski's attorney, Richard Jaffe.
Yet even Jaffe has acknowledged that the trial — now in its 17th year —
was more about politics than science. In his 2008 memoirs, Galileo's
Lawyer, Jaffe called it "a joke."
"It was all an artifice, a vehicle we and the FDA created to legally
give the patients Burzynski's treatment," Jaffe said.
"With political help, you can get the FDA to say yes," says Siegel, 63.
The indictments led to two trials. In 1997, one of Burzynski's criminal
trials ended in a hung jury; the other, an acquittal.
Today, the FDA refuses to comment on Burzynski.

NO NEW DRUG APPLICATION

Even his staunchest supporters wonder why Burzynski's drugs are nowhere
close to receiving FDA approval.
"He's curing cancer," says Siegel, who co-founded the Burzynski Patient
Group to spread the word about his therapies. "So why, why won't the
FDA approve it?"

Like many of Burzynski's supporters, Siegel suspects that the medical
community and drug industry are aligned against him.
"Why does a doctor who can produce such extraordinary results continue
to be attacked today?" Siegel asks. "The reason is because Dr.
Burzynski and his patented discovery pose the greatest threat to an
entrenched medical monopoly."

In fact, the FDA hasn't had a chance to approve Burzynski's drugs. He
has never officially asked.

Although Burzynski said he has completed 14 intermediate-phase studies,
he has yet to file a new drug application, the final step toward
getting a drug approved.

That hasn't stopped Burzynski from using his relationship with the FDA
to recruit patients.

Stacey Huntington says she took her daughter to see Burzynski last year
partly because the FDA's oversight made his therapies seem safer and
more promising. "My fear took us to Houston, and the hope he gave us
made us proceed," says Huntington, of Chehalis, Wash.

In an interview, Burzynski said developing new drugs is complex and
takes time.

Yet the FDA has approved 108 cancer drugs since Burzynski began his
trial.

Cure rates for one type of pediatric brain tumor — medulloblastoma —
are now 85%, according to St. Jude Children's Research Hospital in
Memphis. Doctors can cure 95% of kids with Hodgkin lymphoma (a cancer
of the lymph system), acute lymphoblastic leukemia (a blood cancer) and
retinoblastoma (an eye tumor).

Fran Visco, president of the National Breast Cancer Coalition,
describes the FDA's tolerance of Burzynski as "outrageous."

"They have put people at risk for a long time," says Visco, an attorney
and breast cancer survivor. "That's completely unacceptable. How can
anyone look at these facts and believe that there is a real clinical
trial going on ... rather than just using the FDA and the clinical
trial system to make money?"

Burzynski dismisses criticism of his work, referring to his detractors
as "hooligans" and "hired assassins."

As for criticism from former patients, Burzynski says, "We see patients
from various walks of life. We see great people. We see crooks. We have
prostitutes. We have thieves. We have mafia bosses. We have Secret
Service agents. Many people are coming to us, OK? Not all of them are
the greatest people in the world. And many of them would like to get
money from us. They pretend they got sick and they would like to extort
money from us."

History will vindicate him, Burzynski says, just as it has vindicated
other persecuted medical "pioneers," such as Louis Pasteur. In the
future, Burzynski says, everyone will use his therapies, and the cancer
treatments used today — such as surgery, chemotherapy and radiation —
will be regarded as barbaric. "There will be a time when people will
see the light," he says, "and our treatments will be used by everyone."

FDA IMPOSES NEW RESTRICTIONS

The FDA's patience with Burzynski apparently wore out after Josia died.
In a report sent to the FDA after the boy's death, Burzynski's staff
acknowledged that his last blood sample, taken the day he passed
away,showed a blood sodium level of 205 millimoles per liter, a level
that is typically fatal. Burzynski's staff blamed that reading on a
"false laboratory report based on a contaminated sample."
Yet hypernatremia is one of antineoplastons' most common side effects,
known to doctors for two decades.

One of Burzynski's own informed consent documents — the form that
patients sign before they begin treatment — put the risk at 21%.

On July 30, 2012 — six weeks after Josia's death — the FDA forbade
Burzynski from giving antineoplastons to any new children.

Six months later, the FDA expanded its "partial clinical hold,"
forbidding Burzynski from giving the drugs to new adult patients,
according to the Burzynski Research Institute's 2013 filing to the
Securities and Exchange Commission. About 10 patients who were already
receiving antineoplastons were allowed to continue, to avoid
interruption of care.

According to FDA inspections performed after Josia's death, Burzynski
has failed to report at least 18 hypernatremia cases.

The FDA publicly announced the restrictions on Burzynski's clinical
trial for the first time in September.

According to the FDA, the Burzynski institutional review board — an
outside body charged with protecting patients — failed that most basic
duty. In a letter announcing the restrictions, the agency said it has
"no assurance" that the board was "adequately protecting the rights and
welfare of the human subjects."

The FDA based its decision on "objectionable conditions" and a
"continuing pattern of deficiencies found during the last three
inspections," the letter said.

FDA inspectors also faulted Burzynski personally, as principal
investigator of the study, according to inspections conducted from
January to March. Copies of these reports were obtained through a
Freedom of Information Act request. Addressing Burzynski, the
inspectors wrote, "you failed to protect the rights, safety and welfare
of subjects under your care."

Inspectors charged Burzynski, as principal investigator, with a variety
of other serious offenses, some dating to 2001. Among them:

• Inflating success rates in 67% of cases, by inaccurately reporting
how tumors responded to treatment.

• Destroying patients' original records.

• Failing to report "unanticipated problems" to the institutional
review board — sometimes for six or seven years.

In the inspections conducted this spring, officials noted four cases
from 1998 or 1999 in which patients were hospitalized for serious
issues — such as pneumonia, lack of consciousness or bleeding in the
skull — that Burzynski researchers failed to report until 2005. The FDA
found similar problems in a 2001 inspection, when officials noted that
Burzynski failed to report problems such as pneumonia, blood infections
and pancreatitis, a life-threatening inflammation of the pancreas.

• Failing to protect patients from overdosing.

Forty-eight patients suffered a total of 102 drug overdoses from 2005
to 2013.

While the overdoses made some of these patients excessively sleepy, one
had a seizure and another was hospitalized in intensive care with a
breathing tube.

This represents a continuing problem, dating to reports of overdoses in
inspections as early as 2001.

Burzynski's review board also repeatedly rubber-stamped his requests to
give patients antineoplastons outside of a clinical trial, the FDA's
September letter suggests. In some cases, those decisions were made
without consulting patients' medical records, or were made not by
oncologists, but by a single member of the board, a "water
rehabilitation" specialist with no medical training.

Although researchers do sometimes provide experimental drugs outside of
clinical trials, exceptions should be rare, with perhaps one or two
cases per trial, Adamson says. In Burzynski's case, these
"compassionate use" exceptions were common, FDA records show.

Enrolling patients for compassionate use can be lucrative. Although
researchers cannot charge for experimental drugs, Burzynski does bill
patients for related supplies and services.

In Burzynski's defense, Jaffe notes that inspection reports represent
preliminary findings. The FDA has not yet issued final conclusions.

And Burzynski has taken issue with many of the FDA's findings.

In his written response about the FDA's claims that he inflated his
success rates, Burzynski said that he "complied with all criteria for
evaluation of response and made accurate assessments for tumor
response."

As for overdoses, Burzynski said in an interview that his staff works
hard to train patients and their families to administer antineoplastons
correctly.

None of the overdoses was fatal, he said.

"The amount of medication that these patients receive is not
dangerous," Burzynski said. "At worst, they would sleep for a few
hours."

Visco, the breast cancer advocate, says she's encouraged to hear that
the FDA has put Burzynski's trial on hold.

"It is about time that the FDA stepped in to stop Burzynski from
subjecting more patients to harm," she says. "I do not know why it took
so long."

BURZYNSKI STILL HAS OPTIONS

The FDA can't put Burzynski out of business. No matter what happens to
his trial, Burzynski holds a license to practice medicine in Texas.

So does his son, Gregory Burzynski, a doctor who's helping to carry on
his father's business. As vice president of the Burzynski Clinic, his
son, 34, works closely with his father and "oversees many operations"
of the clinic, according to its website.

These days, doctors at the Burzynski Clinic are looking beyond
antineoplastons. They mostly prescribe chemotherapy.

That's a huge shift. During Burzynski's criminal trial in the 1990s,
patients who rallied to his defense carried signs reading, "Say No to
Chemo."

But the Texas Medical Board, which has repeatedly tried and failed to
put Burzynski out of business over the years, still questions
Burzynski's care.

The board charged Burzynski in 2010 with violating state medical
standards by prescribing legal cancer drugs in "random" and unapproved
combinations, with no known benefits but clear harms.

Burzynski got those charges dropped in 2012, by successfully arguing
that he didn't sign any of the prescriptions in question.

Burzynski is scheduled to go before the medical board again in January,
based on a complaint filed by Stacey Huntington, whose daughter was
treated with antineoplastons for a brain tumor. At the meeting, a board
panel "will hear the case and make recommendation to the full board
about what disciplinary action, if any, is appropriate."

Huntington, who paid Burzynski nearly $34,000 for about six weeks of
care, says she's concerned about both billing irregularities and the
quality of her daughter's treatment. Her daughter, Abra Hall, 27,
developed a life-threatening blood infection called sepsis after
leaving the clinic to continue treatment at home. The infection
developed in a catheter in Hall's chest, which was used to administer
the antineoplastons, Huntington says. One month after developing
sepsis, Hall was hospitalized again with a lung infection. Hall also
developed serious complications from high doses of steroids, Huntington
says.

Huntington says she decided to speak out to prevent other families from
being taken advantage of.

"When you get a diagnosis of cancer, you are pretty vulnerable," she
says. "I think they take advantage of that."

Niasia and Jose Cotto hold a photo of son Josia in their Linden, N.J.,
home on Oct. 12. The boy died of a brain tumor.
No one told Josia's parents about any of this.
Not Burzynski. Not the FDA.
Jose and Niasia Cotto had no idea that their son's death prompted an
investigation by the FDA, until they were contacted by USA TODAY.
The Cottos had long believed that Burzynski could have cured their son
if only they had taken Josia to see him first, before giving him
radiation and chemotherapy. They had even hoped to launch a non-profit,
A Life for Josia Foundation, to help other children with cancer gain
access to Burzynski's treatment.
Now, they don't know what to think.
Although more than a year has passed since they lost their son, the
Cottos say they see reminders of him everywhere. Niasia, 32, says she
feels his presence in simple things, such as the light of a bright star
on a dark night.
"He's still with us," says Jose, 33. "I know God had his plan and his
purpose for Josia."
Doctor Stanislaw Burzynski makes his way to the federal courthouse for
jury selection in his 1997 criminal trial, as supporters demonstrate
outside the courthouse Jan. 6, 1997, in Houston. Burzynski pleaded
innocent to a 75-count federal indictment that charged him with mail
fraud and violating Food and Drug Administration regulations in the use
of antineoplastons, experimental substances he created to treat cancer.
One of his criminal trials ended in a hung jury. In the other, he was
acquitted.

Stanislaw Burzynski, 70, opened his Houston clinic in 1977. He said he
has treated more than 8,000 patients with experimental substances that
he calls antineoplastons, and has treated around 15,000 patients during
his career. The Food and Drug Administration has allowed him to test
antineoplastons legally through a clinical trial.

Politicians rallied around doctor Stanislaw Burzynski in the 1990s,
when he was prosecuted for mail fraud and other felonies. Georgia state
Sen. Ed Gochenour spoke during a rally May 19, 1997, outside the
federal courthouse in Houston. Gochenour was a patient of the
controversial doctor. He died from a pulmonary embolism in 1999.

Walter Murach comforts his wife, Barbara, as he carries her medicine
distributor during a demonstration to show support for doctor Stanislaw
Burzynski on Jan. 2, 1997, outside the federal courthouse in Houston.
She had been diagnosed with ovarian cancer and was a patient of
Burzynski's. Burzynski pleaded innocent to a 75-count federal
indictment that charged him with mail fraud and violating Food and Drug
Administration regulations in the use of his experimental drugs, which
he calls antineoplastons. The indictments resulted in two criminal
trials. In 1997, one ended in a hung jury; the other, an acquittal.

Niasia and Jose Cotto hold a photo of their 6-year-old son, Josia. They
took Josia to see doctor Stanislaw Burzynski last year, hoping that he
would cure their son's inoperable brain tumor. Josia died two months
after beginning treatment in June 2012. Josia's younger brother,
1-year-old Noah, is seen here with his parents at their home in Linden,
N.J.

Abra Hall, 27, still has purple stretch marks on her skin, caused by
Cushing syndrome, which she developed after taking high doses of
steroids that she received at the Burzynski Research Institute, where
she was treated in 2012 for a brain tumor. Cushing syndrome also caused
her to gain a lot weight. Hall has an advanced, inoperable brain tumor,
but sought treatment from Burzynski because her family urged her to
seek alternatives to radiation and chemotherapy. Hall said she
abandoned the Burzynski treatment after developing serious side effects
and has since received conventional cancer care -- including radiation
and chemotherapy.

Abra Hall, of Chehalis, Wash., says her chemotherapy cancer treatment
makes her feel fatigued and sensitive to light. Hall went to the
Burzynski Research Institute in Houston for experimental drug
treatments until severe complications forced her to stop taking
Burzynski's experimental therapies, which included substances that he
synthesized, called antineoplastons, as well as other drugs.
Abra Hall's mother, Stacey Huntington, borrowed $40,000 from friends
and family to pay for her medical care, as well as travel and hotel
expenses related to staying in Houston while being treated at the
Burzynski Research Institute. Like many other Burzynski patients, she
created a website to solicit donations. Other patients' families hold
fundraisers and turn to the media for help, telling their stories in
newspapers and on local TV.

Many of Abra Hall's friends offered to pitch in to help pay for her
cancer treatment. She's one of many Burzynski patients who rely on
community help. In many cases, schools and local businesses hold
charity events to help patients raise money. "When you get a diagnosis
like cancer, you are pretty vulnerable," says Stacey Huntington, Abra
Hall's mother. "I think they take advantage of that."

Stacey Huntington, left, was desperate with worry when she took her
daughter, Abra Hall, to see Stanislaw Burzynski. She now says he preyed
on her vulnerability. "In the initial meeting with Burzynski, he
himself claimed a minimum 40% cure rate," says Huntington of Chehalis,
Wash. "He is selling hope to dying people."

Wayne Merritt, a farmer from Armuchee, Ga., went to see Burzynski in
2009 after being diagnosed with pancreatic cancer. He had hoped to
receive antineoplastons, an unapproved drug that Burzynski legally
prescribes through an FDA-approved clinical trial. Merritt didn't
qualify for the trial, and was disappointed to realize that the drugs
he had been prescribed were conventional chemotherapy. Merritt
abandoned the treatments after only a few weeks after learning that
they would cost $30,000 a month.

Lisa Merritt keeps this note on her kitchen window declaring her
husband, Wayne, has been healed of cancer. He sought other care after
abandoning the Burzynski Clinic.

Wayne Merritt and his wife, Lisa, say they got a "high-pressure sales
pitch" from the Burzynski Clinic. "We felt like he was out to get every
penny he could get from us in a short amount of time," said Lisa
Merritt, from Armuchee, Ga. The Merritts, who tell their story at
burzynskiscam.com, said one of Burzynski's employees, Marc Stephens,
called them in 2011 to say that they could face legal action if they
did not take down the site. The couple refused, said Lisa Merritt, also
a cancer survivor. "I said, 'I have had breast cancer and faced death.
My husband was diagnosed with pancreatic cancer and he's facing death,'
" Lisa Merritt told Burzynski's representative at the time. "What do
you think you can threaten us with that is going to scare me after
this?'"


Jim Treadwell walks with his wife, Victoria, near their home in
Coronado, Calif. He was diagnosed with an aggressive brain tumor in
2004 and underwent surgery, chemotherapy and radiation. At the
conclusion of treatment, his doctors told him there was nothing more
they could do for him, Treadwell said. He decided to see Burzynski and
enrolled in an FDA-approved clinical trial of antineoplastons, given
along with steroids and other medications. Treadwell developed serious
side effects after beginning therapy, including congestive heart
failure, liver problems and swelling. He stopped taking antineoplastons
after six months, but his cancer has not returned. Victoria Treadwell
wrote a book detailing their experiences. Although many oncologists are
skeptical of Burzynski’s success stories, Treadwell, a retired
lieutenant colonel in the Marines, is convinced the antineoplastons
cured his brain tumor. “I really don’t care what people
think," he says. "We know what we know."

An employee walks past a sign whose letters were rearranged by patients
of doctor Stanislaw Burzynski years ago to read: "Hope Exists" at his
clinic. Stanislaw Burzynski has treated patients with drugs that he
calls antineoplastons since the 1970s. Although the drugs are
experimental, the FDA allowed Burzynski to dispense them legally,
through a clinical trial, in 1996. That trial is now on hold, and no
new patients may received the drugs, according to the FDA. Burzynski
also is scheduled to appear before the Texas Medical Board in January.

Doctor Stanislaw Burzynski makes his way to the federal courthouse
for jury selection in his 1997 criminal trial, as supporters
demonstrate outside the courthouse Jan. 6, 1997, in Houston.
Burzynski pleaded innocent to a 75-count federal indictment that
charged him with mail fraud and violating Food and Drug
Administration regulations in the use of antineoplastons,
experimental substances he created to treat cancer. One of his
criminal trials ended in a hung jury. In the other, he was
acquitted.
Stanislaw Burzynski, 70, opened his Houston clinic in 1977. He said
he has treated more than 8,000 patients with experimental
substances that he calls antineoplastons, and has treated around
15,000 patients during his career. The Food and Drug Administration
has allowed him to test antineoplastons legally through a clinical
trial.
Politicians rallied around doctor Stanislaw Burzynski in the 1990s,
when he was prosecuted for mail fraud and other felonies. Georgia
state Sen. Ed Gochenour spoke during a rally May 19, 1997, outside
the federal courthouse in Houston. Gochenour was a patient of the
controversial doctor. He died from a pulmonary embolism in 1999.
Walter Murach comforts his wife, Barbara, as he carries her
medicine distributor during a demonstration to show support for
doctor Stanislaw Burzynski on Jan. 2, 1997, outside the federal
courthouse in Houston. She had been diagnosed with ovarian cancer
and was a patient of Burzynski's. Burzynski pleaded innocent to a
75-count federal indictment that charged him with mail fraud and
violating Food and Drug Administration regulations in the use of
his experimental drugs, which he calls antineoplastons. The
indictments resulted in two criminal trials. In 1997, one ended in
a hung jury; the other, an acquittal.
Niasia and Jose Cotto hold a photo of their 6-year-old son, Josia.
They took Josia to see doctor Stanislaw Burzynski last year, hoping
that he would cure their son's inoperable brain tumor. Josia died
two months after beginning treatment in June 2012. Josia's younger
brother, 1-year-old Noah, is seen here with his parents at their
home in Linden, N.J.
Abra Hall, 27, still has purple stretch marks on her skin, caused
by Cushing syndrome, which she developed after taking high doses of
steroids that she received at the Burzynski Research Institute,
where she was treated in 2012 for a brain tumor. Cushing syndrome
also caused her to gain a lot weight. Hall has an advanced,
inoperable brain tumor, but sought treatment from Burzynski because
her family urged her to seek alternatives to radiation and
chemotherapy. Hall said she abandoned the Burzynski treatment after
developing serious side effects and has since received conventional
cancer care -- including radiation and chemotherapy.
Abra Hall developed life-threatening complications after returning
home from the Burzynski Research Institute, where she and her
caregivers continued to administer antineoplastons themselves
through a catheter in her chest. Hall was hospitalized for a
dangerous blood infection called sepsis, which developed after the
catheter became infected. She later developed pneumonia. She has
recovered from those infections and is now getting conventional
treatment, including oral chemotherapy medications.
Abra Hall, of Chehalis, Wash., says her chemotherapy cancer
treatment makes her feel fatigued and sensitive to light. Hall went
to the Burzynski Research Institute in Houston for experimental
drug treatments until severe complications forced her to stop
taking Burzynski's experimental therapies, which included
substances that he synthesized, called antineoplastons, as well as
other drugs.
Abra Hall's mother, Stacey Huntington, borrowed $40,000 from
friends and family to pay for her medical care, as well as travel
and hotel expenses related to staying in Houston while being
treated at the Burzynski Research Institute. Like many other
Burzynski patients, she created a website to solicit donations.
Other patients' families hold fundraisers and turn to the media for
help, telling their stories in newspapers and on local TV.
Many of Abra Hall's friends offered to pitch in to help pay for her
cancer treatment. She's one of many Burzynski patients who rely on
community help. In many cases, schools and local businesses hold
charity events to help patients raise money. "When you get a
diagnosis like cancer, you are pretty vulnerable," says Stacey
Huntington, Abra Hall's mother. "I think they take advantage of
that."
Stacey Huntington, left, was desperate with worry when she took her
daughter, Abra Hall, to see Stanislaw Burzynski. She now says he
preyed on her vulnerability. "In the initial meeting with
Burzynski, he himself claimed a minimum 40% cure rate," says
Huntington of Chehalis, Wash. "He is selling hope to dying people."
Wayne Merritt, a farmer from Armuchee, Ga., went to see Burzynski
in 2009 after being diagnosed with pancreatic cancer. He had hoped
to receive antineoplastons, an unapproved drug that Burzynski
legally prescribes through an FDA-approved clinical trial. Merritt
didn't qualify for the trial, and was disappointed to realize that
the drugs he had been prescribed were conventional chemotherapy.
Merritt abandoned the treatments after only a few weeks after
learning that they would cost $30,000 a month.
Lisa Merritt keeps this note on her kitchen window declaring her
husband, Wayne, has been healed of cancer. He sought other care
after abandoning the Burzynski Clinic.
Wayne Merritt and his wife, Lisa, say they got a "high-pressure
sales pitch" from the Burzynski Clinic. "We felt like he was out to
get every penny he could get from us in a short amount of time,"
said Lisa Merritt, from Armuchee, Ga. The Merritts, who tell their
story at burzynskiscam.com, said one of Burzynski's employees, Marc
Stephens, called them in 2011 to say that they could face legal
action if they did not take down the site. The couple refused, said
Lisa Merritt, also a cancer survivor. "I said, 'I have had breast
cancer and faced death. My husband was diagnosed with pancreatic
cancer and he's facing death,' " Lisa Merritt told Burzynski's
representative at the time. "What do you think you can threaten us
with that is going to scare me after this?'"
Jim Treadwell walks with his wife, Victoria, near their home in
Coronado, Calif. He was diagnosed with an aggressive brain tumor in
2004 and underwent surgery, chemotherapy and radiation. At the
conclusion of treatment, his doctors told him there was nothing
more they could do for him, Treadwell said. He decided to see
Burzynski and enrolled in an FDA-approved clinical trial of
antineoplastons, given along with steroids and other medications.
Treadwell developed serious side effects after beginning therapy,
including congestive heart failure, liver problems and swelling. He
stopped taking antineoplastons after six months, but his cancer has
not returned. Victoria Treadwell wrote a book detailing their
experiences. Although many oncologists are skeptical of
Burzynski’s success stories, Treadwell, a retired lieutenant
colonel in the Marines, is convinced the antineoplastons cured his
brain tumor. “I really don’t care what people think,"
he says. "We know what we know."
An employee walks past a sign whose letters were rearranged by
patients of doctor Stanislaw Burzynski years ago to read: "Hope
Exists" at his clinic. Stanislaw Burzynski has treated patients
with drugs that he calls antineoplastons since the 1970s. Although
the drugs are experimental, the FDA allowed Burzynski to dispense
them legally, through a clinical trial, in 1996. That trial is now
on hold, and no new patients may received the drugs, according to
the FDA. Burzynski also is scheduled to appear before the Texas
Medical Board in January.