The U.S. House Energy and Commerce (E&C) Committee will vote the week of May 18, 2015 on the 21st Century Cures Act. If passed, it will go to the floor of the U.S. House for vote and passage. The bills authors are U.S. Reps. Fred Upton (R-MI), Diana DeGette (D-CO), Joe Pitts (R-PA), Frank Pallone (D-NJ) and Gene Green (D-TX).

The Cures Act (Subtitle G, section 1124) would authorize millions of corporate and government outsiders to have access to private patient records without patient consent. The bill defines research using private health data (e.g. medical, medication, behavioral, genetic, mental health) as “public health activities” and “health care operations.”

Under these definitions, no patient consent is required for access, per the federal HIPAA “no privacy” rule. Thus, hospitals, doctors, clinics, health plans, and data clearinghouses (defined as "covered entities” in HIPAA) as well as 1.5 million business associates engaged in “health care operations,” plus all government agencies engaged in “public health activities” would be given access to medical records without patient consent. NOTE: the definition of “health care operations” is 390 words long.

The Cures Act will give Obamacare a boost. The Obamacare research institute (PCORI) and other ACA-established entities will be empowered to use patient, doctor and treatment data to implement Obamacare’s controls over the practice of medicine.

To make it easy to access all our data, Section 3001 (Interoperability) would require electronic health record (EHR) companies to allow the “secure transfer of the entirety of a patient’s data from any and all” EHRs for “authorized use.” It would also require “Complete Access to Health Data” by requiring the EHR to “allow access to the entirety of a patient’s data” for authorized use. EHR vendors that do not comply will be penalized startin in 2018. Under this bill, "authorized use" would include researcher access to health data without patient consent.

The American Hospital Association concurs with our concerns telling Politico Pro that the data-sharing provision "is too broadly encompassing in allowing access to patient data for undefined research purposes; this undermines the trusted relationship between providers and their patients.”

Contact as many members of the E&C Committee as you can. 

Their phone numbers follow.

Ask for two things: 1) Section 1124 to be deleted so private medical records are not open for millions of outsiders to analyze and conduct research without patient consent, and 2) to enact written informed patient consent requirements for transferring and accessing data in our medical records (including for health care operations and public health activities) before they require EHRs to transfer and allow access to "the entirety of a patient's data."

A Section-by-Section Summary of the bill is attached. Click on "View pdf" below.

 

Phone Numbers

Republican Members:

Fred Upton (MI) - Chairman - (202) 225-3761
Joe Barton (TX) - Chairman Emeritus – (202) 225-2002
Ed Whitfield (KY) - (202) 225-3115
John Shimkus (IL) - (202) 225-5271
Joseph R. Pitts (PA) - (202) 225-2411
Greg Walden (OR) - (202)-225-6730
Tim Murphy (PA) - (202) 225-2301
Michael C. Burgess (TX) - (202) 225-7772
Marsha Blackburn (TN) – Vice Chairman – (202) 225-2811 
Steve Scalise (LA) - (202) 225-3015
Bob Latta (OH) - (202) 225-6405
Cathy McMorris Rodgers (WA) - (202) 225-2006
Gregg Harper (MS) - (202) 225-5031
Leonard Lance (NJ) -  (202) 225-5361
Brett Guthrie (KY) -  (202) 225-3501
Pete Olson (TX) -  (202) 225-5951
David McKinley (WV) - (202) 225-4172
Mike Pompeo (KS) - (202) 225-6216
Adam Kinzinger (IL) - (202) 225-3635
Morgan Griffith (VA) - (202) 225-3861 
Gus Bilirakis (FL) - (202) 225-5755
Bill Johnson (OH) - (202) 225-5705
Billy Long (MO) - (202) 225-6536
Renee Ellmers (NC) - (202) 225-4531
Larry  Bucshon (IN) - (202) 225-4636
Bill Flores (TX) - (202) 225-6105
Susan Brooks (IN) - (202)-225-2276
Markwayne Mullin (OK) - (202) 225-2701
Richard Hudson (NC) - (202) 225-3715
Chris Collins (NY) - (202)-225-5265
Kevin Cramer (ND) - (202)-225-2611


Democratic Members:

Frank Pallone, Jr. (NJ) – (202) 225-4671
Bobby L. Rush (IL) – (202) 225-4372
Anna G. Eshoo (CA) – (202) 225-8104
Eliot L. Engel (NY) – (202) 225-2464
Gene Green (TX) – (202) 225-1688
Diana DeGette (CO) – (202) 225-4431
Lois Capps (CA) – (202) 225-3601
Michael F. Doyle (PA) – (202) 225-2135
Jan Schakowsky (IL) – (202) 225-2111
G.K. Butterfield (NC) – (202) 225-3101
Doris O. Matsui (CA) – (202) 225-7163
Kathy Castor (FL) – (202) 225-3376
John Sarbanes (MD) – (202) 225-4016
Jerry McNerney (CA) – (202) 225-1947
Peter Welch (VT) – (202) 225-4115
Ben Ray Lujan (NM) – (202) 225-6190
Paul Tonko (NY) – (202) 225-5076
John Yarmuth (KY) – (202) 225-5401
Yvette D. Clarke (NY) – (202) 225-6231
David Loebsack (IA) – (202) 225-6576
Kurt Schrader (OR) – (202) 225-5711
Joseph P. Kennedy III (MA) – (202) 225-5931
Tony Cardenas (CA) – (202) 225-6131
 

view pdf