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If you have already written your letters etc for federal lyme bills, here is another deserving effort to be made--change the legislation now being considered by Congress on medical privacy. Letters/calls to reps and/or signing the petition can be done by anyone. The petition URL is at the bottom of the page, can be clicked on easily!
Here is an explanation of why it is bad, copied from the Austin American newspaper.
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COMMENTARY
In 2006, could having cancer cost you a job?
By Deborah C. Peel
Saturday, January 21, 2006
Lance Armstrong's team cancelled his contract when he got testicular cancer. Fair enough, if being sick keeps you from working. But what happens if you survive?
After 2006, your chances of getting hired after a medical illness such as cancer or a positive genetic test will be extremely limited.
Congress plans to rush through a law building a national electronic health information network that will link the nation's medical databases together for use by more than 600,000 health-related corporations, employers, individuals and government agencies -without our permission.
When all 295 million Americans' medical records go online, hundreds of thousands of businesses that can access the network will be tempted to mine them for data. Who will hire us if they fear a medical illness might keep us from working or cost them money?
When Armstrong was ready to return to cycling, he was hired by a team willing to stake its future on a champion with great determination and courage.
Will the rest of us be that lucky if we survive a medical illness, test positive for the breast cancer gene, or get HIV? What about our children? Will they get their first job if they had autism, depression, juvenile-onset diabetes or a grandparent with Alzheimer's?
Who will hire us or our children if potential employers can read our medical records?
Until April 2003, patients controlled access to their personal medical records. Since then, more than 600,000 private corporations, employers and government agencies have federal authority to see and use those records.
Unless patient control is restored, the proposed national health information network will give businesses the opportunity to discriminate against every man, woman and child in the country. Medical records will become as available as credit and financial records - and just as impossible to protect and keep private. Identity theft will grow exponentially. Imagine the future: bosses and bankers being able to Google not only credit records, but medical, genetic and prescription records.
When every medical database can be data-mined through a national health information network, there will be a frenzy of corporate and government dossier-building, commercial use and surveillance. Patriot Act surveillance is nothing compared to what the proposed health IT bills allow.
Getting a job offer should be based on who can do the work, not fears about their future health.
As a physician for more than 30 years who has seen rampant job discrimination against people with mental illnesses and addictions, I know firsthand that many employers, upon learning employees have a disease or survived cancer, have fired them, denied them promotions or reassigned them to jobs they can't perform.
Look at Wal-Mart. The world's largest private employer just got caught planning to use employees' medical records to make decisions about hiring, promotions and health benefits.
IBM recently announced that it would not use employees' genetic records for hiring or promotions. But why does IBM have those records in the first place? What stops IBM from using the rest of the employee medical records they possess?
Soon every self-insured employer will have legal access to our medical records via the national health information network.
Congress should fix this proposed legislation before it destroys everyone's medical privacy. But it won't unless Americans speak out.
The fix is simple: restore patient control over who can see and use personal health information before building any national electronic health system. Here are the changes needed:
*Allow patients to opt-out of electronic health networks.
*Restore the right of consent (the right to control who can see your medical records).
*Allow patients to segment sensitive medical records.
*Require audit trails of all disclosures.
*Require patient notification of any data breaches.
*Add criminal penalties for use or possession of medical records without permission.
The dangers of a national electronic health-care system without patient privacy rights are obvious: no one's life or ability can be predicted by genetic tests or medical records. No one is their diagnosis. But access to sensitive medical data will tempt the owners of sports teams, employers, bankers and insurers to predict whether we live or die.
We need ironclad privacy protections to ensure that medical databases and online networks are secure and private. Tell your representatives in Congress to fix the proposed health IT legislation.
I bet cancer survivors would agree that you should be hired based on what you can do, not on your diagnosis. They've been there.
Peel, a psychoanalyst in private practice in Austin, is chairman and founder of the Patient Privacy Rights Foundation. A petition on this issue can be found at http://www.patientprivacyrights.org/site/PageServer
Worthless tests & labs, a dangerous vaccine, insurance companies refuse to pay, undertreatment the norm, all about money. MO. Posts: 281 | From CT | Registered: Oct 2005
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Ann-OH
Frequent Contributor (5K+ posts)
Member # 2020
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Thanks Lou, I have signed and I will make sure to make my friends and family aware of this.
Like so many things, many of us will not even know this is happening inless we get back-channeled the info. This is a tool for big business Medical interests. What an invasion of privacy!
I suggest we all forward this to any and all online health boards as well.
Mo
Posts: 8337 | From the other shore | Registered: Jul 2002
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posted
this world gets scarier every day! The very bills that are supposed to protect our privacy are actually being used to make ill people more and more vulnerable, and less able to get services. I hate this.
-------------------- "Looks like freedom but it feels like death.. It's something in between, I guess"
Leonard Cohen, from the song "Closing Time" Posts: 822 | From California | Registered: Jan 2006
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posted
Signed.
Posts: 856 | From Texas | Registered: Jan 2005
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
signed
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
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Here is an update. Looks like we need to send a message directly to Congress, to the person indicated below. Thanks. I can foresee data mining by insurance companies and employers to find out all the details of a person's lyme case. As we know, this would not be a good thing! ----------------------------------------
Medical Privacy Coalition Update 2/7/06
H.R. 4157, the "Health Information Technology Promotion Act."
I would encourage all of our MPC partner organizations to oppose H.R. 4157 as opposed to supporting it as long as viable medical informational privacy protections are included. I am reminded of what Davy Crocket said ``Remember that a government big enough to give you everything you want is also big enough to take away everything you have.'' Constiutional arguments aside ( Bush's Executive Order which calls for the creation of an electronic medical records infrastructure in 10 years and all of the companion legislation in support of his mandate are not one of the powers enumerated in the Constitution), this effort is a major mistake that not only further assaults our medical privacy rights but also will have the negative effect of further centralizing control of our healthcare system by taking decisions out of the hands of patients and their doctors and placing them in the hands of technocrats and buracrats. I would suggest each and everyone of you send an email with your concerns for the bill to Kathleen Weldon on the Health Subcommittee. [email protected] as well as contact Rep. Johnson's office who introduced the bill. We met with E&C staff a few weeks ago and they said unless they hear from you (collectively); this bill will pass without question.
I would like to thank Jim Pyles, American Psychoanalytic Association and Dr. Peel, Patient Privacy Rights for their efforts to educate congress on the anti-medical privacy rights aspects of the bill.
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