ORWELL REDUX
Health Sciences Institute e-Alert
April 14, 2003
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Dear Member,
If you're a U.S. citizen, as of today you now have a medical today you now have a medical
identification number.
Some will tell you that your new ID number helps protect
your privacy. And while to some extent it does, the
protections are largely superficial. The disturbing truth is
that your medical privacy is now beyond your control.
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Just sign here...
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The next time you visit your doctor, you may notice some
changes.
For instance, you might see privacy screens placed around
the edges of computer monitors to prevent someone from
glancing at your personal medical information. And once
you've received your new medical ID number, the receptionist
may call you in from the waiting room by your number instead
of your name - a procedure designed to protect your privacy
from others in the waiting room. (Speaking for myself, this
completely impersonal and unnecessary procedure is not a
protection that I've been longing for.)
More importantly, you'll be asked to read a description of
the new federal regulation that, in theory, is designed to
protect the privacy of your medical records in this new age
of electronic record-keeping and file transfer. And you'll
be asked to sign a document, stating that you've read about
the new regulation, understand it, and agree to the new
procedures.
Ready for the kicker? If you don't sign the form, your
doctor is allowed to refuse to treat you and your insurance
company is allowed to refuse coverage.
If you're wondering why this new "privacy" that's granted to
you is, in effect, being forced down your throat, the answer
lies in the fact that these regulations actually weaken your
ability to restrict access to your medical history.
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Regs running roughshod
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The source of the revised federal medical privacy rule is
the Health Insurance Portability and Accountability Act
(HIPAA), passed by Congress in 1996. And I'll offer this
benefit of the doubt: the original idea that led to this act
may very well have had a good intention to protect the
privacy of our medical records. But something went awry as
this good idea passed through the massive Congressional and
regulatory maze. If you roll a snowball down a long muddy
hill, you end up with a muddy snowball.
As the rule now stands, doctors, dentists, pharmacists,
hospital personnel, and even psychotherapists have to abide
by new requirements that can be as simple as providing a
secure area for private consultations, or as high tech as
encryption software for computer programs. The government
estimates that healthcare providers will spend as much as $4
billion to comply with these measures. And do you imagine
those costs will be passed along to the patients? You can be
absolutely sure of that.
So what will we get in return for all of this bureaucratic
effort and exorbitant expense? Here are a few of the
realities of the new "privacy" rule:
* Doctors and insurance companies may now share a patient's
health information with third parties (including the U.S.
Department of Health and Human Services (HHS) without
asking the patient for permission.
* A patient cannot withhold medical information from HHS.
* Doctors and insurance companies are not required to give
patients an accounting of third parties with whom their
information is shared.
* A patient's request for such an accounting can be denied.
* Doctors and insurance companies can share a patient's
medical records with the FDA as well as foreign
governments who may be collaborating with U.S. health
officials.
* If the privacy of a patient's medical records has been
violated, the patient can issue a complaint to HHS, but
the department is not required to investigate the
complaint. Furthermore, the patient cannot bring a lawsuit
against a doctor or an insurance company for a breach of
privacy.
To say that these regulations shamefully contradict the
ethic of doctor/patient confidentiality is to put it mildly.
That age-old standard is now out the window. But I saved the
best one for last: HHS may now access a patient's
phychotherapy notes. That's right: the most sacrosanct area
of all - the health of your psyche - is now open to
government examination. They don't have to ask for your
permission, and they don't have to tell you if they're
sharing your most private thoughts with third parties.
Welcome to "1984" - just 19 years late.
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Speak now
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What can you do about all this? Frankly, not much. The
Standards for Privacy of Individually Identifiable Health
Information rule officially went into effect on April 14,
2001. The "enforcement" of that rule goes into effect today.
Normally I don't report to you about situations in which you
have no course of action. But even though this new rule is
signed, sealed, and (as of today) delivered, there is one
way you can make your voice heard.
The Citizens' Council on Health Care (CCHC - a non-profit
organization that promotes the right of each individual to
control his health care decisions) has prepared a form
titled "Declaration of Medical Privacy Intent." You can
print out this form from their web site (cchconline.org),
fill in the appropriate information, and then instruct your
doctor, psychologist, pharmacist, and insurance companies to
include the form with your permanent records. Or, if you
don't feel comfortable using the CCHC form, you can write a
letter declaring that you do not wish to have your private
medical information shared with any third parties without
your written consent.
What authority this letter or the CCHC form might carry is
questionable. It's certainly possible that someone might see
it and respect your wishes. And I imagine that at some point
push will come to shove and the legality of this new rule
will be tested in court. In that case, a written declaration
insisting that your medical records remain private could
carry weight in a legal proceeding. I should know better,
but I find it hard to believe that any judge sworn to uphold
the U.S. Constitution would deny a patient his right to
doctor/patient confidentiality.
But then, I find it hard to believe that this new rule is
being allowed to trample our basic right to privacy in the
first place. Laura Sherrill, a hospital administrator in
charge of medical records, told the Honolulu Star Bulletin
last week, "From now on, it's going to be a new world." I
hope she's wrong, but I'm afraid she's right.
Sources:
"Standards for Privacy of Individually Identifiable Health
Information" 45 CFR Parts 160 and 164, access.gpo.gov
"Declare Your Medical Privacy Intentions" Citizens' Council
on Health Care, cchconline.org
"Update on the Federal Medical Privacy Rule: Questions and
Answers" Sue Blevins, Deborah Grady, Institute For Health
Freedom, forhealthfreedom.org
"Patient Rights Under HIPAA" Washington Post, 4/8/03,
washingtonpost.com
"New Federal Health Privacy Rules Readied" James
Hagengruber, Billings Gazette, 4/10/03, billingsgazette.com
"New Privacy Rules Mean More Paperwork" Lara Hueth, The
Caledonian-Record Online Edition, 3/31/03,
caledonianrecord.com
"'New World' Imminent For Medical Files" Helen Altonn,
Honolulu Star Bulletin, 4/9/03, starbulletin.com
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