FDA Denies Hope for Dying Kids, and Other Abuses Waged Against
Families Struggling to Help Their Ailing Children
March 25, 2014
Story at-a-glance
The FDA is condemning children to death by refusing to allow
them access to experimental cancer treatments, even though
it has the authority to grant such access to terminal
patients who have not responded to conventional treatment
Six years ago, 10-year-old Braiden was enrolled in a
clinical trial for his incurable brain tumor. The
“experimental” drug Antineoplaston (ANP) was the sole
treating agent. He went into full remission, and suffered no
toxic side effects
An MRI recently revealed Braiden’s tumor has reoccurred. The
FDA is now refusing to allow Braiden to go back on ANP even
though the treatment has already proven its efficacy through
his previous remission
Many other terminal patients are also being prevented from
accessing ANP. The only available remedy that could possibly
act in time to save these children is a political response
to the indifference of the FDA
The ANP Coalition (ANPC) has been formed for the purpose of
organizing the parents of these children to launch a
political campaign to allow them access to ANP
Guest Commentary by Ric Schiff
It is often argued that the most heinous crimes that can be
committed in our society are those committed against children.
Defenseless children, who rely on the greater values and
morality of society to provide for their safety, their growth
and development.
But what happens when the government stands between parents
and the possible cure for their child's terminal illness? Take
the following case for example. (The full story of Braiden
Norton can be found on his Website, www.BraidenNorton.com.)
"Six years ago, 10-year-old Braiden was enrolled in a
clinical trial for his incurable brain tumor. The
'experimental' drug Antineoplaston (ANP) was the sole
treating agent. Braiden had been in full remission for the
last two years and had suffered no toxic side effects.
Last December, an MRI revealed that Braiden has a
reoccurrence of the tumor. Reoccurrence of aggressive brain
tumors after treatment is very common; it is the reaction of
the FDA that was unexpected!
The FDA is refusing to allow Braiden to go back on
ANP even though the treatment has already proven its
efficacy through his previous remission. The FDA has no
legitimate rationale for sentencing Braiden to die. The
FDA's response to his father, who asked to place his son
back on ANP, was to recommend that Braiden receive
experimental radiation and chemo treatments. Both are known
to be ineffective for Braiden's type of tumor."
FDA Denies Hope for Dying Children
The FDA is the sole federal agency charged with the authority
to grant compassionate use or "expanded access" for the
terminally ill to experimental and as-of-yet unapproved drugs.
This emergency access is meant to provide terminal patients like
Braiden some possibility of hope when conventional treatments
offer no curative possibilities.
The reality is that the FDA couldn't care less about your
welfare or last chance at hope. The FDA's decision-making
process is designed to be a regulatory bureaucratic nightmare
that is virtually impossible to understand or successfully
navigate through, especially when every minute wasted allows an
aggressive tumor more time to grow. Clearly preventing Braiden
from receiving a treatment that has already shown to be
effective is not in the child's best medical interest… so why is
the FDA making this decision?
There is an FDA Compassionate Use process that should enable
patients immediate access to potentially lifesaving medications,
but the FDA is blocking any avenue that these children have to
ANP. The FDA's compassionate expanded access process, while
meant to look reasonable, is nothing short of a nightmare when
parents try to use it.
The story of ANP brings to light some very interesting
anomalies with respect to how cancer is dealt with in the US,
both medically (called "standard of care"), and with respect to
the FDA's new drug approval process. ANP is a self-infused
anticancer agent that can be dispensed on an out-patient basis.
When it is successful, the patient can continue to live a fairly
normal life as side effects tend to be relatively benign and
short term. This makes the treatment much more desirable over
conventional treatments, which would certainly lead to economic
misfortune for the cancer industry if patients knew and
understood the difference between these two types of treatments.
Instead of fast-tracking ANP for the good of all, the FDA seems
bent on curtailing its use whenever possible.
Lives Are Hanging in the Balance...
In addition to Braiden, there are eight other patients who
have failed to achieve results through conventional treatments
and are in immediate need of ANP. Each of these patients never
had a chance of remission using their initial toxic modalities;
it was simply all that was offered!
What is even more shocking is that these initial treatments were
actually experimental and proven to have no curative response in
advanced brain tumors. In most cases, patients are actually
forced by the FDA to subject themselves or their children to
these treatments in spite of the fact that the FDA, and treating
physicians, knows that they are not curative.
ANP offers a significant probability of survival to these
patients and the FDA is well aware of that fact. Recently
concluded ANP clinical trials showed ANP had greater efficacy
for the treatment of brain tumors than all other clinical trials
ever completed put together! But the FDA is demanding more.
Under a compassionate request, it is established that there is
no other treatment option. It is by definition a last ditch Hail
Mary pass meant to save a life using an experimental
(unapproved) treatment. There is virtually no legitimate
argument for preventing these patients from receiving ANP
because there is nothing that can be lost. They're already
dying.
Please Stand Up for These Children's Right to Compassionate Care
The only available remedy that could possibly act in time to
save these children is a political response to the indifference
of the FDA. A nonprofit has been formed for this purpose, called
the ANP Coalition (ANPC), a nonprofit 501c4. ANPC has
organized the parents of these children to launch a political
campaign to force the FDA to allow these children and other
patients access to ANP.
ANPC is an organization made up of unpaid volunteers from all
walks of life; decorated police officers, firefighters, nurses,
house wives, and professionals. You can visit their Website at
www.ANPcoalition.org
to learn more about the patients being denied treatment, and
what you can do to help. It is the obligation of
science to make a better world for us all, but it is our
obligation to deny special interests the opportunity to subvert
that world! Examples of actions you can take to
make a difference include:
Make a donation to help further the goals of the ANPC
Subscribe to the ANPC Website to receive the latest
updates and action items
Help spread the word about ANPC by sharing this
information
Respond to periodic requests for support, and/or contact
ANPC to volunteer your time, skills or other resources, all
of which are extremely valuable to us
The ANPC represent the following nine patients, all of whom
suffer from terminal cancer that has not responded to
conventional treatments, and have been denied access to ANP.
Six-Year-Old Luis
"Our six-year-old son Luis
started to complain about headaches. We noticed that they
were becoming more frequent and that Motrin wasn't providing
any relief so we took him to our doctor. Luis was diagnosed
with a strep throat. Two days later, Luis became sick at
school. We took Luis to the emergency room where MRIs
revealed an inoperable brain tumor.
Doctors gave Luis a month
to live without treatment. He has received radiation, but
the tumor is now progressing. This was so hard for us to
take, but then we realized that the only one that can decide
how long Luis will live is God. We have put our son in his
hands and we believe that he has listened to our prayers by
putting antineoplastons (ANP) in our lives. Even though
doctors have said Luis has only a few months to live after
the radiation treatment that he received, I believe our
miracle is here! Please help our children!"
Sadly, time ran out for Luis. He passed away March 11. Our
thoughts and prayers go out to his grieving family members.
Three-Year-Old Rose
"Rose is our beautiful
three-year-old daughter. She loves to sing and dance and
make up her own jokes. She can light up a room and put a big
smile on anyone's face when she walks through the door. At
two months old, Rose was diagnosed with brain cancer.
Because the tumor surrounds her optic nerves, it has caused
Rose to become blind.
The tumors are still
growing and they not only threaten what little is left of
her eyesight, but they also threaten her life. Rose's body
rejected chemotherapy. Chemotherapy would have killed Rose
before her tumors if she had continued the regimen
originally prescribed by her doctors. We are petitioning the
government to get Antineoplaston (ANP) treatment to save
Rose's life and give her the best chance to recover sight."
Ten-Year-Old Braiden
"My son Braiden was diagnosed with a JPA low grade
tumor when he was just one-year-old. I took him to the
Burzynski Clinic where he was accepted to be in a phase 2
clinical trial using Antineoplastons (ANP). Braiden was on
this treatment for four years from the ages of 2-6. During
treatment his tumor shrunk and became inactive. From the
beginning of treatment up until this very day, Braiden lives
a healthy lifestyle, with no debilitating side effects.
Braiden has been off any treatment and without any
medications for the past two years. Unfortunately, his last
MRI showed tumor growth to a degree where every physician
involved unilaterally agrees that action must be taken.
Because my son has been off ANP treatment for the
past two years, the FDA puts him in a 'new patient' category
and refuses to allow Braiden to receive ANP! We cannot
afford to let a bureaucratic FDA make medical decisions for
my son based on their own political agenda! Clearly my son
deserves the best treatment possible; the same treatment
that has given him a happy and healthy life up until this
point. Please add your voice to ours and help us fight this
insanity! " Learn more on
Braiden Website.
Liza, Age 46
"Liza lives in California
where she is a former attorney and entrepreneur. She is
seeking Antineoplastons for a DIPG tumor and has created a
government
petition on Change.org. Her husband, David, is the
drummer in the Sammy Hagar band and they had a concert for
Liza on February 12th in the San Francisco Bay Area."
To learn more, please visit
Liza's Website.
Seven-Year-Old Laura
"Laura, age seven, in Canada is seeking
Antineoplastons for a DIPG tumor. This beautiful girl enjoys
swimming, soccer, reading, playing with animals, and
spending time with family and friends." For more
information, please visit
Laura's Website. Laura also has a
government petition that you can sign.
Five-Year-Old Isaac
"Isaac is five years old and has a stage IV tumor on
the thalamus, a Glioblastoma Mutiforme. He's been given six
months to live, and it is now two months into that
diagnosis. His mother has received seven different opinions
from oncologists, neurosurgeons, neurologists, and
pathologists and has chosen some alternative therapies
instead of toxins because chemo would only add on a few
weeks and cause suffering and pain." Please see
Isaac's
GoFundMe page to make a donation, or connect on
Facebook.
Twelve-Year-Old McKenzie
"McKenzie, age 12, lives in
New Hampshire. Her family is asking for the use of
Antineoplastons for her DIPG tumor. Please sign her
petition to be granted Compassionate Use of ANP. This
beautiful girl loves all animals and hopes to be a
veterinarian someday."
About the Author:
Ric Schiff, a police sergeant with the San Francisco
Police Department, lost one of his young daughters to side
effects of chemotherapy. She died, cancer-free, after ANP had
eliminated her brain tumors. The autopsy confirmed her death was
a result of the chemotherapy and radiation she'd endured prior
to receiving ANP. His story was previously published in the
article, "May
Alleviate Cancer Without Chemo, But It's Forbidden."
By Dr. Mercola
Medical injustices are becoming more routine and children
seem to be the most vulnerable to such actions. You may have
heard about the case of 15-year-old Justina Pelletier, who was
removed from her parents' custody by Massachusetts child
protection officials after the Boston Children's Hospital filed
a "medical child abuse" complaint against them, following a
dispute over Justina's medical diagnosis.
The state kept the teen hospitalized for close to a year, and
wanted to place her in private foster care. According to the
Pelletier's, Justina suffers from a genetic mitochondrial
disorder, causing her gut, brain, and muscle problems. She
received treatment for this condition at Tufts Medical Center in
Boston. In February 2013, Justina was brought to the Boston
Children's Hospital, where doctors disagreed with the diagnosis,
claiming her eating and walking difficulties were psychological.
As reported by The Boston Globe:1
"Justina stayed at Children's, for much of the time
in a locked psychiatric ward, until last month, when she was
moved to Wayside Youth and Family Support Network in
Framingham. The case has exposed the often fuzzy line
between psychiatric and physical illnesses and highlighted
the growing use of the term medical child abuse, which can
be attached to parents seen to be pushing for unnecessary
and potentially harmful interventions for their children."
Justice for Justina
The Pelletier's have fought to have Justina returned to
Tufts, and finally, after public protests, the Massachusetts
Department of Children and Families (DCF) has agreed to let her
return to Tufts for medical treatment.2
Not every case ends this well, as Ric Schiff's article attests.
I recently also published an interview with
Dr. David Ayoub, discussing how infantile rickets is being
misdiagnosed as child abuse, placing innocent parents in jail.
Then there's the issue of parents being forced to
submit their children to
toxic cancer treatments like chemotherapy and radiation,
against the family's wishes,3
or risk losing custody.
All of this is in addition to the situation discussed by Ric
above, where the Food and Drug Administration (FDA) is
condemning children to death by refusing to allow them access to
experimental treatments, even though the agency has the
authority to grant such access to terminal patients who have not
responded to conventional treatment.
Ric lost one of his young daughters to cancer. She underwent
chemotherapy, surgery, and radiation, which had no impact on her
condition. Her brain tumor went into complete remission after
receiving a gene-targeted therapy that included cancer-fighting
peptides called antineoplastons. She died, cancer-free, from the
side effects caused by the initial rounds of chemotherapy... I
applaud Ric for his efforts to advocate for terminal patients
who are now being refused access to antineoplastons by the FDA.
I hope you will offer your help and support as well.
Parents Choice for Terminal Kids
There's something horribly wrong about a system that prevents
parents from seeking medical treatments they deem to be in the
best interest of their own child. Most conventional cancer
treatments tend to add insult to injury by doing more harm than
good -- a fact that has been largely swept under the rug by the
medical industry.
Worse yet, the cancer industry has become a massive
for-profit business that is doing everything in its power
to maintain the status quo. It is, quite simply, not interested
in truly reducing cancer rates; it's interested in treating
cancer, using treatments that provide the greatest profits. ANP
does not fit comfortably into this for-profit model.
It's incomprehensible to me that some parents are forced to
treat their children with chemotherapy and radiation, even when
such therapies are KNOWN to be ineffective for a particular type
of tumor. Where is the humanity in that? And then when such
therapies fail, as they often do, other treatment options are
blocked out of industry fears that these alternative
treatments may prove effective! Where is the compassion and
respect for LIFE? Just as we need to stand up for our right to
choose when it comes to vaccines, we need to become engaged in
these issues and demand Parents Choice for terminal kids.
Getting involved with the ANP Coalition (ANPC) is one way to get
this ball rolling.
Copyright 1997- 2014 Dr. Joseph Mercola. All Rights Reserved.