[Congressional Record (Bound Edition), Volume 145 (1999), Part 20]
[Extensions of Remarks]
[Pages 28874-28875]
[From the U.S. Government Publishing Office, www.gpo.gov]



  CONFERENCE REPORT ON H.R. 3064, DISTRICT OF COLUMBIA APPROPRIATIONS 
                               ACT, 2000

                                 ______
                                 

                               speech of

                        HON. FORTNEY PETE STARK

                             of california

                    in the house of representatives

                       Thursday, October 28, 1999

  Mr. STARK. Mr. Speaker, I rise today in opposition to the DC/Labor-
HHS bill's 3-month moratorium on the Secretary of Health and Human 
Services (HHS) organ allocation regulations which the President 
yesterday cited in his veto message as a highly objectionable 
provision. I also rise today in objection to the Organ Procurement and 
Transplantation Network Amendments of 1999 (H.R. 2418)--a bill to amend 
and reauthorize the National Organ Transplant Act of 1984.
  Over 63,000 Americans are currently awaiting an organ transplant. 
Almost 5,000 people die each year in this country waiting for an organ 
transplant. Unfortunately, the current system is based on geographic 
boundaries--so that while a patient in one State may wait 21 days for 
an organ transplant, a patient in another State may wait an average of 
over 300 days.
  The HHS organ allocation regulation attempts to move to a system 
based on medical necessity instead of geography. As the President 
stated yesterday: ``This rule, which was strongly validated by an 
Institute of Medicine (IoM) report, provides a more equitable system of 
treatment . . . its implementation would likely prevent the deaths of 
hundreds of Americans.'' The HHS regulation incorporates comments from 
the transplant community, patients, and the general public to ensure 
the neediest patients receive organs first--regardless of where they 
live.
  However, the DC/Labor-HHS bill delays the HHS Secretary's organ 
allocation rules. The current 90-day moratorium may not sound like a 
lot of time--but to patients awaiting transplants, every day counts.
  Furthermore, during those 3 months, much can be accomplished by those 
who oppose the Secretary's regulation. For example, the Organ 
Procurement and Transplantation Network Amendments of 1999 (H.R. 2418) 
could reach the House floor. H.R. 2418 would render moot the recently 
revised HHS organ allocation regulations. Further, the bill would 
remove the Secretary's legitimate authority to oversee the program, 
provide unreasonable protections for the current contractor, while it 
simultaneously makes data less available to the public.
  The United Network for Organ Sharing (UNOS) is the current private 
contractor in charge of distributing organs procured for transplant. 
H.R. 2418 essentially gives UNOS a monopoly on the contract. I am 
submitting the following article from the most recent issue of Forbes 
magazine as further evidence of the need to oppose legislation which 
protects the current contractor and of the imperative need to oppose 
any delay of the HHS organ allocation regulation:


[[Page 28875]]

                 [ From Forbes Magazine, Nov. 1, 1999]

                             The Organ King

                         (By Brigid McMenamin)

       Ever since Forbes exposed the federal monopoly that's 
     chilling the supply of transplantable organs and letting 
     Americans who need them die needlessly (Forbes, Mar. 11, 
     1996), Health & Human Services Secretary Donna Shalala has 
     been trying to challenge the way United Network for Organ 
     Sharing operates.
       But the Richmond, Va.-based cartel will have none of it. 
     Using a heavy-handed mix of litigation, lobbying and bullying 
     of its opponents, UNOS has solidified its position as the 
     federal contractor in charge of deciding which people get new 
     kidneys, livers or hearts.
       Under the UNOS system, most organs are shared only within 
     62 regional territories. A potential recipient in, say, New 
     York, where donations are low, can expect to wait months for 
     an organ to show up, even though there may be so many donors 
     across the river in New Jersey that New Jersey patients are 
     getting transplants after short waits or when they are far 
     from desperate.
       Though UNOS has begun to relax the locals-first policy, 
     still, last year 4,855 Americans died while waiting for 
     transplants. (This doesn't even count people pulled off the 
     list after they became too sick to handle a transplant.) It 
     is a matter of debate how much lower the number of deaths 
     would be if the system for obtaining and allocating organs 
     were more rational. But Consad, a research outfit in 
     Pittsburgh, estimates that at least 1,000 people die 
     needlessly each year.
       When Shalala urged that organs be shared over wider 
     regions, UNOS Executive Director Walter K. Graham refused. He 
     decreed, in a memo to his member hospitals and organ banks, 
     that UNOS doesn't have to take direction from the federal 
     government on this point.
       UNOS' main source of funding is the $375 registration fee 
     potential organ recipients must pay to get on the waiting 
     list. That amounts to some $13 million a year, money that is 
     supposed to be spent mostly to match organs with suitable 
     recipients. In reality, at best half of the money goes to 
     that.
       What about the rest? Graham and his 40 board members spend 
     some $1 million each year on jetting around and on meetings 
     and conferences. A new $7 million headquarters building is 
     planned. In 1997, some $1.6 million went for items network 
     officials refuse to explain. ``They really never tell you 
     what they're spending money on,'' says veteran board member 
     John Fung, a liver surgeon at the University of Pittsburgh.
       When Shalala tried to exert more control over the rising 
     registration fees, Graham challenged her in a proceeding 
     before the U.S. General Accounting Office, claiming she had 
     no right even to know how he spent the fees. The suit was 
     settled; Shalala backed down.
       Why not simply bring in another contractor to ration 
     organs? Good luck. The congressional committee in charge of 
     such matters is headed by Representative Thomas Bliley, from 
     UNOS' home city of Richmond. His cousin Paul S. Bliley is a 
     law partner of UNOS lawyer Malcolm E. (Dick) Ritsch. Last 
     fall, then-Louisiana Congressman Robert Livingston, whose 
     home state includes eight profitable transplant centers, 
     pushed through a bill halting further attempts by Shalala to 
     control the contractor.
       After the Senate rejected this moratorium, Livingston got 
     it tacked onto another bill behind closed doors by 
     threatening to hold up funding for the International Monetary 
     Fund. The moratorium ends Oct. 21. But UNOS has already had 
     Wisconsin Congressman David Obey tack another one-year 
     extension onto a bill that was set to go to the full House 
     for a vote in October. His state's four transplant centers 
     stand to lose organs if UNOS loses its grip.
       Craig Howe, executive director of the National Marrow Donor 
     Program, recently expressed interest in having his 
     organization bid on the organ contract. After UNOS found out 
     he was interested, his board members, who include 14 
     physicians, axed him. Although some powerful and prominent 
     surgeons like Fung are an exception, most doctors involved in 
     the business fear offending UNOS lest their organ supply be 
     affected.
       In another instance FORBES is aware of, UNOS threatened to 
     retaliate against an outfit it perceived as a rival bidder 
     for the organ allocation job.
       Tax-exempt groups like UNOS are supposed to make their 
     financial statements available for public perusal. But UNOS 
     hides significant activity behind two little-known affiliates 
     that aren't required to disclose anything.
       The first is the UNOS Foundation, a six-year-old shadow 
     organization run by UNOS staffers. Spokesman Robert 
     Spieldenner claims the foundation doesn't have to file tax 
     returns because it brings in less than $25,000 a year. The 
     UNOS Foundation owns something called the Transplant 
     Informatics Institute, a for-profit company run by organ 
     network staffers. Transplants Informatics is so secret that 
     even some UNOS board members are unaware that it exists.
       What does the institute do? The government thinks it 
     markets UNOS-developed software to organ network members. In 
     an audit looking into the use of registration fees for 
     lobbying, the Office of the Inspector General got just that 
     impression. What the institute really does is analyze and 
     sell organ network data to profit-making companies like 
     Fujisawa, the Japanese firm that sells drugs for transplant 
     patients. When the institute has not been able to cover its 
     costs with such sales, UNOS has used its registration fee 
     income to make up the difference. Prospective organ 
     recipients are therefore effectively funding this hidden 
     business.
       You'd think someone on UNOS' board would scream bloody 
     murder about all this. After all, the 40-person board is 
     almost half doctors, dedicated to saving lives. But the 
     directors have little idea what's going on. ``The board is 
     kind of in the dark,'' sighs patient advocate Charles Fiske, 
     a former board member.
       ``We received an annual financial report and pretty much 
     accepted it as written,'' says University of Oklahoma 
     transplant doctor Larry R. Pennington, a board member from 
     1996 to 1998. They really don't know how to interpret the 
     data. ``All I'm familiar with is hospital sort of activity,'' 
     admits transplant physician William Harmon.
       Realizing that UNOS is out of control, Shalala has put out 
     feelers for a replacement. ``I hope we have some bidders this 
     time,'' sighs Claude Fox, a pediatrician who, as 
     administrator of the Health Resources & Services 
     Administration, oversees transplants for Shalala. The only 
     prospect so far is Santa Monica-based Rand.
       Determined to see that Rand does not walk off with the 
     contract, UNOS' lobbyists are pushing for a law that would 
     insure that Graham's group will keep the contract forever. 
     Last month Bliley's committee held hearings on a bill which 
     would require the organ rationing contractor to have 
     experience, something no group but UNOS has. It would also 
     allow UNOS' members to vote on the choice.
       ``Anything that gives them more of a stranglehold isn't in 
     the public interest,'' says Fox. ``It's like giving the EPA 
     to some land-fill company,'' says Dr. Fung.
       It would be nice if UNOS didn't have a lock on this 
     business. Better still if the federal government stepped out 
     of the process altogether and let doctors come up with 
     creative ways to increase the supply of organs. (How about 
     giving people who sign up as potential donors when they are 
     young some priority in getting organs when they are older?) 
     Once there are enough hearts and livers to go around, there 
     won't be unaccountable arbiters holding sway over our lives.

     

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