OT: Tucsonans go to Congress with cancer-treatment fight

[Guest guest]

This is not about TCM, but I'm forwarding it onto this list because it goes

straight to the issue of the need for people to be able to choose their own

healthcare for themselves and their children balanced with the need to

protect the public.

 

As a general rule, people living in the West tend to be more pro-alternative

healthcare than people living in the East. There are exceptions, but this

generally holds true.

 

People in Arizona, California, and Utah in particular are apt to be even

more pro-alternative than the populations in some of the other Western

states.

 

Yes, there is a need to protect people from quackery, but a lot of what gets

labeled as quackery is not. Some of it is, but a great deal of it is not.

 

On the other hand, there also is a need for people to be able to choose

alternative treatments. I know in my own case, if I had not been free to

pursue alternatives, I'd be a lot sicker than I am and probably would be

dead.

 

There are major flaws in any system where all decisions come from the top

down. And this includes healthcare systems. These completely top-down

systems are closed. They never expand. In time they collapse from the

inside because of their deficiencies. They don't adapt, don't grow. The

people in charge don't even realize there are deficiencies because the

system is so closed to outside input.

 

Victoria

 

 

>Tucsonans go to Congress with cancer-treatment fight

>Thu, 8 Jun 2000 05:53:48 -0700

>

>Tucsonans go to Congress with cancer-treatment fight

>

>

>

> Thursday, 8 June 2000

> Tucsonans go to Congress with cancer-treatment fight

> By Carla McClain

> ARIZONA DAILY STAR

>

> A Tucson couple's dramatic fight for the right to determine their

>son's medical treatment hit the national spotlight yesterday as they took

>their crusade to Congress.

>

> While 4-year-old Thomas Navarro battles aggressive brain cancer, his

>parents challenged the federal government's power to deny the treatment

>they want for him.

>

> " The family has been stonewalled by the FDA and hounded by Child

>Protective Services, whose aim is to seize Thomas, subject him to

>Draconian, ineffective treatments against the wishes of his parents, and to

>imprison his parents for . . . opposing the dictates of the FDA, " said a

>statement issued by Tucsonans James and Donna Navarro, Thomas' parents.

>

> Dogged by the national media, the Tucson couple went head-to-head

>against Food and Drug Administration officials yesterday in a daylong

>hearing before the House Committee on Government Reform, which is

>considering a " patients' rights " bill aimed at the Navarro case.

>

> Specifically, the largely Republican-sponsored bill would give the

>Navarros the ultimate authority to decide to use the investigational,

>unapproved drugs they want to fight their son's cancer. That would take

>away the FDA's authority to deny unapproved treatments.

>

> It is a bill a national expert on childhood brain cancer calls " an

>abomination " that would leave the American public unprotected against

>possibly useless and fraudulent treatments.

>

> Agreeing, the boy's Tucson physician, University of Arizona

>pediatric oncologist John Hutter, filed a medical neglect report with

>Arizona Child Protective Services after the Navarros refused the approved

>standard treatment of chemotherapy and radiation for their son.

>

> That prompted the Navarros to flee to Texas to continue their fight,

>before CPS could begin an investigation.

>

> " James Navarro is fighting to give his son the right to the best

>possible quality of life. He also wants to inform the American public that

>parents of children who get cancer cannot choose the treatment they want

>for their child and that the FDA has grabbed that power for themselves, "

>said a statement released by the family's supporters before yesterday's

>hearing.

>

> The Navarros could not be reached for comment in Washington, D.C.,

>after the hearing.

>

> The Navarros' battle began last fall when Thomas was diagnosed with

>a highly aggressive and potentially fatal form of brain cancer known as

>medulloblastoma.

>

> Standard treatment requires surgery first, to remove as much of the

>tumor as possible, followed by radiation to the brain and spine, then a

>regimen of chemotherapy drugs.

>

> The child's surgery, at Tucson Medical Center, successfully removed

>the entire tumor. But after studying research reports on the follow-up

>treatment, the Navarros balked at its toxicity and uncertain results.

>

> According to the Navarros, the brain-spinal radiation and

>chemotherapy would cause significant brain damage, including severe mental

>retardation, vision and hearing loss, hyperthyroidism, incoherent speech,

>stunted growth, rage disorder, other cancers, and sometimes death.

>

> Instead, the Navarros' research led them to seek treatment by a

>controversial Houston physician using a nontoxic but still unapproved

>treatment for medulloblastoma known as antineoplaston therapy.

>

> Using a biochemical defense system against cancer, antineoplastons

>are peptides and amino acids derived from human blood and urine that invade

>cancer cells and stop their growth, according to Dr. Stanislaw Burzynski,

>who pioneered the treatment.

>

> Even though antineoplaston therapy is being tested in FDA-approved

>clinical trials, based on the recommendation of the National Cancer

>Institute, the FDA has forbidden the Navarros and others like them access

>to those trials unless they have tried and failed the approved

>radiation-and-chemotherapy treatment.

>

> That is because the FDA considers the approved treatment " curative "

>for Thomas Navarro's brain cancer, FDA officials told the congressional

>committee yesterday.

>

> " Curative therapy is a rare opportunity in cancer treatment, " Dr.

>Richard Pazdur, director of the FDA's division of oncology drug products,

>testified.

>

> " It is now highly likely these patients can expect long-term

>survival, . . . (but) if cancer patients reject curative drug therapies in

>favor of unproven therapies and the unproven therapies turn out not to

>work, their disease may advance beyond the point where curative therapies

>can help. "

>

> Brain-spinal radiation and chemotherapy after surgery for

>medulloblastoma offer an 80 percent chance of disease-free survival after

>five years, said Dr. Henry Friedman, neuro-oncologist at Duke University

>Medical Center in Durham, N.C., and one of the nation's leading experts in

>childhood brain cancers.

>

> " That is a cure, and a very high chance for a cure, " he said.

>

> But the treatment does cause about a 15- to 20-point drop in IQ

>rating, some loss of short-term memory and stunted growth, he acknowledged.

>

> " Yes, you have a damaged child, but still a functional child - and

>one who can go on to live a long, productive, full life, with a family, a

>job and children, " Friedman said. " They (the Navarros) are way

>overestimating the danger of the side effects. "

>

> He called the " patients' rights " bill that would strip the FDA's

>power and give it to parents like the Navarros " an abomination. "

>

> But the Minnesota parents of a child with the same brain cancer as

>Thomas Navarro's tell a different story.

>

> Six years ago, before the FDA clamped down, they too refused

>standard treatment and opted instead for antineoplaston therapy for their

>son, Dustin.

>

> Today Dustin is cancer-free and is a completely normal, energetic

>9-year-old, with no neurological deficits, they say.

>

> " Thank heavens we were able to do that, " said Dustin's mother,

>Mariann Kunnari of Aurora, Minn.

>

> " We feel it is every parent's right to choose a medical treatment

>for their child. The FDA's power is out of control. "

>

>

> Reporter Carla McClain can be reached at 806-7754 or by e-mail at

>cmcclain.

>

>

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>

>

>

>

>

>

 

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[Guest guest]

This makes me so sad that we cannot even chose how we want our children

treated. It breaks my heart for this family. Did it ever occur to the

doctor or the government for that matter that this family was doing the right

thing. I hope that I never have to make these types of decisions for my son

while he is a child. They really are not safe when the rest of the world

makes decisions for them without all the facts. Plus did anyone stop to

think about how hard this must be for the family now and if they have the

traditional treatments and how that effects their lives. The medical

complications alone would financially drain them let alone the mental. Plus

here is another fine example of how one treatment works for all in western

medicine. When will we wake up and smell the coffee.

 

Shane