[Congressional Record (Bound Edition), Volume 149 (2003), Part 5]
[House]
[Pages 5980-5984]
[From the U.S. Government Publishing Office, www.gpo.gov]




                 ORGAN DONATION IMPROVEMENT ACT OF 2003

  Mr. TAUZIN. Mr. Speaker, I move to suspend the rules and pass the 
bill

[[Page 5981]]

(H.R. 399) to amend the Public Health Service Act to promote organ 
donation.
  The Clerk read as follows:

                                H.R. 399

       Be it enacted by the Senate and House of Representatives of 
     the United States of America in Congress assembled,

     SECTION 1. SHORT TITLE.

       This Act may be cited as the ``Organ Donation Improvement 
     Act of 2003''.

     SEC. 2. SENSE OF CONGRESS.

       (a) Public Awareness of Need for Organ Donation.--It is the 
     sense of the Congress that the Federal Government should 
     carry out programs to educate the public with respect to 
     organ donation, including the need to provide for an adequate 
     rate of such donations.
       (b) Family Discussions of Organ Donations.--The Congress 
     recognizes the importance of families pledging to each other 
     to share their lives as organ and tissue donors and 
     acknowledges the importance of discussing organ and tissue 
     donation as a family.
       (c) Living Donations of Organs.--The Congress--
       (1) recognizes the generous contribution made by each 
     living individual who has donated an organ to save a life; 
     and
       (2) acknowledges the advances in medical technology that 
     have enabled organ transplantation with organs donated by 
     living individuals to become a viable treatment option for an 
     increasing number of patients.

     SEC. 3. PAYMENT OF TRAVEL AND SUBSISTENCE EXPENSES INCURRED 
                   TOWARD LIVING ORGAN DONATION.

       Section 377 of the Public Health Service Act (42 U.S.C. 
     274f) is amended to read as follows:


  ``payment of travel and subsistence expenses incurred toward living 
                             organ donation

       ``Sec. 377. (a) In General.--The Secretary may make awards 
     of grants or contracts to States, transplant centers, 
     qualified organ procurement organizations under section 371, 
     or other public or private entities for the purpose of--
       ``(1) providing for the payment of travel and subsistence 
     expenses incurred by individuals toward making living 
     donations of their organs (in this section referred as 
     `donating individuals'); and
       ``(2) in addition, providing for the payment of such 
     incidental nonmedical expenses that are so incurred as the 
     Secretary determines by regulation to be appropriate.
       ``(b) Eligibility.--
       ``(1) In general.--Payments under subsection (a) may be 
     made for the qualifying expenses of a donating individual 
     only if--
       ``(A) the State in which the donating individual resides is 
     a different State than the State in which the intended 
     recipient of the organ resides; and
       ``(B) the annual income of the intended recipient of the 
     organ does not exceed $35,000 (as adjusted for fiscal year 
     2004 and subsequent fiscal years to offset the effects of 
     inflation occurring after the beginning of fiscal year 2003).
       ``(2) Certain circumstances.--Subject to paragraph (1), the 
     Secretary may in carrying out subsection (a) provide as 
     follows:
       ``(A) The Secretary may consider the term `donating 
     individuals' as including individuals who in good faith incur 
     qualifying expenses toward the intended donation of an organ 
     but with respect to whom, for such reasons as the Secretary 
     determines to be appropriate, no donation of the organ 
     occurs.
       ``(B) The Secretary may consider the term `qualifying 
     expenses' as including the expenses of having one or more 
     family members of donating individuals accompany the donating 
     individuals for purposes of subsection (a) (subject to making 
     payment for only such types of expenses as are paid for 
     donating individuals).
       ``(c) Limitation on Amount of Payment.--
       ``(1) In general.--With respect to the geographic area to 
     which a donating individual travels for purposes of 
     subsection (a), if such area is other than the covered 
     vicinity for the intended recipient of the organ, the amount 
     of qualifying expenses for which payments under such 
     subsection are made may not exceed the amount of such 
     expenses for which payment would have been made if such area 
     had been the covered vicinity for the intended recipient, 
     taking into account the costs of travel and regional 
     differences in the costs of living.
       ``(2) Covered vicinity.--For purposes of this section, the 
     term `covered vicinity', with respect to an intended 
     recipient of an organ from a donating individual, means the 
     vicinity of the nearest transplant center to the residence of 
     the intended recipient that regularly performs transplants of 
     that type of organ.
       ``(d) Relationship to Payments Under Other Programs.--An 
     award may be made under subsection (a) only if the applicant 
     involved agrees that the award will not be expended to pay 
     the qualifying expenses of a donating individual to the 
     extent that payment has been made, or can reasonably be 
     expected to be made, with respect to such expenses--
       ``(1) under any State compensation program, under an 
     insurance policy, or under any Federal or State health 
     benefits program; or
       ``(2) by an entity that provides health services on a 
     prepaid basis.
       ``(e) Definitions.--For purposes of this section:
       ``(1) The term `covered vicinity' has the meaning given 
     such term in subsection (c)(2).
       ``(2) The term `donating individuals' has the meaning 
     indicated for such term in subsection (a)(1), subject to 
     subsection (b)(2)(A).
       ``(3) The term `qualifying expenses' means the expenses 
     authorized for purposes of subsection (a), subject to 
     subsection (b)(2)(B).
       ``(f) Authorization of Appropriations.--For the purpose of 
     carrying out this section, there is authorized to be 
     appropriated $5,000,000 for each of the fiscal years 2004 
     through 2008.''.

     SEC. 4. PUBLIC AWARENESS; STUDIES AND DEMONSTRATIONS.

       Part H of title III of the Public Health Service Act (42 
     U.S.C. 273 et seq.) is amended by inserting after section 377 
     the following section:


             ``public awareness; studies and demonstrations

       ``Sec. 377A. (a) Public Awareness.--The Secretary shall 
     (directly or through grants or contracts) carry out a program 
     to educate the public with respect to organ donation, 
     including the need to provide for an adequate rate of such 
     donations.
       ``(b) Studies and Demonstrations.--The Secretary may make 
     grants to public and nonprofit private entities for the 
     purpose of carrying out studies and demonstration projects 
     with respect to providing for an adequate rate of organ 
     donation.
       ``(c) Grants to States.--The Secretary may make grants to 
     States for the purpose of assisting States in carrying out 
     organ donor awareness, public education and outreach 
     activities and programs designed to increase the number of 
     organ donors within the State, including living donors. To be 
     eligible, each State shall--
       ``(1) submit an application to the Department in the form 
     prescribed;
       ``(2) establish yearly benchmarks for improvement in organ 
     donation rates in the State;
       ``(3) develop, enhance, or expand a State donor registry, 
     which shall be available to hospitals, organ procurement 
     organizations, tissue banks, eye banks, and other States upon 
     a search request; and
       ``(4) report to the Secretary on an annual basis a 
     description and assessment of the State's use of these grant 
     funds, accompanied by an assessment of initiatives for 
     potential replication in other States.
     Funds may be used by the State or in partnership with other 
     public agencies or private sector institutions for education 
     and awareness efforts, information dissemination, activities 
     pertaining to the State donor registry, and other innovative 
     donation specific initiatives, including living donation.
       ``(d) Annual Report to Congress.--The Secretary shall 
     annually submit to the Congress a report on the activities 
     carried out under this section, including provisions 
     describing the extent to which the activities have affected 
     the rate of organ donation.
       ``(e) Authorization of Appropriations.--
       ``(1) In general.--For the purpose of carrying out this 
     section, there are authorized to be appropriated $15,000,000 
     for fiscal year 2004, and such sums as may be necessary for 
     each of the fiscal years 2005 through 2008. Such 
     authorization of appropriations is in addition to any other 
     authorizations of appropriations that are available for such 
     purpose.
       ``(2) Studies and demonstrations.--Of the amounts 
     appropriated under paragraph (1) for a fiscal year, the 
     Secretary may not obligate more than $2,000,000 for carrying 
     out subsection (b).''.

     SEC. 5. EFFECTIVE DATE.

       The amendments made by this Act take effect on the date of 
     the enactment of this Act.

  The SPEAKER pro tempore. Pursuant to the rule, the gentleman from 
Louisiana (Mr. Tauzin) and the gentleman from Louisiana (Mr. John) each 
will control 20 minutes.
  The Chair recognizes the gentleman from Louisiana (Mr. Tauzin).


                             General Leave

  Mr. TAUZIN. Mr. Speaker, I ask unanimous consent that all Members may 
have 5 legislative days within which to revise and extend their remarks 
and to insert extraneous material on H.R. 399, the bill under 
consideration.
  The SPEAKER pro tempore. Is there objection to the request of the 
gentleman from Louisiana?
  There was no objection.
  Mr. TAUZIN. Mr. Speaker, I yield such time as he may consume to the 
gentleman from the great State of Florida (Mr. Bilirakis), the chairman 
of the Subcommittee on Health, that produced this important 
legislation.
  Mr. BILIRAKIS. Mr. Speaker, I appreciate the gentleman's yielding me 
this time, and I rise in strong support

[[Page 5982]]

of H.R. 399, the Organ Donation Improvement Act of 2003. This 
bipartisan bill was unanimously approved by the Committee on Energy and 
Commerce in February, and I urge all of my colleagues to join me in 
supporting this timely legislation.
  Mr. Speaker, we are all aware of the great need for donated organs 
and tissue. According to the United Network for Organ Sharing, there 
are 80,791 people currently waiting for a transplant. Sadly, only 
18,693 individuals had received a transplant as of September 2002, and 
more than 4,500 Americans died, died while on the waiting list.
  Fortunately, Mr. Speaker, there is hope. Living donors represent a 
growing segment of the total organ donation pool. In fact, living 
donors represented over half of all donors in the first 9 months of 
2002. That is why H.R. 399 authorizes the Secretary of Health and Human 
Services to award grants for the purpose of covering travel and 
subsistence expenses incurred by living organ donors. While the 
decision to become a living organ donor is an intensely personal one, I 
feel that it is our responsibility to remove any financial barriers 
that might prevent someone from making the gift of life.
  H.R. 399 also provides the Secretary with $10 million in new grant 
authority to assist State governments and public and nonprofit private 
entities in developing innovative initiatives designed to increase 
organ donation rates, including living donation. I am hopeful we will 
learn some valuable lessons from these demonstration projects that we 
will be able to apply on a national scale.
  H.R. 399 is widely supported, Mr. Speaker, by the transplant 
community. Organizations supporting my bill include the American 
Society of Transplant Surgeons, the American Society of 
Transplantation, the United Network for Organ Sharing, the Association 
of Organ Procurement Organizations, the National Kidney Foundation, the 
American Liver Foundation, the North American Transplant Coordinators 
Organization, the Patient Access to Transplantation Coalition, and the 
Eye Bank Association of America.

                              {time}  1300

  Mr. Speaker, while I would never suggest that this bill encompasses 
every meritorious idea to increase organ and tissue donation, it is a 
very good bill and takes a positive step forward in our effort to 
ensure that every American has access to a donated organ or tissue when 
they need it.
  Mr. JOHN. Mr. Speaker, I yield myself such time as I may consume.
  Mr. Speaker, I rise in strong support of H.R. 399, the Organ Donation 
Improvement Act of 2003. I thank the gentleman from Florida (Mr. 
Bilirakis), along with the gentleman from Louisiana (Mr. Tauzin), the 
gentleman from Michigan (Mr. Dingell), and also the gentleman from Ohio 
(Mr. Brown), the chairman of the Subcommittee on Health, for 
introducing the legislation and working to encourage a more efficient 
and widespread organ donation program and activities.
  These numbers are staggering. Currently there are 78,000 men, women, 
and children waiting as we speak today for a kidney, heart, liver, lung 
or pancreas. Fewer than one-third of the 78,000, however, will receive 
a transplant this year. An average of 15 people die every day, one 
every 96 minutes, waiting for an organ that could have saved their 
life.
  Sadly, while most Americans indicate that they support organ 
donation, only 50 percent of the families that are asked to donate an 
organ do so. This is an important piece of legislation that will work 
towards reducing the shortage of transplantable organs, tissues, eyes. 
Grants will be used to assist States in carrying out organ donation 
awareness, public education, outreach activities, and programs designed 
to increase the number of organ donors within a State. This is a very 
important, very good piece of legislation; and I enthusiastically 
support H.R. 399.
  Mr. Speaker, I reserve the balance of my time.
  Mr. SHIMKUS. Mr. Speaker, I ask unanimous consent that I may be 
permitted to control the time of the gentleman from Louisiana (Mr. 
Tauzin).
  The SPEAKER pro tempore (Mr. LaHood). Is there objection to the 
request of the gentleman from Illinois?
  There was no objection.
  Mr. SHIMKUS. Mr. Speaker, I yield myself such time as I may consume.
  Mr. Speaker, Illinois and many other States have the ability to sign 
the back of their driver's license to give the gift of life, which is 
organ donation. That is in addition to the legislation that we have 
here on the floor today. I am pleased that the House is considering 
H.R. 399, the Organ Donation Improvement Act. This legislation builds 
on existing Department of Health and Human Services programs and 
encourages more Americans to give the gift of life.
  Medical advances and the generosity of organ and tissue donors enable 
more than 22,000 Americans per year to receive organ transplants that 
save or enhance their lives. Despite their self-sacrifice and charity 
of these donors, this is only a small proportion of the more than 
76,000 Americans who are now on the waiting list hoping to prolong 
their life by finding a matching donor.
  Tragically, the number of patients waiting for organ transplants rose 
more than five times as fast as the number of transplant operations in 
the 1990s, according to an annual report by the United Network for 
Organ Sharing. As a result, about 5,500 people die in the United States 
each year, or 15 patients each day, while waiting for a donated heart, 
liver, kidney or other organ. It is estimated that every 16 minutes a 
new name is added to this growing waiting list.
  As the demand for transplantation increases, the shortfall in organ 
donors for those with end-stage organ disease or organ failure will 
become even more pronounced. In order to narrow the gap between the 
supply and the increasing demand for donated organs, there must be an 
effort to encourage willing donors and create an environment conducive 
to organ donation.
  H.R. 399 accomplishes this objective by permitting the Secretary of 
the Department of Health and Human Services to make grants to States, 
transplant centers, qualified organ procurement organizations, or other 
public or private entities for the purpose of providing for the payment 
of travel and subsistence expenses incurred by individuals who are 
making living donations of their organs.
  In addition, the bill requests the Secretary to carry out studies and 
demonstration projects for the purpose of educating the public with 
respect to organ donation. These grants will assist the States in 
carrying out organ donor awareness, public education, and outreach 
activities, programs designed to increase the number of organ donors 
within a State, including live donors.
  Mr. Speaker, I thank the gentleman from Florida (Mr. Bilirakis) for 
his dedication in moving forward with this legislation. There is no 
greater gift than the gift of life. I also thank the gentleman from 
Louisiana (Chairman Tauzin) and my colleagues on the other side of the 
aisle who are very supportive of this legislation, and we were able to 
bring this up expeditiously.
  Mr. Speaker, I reserve the balance of my time.
  Mr. JOHN. Mr. Speaker, I yield such time as he may consume to the 
gentleman from Illinois (Mr. Davis).
  Mr. DAVIS of Illinois. Mr. Speaker, I thank the gentleman from 
Louisiana (Mr. John) for yielding me this time. I commend the gentleman 
and all of the members of the subcommittee, and all of those who have 
brought this matter to the floor.
  Mr. Speaker, I rise today in support of H.R. 399 and the need to 
continue awareness and education programs for organ donation. I was 
very pleased recently to be part of the 6th Annual National Donor Day 
at the Chicago Automobile Show on February 14 with the Illinois 
Secretary of State, the Honorable Jesse White, and Connie Payton, the 
widow of football legend Walter Payton. This is the single largest 1-
day blood, organ and tissue donation drive in America.
  However, we know that the drive and awareness brought to this great 
need

[[Page 5983]]

should occur and is needed to occur more than just 1 day during the 
year. I am proud to represent five of the six world-class hospitals in 
Chicago that are part of the National Marrow Donor Program's network of 
transplant centers, including Northwestern Memorial Hospital, Rush-
Presbyterian, Children's Memorial, the University of Illinois at 
Chicago, and Loyola Medical Center. These hospitals play a major role 
in not only making the public aware of the great need of donation but 
carrying out safe organ transplant procedures.
  This need is particularly present in the African American population 
where African Americans make up less than 10 percent of the 4.8 million 
donors on the registry. On any given day, more than 80,000 Americans 
are waiting for an organ transplant. That number continues to rise by a 
new name every 14 minutes. Each day, 63 people receive an organ 
transplant, but 16 people will die because an organ is not donated. 
Fifty percent of those waiting for an organ transplant are minorities. 
Almost a full third of those waiting for an organ transplant in the 
United States are African Americans; 35 percent of those waiting for a 
kidney transplant are African American.
  Some diseases of the kidney, heart, lung, pancreas, and liver are 
found more frequently in racial and ethnic minority populations than in 
the general population. For example, African Americans, Asians, Pacific 
Islanders, and Hispanics are three times more likely to suffer from 
kidney failure than whites. Native Americans are four times more likely 
than whites to suffer from diabetes.
  Some of these diseases are best treated through transplantation, and 
others can only be treated through transplantation.
  This legislation will allow States to receive grants to assist in 
organ donor awareness, public education and outreach activities, and 
programs designed to increase the number of organ donors within States, 
including living donors. It will assist in getting the word out that if 
one person does the simple task of signing a donor's card, 50 people 
will be able to receive an organ donation and begin a new, healthy 
chapter in their life.
  Mr. Speaker, again, I am pleased to support this legislation, commend 
all of those who had a hand in bringing it to the floor, and urge its 
passage.
  Mrs. WILSON of New Mexico. Mr. Speaker, Kyle is a normal second 
grader in New Mexico. But, when he was just nine days old, he and his 
family traveled to Loma Linda California for a much needed heart 
transplant. Every year, they make that same pilgrimage to Loma Linda 
for evaluations. It is 747 miles from Albuquerque to Loma Linda.
  The current regional transplant model with a national, government-run 
program results in fewer organs available to New Mexicans. While organs 
are shared over wide geographical areas, donated organs are sent out of 
state. I think this system has caused fewer New Mexicans to donate 
organs, and it has certainly impeded the decision of families to pursue 
a transplant.
  I applaud provisions of this bill which seek to educate the public on 
organ donation. It is by reaching folks one by one that awareness is 
raised. In New Mexico much of the public has misconceptions about this 
important issue. Since we have lost our transplant programs, many 
individuals decide that the travel distance, time, separation from 
family, and logistics are just too hampering. It is just too 
complicated and too much of a burden. We have some of the highest rates 
of Diabetes, Kidney disease, and Hepatitis B and C of any state, and 
yet our rates of transplants are among the lowest. We need hearts, we 
need livers, we need pancreases, and we need the ones we procure to 
stay close to home.
  I also reiterate support for the sense of Congress contained in his 
bill that refers to family discussions of donation. Encouraging such 
dialogues to take place will help make decisions early. There are 32 
states in which being designated an organ donor on a driver's license 
carries no legal weight at all. It is by communicating an individual's 
desires with family members that counts. Oftentimes, it is a point of 
crisis in which a family must make a decision whether or not to donate 
a loved ones' organs. If this is talked about beforehand, the desires 
of each family member can be made known. It is families that are 
affected by organ donation, and families that should make the 
decisions.
  Mr. STARK. Mr. Speaker, I rise in support of the Organ Donation 
Improvement Act of 2003, H.R. 399. The commendable purpose of this bill 
is to increase public awareness of the need for organ donation and 
institute procedures to increase the frequency of this brave and noble 
act.
  There is a serious shortage of available organs for donation. There 
are currently over 80,000 people waiting for an organ transplant and a 
new name is added to the waiting list every 13 minutes. As a result of 
the low rate of organ donation in this country, more than 6,000 people 
died in 2001 for lack of an available suitable organ. The passage of 
this bill and the implementation of its provisions will help to 
markedly reduce the number of such deaths in the future.
  I commend Representative Michael Bilirakis for introducing this bill 
and taking interest in this vital area. I encourage my colleagues to 
support this life saving legislation.
  Mr. UPTON. Mr. Speaker, I rise in support of H.R. 399, the Organ 
Donation Improvement Act of 2003, of which I am a cosponsor. Let me 
just mention one number, that for me, says it all about why we need 
incentives to increase organ donations across the nation. In Michigan, 
over an 11-month period ending on December 1 of last year, 2,420 
individuals were waiting for organs, and 164 people had died while 
waiting. These are our constituents, our families, our friends. I know 
the Transplant Society of Michigan, our state's organ procurement 
organization, is working hard to increase donations. But they could use 
a helping hand, as could OPOs across the nation. The Organ Donation 
Improvement Act we are marking up today is a very good start.
  As of September 2002, the organ transplant waiting list had more than 
80,000 men, women, and children waiting for a new kidney, heart, liver, 
lung, pancreas, or intestine. Unfortunately, an average of 17 people 
die every day, one every 85 minutes, waiting for an organ that could 
have saved their lives. H.R. 399 takes aim at increasing anatomical 
giving to help meet the critical need for vital human organs and give 
hope for life for those that have no other options for treatment or 
cure.
  The key to donation is public education and awareness. This 
legislation gives the Secretary of Health and Human Services the 
ability to award grants to States for the purpose of assisting States 
in carrying out organ donor awareness, public education and outreach 
activities designed to increase the number of organ donors. While there 
is a desperate need for vital human organs, the American public should 
know that there is also a continuing need for donated human eyes and 
tissue. Donation is the term used to describe the humanitarian act of 
giving to help another. Anatomical gifts include vital, life-saving 
human organs, sight restoring eyes, and repair and reconstruction human 
tissue such as bone, cartilage, tendons, skin, and heart valves.
  At national, state, and local levels, a partnership exists between 
the organ, eye and tissue bank communities. While all three communities 
are considered separate, given differences in medical criteria, 
training needs and distribution pathways, they are united in their 
message to encourage the act of donation. Organ donation saves lives, 
eye donation restores sight, and tissue donation provides skin grafts 
for critically injured burn patients and benefits thousands of patients 
in need of bone, cartilage, tendons, and heart valves. Without a donor, 
transplant surgeons cannot save and improve the health of even one 
individual.
  Every individual can sign-up to be a donor, regardless of health or 
medical condition. It is imperative, however, that individuals openly 
discuss their decision to donate with family and friends so that they 
may help honor their loved one's wishes and are knowledgeable about 
their options. Just one individual can save and improve as many as 50 
lives. Representatives of hospitals, organ banks, eye banks, and tissue 
banks work hand in hand to see that loved ones' wishes are respected 
and that gifts are properly handled for the benefit of others. I 
commend these organizations for working tirelessly toward this end and 
for their efforts to educate the public on the benefits of donation.
  In closing, I fully encourage all Americans to consider the 
altruistic act of donation and to make others aware of your decision.
  Ms. BORDALLO. Mr. Speaker, today, I join my colleagues in support of 
H.R. 399 to amend the Public Health Service Act to promote organ 
donation. I want to thank Congressman Bilirakis for his commitment to 
this cause.
  The advances in technology have increased the chances of survival for 
many suffering from life-threatening illnesses. But technology alone is 
not enough. In many cases, survival depends on some form of transplant. 
Sadly,

[[Page 5984]]

the need far exceeds the number of donors. H.R. 399 is a big step in 
addressing this serious demand.
  Educating the public about the need for donors and the ways one can 
become a donor is crucial. Many believe that donation only comes at the 
end of a life. But each year thousands get a new change at life through 
the generosity and courage of living donors. For the families facing 
the loss of a loved one, donation is a legacy of life and an example of 
the best of humanity in the face of tragedy.
  In promoting awareness of the need for donors, H.R. 399 offers hope 
to thousands waiting for another chance at life. I strongly support 
H.R. 399 and urge its passage.
  Mr. JOHN. Mr. Speaker, I have no further requests for time, and I 
yield back the balance of my time.
  Mr. SHIMKUS. Mr. Speaker, I have no further requests for time, and I 
yield back the balance of my time.
  The SPEAKER pro tempore. The question is on the motion offered by the 
gentleman from Louisiana (Mr. Tauzin) that the House suspend the rules 
and pass the bill, H.R. 399.
  The question was taken.
  The SPEAKER pro tempore. In the opinion of the Chair, two-thirds of 
those present have voted in the affirmative.
  Mr. SHIMKUS. Mr. Speaker, on that I demand the yeas and nays.
  The yeas and nays were ordered.
  The SPEAKER pro tempore. Pursuant to clause 8 of rule XX and the 
Chair's prior announcement, further proceedings on this motion will be 
postponed.

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