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Minnesota Democrats and Republicans ready to seize medical files for rationed care

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NOTE #1: There are 7 hours left of the Minnesota legislative session. HF1341—the health department’s bill to grab baby DNA and repeal genetic privacy—is on the Calendar in the House, but no word yet.

 


NOTE #2:  We will continue to deliver petitions against HF 1341 to the Governor until the legislature adjourns without passage of the bill (or similar language elsewhere)..or the Governor signs or vetoes the bill.

MN State Capitol at Sunset (TB)

CCHC Legislative News!

  • Your Data — Their Control
  • MN Meddling: New Law Expands Government Interference
  • Medicare:  Bad New Could Be Good News
  • ObamaCare Master Plan – More Data; Less Care


    Your Data, Their Control
    Republicans should take a lesson from Hong Kong’s Sir John Cowperthwaite. As former Financial Secretary, he refused to collect data to prevent the bureaucratic impulse toward central planning.  By refusing to collect economic statistics about Hong Kong during his tenure, he helped usher in the island’s unprecedented growth into an international financial center. “I did very little,” Sir John once said. “All I did was to try to prevent some of the things that might undo it.” That would be statistics.On July 1, 2009, medical records data from all Minnesotans will be shipped electronically by insurers to a data warehouse in Maine. No consent is required. The Minnesota Department of Health will own the data and use it to monitor and analyze physician treatment decisions and patients…and eventually ration care by statistical renderings of “cost-effectiveness.” The cost of the collection and analysis program is more than $5 million over the first three years. Health officials have no idea how to do what they want to do (see MDH Request for Information) but the likely impact will be punitive bureaucratic controls…and less access to care.Too many Republican leaders fail to understand that government data collection is tied to government control. Legislation at the state and federal level supported by Republican lawmakers and free market groups is chock full of new registries, repositories and electronic data sharing. Specific collections include patient outcomes, treatment patterns, and “quality” of health care. Report cards on doctor “performance,” and payment penalties will follow.

    Rationing of health care is enabled by such government data collection, analysis and payment schemes. Supporters of a  national interoperable online medical records system expect to use the system to nationalize health care—and the data to rationalize rationing of medical care. See “Evidence Based Medicine: Rationing Care; Hurting Patients, a paper written by CCHC’s president Twila Brase, and commissioned by the American Legislative Exchange Council, 12/2008.


    MN Meddling: New Law Expands Government Interference
    Minnesota Governor Tim Pawlenty may have line item vetoed some of the money in the health and human services bill (HF 1362), but a full-sized veto was warranted. The legislation extends to new heights government interference in health care. The list of troubling items in the bill (beyond the eligibility and spending increases) that we provided to legislators during the House floor debate include the following (with page and line #):•  Electronic prescribing mandate that will allow government tracking of your prescriptions and pharmacy choice. (62.4 )
    •  Electronic prescribing mandate allows pharmacies access to medical record information without your consent. (62.8 and 61.34)
    •  Nationalized medical records—by requiring conformance with federal sharing/reporting in Econ. Stimulus. (HITECH) (52.9)
    •  No payment for treating hospital-acquired conditions. Can hospitals and doctors prevent these various complications? (76.13)
    •  Government to establish performance thresholds for health care provider for “combined cost and quality.” (78.8)
    •  Health Services Policy Committee will track provider practice patterns. (93.19)
    •  DHS authorized to use “any other means available to verify family income” (to keep children on MinnesotaCare). (133.28)
    •  Collection of statistics on asthma hospital admissions. (151.6)
    •  Huge government-endorsed research project on patient “health care outcomes and treatment effectiveness.” (151.24)
    •  Substance abuse tracking system. (174.31)
    •  Data sharing/exchange on individuals authorized between 3 Departments (Health, Human Services, Mental Health). (198.1)


    medicare screenshotMedicare:  Bad News Could be Good News
    The future of Medicare is bleak—and that’s good news if you look at it the right way. The entitlement program’s expected demise is an opportunity to take strong steps now to free current and future senior citizens from the evolving life-threatening rationing strategies in play today and impending in the near future.Medicare will become insolvent in 2017, according to the latest Trustees report released May 12, 2009. In 2008, they reported insolvency by 2019. One year later, the date is 2017. Next year’s announced date of demise could be be 2015. Summary: “The Medicare Report shows that the HI Trust Fund could be brought into actuarial balance over the next 75 years by changes equivalent to an immediate 134 percent increase in the payroll tax (from a rate of 2.9 percent to 6.78 percent), or an immediate 53 percent reduction in program outlays, or some combination of the two.”Liberals will look at Medicare’s impending insolvency as rationale for a national health care system. Conservatives should look at the Medicare crisis as rationale for bringing freedom and free markets to the fastest growing segment of our population, people over the age of 65.  See CCHC paper: “Medicare: Need an Escape Plan, not a Rescue Plan”


    ObamaCare Master Plan – More Data; Less Care
    Peter Orszag is President Obama’s director of the White House Office of Management and Budget, and Obama’s chief health care strategist. He was also the person who put the $1.1 billion “comparative effectiveness research” (rationing) initiative and the national health data system into the Economic Stimulus bill. In 2007, as head of the Congressional Budget Office, he said in a presentation that electronic medical records not used for data-based controls on care will not save money. Thus, here is what he wrote in The Wall Street Journal on May 15, 2009:

“…How can we move toward a high-quality, lower-cost system? There are four key steps: 1) health information technology, because we can’t improve what we don’t measure; 2) more research into what works and what doesn’t, so doctors don’t recommend treatments that don’t improve health; 3) prevention and wellness, so that people do the things that keep them healthy and avoid costs associated with health risks such as smoking and obesity; and 4) changes in financial incentives for providers so that they are incentivized rather than penalized for delivering high-quality care. [CCHC NOTE: incentives for one thing tend to mean penalties for the other]

“Already, the administration has taken important steps in all four of these areas. In February, the president signed the American Recovery and Reinvestment Act, which is providing resources for electronic medical records, patient-centered health research, and prevention and wellness interventions so that we have the infrastructure in place to lower health spending in the long run….”

This is a plan for centralized control, based on a national health surveillance system. Orszag can’t take full credit for this idea. Hillary had it in her plan first, along with “quality” monitoring (Title V, Clinton Health Plan).


– CCHC –

Citizens’ Council on Health Care supports freedom for patients and doctors, medical
innovation, and the right to a confidential patient-doctor relationship.

Congress Passes S. 1858 creating DNA Warehouse for all US Citizens

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To contact President Bush:
Comments:   202-456-1111
Switchboard:   202-456-1414
FAX:  202-456-2461
EMAIL: comments@whitehouse.gov
The president has 10 legislative days to sign the bill or veto it.

 

 

MEDIA RELEASE

 

 

National “DNA Warehouse” bill passes; American citizens to become unwilling subjects of genetic researchCCHC calls on President Bush to Veto the Bill

 

 



Minneapolis/Saint Paul
– Yesterday, in a voice vote, the U.S. House of Representatives passed a bill to authorize the creation of a national DNA warehouse and broad-scale genetic research on the American public.

 

S.1858, passed by the U.S. Senate last December, has been sent to the President for signing.Twila Brase, president of CCHC, makes the following statement:”We are asking President Bush to veto this unethical, immoral, and unconstitutional bill.

 

Congress has voted to strip citizens of genetic privacy rights and DNA property rights. The bill also violates research ethics and the Nuremberg Code.”Soon, under this bill, the DNA of all citizens will be housed in government genomic biobanks and considered government property for government research.

 

The DNA taken at birth from every citizen is essentially owned by the government, and every citizen becomes a potential subject of government-sponsored genetic research.

 

“The public is clueless. S. 1858 imposes a federal agenda of DNA databanking and population-wide genetic research.  It does not require consent and there are no requirements to fully inform parents about the warehousing of their child’s DNA for the purpose of genetic research. Already, in Minnesota, the state health department reports that 42,210 children of the 780,000 whose DNA is housed in the Minnesota “DNA warehouse” have been subjected to genetic research without their parent’s knowledge or consent.

 

“President Bush should not sign this bill.”

Twila Brase
is president of Citizens’ Council on Health Care. She can be reached at 651-646-8935.

 

 

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Citizens’ Council on Health Care supports freedom for patients and doctors, medical
innovation, and the right to a confidential patient-doctor relationship.

States Claiming Ownership of Newborn’s DNA

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Unknown to most new parents, or those who became parents in the last ten or so years, DNA of newborns has been harvested, tested, stored and experimented with by all 50 states.  And all 50 states are now routinely providing these results to the Homeland Security Department. 

No doubt we can all see the benefits in testing for genetic disorders or genetic traits and tendencies that could be more adequately dealt with, in some cases actually deterring the onset of life-time illness, but that seems not to be the real thrust of these programs.  It may have been initially….but not now.

As with all good things, there are always those who seek the more evil path, in essence turning what should have been a life saving tool, a preventative measure into something insidious and inhumane.  This is what has happened to this national effort.

Here in Minnesota the state tests for 56 various genetic disorders and variants.  At least 1/3 of these tests produce a false positive meaning that a flaw was identified that actually did not exist.  Regardless, that false positive becomes part of the permanent record of the child and follows them for the rest of their lives as does any true positives.  This means that the child will eventually and most likely face discrimination in employment and the ability to gain health insurance at any cost.

There are other nagging problems with this system.  Although the national website

http://genes-r-us.uthscsa.edu/  insists that this harvesting of DNA is a highly visible program, my own polling of parents of newborns, or the grand parents had no idea that this was being done to their children and grand children.  Further, not one knew that they had the right to demand the blood and tissue samples be destroyed after 45 days per written request.  Even had they known, and the samples were destroyed (you would have no way of knowing if they really were) the information gleaned from them would still be available and on file…..in perpetuity. 

Also unknown to at least the new parents in Minnesota, is that once that 45 days has lapsed, the state now claims that they “own” the DNA of that child.  This claimed ownership now allows the state health agency to test, tamper, alter, sell, farm out, and utilize in any way they see fit, the DNA of your newborn.  It can be manipulated, spliced with other DNA, and used in ways never intended under the screening program.

Now, there are forms that have to be signed that agree to this invasion of privacy, but the problem seems to be that this is not done during pre-natal care, but rather, at the time of delivery of the infant.  These forms are produced when the mother is ready to deliver and is being admitted to the hospital.  That’s when these “informed consent” forms are dragged out to be signed.  This is no accident.  Expectant parents simply sign what is put in front of them and are told they must sign to complete admission.  Nice, huh?  And none of them seems to be aware that what they are signing allows this right to have those additional blood and tissue samples destroyed.  No matter, the damage is done and the results of those three extra blood drops are forever recorded and along with it, a lot of genetic information about the parents.

Although this is supposed to be an opt-in program, rather than an “opt-out”, Minnesota has decided to interpret the law differently.  Our legislators have decided that opting out is the way it should be…..regardless of the law.  With that in mind they have gone one step further and declared that if the parent doesn’t specifically opt out….they are presumed to have “informed consent” and have opted in. 

I have to give the special interests in Minnesota their dues.  Federal law and the courts have upheld the concept that human DNA cannot be patented.  But these fine folks, representing insurance companies, medical institutions, and big pharma have found a way around that bothersome ruling.  Using a compliant legislature they have made sure a system has been put in place that allows them to indirectly access what should be the most private of all information, the most identifiable information concerning an individual and in the case of medical and pharmaceuticals, to use it in any way they see fit once the state claims ownership. 

In January 2007, a lady named Twila Brase president of the Citizens Council on Healthcare, issued a written testimony to the Minnesota legislature on the unethical and hidden uses of harvested DNA by the state.  The 18 page document can be located at

http://www.oah.state.mn.us/cases/health4615/nbs-pc8.pdf    

It is an eloquent treatise on the misuse of the DNA testing and the right of parents to be fully informed of what is really afoot in these programs. 

Currently, we have a monumental effort under way by Sue Jeffers to petition the state to;

Oppose illegal State government ownership of the blood, DNA and genetic test results of newborn citizens in Minnesota.  http://www.cchconline.org/petition/babyDNA2007.php  

In July 1997, solely by an executive decision of health officials-no lawthe MN Department of Health began retaining the DNA-filled blood specimens of all newborn babies.

The State now claims ownership rights to the DNA of more than 670,000 children (approx.70,000 births/yr).

In July 1986, MDH began cataloging the genetic test results of all Minnesota children. Approximately 1.4 million children are in the database.   

Oppose the dissemination of newborn blood and DNA to genetic researchers

Oppose the Minnesota Department of Health’s refusal to fully inform parents

Calls on Governor Tim Pawlenty to direct the Minnesota Department of Health (MDH) to comply with Minnesota state privacy law, to fully inform parents of the genetic testing process and their legal rights–and to dismantle MDH’s illegal warehouse of newborn citizen DNA. (Contact Sue Jeffers directly at: S1U2E3@aol.com )

I might suggest that each of you check the national website to determine how extensive the DNA testing is in your state, especially if you have children 10 years or younger.  What you find may sicken you.    

The idea of the state, any state, claiming ownership of the DNA of anyone, most especially newborn babies is so repugnant to me that I cannot find the words to express how offensive this is; what an unconscionable breach of humanity this comprises.  This issue is not one of party affiliation or a right vs. left drama being played out.  This is the groundwork for future discrimination that will most likely surpass employment and insurance targeting but eventually could be used to decide who lives or dies, or who can reproduce. 

There is however a level of humor in all the debating going on……insurance company reps along with those of the business sector assured everyone that these genetic tests will never be used to discriminate in employment or insurance coverage.  Now if that didn’t make you laugh, nothing will. 

But, all of us need to ask ourselves why this information would be of any use to Homeland Security?  What possible reason could they have for cataloging and storing the genetic code of any newborn child? 

In the end I find myself wondering where all these big religious fomenters are that railed against gay marriage, stem cell research, the right to choose for women and a host of other issues that would supposedly destroy the traditional American family.   Wouldn’t losing ownership of your child’s or your own DNA be far more devastating than these issues?  And yet, not one rock star preacher has spoken one word that I can find condemning this practice.  Not a peep!  It’s probably just a case of a lost message in all the speaking God does to them when he puts a “word of knowledge in their hearts” about the woes of society. 

My advice?  Find out what is happening in your own state and to what extent your state is testing and participating in this program that is so loaded with secret agendas and obviously in opposition to many state and federal laws.  Maybe what is needed is a class action lawsuit brought in each state by parents who were unaware that they or their children no longer own their own DNA.

     Marti Oakley  copyright 2008 

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