medical records letter

[James Love <love@tap.org>]

  This is what Gary sent up on the hill today. jamie
  
                                               May 15, 1996
  
  Senator Nancy Kassebaum, Chair
  Committee on Labor and Human Resources
  428 Dirksen Senate Office Bldg.
  Washington, DC 20510-6300
  
  Senator John Warner, Chair
  Committee on Rules and Administration
  305 Russell Senate Office Bldg.
  Washington, DC 20510-6325
  
  Dear Senators Kassebaum and Warner:
  
       We are writing to express the frustrations of many American
  citizens who cannot effectively monitor the actions of the U.S.
  Congress, because the Senate does not give ordinary citizens the
  same access to key legislative documents that it gives to
  interest groups that can afford full-time lobbyists.  Our
  immediate concern is the refusal of the Senate Labor Committee to
  provide online access to a series of discussion drafts of S.
  1360, the Medical Records Confidentiality Act.  This
  controversial legislation seeks to pre-empt state laws in favor
  of a federal system regulating access to personal medical
  records.  The legislation is controversial and complex and the
  stake holders are many.  Privacy and consumer groups say the
  legislation provides too much access and too little privacy,
  while industry groups are pressing for even easier access to
  identified medical records.
  
       The legislation was introduced last October.  Beginning in
  April, the Committee on Labor and Human Resources has prepared
  several "discussion drafts" for a new chairman's mark.  These
  drafts have been given to lobbyists, but the Committee staff has
  refused to make the text of the drafts available on the Internet
  where they would be readily available to the general public.  As
  a consequence, as Equifax, IBM, Dun & Bradstreet, TRW, Blue
  Cross, Aetna, and other groups with full-time lobbyists read each
  and every new discussion draft, the general public mistakenly
  believes the October 24, 1995 version of the bill represents the
  relevant text of the legislation.  
  
       Why keep the discussion drafts from the general public?  The
  bill is very long, and it is costly and difficult to distribute
  the bill in the paper formats. Most citizens don't have any way
  of even knowing that the various discussion drafts even exist.
  
       With efforts to push for a rapid mark-up on S. 1360 it seems
  urgent to resolve this issue soon.  More generally, however, the
  Senate should adopt new rules about access to the various types
  of "unofficial" drafts of bills, including committee prints,
  manager's amendments, chairman's marks, and widely disseminated
  discussion drafts, which are the real stuff of the legislative
  process.  The text of these important documents should be placed
  on the Internet for the benefit of the general public, as soon as
  they are made available to Washington lobbyists.
  
  Sincerely,
  
  Gary Ruskin, Director
  Congressional Accountability Project
  Member, Advisory Committee, Congressional Internet Caucus
  gary@essential.org
  
  Lori Fena, Director
  Electronic Frontier Foundation
  lori@eff.org
  
  James Love, Director
  Consumer Project on Technology
  love@tap.org
  
  Jim Warren, tech-policy columnist and open-government advocate
  Government Technology Magazine, MicroTimes Magazine, etc.
  345 Swett Rd., Woodside CA 94062; voice/415-851-7075
  jwarren@well.com
  
  Daniel Downey, MD 
  Member, Medical Record Confidentiality Committee
  Virginia Mason Medical Center 
  ddowney@u.washington.edu
  
  Elaine Hopkins
  Peoria Journal-Star
  ehopkins@heartland.bradley.edu
  
  Sarah Thompson, MD
  molly@aros.net
  
  Evan P. Provisor, MD MS FACS
  evan@li.com 
  
  Beverly Woodward
  Research Associate in Philosophy and Sociology
  Brandeis University
  WOODWARD@BINAH.CC.BRANDEIS.EDU 
  
  Lauren Dame, Staff Attorney
  Public Citizen's Health Research Group
  LDAME@citizen.org
  
  Edmund Mierzwinski
  Consumer Program Director
  U.S. Public Interest Research Group (U.S. PIRG)
  ed@pirg.org
  
  Dick Mills
  rj.mills@pti-us.com
  
  Connie K. Page
  PCK11399@centum.utulsa.edu
  
  James D. Brady
  jbrady@freenet.columbus.oh.us
  
  Daniel J. O'Shea
  Faculty Member
  Hillsborough Community College
  Tampa, Florida
  doshea@ansremote.com
  
  David Mull
  dmull@usit.net
  
  Margaret Tarbet
  tarbet@swaa.com
  
  
  Gary Ruskin
  Congressional Accountability Project	|   Internet:	gary@essential.org
  P.O. Box 19446
  Washington, DC 20036
  Phone: (202) 296-2787  Fax: (202) 833-2406