No free choice for medical care.

[Guest guest]

In reality these measures are to protect the economic interests of

organized medicine.....It;s all about money amd to do away with any

competition.

 

 

 

FORCING CHOICES

 

The Health Sciences Institute e-Alert

 

November 6, 2002

 

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Dear Reader,

 

There are few things more infuriating than a bureaucratic system

that's designed to protect, but because of a misguided sense of

purpose, ends up " protecting " people from the things they need the

most.

 

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Confused priorities

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Imagine yourself in this scenario: Your child is sick. His doctor

offers a treatment that you find unacceptable. So you do some

research and find a doctor who has developed a treatment that you

feel is right for your child. Could it be simpler? You make your

choice and live with the results.

 

This is how Michael and Raphaele Horwin believed their story would be

told. In 1998, their 2 year-old son Alexander was diagnosed with,

medulloblastoma - a fast-growing, invasive brain tumor that easily

spreads throughout the nervous system. Two brain surgeries were

successful in removing the tumor. The Horwins' doctors recommended

the typical chemotherapy used for medulloblastoma - an extremely

harsh chemo that often damages the heart, lungs, liver and kidneys,

and can lead to loss of hearing, further cancers and even death.

 

The Horwins found this unacceptable. They began looking for alternate

treatments and soon located a doctor named Stanislaw Burzynski whose

Houston clinic had successfully treated several children with cancer,

including medulloblastoma. Burzynski's unconventional treatment used

synthetic peptides, purported to " switch off " cancer genes. And

although Burzynski's treatments were controversial, they were part of

an FDA-approved clinical trial.

 

But there were two problems. First: The FDA guidelines stipulated

that a patient such as Alexander could only receive Burzynski's

treatment if he had already been given an " approved " chemotherapy,

and the chemo had been ineffective in curbing the cancer. The second

problem was presented by Alexander's oncologists. The Horwins got a

jolt when they discovered that they had no choice in the matter of

Alexander's chemotherapy treatments. The oncologists informed them

that, if necessary, they could forcibly remove Alexander to

administer the chemo.

 

Hemmed in by laws and regulations designed to " protect " kids like

Alexander, the Horwins reluctantly agreed to begin chemotherapy.

After three cycles of the treatments, a CT scan showed that a large

number of new tumors had developed. At this point Alexander became

eligible for the treatment at the Burzynski clinic, but his cancer

was too far advanced. Alexander died three weeks later.

 

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Charlatans in sheep's clothing

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The FDA regulations that prohibited the Horwins from seeking

treatment for Alexander from Stanislaw Burzynski were designed

to " protect " the Horwins and others like them from unscrupulous

charlatans who would charge an exorbitant price for an unproven

treatment.

 

Exorbitant price? Alexander's medical bill totaled almost a quarter

of a million dollars.

 

Unproven treatment? Oncologists assured the Horwins that the

chemotherapy they administered to Alexander (called CCG-9921)

was " state-of-the-art. " But after Alexander's death, the Horwins

discovered that over a period of more than 20 years, numerous studies

in medical journals had reported that this chemo was known to cause

dementia, seizures and death. In fact, one study was discontinued

when the children's tumors were discovered spreading rather than

decreasing. Furthermore, CCG-9921 has been approved by the FDA to

treat adults, but its use with children is considered to

be " experimental. " And yet, in spite of its horrendous track record,

CCG-9921 is still being prescribed (or in the case of the Horwins:

forced) to treat children with medullablastoma.

 

So who are the charlatans? Imagine the answer you might get if you

asked the Horwins that question. The big difference here, of course,

is that charlatans can't force you to use their treatments on your

child.

 

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Who controls your healthcare choices?

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Based on the notion that the judgment of parents can't be trusted,

government regulations forced Alexander Horwin into the harshest

imaginable chemotherapy. If the Horwin's had been free to pursue the

Burzynski treatments, they could not have possibly done any worse

than the government did. But could they have saved Alexander's life?

Unfortunately, they'll never know.

 

Without question, there are true charlatans out there who would prey

on desperate people, bilking them of their savings while convincing

them that a bogus therapy might save their lives, or the lives of

their children. But this is what thorough research and background

checks are for. And I would much rather place my faith in each

individual's personal judgment before I placed my faith in a bloated

bureaucracy, willing to restrict everyone's right to choose in order

to protect a few of us from making bad choices.