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MN LEGISLATIVE REPORT #3

FEBRUARY 21, 2003

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* BILL PASSES ANOTHER COMMITTEE - House Gov't Operations Committee

* THE SENATE FREEZE-OUT - No data legislation yet

* NO WORD FROM THE GOVERNOR - on data rule

* GENETIC PRIVACY CONCERN - expansion of newborn screening proposed

* CCHC COST-CUTTING IDEAS INCLUDED - in Governor's budget

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Little Opposition

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Despite opposition from the Minnesota Chamber of Commerce (employers), members of the House Government Operations Committee voted on Wednesday to approve House File 297 (Haas-R) which repeals the state law allowing state collection of private medical data. The bill now goes to the House Civil Law Committee (see list of  legislators below at end of email)

The lobbyist for the Chamber said it is important that "consistent and qualitative data" be available saying that the Haas bill goes beyond addressing privacy problems. The Chamber supports data collection as a means of improving and measuring health care quality, tracking employer-based coverage and the number of uninsured persons, and tracking trends in health care costs and cost drivers. (This echos the position of Rep. Fran Bradley (R-Rochester), chair of HHS Finance Committee)

The Chamber wants to re-engage consumers in health care decisions, giving them information on the cost differences between providers: "Consumers who are empowered by information are our best chance at holding down health care costs," she said.

Twila Brase, president of CCHC, countered the Chamber's position by quoting from a publication put out by The Harris Poll company, which says that despite millions of people knowing about report cards on health care institutions, only 1 percent chooses to use them. Instead location, reputation, word-of-mouth and personal experience determine where a patient will go. Rep. Haas later also reminded the committee that few ever read their insurance policy - until they're on the way to the doctor's office.

Additional testifiers, brought by CCHC to address concerns over state data collection, were: Barb Wallace, patient; Jim Rea, information technology professional, and Margaret Brunner, medical researcher.

Unable to attend, a physician and a lawyer sent in written testimony. However, because of time constraints, other testifiers in attendance - one physician, one citizen, and the Minnesota Civil Liberties Union - were not given an opportunity to be heard.

Never-the-less, the bill passed easily, with the only audible and visible dissent coming from Representatives Loren Solberg (D-Grand Rapids) and Phyllis Kahn (D-Minneapolis).

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The Senate Freeze-Out

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So far, no DFL Senator has stepped up to author the companion bill for Rep. Haas' initiative. Because it is a DFL-controlled Senate, a DFL-authored bill is more likely to be given a hearing. But because both the Senate and the House must pass a bill to stop the data collection, no bill means a green light for the health department.

Perhaps Senators are not hearing from their constituents.

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No Word from the Governor

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The new health commissioner, Dianne Mandernach, is in place. But still no word from the Governor on his position over this issue. And Commissioner Mandernach did not attend the Government Operations Committee hearing.

Nor is there any comment about the cost of collecting all this data and the cost of doing research using the data of Minnesota citizens in the time of a severe budget crunch. The $400,000 price tag is likely low, considering the growth of the department's research using data they already collect on health plans.

If you wish to make your opinion known: EMAIL: tim.pawlenty@state.mn.us. MAIL: Governor Tim Pawlenty, Office of the Governor, 130 State Capitol, 75 Rev. Dr. MLK Blvd., St. Paul, MN 55155. PHONE: 651-296-3391 and 1-800-657-3717. FAX: 651-296-2089.

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Genetic Privacy Concern - Birth Defect Registry

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The Governor's budget includes a $3.045 million increase in FY 2004 and $2.727 million in FY 2005 for continuing and enhancing the Newborn Screening Program.

For years, blood samples from newborns have been sent to the State for testing - without parent permission. Several concerns exist for this screening process: 1) For at least 38 years, the State has been getting a DNA sample from every newborn citizen, 2) the State's plan to create a state registry of defective citizens.

CCHC's concerns over the 1997 birth defectives registry proposal caused legislators to amend the legislation to include patient and parent consent prior to entry of children's names into the registry.

The health department stripped the birth defectives registry operating language out of the 1997 omnibus HHS bill to avoid the consent requirements. This temporarily derided the state's efforts, but the enabling 1996 state law still exists.

We believe the health department has now resumed its mission to create this database, and is using an old newborn screening law (first enacted in 1965) and 1999 funding for advanced screening equipment. The new equipment allows screening for multiple abnormalities with just one test. Since the department is required to provide follow-up to assure that infants are connected with specialty care, this process (along with the 1996 authority to create a birth defects database) will likely lead to the databasing and tracking of any child with abnormal results - all without parent consent.

Eventually every child (and as time goes on, every adult) diagnosed with a birth defect could end up on the state database.

Furthermore, the state is collaborating with Mayo Clinic's Biochemical Genetics Laboratory on the effort. In 2002, Mayo announced that they are in Phase II of creating a genetic database using tissue and fluid samples of all 5-6 million patients that have ever been seen at Mayo Clinic. They intend to seek funding from the legislature this year for the effort. They eventually hope to make the data available around the world. The one problem they say they are wrestling with is patient confidentiality. They should be wrestling with patient consent.

Whether, or how, these two issues may relate remains to be seen, but the $5.7 million budget increase may significantly facilitate the creation of a state registry of children and adults, who will become life-long subjects of state surveillance because they are deemed or found to have a birth defect.

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CCHC's Cost-Cutting Ideas Included in Budget

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CCHC sent a letter to the Governor and provided testimony for the House Health and Human Services Finance Committee. At least 18 different ideas were given to "do more with less". Several, but not enough, of those ideas were included in the Governor's budget proposal:

- Consolidating the Health Care Access Fund (where Minnesota Provider Tax dollars are kept) and the General Fund. This will eliminate the MN Department of Health's ready access to $7 - 10 million in funds for health care data collection and research. They'll have to prove a need and compete with other items that use General Fund dollars.

- Combining MinnesotaCare and General Assistance Medical Care. CCHC has suggested that MNCare be combined with Medical Assistance because in fact MN Care is an expanded Medical Assistance program. MNCare was created by granting a waiver (exemption) to the Medical Assistance program so that the eligibility could be expanded and recipients could pay a sliding fee.

- Reducing eligibility for MinnesotaCare. This means that the state will not continue to subsidize approximately 20,000 of the approximately 190,000 people on MinnesotaCare (all of which are ineligible for Medical Assistance because their income is too high)

- Co-payments for subsidy programs. The Governor has recommended co-payments for eyeglasses, etc. for Medical Assistance, MinnesotaCare, and GAMC.

Unfortunately, CCHC's ideas that were not part of the Governor's recommendations included: taxing HMOs and non-charitable hospitals to replace the MinnesotaCare provider tax, passing Medical Savings Account legislation in anticipation of federal changes, and providing citizens with a full state tax deduction for purchase of their own insurance.

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House Civil Law Committee Members

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Meets: Tuesdays and Wednesdays, 2:30 p.m. in Room 10 of the State Office Building.

CHAIR: Mary Liz Holberg (R) 651-296-6926 rep.maryliz.holberg@house.mn

VICE CHAIR: Chris DeLaForest (R) 651-296-4231 rep.chris.delaforest@house.mn

Lead-DFL: Len Biernat (DFL) 651-296-4219 rep.len.biernat@house.mn

Dick Borrell (R) 651-296-4336 rep.dick.borrell@house.mn

Paul Kohls (R) 651-296-4282  rep.paul.kohls@house.mn

Eric Lipman (R) 651-296-4244 rep.eric.lipman@house.mn

Steve Smith (R) 651-296-9188 rep.steve.smith@house.mn

Howard Swenson (R) 651-296-8634 rep.howard.swenson@house.mn

Lynn Wardlow (R) 651-296-4128 rep.lynn.wardlow@house.mn

Joe Atkins (DFL) 651-296-4192 rep.joe.atkins@house.mn

Ron Latz (DFL) 651-296-7026 rep.ron.latz@house.mn

Thomas Pugh (DFL) 651-296-6828 rep.tom.pugh@house.mn

Committee Administrator: Dennis Virden 296-6860

Committee Legislative Assistant: David A.P. Anderson 296-4178

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Citizens' Council on Health Care

1954 University Ave.W., Suite 8

St. Paul, MN 55104

651-646-8935 phone

651-646-0100 fax

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