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This little boy passed away. The parents blame the establishment for

his death.

 

 

03:00 AM Jul. 18, 2000 PT

 

If Jim and Donna Navarro lived during different times, the outcome of

this story would probably be different. Even if they had simply

stayed away from the Internet, their story would have been materially

altered.

 

In fact, Donna Navarro probably would not be answering her cellphone

while pacing the floors of her temporary residence in a Mexico

clinic, where her 4-year-old son is being treated with an unusual

therapy for a lethal brain tumor.

 

 

" We have left to another country, " she explained, shushing her small

son, who was giggling in the background. " I was like, we have to do

something. "

 

Deciding on that something is at the crux of the Navarro family's

dilemma. Faced with a doctor who insisted on a combination treatment

of radiation and chemotherapy for young Thomas -- diagnosed with

medulloblastoma in September 1999 –- Jim and Donna turned to the

Internet to find out more about the treatment.

 

" We got on the Internet, we looked up brain tumor, " she said. " That's

how we found medical abstracts, and that's how we found out about all

the awful effects " of radiation and chemotherapy.

 

The Net is replete with information about the deleterious side

effects of chemotherapy and radiation on children with brain cancer.

Among the consequences are hearing and vision loss, hyperthyroidism,

mental retardation, stunted growth, and even death.

 

This information is often eventually linked to the site of one doctor

who offers a radically different option.

 

His name is Stanislaw Burzynski. He operates a clinic in Houston that

treats several different forms of cancer with antineoplaston therapy,

a controversial treatment of peptides, originally discovered in human

urine and now manufactured synthetically. The Polish-born doctor --

the only doctor in the world who offers this therapy -- claims that

these protein fragments turn off cancer genes.

 

The Navarros talked with Burzynski and immediately liked him.

 

" He's a very credible, intelligent man, " Donna Navarro said. " He was

very forthright (and) all his patients called us. "

 

When the Navarros decided they wanted their son to be treated by

Burzynski, the FDA denied them permission, ruling that the treatment

could only be used as a last resort. FDA officials threatened to take

Thomas into protective custody if the Navarros denied him traditional

treatment.

 

The FDA –- which has sanctioned government-sponsored clinical testing

of Burzynski's treatment only as a last resort in pediatric patients -

- maintains it has a duty to protect patients from doctors who offer

potentially dangerous treatments. Unless the law is changed,

officials there say they're not budging on antineoplaston therapy for

Thomas.

 

" We can't harm any patient with these experiments, " said Thomas

McGinnis, director of pharmaceutical affairs in the FDA's Office of

Policy. " There has to be the possibility that it might work. (The FDA

rules) protect the public health from crazy experimental treatments. "

 

Just what is considered " crazy " could change because of the Navarro

case. Thomas' parents enlisted the support of Indiana Representative

Dan Burton, who drafted a bill that would amend the Federal Food,

Drug, and Cosmetic Act to restrict the authority of the FDA to issue

clinical holds on investigational drugs or to deny patients expanded

access to such drugs. The Thomas Navarro FDA Patient Rights Act is

currently moving through the House Commerce Committee.

 

But the Navarros can't wait for the legislation to make its way

through Congress. They've left their home in Tucson, Arizona, and

established a sort of home in the Mexico clinic, where their son can

receive a non-toxic treatment, even if it isn't the one Burzynski --

who remained in the United States -- is offering.

 

" It is my second choice, and as soon as we have access to

antineoplastons, we're going to be doing that, " said Donna Navarro.

 

Thomas is undergoing insulin-induced hypoglycemic therapy, another

treatment the FDA has not endorsed. In this treatment plan, the cells

of a patient's body are deprived of sugar, the theory being that

artificially induced diabetes will kill cancer cells.

 

" We read about it in alternative medicine magazines, " Donna said,

admitting " it is a very drastic procedure. It's kind of risky. "

 

Story continued on Page 2 »

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