FDA Denies Hope for Dying Kids, and Other Abuses Waged Against Families Struggling to Help Their Ailing Children

FDA Denies Hope for Dying Kids, and Other Abuses Waged Against Families Struggling to Help Their Ailing Children

March 25, 2014 | 88,057 views

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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
• Contact your State Representative and both Senators. Demand their leadership in making ANP available to everyone!

Who Are We Fighting For?

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."

WATCH: Child Cancer Patient Petitions For Treatment

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.