[Congressional Record (Bound Edition), Volume 145 (1999), Part 7]
[Extensions of Remarks]
[Pages 10018-10019]
[From the U.S. Government Publishing Office, www.gpo.gov]



            THE LIVING ORGAN DONATION INCENTIVES ACT OF 1999

                                 ______
                                 

                         HON. KAREN L. THURMAN

                               of florida

                    in the house of representatives

                         Tuesday, May 18, 1999

  Mrs. THURMAN. Mr. Speaker, I never thought that I would come before 
my colleagues to discuss the importance of organ donation. Frankly, it 
was never an issue until seven years ago--organ donation was something 
other people did and organ transplants affected other people's 
families.
  Well, I am here to tell you that this issue can affect anyone. You 
never know.
  My husband, John, suffers from Polycystic Kidney Disease. John 
endured years of dialysis while awaiting a kidney transplant. In 1996,

[[Page 10019]]

after waiting three years for a kidney, we finally received word that 
the local organ procurement organization (OPO) in Gainesville, Florida 
found a matching organ.
  In a country where about 5,000 Americans die each year because there 
are not enough donated livers, kidneys and other organs to go around, 
John was clearly one of the lucky ones.
  The sad fact is that the disparity between the supply and demand of 
organs available for transplant contributes to the deaths of eleven 
people daily. This is not just a problem, this is a health care crisis. 
Between 1988 and 1996, the number of people on the waiting list for an 
organ transplant increased by 312 percent and the number of wait list 
deaths increased 261 percent. Additionally, in 1996, a new name was 
added to the transplant waiting list every nine minutes.
  Viable, transplantable organs are provided from two primary sources: 
brain-dead victims of trauma (cadaveric donation) or living organ 
donors. The National Kidney Foundation (NKF) believes that we have only 
begun to tap the potential of living organ donation. Scientists and 
organ donation proponents alike firmly believe that increasing the 
frequency of living organ donation would not only increase the 
availability of organs but also lessen the transplantation rejection 
rate and reduce costs associated with dialysis.
  However, living donors are faced with loss of income attributable to 
the time away from work needed for evaluation, surgery and recovery, 
making it difficult to pay rents, mortgages and other bills. There are 
also costs associated with their donation which are not reimbursable by 
Medicare: for example, travel, lodging, meals and child care. I firmly 
believe that Congress should take a more proactive role in promoting 
living organ donation by addressing these financial disincentives.
  According to a study by researchers at the University of North 
Carolina at Chapel Hill, 24 percent of family members indicated that 
financial issues kept them from being living organ donors. Four donors 
in their study alone lost their jobs when they revealed to their 
employers their plans to be living related donors and the need to have 
recovery time after surgery.
  We need a concerted and well-established policy on living organ 
donation in this country. We should not only seek to provide the best 
quality-of-life for our constituents, but also do so in a fiscally 
responsible manner. By removing some of the financial disincentives 
associated with living organ donation, Congress can ensure better graft 
survival rates, increase the number of organs available for 
transplantation, and reduce the costs associated with dialysis and 
repeat transplantation.
  That is why today I am introducing the Living Organ Donation 
Incentives Act of 1999. This legislation would amend the Family and 
Medical Leave Act (FMLA) to allow living organ donation to qualify as a 
reason for taking time off work. This would include time spent for 
tests, evaluations, travel time and recuperation. The FMLA currently 
covers employers in the private sector with 50 or more employees and 
most public employees at the federal, state and local level. Under 
FMLA, employers are required to grant 12 weeks unpaid leave in any one 
calendar year to parents to care for their newborn or newly adopted 
child or a seriously ill child, spouse, or parent and to temporarily 
disabled workers. This provision would specify that living organ 
donation would qualify as a reason to take leave. In addition, by 
singling out living organ donation as a qualifier for FMLA, Congress 
can bring much needed attention to the benefits of this type of 
donation.
  In addition, this legislation would allow the Secretary of Health and 
Human Services (HHS) to develop a grant program to aid individuals with 
the high costs associated with living organ donation. Medicare 
currently pays for the costs associated with a number of solid organ 
transplants. However, Medicare does not cover the costs of travel, 
lodging, child care, etc. These costs can be an extremely difficult 
burden for many potential donors. By developing a grant program for 
eligible beneficiaries, Congress could help increase the number of 
living organ donations.
  This legislation would also increase the payment amount (referred to 
as the `composite rate') by 2.9 percent for renal dialysis services 
under Medicare. The current rate has remained essentially unchanged 
since 1983, and the Medicare Payment Advisory Commission recently 
expressed concern that quality of dialysis services may decline if the 
rate is not increased. In recent years, costs have risen in relation to 
the composite rate. In fact, the independent and nonpartisan Medicare 
Payment Advisory Commission (MedPAC) recently expressed concern that 
without an increase in the payment the quality of dialysis services may 
decline.
  This legislation is supported by the National Kidney Foundation, 
American Society of Transplantation, National Renal Administrators 
Association, American Society of Transplant Surgeons, American Society 
of Nephrology, American Neprhology Nurses Association, North American 
Transplant Coordinators Organization, Patient Access To Transplantation 
Coalition, Renal Physicians Associations.
  I would also like to thank and express my appreciation for the ideas 
and suggestions I received from these organizations. In particular, I 
would like to acknowledge the contributions of Troy Zimmerman and Dolph 
Chianchiano with the National Kidney Foundation, Gwen Gampel with the 
National Renal Administrators Association, and Kathy Lanza Turrisi, 
Program Director of the Medical University of South Carolina. Together, 
we have crafted legislation that will tear down the disincentives 
associated with living organ donation.
  Mr. Speaker, in the world of organ donation, supply simply does not 
meet demand. Together, we need to develop strategies for greater organ 
donation. I urge my colleagues to join me in cosponsoring this 
important and urgent legislation.

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